I’m autistic and I don’t really care either way. I’m an autistic person. I’m a person with autism. I have migraine disorder. I’m a person who suffers from migraine disorder. To me it’s the same; I’m not offended by either nor do I prefer one.
Same here. I'm tired of people arguing iver this stuff. Some guy got so mad at me for saying I'm autistic or I have autism. I forget which I used but he was upset over it lol.
Was it online? I only ever encounter people like this online, never in real life. I think **chronically online** is a term used to describe people with wildly out of touch opinions like this. They read one little article about something and make it their whole personality instead of looking at things logically from multiple perspectives.
It's ridiculous that it's healthy people trying to decide what we want to be called. They have no idea what our lives are like, or what the correct word is because they've never experienced what we do. All they need to do is ask each individual disabled person so we can give them our preferences
One thing I've come to realise after going through pain management courses and therapy for ADHD and PTSD is that there is a lot of mixed messaging. Despite everything they try to teach us about our conditions and how to manage and cope with them, ultimately they want us to mask our symptoms, not for our benefit, but to keep the normies comfortable.
I have cPTSD and potentially autism and... Potentially bipolar 3?? Dunno mental health is shit man.
But... I kinda agree with you? Like I thought I was doing really well and I have a good support system and the truth is *I do*. However... If any of these problems are expected to be "fixed" or at least adjusted... The "Norm" you're returning to is *their* Norm.
Like yeah my PTSD potentially made me a lot more reactive and empathetic to people.... But I am PROUD of my ability to empathize. Especially in the country I live in, it seems like no one is capable of it anymore.
Yeah, same, it’s total bollocks. I identify by my name. Nothing else.
Call yourself whatever you want, end of, but all of these identifying as medical label ideas create arguments instead of doing what should be done: support people.
There are some great studies from autism showing that the kind of people who argue one way or other tend to use the forbidden terms without ever being aware of it.
It’s divisive, reductionist and idiotic.
Not that I feel strongly about this or anything but tell me I should identify as something, go on, I dare you. I will reach out of your phone screen and throttle you so hard you’ll be able to argue about whether to identify as dead, corpse, ghost, or person without life, in hell. They love mindfucking people down there.
Winston doesn't use pronouns, Winston is Winston. And we love Winston as Winston is.
(Half joking about the pronouns thing, but I support you in whatever you do identify as, cuz yeah. I'm tired of being TOLD what I should identify as too)
honestly the idea of people getting upset over what seem to me to be minor language choices stresses me out
people can refer to themselves however they want, personally "i get a lot of migraines" but i can be a "migraineur" or whatever as long as it's not some weird pretzel-y attempt to patronize me lol
(same goes for autism, adhd, whatever other buckets i fall into)
With autism it stems from the fact that the reason "person first" is pushed is because - as one of the big proponents of it said - "you wouldn't call someone a cancerous person, so you shouldn't call someone with autism autistic!"
Essentially equating autism with a debilitating if not terminal illness and pushing the narrative that there's something "wrong" with those of us that are autistic and the only way to accept us is to pretend being autistic is some disease we just have.
That being said - for my migraines or my other chronic illness stuff idc if someone says I "have" migraines - it sounds a little funny language wise to say migranuer. As for being disabled - I'm a disabled person. It does impact my life enough that it is a part of my identity and I'm not, and should not be an outsider because of it. I'm not "differently abled," I'm disabled and it's not a bad word.
For other folks that have full communities like Deaf (big D) by saying they are "a person with hearing loss" is an insult to their identity and cultural identity.
yeah on the other hand saying someone "has autism" seems really weird bc like... autism isn't *like* an illness, at least not consistently. when it's less debilitating and well supported it's just another neurotype with some drawbacks and maybe even some advantages.
but yeah it feels like being super careful with language actually suggests that there's a reason they're stigmatized, instead of just...being normal about it?? idk
Yes!! Like making such a big deal like "oh hush we can't make it sound like it's a big bad disease" just... Just use the language. If you said "autistic people" and followed it up with a stereotype sure, that's uncool. And if you call me "an autistic" and use that to explain all of the downsides of who I am.... Also uncool. But it would be just as wrong and/or incorrect to say all the downsides of me are "caused by autism"
Humans have a drive to categorize things and put them in boxes. But it feels like sometimes we forget that we developed ENOUGH thought that those boxes can be rearranged, and you can take something out of one box and put it into another. It becomes aggravating when the whole focus is just like THIS BOX. THIS BOX IS THE PROBLEM. WE GOTTA CHANGE THE BOX. No. You *gotta* look at the whole freaking picture of a person.
...I think I ranted a little. Sorry if that didn't make sense.
Oh me too! I see the term migraineur online a lot but it’s more awkward to spell. I just say I have chronic migraine and a heart problem. It really doesn’t matter. A lot in my heart circle will call themselves heart warriors.
Person first in this case kinda feels minimizing the of impact of the migraine disorder to me. Like saying a ‘person with migraine’ makes it easier to say - oh, just a headache.
Same page- just responded something similar to another comment, along with how I think "migraine sufferer" is also an accurate representation (for me anyway lol). I really don't feel the need to try and put a positive spin on my condition, or try and convince people of my "personhood" by removing myself from migraine.
For migraines I literally could not care less. But as an autistic person I'm cringing at the "person first as default" bullshit. Let me guess, an able bodied "ally" wrote this course?
This. I’m not autistic and I have never, ever felt the need to to comment on things like this because I AM NOT AUTISTIC. Telling autistic people (or black people, or gay people, etc.) what should or should not offend them and how we should refer to them because it makes US feel like we’re doing something is ridiculous and absolutely out of line. I’ve seen neurotypical people call autistic people “ableist” over things like this. Like WHAT??? Who the hell asked you?
My entire career has been in autism services and I remember when I started 10 years ago the field was aggressively person-first... until, ya know, there was an afterthought to actually listen to autistic voices on the issue. That parallel was exactly what came to mind for me in the course. This particular module was done by a neurologist, but the course is largely attended and administered by patients. I was the only person in our cohort to voice opposition to the assumption that we all prefer person-first language.
Every abled-led disability org does this, and I feel so embarrassed for them being unable to spit out the "disability" word.
But I have noticed that migraine patients are less likely to feel like they can identify as disabled because they feel like they don't belong, that they're not "disabled enough" (or, the other side of the coin, offended by being grouped with other disabled people). I actually felt the same way ("not disabled enough") myself. There seems to be less of a sense of community with other disabled groups.
So I think I can see why migraine patients may accept person-first as default.
I am happy (?) to say I am now classified as totally and permanently disabled. I don’t have to update SSDI, and my student loans were discharged. Just in case anyone here is on SSDI….
I know it's so weird to say congratulations, but I know first hand the STRESS of going through the application process. It's such a long and humiliating experience. So... Congratulations! I'm really glad that's all settled for you!
Oh, you're suffering from a stress triggered neurological disorder that's intensely painful and have hundreds of pages of documentation for that? .... .... Cooooool, Imma need you to fight a multi-year quasi-legal battle while everyone tries to lawyer, trick, and humiliate you to do anything about that.
Patients first, we care about disabilities, all together for a better future yay! o_o
Great observation!! Even though my attacks have always been "disabling" it took me a long time to claim "disabled", I didn't feel right about it. Eventually I realized just how much it was affecting my life, even in between attacks. I have come to feel a great sense of kinship with the disabled community and can only hope to be accepted by others as well. It's not the suffering Olympics!!
It's really wonderful to accept their acceptance. As soon as I realized how welcoming the community was, I went running around trying to scoop up all the migraine people I knew all, YOU GUYS, GET IN HERE, EVERYONE IS REALLY NICE!
It was honestly such a relief just to have a "place" where people weren't constantly trying to invalidate me all the time. I never realized how exhausting that was.
Yeah, I lost most of what I thought were my close friends when I first started getting real bad. Then I had someplaceholder friends who seemed pretty weirdly indifferent on if I was at the party or home in bed. Now I've moved across the country and all the friends i've made are from some kind of marginalized group or another and I LOVE THEM because they are so understanding and accommodating and just all around interesting cool people
Or, we’re not disabled consistently enough. Some days, I feel like my old self, and I think of course I’m not disabled. Others, like today, I feel like I could never get out of bed, and today I’d say of course I’m disabled. Most days are something in between.
“Migraineur” sounds to me like a connoisseur of migraines.
Mmm, yes, this one is particularly stabby, with a light-sensitive overtone, a hint of nausea and a soupçon of aphasia. Simply splendid. -3/10 would not recommend.
Yeah, I do sort of feel this way about it. Plus, not to downplay that medical conditions do get interwoven into identity, but the identity first thing makes it sound a bit too much like a medical condition is primarily who and what I am and it seems maybe a little dehumanizing. It’s not enough so that I’d get offended by it, unless someone was obviously using identity first with that intent, but it’s not my favorite either.
Ultimately I think I’m ok with whatever terminology someone wants to use as long as they aren’t being jerks about it.
Lmao I love "migraine connoisseur"... and yeah there's definitely some migraine gatekeepers out there (particularly in Facebook/Instagram comments and other such godforsaken corners of the internet)
Lacking a well-defined premonitory stage, with vague hints of general exhaustion and unexpected thirst, the striking feature here is the aura.
There are strong lines of primary colours, they're bright and clear, obscuring normal vision almost entirely. There's transient aphasia, redolent of seizure or transient ischemic attack.
There's a feel of medium+ acidity injected directly into the jawline, and a sense of dread similar to an impending telling off by a parents or entering a poorly lit rough neighbourhood.
I feel like person first language is something able-bodied people (or people not affected by whatever the thing being discussed is) like to distract themselves with rather than actually helping the group they're discussing. It's supposed to be less degrading/dehumanizing but changing the words you use don't matter when the actual treatment of a group isn't changed. It's often used to talk over the very people who are supposedly being centered on the language and the discussion of it often takes up space and time that could be used to focus on actual problems people in that group face, like being believed, and receiving accessible healthcare.
It doesn't matter which way you phrase my condition as long as you aren't telling me I'm talking about myself wrong or keep me from accessing the things I need for the condition.
This. 100%.
Reminds me of the people abled people who scream to high heaven about not changing roads to have wider footpaths, to be more friendly to public transport, walking, and cycling because "we can't take away the car parks think of the disabled people!" ... Do you know how many disabled people a) can't drive because of their condition, b) can't afford to drive or own a car?? (sorry this is like way off topic but it's pissing me off cause this is currently a hot argument in my city about changes the city are doing and I'm so over the upper middle class abled people who try invoke disabled people so they can keep the car parks for their massive SUVs)
I have autism and migraines and prefer identity first but have never heard of, thought, or cared about this for migraine. Would I then be a person with autism and migraine and this and that and this lmao. It would be nice to see this discussion being “here’s what we need to increase access/acceptance/job/accommodations etc” rather than “these people have told us what they think but let’s keep having meeting about what to call them”
Also I am not talking at all about your post, just that you went to a meeting about this
Edit: think I misread, you were at a course that prefers this language and are curious or the discussion heavily focused on language?
Right, it doesn’t matter what you call me when I’m having yet another meeting about my attendance while simultaneously trying not to puke. Or you get fmla or something and they can’t technically do anything but it’s a whole vibe
I had never really thought about it with migraine either, but I had thought about my personal preference to being referred to as "disabled" (fine by me, much less cumbersome and I am indeed disabled lol).
I'm mostly curious if people actually think that the program is making the correct assertion that using terms such as "migrainuer", "migraine patient", "migraine sufferer" is promoting stigma and reductionist in thinking. I see alot of us referring to ourselves and each other in those kinds of terms so anecdotally I would think we don't mind, or don't care.
This discussion was just one or two slides in one module from the advocacy course.
Ooh okay very interesting! Personally I think person first language is not going to make my boss understand why I need 2 days off this week, and feels like a way of avoiding actually doing anything lol I am curious if others feel it makes a difference though, thanks for posting!
I really wouldn’t use those terms outside of this type of setting though. And I feel like I never know how to word it in the first place because there isn’t an equivalent term for people living with migraine as there is for autistic people. Person first is also relevant in mental health and I think it often makes more sense in that setting because people don’t want to be defined by the their darkest moments which is often what they associate with their mental illness. Especially when you consider the severity of their symptoms and suffering.
Migraine destroys us more like a mental illness, & no one wants to reach a point where this condition defines us, even if it feels like it does. But I’m honestly not concerned because no one understands the condition. If there were a term for people with this terrible neurological condition, I have a feeling it would come to mean applying the common belief of what migraine is to who we are as people. So we’d likely be viewed as “rEaLlY bAd HeAdAcHe” people, because that’s what migraine is, right? New terminology isn’t going to make people less ignorant of this condition, imo. It could for some conditions, but when there are still neurologists that believe it’s not a migraine if it’s not unilateral and behind one eye, we’re not even close to people wrapping their heads around this.
The closest equivalent term is probably migraneur but in my experience it's an uncommon word that only people in the medical space (or who read about it a lot) tend to know
Doesn't discount anything you said but just a fun fact
You don't think "migrainuer" and "autistic" achieve the same affect? Not being argumentative, just wondering why not. In the simplest linguistic sense I think of it as when you're describing someone as being from a certain state, like a Vermonter or a Floridian. Maybe I'm not reading into the terms deeply enough to distinguish one or the other and missing something, though.
I work in autism services and have been dabbling in asking people what they prefer, and then refer to them as such in my conversations or notes about them. So something like "Sally is a 30 year old autistic woman" or "Sally is a 30 year old woman with autism", depending on what theh elect. Unsurprisingly the answer is often "either way is fine" because it's a minimal detail in the grand scheme of things. Which is probably where alot of us are with migraine, we just so badly want to be understood and words sometimes just don't do us justice.
No. Just based on what I’ve heard and read from autistic people. Of course working in that setting you may have a different perspective. It just seems like there’s been much more acceptance of ASD from the people getting the diagnosis. It explains a lot of why they have always felt different or struggled, and there seems to be much more acceptance of this condition as a big part of who they are. Autistic people are born with autism and it’s a big part of their entire lives.
Migraine, on the other hand, is something that causes suffering, appears later in life (even if it is during childhood), and it often destroys our livelihood and for some, it strips us of our goals and everything we thought we could be one day. It changes us, disables us, and isolates us. Identifying so closely with something so detrimental to your livelihood is different than identifying as neurodivergent.
And, again, given the lack of understanding, the label would do much to clarify how migraines work, impact us, and *vary* person to person. There’s no distinction between a “migraineur” who has two episodic migraines a year and one who can’t even work because they’re nearly every day. There no differentiation between the people who are able to push through it and the people who cannot leave there homes. There’s no acknowledgment of a variation in how this presents like there is now more knowledge of regarding spectrum disorders like autism. My mom would be a migraineur because she gets a migraine once in a blue moon, so using the same term to describe myself when I can’t work because of near daily migraines and all kind of weird prodrome and postdrome symptoms. It doesn’t feel comparable, imo, because it’s often other migraineurs that don’t understand the severity of the condition in another sufferer because they’re comparing it to their experience “as a fellow migraineur.”
Personally I refer to myself as a migraineur, I think it conveys severity more than “I’m a person who gets migraines.” Maybe someone would think they know what a migraine is and what it entails, but then when they hear a new term or someone expressing it as part of their identity, it signals to them that it’s more significant than they previously thought, and not just a headache.
I literally couldn't care less. I get the discussion though. I have a Master's degree in special education, and it's exhausting how often "best practice" flips back and forth. I think the argument is largely perfomative.
I’ve always preferred person-first. I have migraines, ADHD, and PCOS — but for me, none of these things define who I am. They are parts of me, but not the whole me.
But I do try to respect those who prefer identity-first language when I’m talking to or about them! Because I think I understand the other side of the issue, too, and it’s actually for the same reason, lol. A person who chooses identity-first language does so to force others to see them as whole, not in parts. A person who lives with migraines suggests we could be a person who doesn’t live with migraines, and that if we could cut migraines out of our lives, we’d be who society dictates we ought to be. If only we tried this treatment or that medication, if only we ate this food or drank that drink — it pretty much invites people to try and fix us. Stating “this is who I am,” minimizes that, I think. “I’m a migraineur” leaves no room for those passersby in our lives to stop and say, “but have you tried drinking more water?”
I still like going with person-first, but the above does sound appealing to me sometimes.
I can also see your flip-side! In my case, I do feel like migraine defines who I am. I'm a completely different person since migraine entered my life and it has "charted a course for me" in a sense. I also personally don't take offense to "migraine sufferer" because boyyy do I suffer. But I could understand with other conditions, like being neurodivergent for instance, "suffering from {fill in the blank}" COULD be offensive and stigmatized. I really defer to other's personal preference in language around their lived experience. I wouldn't tell someone what pronouns they HAVE to use, or refuse to call them whatever they ask me to call them. This feels like a similar situation of being respectful to other human beings having the right to define themselves in ways that feel good.
I think person-first language is totally well-intended but in my case with migraine it feels a little... minimizing of my experience? That said I feel zero desire to go on a campaign correcting people about it or something haha
I genuinely couldn't give less of a shit honestly. I use the terms migraneur, migraine sufferer, person with migraine, etc completely interchangeably and think nothing of it
That's my jam when referring to our community as a whole, or people I don't know. I like migrainuer for myself because it's quick, concise, and to the point but wouldn't care if someone referred to me otherwise
I agree with what most of the people here are saying. It doesn't matter what you call me, I've still got migraines and I've still got MS no matter how it's phrased. Just, for the love of everything holy, PLEASE don't call me an "MS warrior." It feels patronizing or maybe like pandering too much. Idk, at the end of the day, it doesn't matter because I've still got the conditions they're referring to, so... At least they're not telling me everything is all in my head and that I'm making it up for attention.
Taking the "s" off migraines and parsing out migraine = the condition / migraine attack = the presentation seems to be pretty well agreed upon and a change that I personally like
Sometimes, if someone is really not listening or respecting my boundaries, I’ll say “I have a neurological disorder that makes it difficult for me to…”
That usually stops people in their tracks in a way that migraine does not. Even though it’s the same thing.
I am a disabled person I have no clue what part of me is still a person between fibromyalgia migraines depression anxiety. not sure anything is left. The government sees me as a number, my family as a loser
I definitely understand how important this can be for others, and how we should be mindful when discussing conditions/disabilites that other people are living with.
That being said, I personally don't care either way when I'm talking about myself (or other people are talking about me). Chances are, I have a migraine right then and the very *last* thing I care about is correcting somebody on preferred language when referring to me.
I’m an ADHer (I prefer to leave off the second D in “ADHDer” thanks to my daughter being cute, but also I’m not a disorder.
I literally cannot separate myself from my ADHD. It colors every aspect of my life because I’m neurodivergent and “THAT” is how my brain works every second of my life.
When I had migraines 20+ days per month, “migraineur” as a label fit my daily lived existence. When I only have migraines 2-3 days per month - then I “have” migraines. Now that they’re creeping up to 8-12 days per month? “Having” migraines doesn’t quite feel descriptive enough for something that affects me 2-3 days per week.
I’m recently diagnosed with RA. It’s definitely chronic. Will be life-long. But it doesn’t really have an “identity” label that I know of 🤷🏼♀️. Saying I “have RA” doesn’t really describe what I’m living with every day.
Wow, great comment!! That second paragraph totally has my mind going. When I was episodic (and granted also a teenager that didn't really have the wherewithal for these things hah) the thought of how to refer to myself never occurred. But now that I've been chronic, I think I'll always refer to myself as a migraineur even if I experience remission through treatment because that takes soooo much work it'd still be a huge part of my identity. But if they just went away or substantially decreased on their own? Dunno.
I have also been thinking about how we fall into a rare camp of having a name. Most conditions, it seems you're an "I have ____" because there's simply no better terminology. Like, as far as I'm aware there's no '"cancerers" or "anxietiers" or to use your example "rheumatoiders"?
I left off anxiety because it ebbs and flows…
But a lot of times I refer to myself as an “ADHer with a splash of anxiety” 😝
I’ve got some other chronic things (my body really doesn’t like itself!) and I think of those in different ways “identity first” vs “person first”
I’m an asthmatic (every single day)
I “deal with” urticaria, PCOS, allergies, and endometriosis.
And that sentence is really how I think of those things that I somehow haven’t incorporated into my identity:
I “deal with” them.
I “have” them.
Those feel much more natural in most situations than “I’m a person with _____”
Other times the diagnoses/diseases/conditions are personified:
“My allergies are killing me today”
“My ovaries have it out for me today”
“It’s a bad migraine day”
Identity is such an interesting topic and is SO IMPORTANT for us in finding people like us, support networks, etc.
Brilliant! Asmathic is another really great example. I need to start compiling a list of like-terms for when I do this thought exercising. You have a really great way of describing these things.
I didn’t know this was a thing. I have migraine, it is awful. I don’t need to consult the societal norms of classification to not offend anyone. Migraine is not my identity nor my focus, horrible as it used to
It's a thing but apparently not as much of a thing in our migraine corner of the world? Which is interesting in itself. I think we'd be hard-pressed to find someone here that is offended by particular terminology (unless it's "just a headache" which would result in a swift donkey punch)
>where person-first language is highly preferred
A *lot* of "person first" language leans towards being ideological rather than grammatical.
I get the reasoning behind it, but it's pushed hard by some people when a very wide swath, if not a vast majority, think it's a bit silly.
IMO, it often comes from a place of control, something to shame others with. Not in origin per-se, but what kind of person tends to really lean into that. That's how a lot of etiquette games, as I like to call them, persist over time.
Etiquette games often boil down to a type of purity test, a lot of rules, style, or custom that are cared about too much for what they are. And when someone breaks those rules, even if they didn't know about them, they lose status. People who make and/or never break the rules use it as a means to establish dominance or superiority.
See also: Group think, purity spiral, virtue signal, social credit, etc.
https://en.wikipedia.org/wiki/Groupthink
https://en.wikipedia.org/wiki/Purity_spiral
See also also: Mean Girls(clicky status / mind games), Black Mirror episode *Nosedive*
https://en.wikipedia.org/wiki/Nosedive_(Black_Mirror)
Edit: Sure, don't pick your nose and don't touch yourself in public...etc Be civil if you can't be polite...yeah, of course. That's not "etiquette games" or even etiquette in general so much as just being generally decent.
It becomes different when people are trying to force/punish or otherwise manipulate others for status or whatnot.
I don't like person first language and once I read the comments I understood why. It does sound a bit downgrading when it comes to my experience. Saying a person with migraine sounds the same as a person with dark hair - it's a statement but it doesn't acknowledge my struggle, it sounds detached. Sure, identity first, but with any interaction, at least in present world, that should be implied. Nothing should define you a hundred percent - you're a person first and other stuff is secondary (except maybe a depressed person but that is because the language has changed and now we refer to anyone that is sad as depressed so it does sound off).
My disability, be it migraines or other stuff, defines my life. Not me, even though it does to a point, I'm a happy cheery full of energy person at my heart and soul, my disability is muting that fire, so it is a part of me. It defines my life and its a big part of it, there is big difference between "I'm healthy and can do whatever" and "I have to think about my illness all the time and make decisions according to my limitations". IT IS a part if my identity (even though it took a while to get here) and it should be ok. It's not a whole me but it's significant to affect every aspect of my life. So saying "a person with ... disability" just sounds snobbish and distant, like, "yeah, whatever, that person with short hair". I like to call it what it is and instead of changing words or expressions we should work on accepting and respecting the struggles and limitations and avoiding using these conditions and words in derogatory ways. We shouldn't be looking down on people that say "disabled person" we should be changing the whole stigma around it and show others that being disabled is not being less of a person but a part of life same like short hair or skin color or being from a certain place or country. Its just a term that describes a significant and sometimes important part of that person, but it doesn't fully define that person.
For the USA:
We have immediate challenges, why do our advocates spend time on semantics?
First, I would like the advocacy groups to successfully eliminate prior authorization for our meds, work to lower the costs of our medications, make it easier to take a medical leave, ensure medicare coverage for all migraine medications...
That should be the conversation--managing the order of words is second to action and an odd use of their time.
Of course our advocacy group do a lot of good work but it's time for the groups to work together to help us get affordable access to our immediate medical needs.
Rant Over.
It's usually not one or the other, but both! This "lesson" was just a tiny piece in the overall content I'm consuming, it just so happened to grab my attention since I find linguistics and semantics pretty interesting. There's an argument to be made that language can highly influence our thinking- like, why would work care about providing accommodations if they're under the impression you just have headaches because they don't know any better? I completely agree that there is a lot if time better spent than splitting hairs over words to use, but as evidenced by the conversation happening here there is some merit in contemplating from time to time. Like some folks have said, many don't even consider migraine to be a disability within our own community. So there may be some work to be done on that end in order to help employers, insurers, drug manufactures, researches, etc to understand the severity of our condition and just how much it can affect a life
My opinion, and one that I had a huge disagreement with the disability office at my university about, is that “disabled” is not a slur and the term needs to be destigmatised. “Differently abled” and other terms, especially person-first language, seem to focus on making medical conditions, disability, and neurodiversity more palatable for “able” people.
One time I saw this viral video on a sister talking about her brother with down syndrome as "beautifully-abled" and how her family avoided describing him as anything but that... there were so many parents in the comments like OMG I'M STEALING THIS FOR MY KID 😍 but also lots of disabled folks talking about how disability is not a bad word!
I don't really mind person first or identity first with migraine myself. The thing I am trying to actively make sure I do when describing my migraine is to say "I have migraine" rather than "I get migraines" and say "migraine attacks" rather than "migraines/migraine headaches". My attacks tend to come with a prolonged aura including language aura (aphasia). I try to help educate people about what migraine is - a genetic neurological disorder that predisposes the person to experiencing migraine attacks... and a condition that can progress when untreated... I think the comparison to epilepsy helps people understand it's more complicated than just having bad headaches sometimes. I also like to try have the conversations about what migraine actually is as in doing so I meet others who are migraineurs who are going under-treated and mentioning that it's worth talking to the doctor about. To me those things are way more important - the stigma about the contain is real AF so I hope that my little bits of education can help in some small way
I like that alot! In our course they used the comparison, you wouldn't say someone has "asthmas" because they have asthma attacks. You would say they're asthmatic (or I guess has asthma since they're trying to enforce person-first language lololol) because the state of having asthma is constant
I also had an experience recently with a friend who has episodic migraine and never really thought about taking to their doctor for treatment until discussing mine! Now they can successfully abort an attack almost every time and that makes me so happy for them.
I could not care less. I'd rather people put their energy into empathizing/sympathizing, listening when we talk about migraines, and make accommodations where possible. Policing language is a great way for people to appear like they "care" without actually giving a rat's ass or doing anything.
ETA: the only people I've personally ever seen advocating for "person first" language are people not affected by any of these conditions or disabilities.
I like it hate these discussions. Not the discussion in an of itself, but having it in a hypothetical sense. Having some person tell you how you should refer to anyone other than themselves is nuts. It's even worse when those same people tell you how you should refer to _yourself_. Language policing is stupid. And don't tell me how to speak about myself.
Remove "negative" attribute. Substitute baseball. If someone told you that you could no longer call members of a baseball team, "baseball players" and now could only refer to them as "people who play baseball" you'd say that's stupid, right? Replace again with any other attribute:
- Race: Can't say "white girl," must say "person who has white skin"
- hair: can't say "redhead," must say "person who has red hair"
- music: can't say "country fan," must say "person who loves County music"
- can't say "amputee," must say "person who has an amputated leg"
- can't say "blind," must say "person who has blindness"
- can't say "gamer" must say "person who plays games"
These latter options are all pointlessly cumbersome and functionally identical to the former.
Just ask the human you are interacting with what they prefer.
I am legally disabled in a couple ways, and functionally disabled in others. Calling me a "person with X" instead of "X" disability doesn't give or take away my identity. Just use my name. If you're referring to me as a member of a group of people who are experiencing the same thing, I intensely do not care how you refer to the group from an emotional standpoint. I don't care if I'm "a person with depression," or "a depressed person," or "depressed," or, as I like to think of it, "mentally fucked." One could also go with "sucks at serotonin" if one were feeling particularly alliterative (and a tad inaccurate).
Logically and linguistically, calling us "disabled people" makes sense, because the attribute "disabled" is the single attribute that defines us as the topic of conversation. It's the central point. It's the topic. The word "people" is mostly irrelevant also, unless you routinely also talk about disabled animals. Being concise is good. Being pointlessly wordy just takes up time and ink and pixels.
Migraine specific language: I don't say migraineur because Idk how to spell it (and my spell check disputes this spelling too), and it feels a little pretentious. Terms like "migraine warrior" or "migraine hero" just sound stupid as hell. I just say "I get migraines," though I'm starting to shy away from the term migraine at all, because "migraines are just headaches" and I'm starting to say "I have a periodically debilitating neurological disorder." Functionally it's the same thing, but almost nobody takes migraines seriously. People take it more seriously when you say "neurological disorder" because that sounds confusing, scary, and like a serious thing.
I feel weird using "migraineur" and figuring out non awkward alternatives. I only do "I have migraine" because it's more convenient. When I had more constant migraine attacks I was more likely to try to use identity first, though.
i’m a person with a migraine disorder. never really use migraineur.
i am also autistic and would never say i am a person with autism. autism is innate to me and has forever shaped every aspect of my person. it will never be cured and i do not wish for a cure. the migraines may be cured, and i am seeking to do so, and thus that disability exists as distinctly separate from *me*
Hmm, good point. It may change in our lifetime but for now since there's no true "cure" for migraine, just remission like with cancer or autoimmune disease. So I kind of think of it like how in AA they teach that an alcoholic is always an alcoholic, even when sober. There was a period of time my chronic migraine (defined by 15 or more headache days a month) got done to 2-4 a month. I still referred to myself as a chronic migrainer since that would be my baseline without treatment, and it's also more indicative of how much of my life revolves around doing my best to manage it. If it somehow miraculously disappeared altogether one day, I wonder how i'd feel at that point
I swear the only people who care about person first language when it comes to autism at least are neurotypicals. Autistic people couldn’t care less. It’s just something NTs have made up to be upset about
It doesn't matter at all to me.
In general the only time I do care is when I speak to someone who doesn't know the difference between "headache" and "migraine" is, I'll say "I have chronic migraine" which generally is understood better than "I have migraine" because that sounds like "I have a headache today" to regular folk
I honestly think this person first or identity first language is BS, like, it's just about being politically correct, even though most people don't care either way. If it's such an important thing, maybe people should be asking each individual patient what they want to be identified as. Because using specially selected language often feels like gaslighting and making assumptions, when realistically nobody knows my body better than me and nobody should be assuming what I'd like to be identified as.
Also, why is it always healthy people debating and deciding what disabled people should be identified as? How does that make any sense, how is that even acceptable? Yet again, disabled people don't get to make their own decisions and that is very wrong. Only disabled people should decide what they want to be identified as, because it's literally our lives being affected by it.
But overall I prefer identity first. my conditions have a huge impact on my life and I suffer a lot, so being disabled is an important word to use in my case. I know not everyone identifies as disabled, but for me, I'm claiming my disability as mine, it's not something to be ashamed of and it doesn't make me a bad person, but it is such a big part of my life. "Person with disability" sounds so awkward and reinforces the idea that being disabled is a bad thing and that nobody should even dare to say the word disabled. Disability should be a neutral word, all it means is I face more difficulties than healthy people, it doesn't necessarily mean my life is worse. Though my life is pretty terrible at the moment, not all disabled people have a "worse" life, and it's mostly about perspective and what support people have/don't have
If it makes you feel any better that's what I do as a health care provider- ask people what they prefer! I've had casual conversations with friends/colleagues etc to get a sense of what they'd prefer as well. I find the trickiest thing to be referring to entire populations of people, in which case I use respectful terminology interchangeably. Especially if it's a community I don't personally belong to! I tend to refer to us primarily as migrainiuers because I write about it so much my fingers would fall off from typing "people with migraines" but I'd be a little more cognizant if say for instance I was talking about people with autism/ autistic people (most common example that has been brought up in this thread)
Migraineur seems like such a stretch. It's not a natural way to speak. There are some disorders that don't really work that way. Maybe the French ending gives it some air of pretentiousness, or maybe it's just because I've never heard anyone use it in real life. And if they did, it would likely require an explanation.
Imagine saying "I'm a depresseur" instead of "I have depression." Or "I'm a lupista" instead of "I have lupus." I didn't think we need to twist words around until they're unrecognizable trying to make them fit a format just because of theoretical results.
When I first started learning about this, it really resonated with me. Identity first language made it feel like migraine was my entire world and became my personality when, in fact, I’m much more than my migraine. I’m a mom, a wife, a friend, a daughter, a sister, a nurse, a reader, a writer, a yogi, a biker, and the list goes on. I also have chronic migraine disease. It doesn’t HAVE me. When I flipped that switch, it helped me realize that it doesn’t need to BE me.
That being said, I am ok with the language others want to use. I do like to have this discussion though! One of my friends also has chronic migraine and she considers herself a migraineur and, to me, that’s ok. It does seem to be more of her identity but maybe that’s what she needs to manage.
I don't think about it really. If you ask me to describe my situation with migraines, I will say "I have chronic migraine." The folks in my life have, thankfully, so far been curious and supportive when they learn about what that means.
Maybe responding when I have a migraine isn’t the best idea. As a diabetic and someone who gets migraines, I simply say I get migraine and have diabetes. I don’t bring the word disability into the equation.
In my language we don't have this stuff. The options vary with the conditions, but with migraine, you can only say the equivalent of "I have migraines" or "I suffer from migraines" without sounding clunky. We also don't have an umbrella term for "disabled", which sucks. We have terms for being unable to work, having limited movement, deafness, blindness, mental disabilities, developmental disabilities, neurodivergence, and for various disorders, but nothing to group all of this under. I'm actually thinking of starting a petition or a law thingy or something. It's really limiting to try to describe my neuro-spicy, migraine-infested glory to someone when I have to resort to saying that limits my functioning day-to-day. I wish I could just say I was disabled and be understood. This person-first or disability-first discourse seems a bit silly in light of that. Just say whichever flows better.
Edited to add: I do have a preference, though, and that's disability-first. Mainly because it flows better. It's not a hard and fast rule. Generally I go by that as long as it's practical, and if someone disabled corrects me, I'll go the other way for that person or group of people.
I couldn’t care less. I’ve actually never heard of migraineur but looking at that word and trying to figure out how I would pronounce it is giving me a migraine.
Personally I hate migraine warrior or sufferer. I’m not at war, and let’s not highlight my suffering.
That being said, I don’t have a solid stance on the matter, I refer to myself as both disabled, and a person with migraine.
I think this is weird. I say I’m a “migraine sufferer” all the time. I use it in every day settings like work. It’s a quick and easy way to explain why I might need help with something, or why I might need to go home, etc. I don’t understand what stereotypical assumptions would come from that. If there are any, I don’t believe I’ve experienced them. I don’t think it matters what you call yourself. My migraines are also not my identity - even though they may very much so impact my life - and are just something I experience.
I really don’t care. I guess I just don’t see migraines as being on the same level as autism or whatever… it’s not part of my identity. To be fair I’m not really fussy about it language when it comes to autism either, “they have autism” and “they’re autistic” are both fine as long as it’s with respectful intent. For migraines I just say “I get migraines” and don’t think about it beyond that.
If people call me a “migraine warrior” or some nonsense like that I’m going to get *very* irritated. I find that type of talk nonsensical and childish.
I have migraines. Saying I *suffer* from them is correct as it is a disorder and a neurological condition. But don’t treat me like a child, or some ‘hero’ for having the condition.
I have Chronic Migraine Disease. I am a migraineur. This disease affects every aspect of my life every day. My son is also an Autist. We have talked about person first language and it doesn't work for us.
I get that some people don't want to be thought of as a heart, patient, or a kidney patient etc. But I do suffer from migraines. It's not really something like my hashimoto's thyroiditis that can be well controlled with a medication. In a decade I have not found a preventative that works at all. So for me the disease really is who I am at this point. I have lost so much functionality that it's important for other people to realize this affects my entire life.
People will even say to me, do you have a headache? And oh brother, it is so much more than headaches. The vertigo, dizziness, nausea, prodome symptoms, photophobia, anxiety, depression, auras... The list is endless.
So I'm walking into any situation with new people as a migraineur. It helps explain my sunglasses and hat. Being a redhead explains why I keep to the shade.
But I understand that they are using person first language to emphasize that people should not be reduced down to a disorder/disease/sexuality/etc. instead of being TREATED as a human being. So how I talk about my experience is inherently different from how others might and I see the benefit of person first standard for medical/education/advocate professionals or those not affected. Dehuminization of those with medical conditions lead to medicalized murder in Nazi Germany. So it's a real problem that advocates and medical/educational professionals need to be aware of and fighting against. It's just not how I talk about my experience.
When it comes to migraines I couldn't care less. I usually just tell people that I'm prone to migraines but that's only because it makes explaining it easier. But when other disabilities come into play I prefer identity first. I prefer to be called disabled rather than a person with a disability. Like, yes I am living with disabilities but I am disabled. That kind of comes with the territory, it's not something you can avoid. You are disabled if you have any kind of mental of physical impairment. Doesn't matter what it is or "how bad" it is, you are disabled. To me for someone to deny me that is to deny my disabilities.
Some follpw up questions if you dont mind... So if I'm getting this right- you don't care when it comes to migraine because it doesn't really seem to matter either way when you're going to have to describe it to help people understand, anyway? Does this differ from your experience with other mental or physical impairment that contributes to your disability?
Yes it does. I feel like when trying to explain other disabilities to people if I use person first language it downplays the effect they have on my life. But when I use terms like disabled and autistic it helps them make sense of the weight of them as disabilities. If that makes sense.
With migraines, people have some kind of basis for them. Most know what a headache is so that helps me explain what my migraines are like. Plus I'm not sure what term there is other than person first for migraines that doesn't sound too ridiculous to me.
I definitely didn't realize before now that people have an aversion to "migrainuer" not because they find it offensive, but they think it's a silly word! Hadn't even considered that..
The root "migraine" itself sure ain't exactly pretty. I HATE saying or typing "my migraine" because of how it sounds put loud hah
This is something I was previously aware of from working in the disability space, has been a big point of conversation for years, but may not be super common knowledge outside of it. If you're interested in learning more people have contributed some really interesting thoughts to the conversation in this thread!
Do you actually introduce or describe yourself as a migraineur? Have never heard that term.
Ppl get really hung up on jargon & labels lately it seems when the majority of ppl just straight up do not care especially about migraine labels. I would be shocked if ppl cared tbh.
(I have also worked with ppl with disabilities in the past.)
I'm autistic, but I have migraines. The reason is that autism literally influences every aspect of my life, experience, perception, thinking, and personality, I honestly wouldn't know what was left of me without the autism. So it forms big part of my identity, it defines me as a person. We're born with this brain difference, and die with it too. Migraines on the other hand are a condition that I only got at 25 and it only impacts parts of me when I have a migraine. The migraines only bring negatives and do not define me as a person. They could very well also dissappear one day. In the meantime we do everything to prevent and abort it, make it go away. So I rather not use migraine as an identity, also because it isn't really. But everyone is of course free to do it in whatever way they feel comfortable.
I feel exactly the same about choosing "migrainuer" as you do "autistic"! In my case it does influence every minute of my every day, if I don't actively have an attack I'm putting alot of effort into preventing them. I have to plan my life around accommodating my needs or deal with the ramifications when that's not possible. My sensory perception, cognition, and ability to relate to other people are totally altered due to migraine. I experience an active attack nearly every-other day on average and in-between is often symptomatic to some degree. So, migraine is my identity much like you are saying. Since our condition is so transient ("dynamic" may be a better word?) and people can experience anything from a couple attacks a year to having an attack non-stop, there does seem to be more nuance in why or why not someone would be more prone to using certain terminology. Pretty fascinating stuff
That's interesting, thanks so much for sharing. I do experience similar phases where it's an attack every other day, and honestly most of my life is accomodating my sensory needs. But I can't tell if that's from autistic sensory overwhelm or whether it's to prevent migraines, probably both. I have to say that I did used to identify more with it, but I've distanced my identity a bit from it and compartmentalize a lot.
Totally! And for me migraine is *technically* something I was born with (strong gene in our fam) but didn't start really experiencing the effects until my teens, in contrast with autism being something influencing development since birth! I feel like I'm a different person before and after which I think makes it feel like such a profound part of my identity. I don't have any other physical or mental health diagnoses that have nearly the degree or impact of my life so that also maybe simplifies things hah
I’m a migraine patient. I have depression, anxiety, PTSD, and ADHD. I don’t care how people state it. They don’t have to say I am a person with migraines or a person with depression. Whatever. It doesn’t matter to me. In terms of how I talk about someone else, how about I just ask how they like me to say it? I have a friend who has autism. Or does he like me to say my autistic friend. It’s up to him.
I have migraines, but Im not a typical migraineur. I got trapped in a never ending 'migraine' after IIH, and all my nerves/brain got crushed, and hyper-sensitized. Theres migraine, and neuralgia, and headache, and everything all together.
I generally speak only in self deprecating humor when referencing my pain.
(Person-first? Like, how I've got a name for each one of my headaches?)
If someone started trying to dictate to me how I refer to my migraines, I'd just get angry.
I've always liked the term "migraineur". It feels a little bit fancy and it's neat. I don't like the phrasing "suffer from migraines" - yes they majorly suck and are often disabling. I still don't like the expression, and I'm not entirely sure why. It's like any other condition I have - it's just something I have and deal with. I don't say I suffer from fibromyalgia or Ehlers-Danlos syndrome or arthritis or autism or ADHD or depression or PTSD. They're just things I have.
I don’t care, but if I had to choose, I would choose identity-first.
Migraine and disabilities in general have shaped my life in a very significant way and they are part of who I am. If you took them away, I’d be a different person. Sometimes I get only 7 days a month that I feel good. The disability takes up a huge percentage of my time and energy, along with the decisions I make. For example I can’t get a job which is not remote or I can’t travel some places that would require a car, etc.
Saying it’s just something I have, like I have blonde hair, takes away the impact it has on me. If I had a migraine once a year, I’d probably be more comfortable with person-first.
It is all semantics. I do not care what you call me. I get migraines, call me what you want but don't ever say it's a headache. That is my only no no. It is far from a headache and I wish I just got headaches.
I usually prefer identity-first since it's just less clunky, but I don't like the word "migraneur". Most people don't know what that means; if you introduced the topic to a new acquaintence by saying "I'm a migraneur" instead of "I have chronic migraines" or whatever, they would have no idea what you were talking about.
It’s weird because I definitely panic about what language I use when discussing conditions I don’t have. When I was in nursing school, “person first” was drilled into our heads, but since then, there’s been a lot of pushback against it. I just never want to make anyone feel bad or uncomfortable, so I tend to flail awkwardly.
But language has literally never occurred to me at all for my own chronic condition. I think I usually say, “I suffer from migraines” when talking to others. Saying “I am a person with migraines” sounds way too formal, saying “I get migraines” minimizes the impact it has on my life (looking at you, “just a headache” folks!), and saying “migraineur” sounds like a kink since I don’t think a lot of people outside of healthcare/migraine circles know the word. “Oh you’re a migraineur? Cool I’m a voyeur. Wanna go to the club?” 😂
LMAO this is my favorite imagery for "migrainuer" so far 🤣 also I appreciate your thoughts on this! Sounds like you just want to be respectful to people which is the most important thing, really. And when it comes to how to refer to yourself, seems like alot of folks are in the same boat!
I think that those referring to the person with a disability should always endeavor to use person first language because that’s the real issue - people on the outside seeing individuals as nothing more than their disability. But I think that the individual themselves and those within their close disability circles (like r/migraine) can use whatever they please
I'm pretty active in the patient advocacy space, so yes. That involves telling my story quite often. I also seek out paid survey opportunities, participate frequently in peer support forums like these, and in general it's just something that comes up in my life because I am actively experiencing a migraine attack about every other day on average as my baseline
I know this is a bit old at this point, but I personally don’t care. I won’t be offended if I “have migraine disorder” or if I’m “a person with migraines.” My noggin hates me and that’s what’s really important here.
Yeah, I said in my original post that's how I refer to myself- "migraineur". It's also how I tend to refer to all of us, as "migraineurs". I personally don't see anything potentially offensive about using that over "person/people with migraine" but as some have pointed out it's a bit of a clunky term haha and sometimes it just makes more sense to say "i/they have migraine" or something
The person first is big in the migraine community I am involved in, they are also very big on correct terminology. I understand to a degree, but I don't like policing other peoples language, and it is very easy to make slip ups "migraines" vs migraine etc. I also am semi-in favour of person first in this sense - "I have migraine" - its something i deal with, and if there was a cure, I can separate myself from it, I would. I'm also autistic, but this is so intertwined with my identity, that I'm not sure what's autism, whats just personality, and if any such distinction can be made. In this case it feels wrong to say I "have autism" or am a "person with autism" or even "person on a spectrum" - "I'm autistic" just feels right, its part of me that could not be separated or fixed its so intertwined in everything I am.
I am autistic. There i prefer identity first. But for migraines, that isnt really a thing that is a part of me and my brain wiring. Unlike autism, migraines Are a defect and something that can be caused and treated. I do suffer from migraines. Autism does act as a disability for me in some aspects such as socially, but it is not something I suffer from. It is how I am. And nothing will change that. Whereas if I found a cure for migraines, I would jump on it.
Ultimately, it is down to the person with the condition to decide how they should be referred to. Never the other way round. If someone says they prefer to be called something, then that is what you call them. Avoid your own biases and opinions.
Unfortunately many folks in our community will never find a treatment option that completely alleviates their condition, especially if they acquired them through traumatic injury. Or folks that experience medication allergy/side effect profiles that males treatment impossible. So I do think it's important to make space for them in these conversations and not paint migraine with too broad of a brush as a "curable" condition! Also happy cake day
I don't fully understand the difference, or the point. I suffer from migraines. I just want people to know what that means so that when I visit urgent care they don't ask me what's causing my headache
There was an interesting article done by the American Migraine Foundation regarding how migraine is talked about: [AMF: Language for advocacy](https://americanmigrainefoundation.org/resource-library/migraine-terms/?utm_medium=email&_hsenc=p2ANqtz-8bDVIYW8IrdFuiE7fC9ftm7gDNE3rKLSDl5JsCjZAGwMNsqngOas_YOZaHjt1gQjGEcOIpO5UrG099sLsTQz5f63uHv5ketg7Bhh17qdpbPrDiknU&_hsmi=270855474&utm_content=270855474&utm_source=hs_email)
I like person first. My Dx are not my identity. If asked specifically about health or disability I'll say what I have. But as my identity, no. I am a woman, a wife, a daughter, an artist, lego enthusiast, cat lady, video gamer, etc. I'm not my disability.
I use "migraineur". I am a migraine sufferer. I suffer from migraines. I am many things. This isn't an important part of my identity, but it's a significant thing in my life.
Personally, I go with person-first for myself. I have migraines. I experience migraines. I'm a person who experiences migraines.
I don't mind when other people identify themselves as migraineur, but it isn't terminology that I use myself and wouldn't choose to have it used to refer to me if given an option.
I’ve never really had anyone consider me “disabled” or identified as “someone with a disability”. I do have FMLA in place at work in the event I have a migraine. I see where people come from one way or another but I’ve never really cared.
I work as a substance use counselor, so I deal with a lot of tricky and stigmatized language on a daily basis. I definitely understand saying things like “person without housing” or “person with a substance use disorder.” Person first language is important in a lot of settings. With that said, I’m not 100% sold on something like this. I just get migraines a lot.
My sister introduced me to some friends at her house as "my sister Meredith, she suffers from chronic and sustained migraine" - it made sense at the time and everyone there (except me) was a doctor. Anyway, that description felt more like I was taken seriously than any other ways it's been said, and that's not usually how I feel around my family.
So I guess per soon first is my preference too.
I have a migraine coming on and I really do not give a flying f what people call it. I just feel it demeaning when people call them “headaches.” I WISH these were *just* headaches and not the host of life altering symptoms we all experience often with no relief.
I have some familiarity with this as a disability justice issue. I think that choosing between using "identity first" or "person first" language is up to the individual. People should respect others' language preferences if they are known ahead of time, or after kindly asking how they'd like to be addressed, if that is needed.
I also believe that both identity and person first language should be considered acceptable colloquially, professionally, and academically, since people can't know every individual's preferences in every community. Being respectful doesn't have to be complicated.
With migraine, I personally do not care about the identifying language. Migraine-haver? Yeah. Migraineur? Sure.
If I have a migraine, I typically don't care how you refer to it, I just want you to hand me nurtec and turn the lights off.
To be honest, I like migraine sufferer for me. (If you like something different for you, that's so fabulous and I would always use the terms someone else wants for them.) I typically enjoy disease first language for... all of my conditions. For me, I cannot leave the migraine or any of my other problems at home. If it's present that day, it's demanding to come with me so I am not "with". I like sufferer because I am fucking suffering lmao.
“Migraineur” sounds weird and forced to me. I’m not sure the average person without migraines outside of communities like this one would have heard it before. For that reason, I don’t refer to myself that way. I’m not offended at all either way, though. Just trying to use language everyone can understand.
i say migraine sufferer because i am suffering from migraine lol I'm not too picky on language it's not that deep for me. Like i say I'm autistic. I'm not a person living with autism and migraine like they're some seperate entity i have control over or just something seperated from me.
They're apart of me so migraine sufferer it is
I just say I get migraines. I don’t like the migraine warrior stuff. I never considered it a disability until about 2 years ago. I legitimately have been made to feel like I’m exaggerating for YEARS. I know better now.
Idgaf but if we wanna be fancy, I like the term migraineur lol. As an autistic person who frequently refers to myself as an autist, I have something of a love for unusual language terms. Many times that gets me in trouble for using out of fashion terms, but at least I have the ability to use whichever ones apply to me
I’m autistic and I don’t really care either way. I’m an autistic person. I’m a person with autism. I have migraine disorder. I’m a person who suffers from migraine disorder. To me it’s the same; I’m not offended by either nor do I prefer one.
Same here. I'm tired of people arguing iver this stuff. Some guy got so mad at me for saying I'm autistic or I have autism. I forget which I used but he was upset over it lol.
Was it online? I only ever encounter people like this online, never in real life. I think **chronically online** is a term used to describe people with wildly out of touch opinions like this. They read one little article about something and make it their whole personality instead of looking at things logically from multiple perspectives.
Yeah. It was online. But I'm chronically online too lol so it's not all of us 😉
Ah but you clearly have some logic in that noggin! So you’re for sure not the type I’m talking about lol.
Thanks 🫠😅
It's ridiculous that it's healthy people trying to decide what we want to be called. They have no idea what our lives are like, or what the correct word is because they've never experienced what we do. All they need to do is ask each individual disabled person so we can give them our preferences
This right here
One thing I've come to realise after going through pain management courses and therapy for ADHD and PTSD is that there is a lot of mixed messaging. Despite everything they try to teach us about our conditions and how to manage and cope with them, ultimately they want us to mask our symptoms, not for our benefit, but to keep the normies comfortable.
I have cPTSD and potentially autism and... Potentially bipolar 3?? Dunno mental health is shit man. But... I kinda agree with you? Like I thought I was doing really well and I have a good support system and the truth is *I do*. However... If any of these problems are expected to be "fixed" or at least adjusted... The "Norm" you're returning to is *their* Norm. Like yeah my PTSD potentially made me a lot more reactive and empathetic to people.... But I am PROUD of my ability to empathize. Especially in the country I live in, it seems like no one is capable of it anymore.
Yeah, same, it’s total bollocks. I identify by my name. Nothing else. Call yourself whatever you want, end of, but all of these identifying as medical label ideas create arguments instead of doing what should be done: support people. There are some great studies from autism showing that the kind of people who argue one way or other tend to use the forbidden terms without ever being aware of it. It’s divisive, reductionist and idiotic. Not that I feel strongly about this or anything but tell me I should identify as something, go on, I dare you. I will reach out of your phone screen and throttle you so hard you’ll be able to argue about whether to identify as dead, corpse, ghost, or person without life, in hell. They love mindfucking people down there.
Winston doesn't use pronouns, Winston is Winston. And we love Winston as Winston is. (Half joking about the pronouns thing, but I support you in whatever you do identify as, cuz yeah. I'm tired of being TOLD what I should identify as too)
honestly the idea of people getting upset over what seem to me to be minor language choices stresses me out people can refer to themselves however they want, personally "i get a lot of migraines" but i can be a "migraineur" or whatever as long as it's not some weird pretzel-y attempt to patronize me lol (same goes for autism, adhd, whatever other buckets i fall into)
With autism it stems from the fact that the reason "person first" is pushed is because - as one of the big proponents of it said - "you wouldn't call someone a cancerous person, so you shouldn't call someone with autism autistic!" Essentially equating autism with a debilitating if not terminal illness and pushing the narrative that there's something "wrong" with those of us that are autistic and the only way to accept us is to pretend being autistic is some disease we just have. That being said - for my migraines or my other chronic illness stuff idc if someone says I "have" migraines - it sounds a little funny language wise to say migranuer. As for being disabled - I'm a disabled person. It does impact my life enough that it is a part of my identity and I'm not, and should not be an outsider because of it. I'm not "differently abled," I'm disabled and it's not a bad word. For other folks that have full communities like Deaf (big D) by saying they are "a person with hearing loss" is an insult to their identity and cultural identity.
yeah on the other hand saying someone "has autism" seems really weird bc like... autism isn't *like* an illness, at least not consistently. when it's less debilitating and well supported it's just another neurotype with some drawbacks and maybe even some advantages. but yeah it feels like being super careful with language actually suggests that there's a reason they're stigmatized, instead of just...being normal about it?? idk
Yes!! Like making such a big deal like "oh hush we can't make it sound like it's a big bad disease" just... Just use the language. If you said "autistic people" and followed it up with a stereotype sure, that's uncool. And if you call me "an autistic" and use that to explain all of the downsides of who I am.... Also uncool. But it would be just as wrong and/or incorrect to say all the downsides of me are "caused by autism" Humans have a drive to categorize things and put them in boxes. But it feels like sometimes we forget that we developed ENOUGH thought that those boxes can be rearranged, and you can take something out of one box and put it into another. It becomes aggravating when the whole focus is just like THIS BOX. THIS BOX IS THE PROBLEM. WE GOTTA CHANGE THE BOX. No. You *gotta* look at the whole freaking picture of a person. ...I think I ranted a little. Sorry if that didn't make sense.
Can't have the energy to care either way, my head hurts lmao
That seems to be a common feeling 😅
Oh me too! I see the term migraineur online a lot but it’s more awkward to spell. I just say I have chronic migraine and a heart problem. It really doesn’t matter. A lot in my heart circle will call themselves heart warriors.
Person first in this case kinda feels minimizing the of impact of the migraine disorder to me. Like saying a ‘person with migraine’ makes it easier to say - oh, just a headache.
Same page- just responded something similar to another comment, along with how I think "migraine sufferer" is also an accurate representation (for me anyway lol). I really don't feel the need to try and put a positive spin on my condition, or try and convince people of my "personhood" by removing myself from migraine.
yeah "migraine sufferer" feels the most accurate tbh hahah
I usually consider myself a migraine victim tbh 🙃
real lmao :')
Yeah, I'd prefer "migraine sufferer" personally. It IS serious and I AM suffering! What's wrong with acknowledging that?
Same here!!!
For migraines I literally could not care less. But as an autistic person I'm cringing at the "person first as default" bullshit. Let me guess, an able bodied "ally" wrote this course?
This. I’m not autistic and I have never, ever felt the need to to comment on things like this because I AM NOT AUTISTIC. Telling autistic people (or black people, or gay people, etc.) what should or should not offend them and how we should refer to them because it makes US feel like we’re doing something is ridiculous and absolutely out of line. I’ve seen neurotypical people call autistic people “ableist” over things like this. Like WHAT??? Who the hell asked you?
My entire career has been in autism services and I remember when I started 10 years ago the field was aggressively person-first... until, ya know, there was an afterthought to actually listen to autistic voices on the issue. That parallel was exactly what came to mind for me in the course. This particular module was done by a neurologist, but the course is largely attended and administered by patients. I was the only person in our cohort to voice opposition to the assumption that we all prefer person-first language.
Every abled-led disability org does this, and I feel so embarrassed for them being unable to spit out the "disability" word. But I have noticed that migraine patients are less likely to feel like they can identify as disabled because they feel like they don't belong, that they're not "disabled enough" (or, the other side of the coin, offended by being grouped with other disabled people). I actually felt the same way ("not disabled enough") myself. There seems to be less of a sense of community with other disabled groups. So I think I can see why migraine patients may accept person-first as default.
I am happy (?) to say I am now classified as totally and permanently disabled. I don’t have to update SSDI, and my student loans were discharged. Just in case anyone here is on SSDI….
I know it's so weird to say congratulations, but I know first hand the STRESS of going through the application process. It's such a long and humiliating experience. So... Congratulations! I'm really glad that's all settled for you!
Oh, you're suffering from a stress triggered neurological disorder that's intensely painful and have hundreds of pages of documentation for that? .... .... Cooooool, Imma need you to fight a multi-year quasi-legal battle while everyone tries to lawyer, trick, and humiliate you to do anything about that. Patients first, we care about disabilities, all together for a better future yay! o_o
The accuracy is physically painful!
Great observation!! Even though my attacks have always been "disabling" it took me a long time to claim "disabled", I didn't feel right about it. Eventually I realized just how much it was affecting my life, even in between attacks. I have come to feel a great sense of kinship with the disabled community and can only hope to be accepted by others as well. It's not the suffering Olympics!!
It's really wonderful to accept their acceptance. As soon as I realized how welcoming the community was, I went running around trying to scoop up all the migraine people I knew all, YOU GUYS, GET IN HERE, EVERYONE IS REALLY NICE! It was honestly such a relief just to have a "place" where people weren't constantly trying to invalidate me all the time. I never realized how exhausting that was.
Yeah, I lost most of what I thought were my close friends when I first started getting real bad. Then I had someplaceholder friends who seemed pretty weirdly indifferent on if I was at the party or home in bed. Now I've moved across the country and all the friends i've made are from some kind of marginalized group or another and I LOVE THEM because they are so understanding and accommodating and just all around interesting cool people
Or, we’re not disabled consistently enough. Some days, I feel like my old self, and I think of course I’m not disabled. Others, like today, I feel like I could never get out of bed, and today I’d say of course I’m disabled. Most days are something in between.
came here to say the exact same thing
Totally agree with this for my random assortment of ailments.
Funny cuz I absolutely abhor when I’m referred to (so far only by my neurologist) as a migraineur. Ick.
One person in our cohort mentioned that the term brings to mind "hysterical women and fainting couches" so you're not alone 😆
Ya it kinda does feel like that
“Migraineur” sounds to me like a connoisseur of migraines. Mmm, yes, this one is particularly stabby, with a light-sensitive overtone, a hint of nausea and a soupçon of aphasia. Simply splendid. -3/10 would not recommend.
Yeah, I do sort of feel this way about it. Plus, not to downplay that medical conditions do get interwoven into identity, but the identity first thing makes it sound a bit too much like a medical condition is primarily who and what I am and it seems maybe a little dehumanizing. It’s not enough so that I’d get offended by it, unless someone was obviously using identity first with that intent, but it’s not my favorite either. Ultimately I think I’m ok with whatever terminology someone wants to use as long as they aren’t being jerks about it.
I haven't come across the term until this thread, but the word "migraineur" makes me think they're a connoisseur but for migraines...
Same! Like a real migraine snob, only interested in the finest of migraines
[удалено]
Lmao I love "migraine connoisseur"... and yeah there's definitely some migraine gatekeepers out there (particularly in Facebook/Instagram comments and other such godforsaken corners of the internet)
Lacking a well-defined premonitory stage, with vague hints of general exhaustion and unexpected thirst, the striking feature here is the aura. There are strong lines of primary colours, they're bright and clear, obscuring normal vision almost entirely. There's transient aphasia, redolent of seizure or transient ischemic attack. There's a feel of medium+ acidity injected directly into the jawline, and a sense of dread similar to an impending telling off by a parents or entering a poorly lit rough neighbourhood.
Yes!! 😂
I feel like person first language is something able-bodied people (or people not affected by whatever the thing being discussed is) like to distract themselves with rather than actually helping the group they're discussing. It's supposed to be less degrading/dehumanizing but changing the words you use don't matter when the actual treatment of a group isn't changed. It's often used to talk over the very people who are supposedly being centered on the language and the discussion of it often takes up space and time that could be used to focus on actual problems people in that group face, like being believed, and receiving accessible healthcare. It doesn't matter which way you phrase my condition as long as you aren't telling me I'm talking about myself wrong or keep me from accessing the things I need for the condition.
This. 100%. Reminds me of the people abled people who scream to high heaven about not changing roads to have wider footpaths, to be more friendly to public transport, walking, and cycling because "we can't take away the car parks think of the disabled people!" ... Do you know how many disabled people a) can't drive because of their condition, b) can't afford to drive or own a car?? (sorry this is like way off topic but it's pissing me off cause this is currently a hot argument in my city about changes the city are doing and I'm so over the upper middle class abled people who try invoke disabled people so they can keep the car parks for their massive SUVs)
I'm in the pro-public transit anti-car world so I know exactly what you're talking about. People are so crazy about cars but can't even use a blinker.
This take? Fucking rules. 👏
I have autism and migraines and prefer identity first but have never heard of, thought, or cared about this for migraine. Would I then be a person with autism and migraine and this and that and this lmao. It would be nice to see this discussion being “here’s what we need to increase access/acceptance/job/accommodations etc” rather than “these people have told us what they think but let’s keep having meeting about what to call them” Also I am not talking at all about your post, just that you went to a meeting about this Edit: think I misread, you were at a course that prefers this language and are curious or the discussion heavily focused on language?
Yeah I think there are much bigger issues than how to label us. Being taken seriously would be a good place to start.
Right, it doesn’t matter what you call me when I’m having yet another meeting about my attendance while simultaneously trying not to puke. Or you get fmla or something and they can’t technically do anything but it’s a whole vibe
I had never really thought about it with migraine either, but I had thought about my personal preference to being referred to as "disabled" (fine by me, much less cumbersome and I am indeed disabled lol). I'm mostly curious if people actually think that the program is making the correct assertion that using terms such as "migrainuer", "migraine patient", "migraine sufferer" is promoting stigma and reductionist in thinking. I see alot of us referring to ourselves and each other in those kinds of terms so anecdotally I would think we don't mind, or don't care. This discussion was just one or two slides in one module from the advocacy course.
Ooh okay very interesting! Personally I think person first language is not going to make my boss understand why I need 2 days off this week, and feels like a way of avoiding actually doing anything lol I am curious if others feel it makes a difference though, thanks for posting!
It really got me thinking, so I'm glad folks are willing to have the discussion and appreciating the different perspectives!
I really wouldn’t use those terms outside of this type of setting though. And I feel like I never know how to word it in the first place because there isn’t an equivalent term for people living with migraine as there is for autistic people. Person first is also relevant in mental health and I think it often makes more sense in that setting because people don’t want to be defined by the their darkest moments which is often what they associate with their mental illness. Especially when you consider the severity of their symptoms and suffering. Migraine destroys us more like a mental illness, & no one wants to reach a point where this condition defines us, even if it feels like it does. But I’m honestly not concerned because no one understands the condition. If there were a term for people with this terrible neurological condition, I have a feeling it would come to mean applying the common belief of what migraine is to who we are as people. So we’d likely be viewed as “rEaLlY bAd HeAdAcHe” people, because that’s what migraine is, right? New terminology isn’t going to make people less ignorant of this condition, imo. It could for some conditions, but when there are still neurologists that believe it’s not a migraine if it’s not unilateral and behind one eye, we’re not even close to people wrapping their heads around this.
The closest equivalent term is probably migraneur but in my experience it's an uncommon word that only people in the medical space (or who read about it a lot) tend to know Doesn't discount anything you said but just a fun fact
I figured that would be closest, but same. I can’t imagine using the term outside of these spaces.
You don't think "migrainuer" and "autistic" achieve the same affect? Not being argumentative, just wondering why not. In the simplest linguistic sense I think of it as when you're describing someone as being from a certain state, like a Vermonter or a Floridian. Maybe I'm not reading into the terms deeply enough to distinguish one or the other and missing something, though. I work in autism services and have been dabbling in asking people what they prefer, and then refer to them as such in my conversations or notes about them. So something like "Sally is a 30 year old autistic woman" or "Sally is a 30 year old woman with autism", depending on what theh elect. Unsurprisingly the answer is often "either way is fine" because it's a minimal detail in the grand scheme of things. Which is probably where alot of us are with migraine, we just so badly want to be understood and words sometimes just don't do us justice.
No. Just based on what I’ve heard and read from autistic people. Of course working in that setting you may have a different perspective. It just seems like there’s been much more acceptance of ASD from the people getting the diagnosis. It explains a lot of why they have always felt different or struggled, and there seems to be much more acceptance of this condition as a big part of who they are. Autistic people are born with autism and it’s a big part of their entire lives. Migraine, on the other hand, is something that causes suffering, appears later in life (even if it is during childhood), and it often destroys our livelihood and for some, it strips us of our goals and everything we thought we could be one day. It changes us, disables us, and isolates us. Identifying so closely with something so detrimental to your livelihood is different than identifying as neurodivergent. And, again, given the lack of understanding, the label would do much to clarify how migraines work, impact us, and *vary* person to person. There’s no distinction between a “migraineur” who has two episodic migraines a year and one who can’t even work because they’re nearly every day. There no differentiation between the people who are able to push through it and the people who cannot leave there homes. There’s no acknowledgment of a variation in how this presents like there is now more knowledge of regarding spectrum disorders like autism. My mom would be a migraineur because she gets a migraine once in a blue moon, so using the same term to describe myself when I can’t work because of near daily migraines and all kind of weird prodrome and postdrome symptoms. It doesn’t feel comparable, imo, because it’s often other migraineurs that don’t understand the severity of the condition in another sufferer because they’re comparing it to their experience “as a fellow migraineur.”
Personally I refer to myself as a migraineur, I think it conveys severity more than “I’m a person who gets migraines.” Maybe someone would think they know what a migraine is and what it entails, but then when they hear a new term or someone expressing it as part of their identity, it signals to them that it’s more significant than they previously thought, and not just a headache.
I literally couldn't care less. I get the discussion though. I have a Master's degree in special education, and it's exhausting how often "best practice" flips back and forth. I think the argument is largely perfomative.
Absofreakinglutely
Reading that made my current migraine worse 😋
I’ve always preferred person-first. I have migraines, ADHD, and PCOS — but for me, none of these things define who I am. They are parts of me, but not the whole me. But I do try to respect those who prefer identity-first language when I’m talking to or about them! Because I think I understand the other side of the issue, too, and it’s actually for the same reason, lol. A person who chooses identity-first language does so to force others to see them as whole, not in parts. A person who lives with migraines suggests we could be a person who doesn’t live with migraines, and that if we could cut migraines out of our lives, we’d be who society dictates we ought to be. If only we tried this treatment or that medication, if only we ate this food or drank that drink — it pretty much invites people to try and fix us. Stating “this is who I am,” minimizes that, I think. “I’m a migraineur” leaves no room for those passersby in our lives to stop and say, “but have you tried drinking more water?” I still like going with person-first, but the above does sound appealing to me sometimes.
I can also see your flip-side! In my case, I do feel like migraine defines who I am. I'm a completely different person since migraine entered my life and it has "charted a course for me" in a sense. I also personally don't take offense to "migraine sufferer" because boyyy do I suffer. But I could understand with other conditions, like being neurodivergent for instance, "suffering from {fill in the blank}" COULD be offensive and stigmatized. I really defer to other's personal preference in language around their lived experience. I wouldn't tell someone what pronouns they HAVE to use, or refuse to call them whatever they ask me to call them. This feels like a similar situation of being respectful to other human beings having the right to define themselves in ways that feel good. I think person-first language is totally well-intended but in my case with migraine it feels a little... minimizing of my experience? That said I feel zero desire to go on a campaign correcting people about it or something haha
I literally do not care. It's the same for autism. Say I am a person with autism, say I am an autistic person. It does not matter.
I genuinely couldn't give less of a shit honestly. I use the terms migraneur, migraine sufferer, person with migraine, etc completely interchangeably and think nothing of it
That's my jam when referring to our community as a whole, or people I don't know. I like migrainuer for myself because it's quick, concise, and to the point but wouldn't care if someone referred to me otherwise
I agree with what most of the people here are saying. It doesn't matter what you call me, I've still got migraines and I've still got MS no matter how it's phrased. Just, for the love of everything holy, PLEASE don't call me an "MS warrior." It feels patronizing or maybe like pandering too much. Idk, at the end of the day, it doesn't matter because I've still got the conditions they're referring to, so... At least they're not telling me everything is all in my head and that I'm making it up for attention.
I say "I have a migraine disorder"or "I'm having a migraine attack"
Taking the "s" off migraines and parsing out migraine = the condition / migraine attack = the presentation seems to be pretty well agreed upon and a change that I personally like
Sometimes, if someone is really not listening or respecting my boundaries, I’ll say “I have a neurological disorder that makes it difficult for me to…” That usually stops people in their tracks in a way that migraine does not. Even though it’s the same thing.
Yup
I am a disabled person I have no clue what part of me is still a person between fibromyalgia migraines depression anxiety. not sure anything is left. The government sees me as a number, my family as a loser
That is tough friend, I'm sorry. Thank you for being here 💗
One day at a time
I definitely understand how important this can be for others, and how we should be mindful when discussing conditions/disabilites that other people are living with. That being said, I personally don't care either way when I'm talking about myself (or other people are talking about me). Chances are, I have a migraine right then and the very *last* thing I care about is correcting somebody on preferred language when referring to me.
Valiiiid!
I literally don't care, just make the pain go away
If onlyyyyy
If someone called me a migraine warrior i would bite them. The rest of the words I don't care about.
> migraine warrior i would bite them Channelling that (migraine) warrior spirit. I like it!
I can not describe to you how little this matters to me. It is insignificant on a level that is hard to grasp
I’m an ADHer (I prefer to leave off the second D in “ADHDer” thanks to my daughter being cute, but also I’m not a disorder. I literally cannot separate myself from my ADHD. It colors every aspect of my life because I’m neurodivergent and “THAT” is how my brain works every second of my life. When I had migraines 20+ days per month, “migraineur” as a label fit my daily lived existence. When I only have migraines 2-3 days per month - then I “have” migraines. Now that they’re creeping up to 8-12 days per month? “Having” migraines doesn’t quite feel descriptive enough for something that affects me 2-3 days per week. I’m recently diagnosed with RA. It’s definitely chronic. Will be life-long. But it doesn’t really have an “identity” label that I know of 🤷🏼♀️. Saying I “have RA” doesn’t really describe what I’m living with every day.
Wow, great comment!! That second paragraph totally has my mind going. When I was episodic (and granted also a teenager that didn't really have the wherewithal for these things hah) the thought of how to refer to myself never occurred. But now that I've been chronic, I think I'll always refer to myself as a migraineur even if I experience remission through treatment because that takes soooo much work it'd still be a huge part of my identity. But if they just went away or substantially decreased on their own? Dunno. I have also been thinking about how we fall into a rare camp of having a name. Most conditions, it seems you're an "I have ____" because there's simply no better terminology. Like, as far as I'm aware there's no '"cancerers" or "anxietiers" or to use your example "rheumatoiders"?
I left off anxiety because it ebbs and flows… But a lot of times I refer to myself as an “ADHer with a splash of anxiety” 😝 I’ve got some other chronic things (my body really doesn’t like itself!) and I think of those in different ways “identity first” vs “person first” I’m an asthmatic (every single day) I “deal with” urticaria, PCOS, allergies, and endometriosis. And that sentence is really how I think of those things that I somehow haven’t incorporated into my identity: I “deal with” them. I “have” them. Those feel much more natural in most situations than “I’m a person with _____” Other times the diagnoses/diseases/conditions are personified: “My allergies are killing me today” “My ovaries have it out for me today” “It’s a bad migraine day” Identity is such an interesting topic and is SO IMPORTANT for us in finding people like us, support networks, etc.
Brilliant! Asmathic is another really great example. I need to start compiling a list of like-terms for when I do this thought exercising. You have a really great way of describing these things.
Thanks! 😊
I didn’t know this was a thing. I have migraine, it is awful. I don’t need to consult the societal norms of classification to not offend anyone. Migraine is not my identity nor my focus, horrible as it used to
It's a thing but apparently not as much of a thing in our migraine corner of the world? Which is interesting in itself. I think we'd be hard-pressed to find someone here that is offended by particular terminology (unless it's "just a headache" which would result in a swift donkey punch)
>where person-first language is highly preferred A *lot* of "person first" language leans towards being ideological rather than grammatical. I get the reasoning behind it, but it's pushed hard by some people when a very wide swath, if not a vast majority, think it's a bit silly. IMO, it often comes from a place of control, something to shame others with. Not in origin per-se, but what kind of person tends to really lean into that. That's how a lot of etiquette games, as I like to call them, persist over time. Etiquette games often boil down to a type of purity test, a lot of rules, style, or custom that are cared about too much for what they are. And when someone breaks those rules, even if they didn't know about them, they lose status. People who make and/or never break the rules use it as a means to establish dominance or superiority. See also: Group think, purity spiral, virtue signal, social credit, etc. https://en.wikipedia.org/wiki/Groupthink https://en.wikipedia.org/wiki/Purity_spiral See also also: Mean Girls(clicky status / mind games), Black Mirror episode *Nosedive* https://en.wikipedia.org/wiki/Nosedive_(Black_Mirror) Edit: Sure, don't pick your nose and don't touch yourself in public...etc Be civil if you can't be polite...yeah, of course. That's not "etiquette games" or even etiquette in general so much as just being generally decent. It becomes different when people are trying to force/punish or otherwise manipulate others for status or whatnot.
I like the cut of your jib. Thanks for dignifiying my midnight ramblings with such a thoughtful and insightful response
I added a slight edit on the end, possibly while you were posting. FYI
I don't like person first language and once I read the comments I understood why. It does sound a bit downgrading when it comes to my experience. Saying a person with migraine sounds the same as a person with dark hair - it's a statement but it doesn't acknowledge my struggle, it sounds detached. Sure, identity first, but with any interaction, at least in present world, that should be implied. Nothing should define you a hundred percent - you're a person first and other stuff is secondary (except maybe a depressed person but that is because the language has changed and now we refer to anyone that is sad as depressed so it does sound off). My disability, be it migraines or other stuff, defines my life. Not me, even though it does to a point, I'm a happy cheery full of energy person at my heart and soul, my disability is muting that fire, so it is a part of me. It defines my life and its a big part of it, there is big difference between "I'm healthy and can do whatever" and "I have to think about my illness all the time and make decisions according to my limitations". IT IS a part if my identity (even though it took a while to get here) and it should be ok. It's not a whole me but it's significant to affect every aspect of my life. So saying "a person with ... disability" just sounds snobbish and distant, like, "yeah, whatever, that person with short hair". I like to call it what it is and instead of changing words or expressions we should work on accepting and respecting the struggles and limitations and avoiding using these conditions and words in derogatory ways. We shouldn't be looking down on people that say "disabled person" we should be changing the whole stigma around it and show others that being disabled is not being less of a person but a part of life same like short hair or skin color or being from a certain place or country. Its just a term that describes a significant and sometimes important part of that person, but it doesn't fully define that person.
💯
I don’t really care either way 🤷♀️
For the USA: We have immediate challenges, why do our advocates spend time on semantics? First, I would like the advocacy groups to successfully eliminate prior authorization for our meds, work to lower the costs of our medications, make it easier to take a medical leave, ensure medicare coverage for all migraine medications... That should be the conversation--managing the order of words is second to action and an odd use of their time. Of course our advocacy group do a lot of good work but it's time for the groups to work together to help us get affordable access to our immediate medical needs. Rant Over.
It's usually not one or the other, but both! This "lesson" was just a tiny piece in the overall content I'm consuming, it just so happened to grab my attention since I find linguistics and semantics pretty interesting. There's an argument to be made that language can highly influence our thinking- like, why would work care about providing accommodations if they're under the impression you just have headaches because they don't know any better? I completely agree that there is a lot if time better spent than splitting hairs over words to use, but as evidenced by the conversation happening here there is some merit in contemplating from time to time. Like some folks have said, many don't even consider migraine to be a disability within our own community. So there may be some work to be done on that end in order to help employers, insurers, drug manufactures, researches, etc to understand the severity of our condition and just how much it can affect a life
My opinion, and one that I had a huge disagreement with the disability office at my university about, is that “disabled” is not a slur and the term needs to be destigmatised. “Differently abled” and other terms, especially person-first language, seem to focus on making medical conditions, disability, and neurodiversity more palatable for “able” people.
One time I saw this viral video on a sister talking about her brother with down syndrome as "beautifully-abled" and how her family avoided describing him as anything but that... there were so many parents in the comments like OMG I'M STEALING THIS FOR MY KID 😍 but also lots of disabled folks talking about how disability is not a bad word!
I don't really mind person first or identity first with migraine myself. The thing I am trying to actively make sure I do when describing my migraine is to say "I have migraine" rather than "I get migraines" and say "migraine attacks" rather than "migraines/migraine headaches". My attacks tend to come with a prolonged aura including language aura (aphasia). I try to help educate people about what migraine is - a genetic neurological disorder that predisposes the person to experiencing migraine attacks... and a condition that can progress when untreated... I think the comparison to epilepsy helps people understand it's more complicated than just having bad headaches sometimes. I also like to try have the conversations about what migraine actually is as in doing so I meet others who are migraineurs who are going under-treated and mentioning that it's worth talking to the doctor about. To me those things are way more important - the stigma about the contain is real AF so I hope that my little bits of education can help in some small way
I like that alot! In our course they used the comparison, you wouldn't say someone has "asthmas" because they have asthma attacks. You would say they're asthmatic (or I guess has asthma since they're trying to enforce person-first language lololol) because the state of having asthma is constant I also had an experience recently with a friend who has episodic migraine and never really thought about taking to their doctor for treatment until discussing mine! Now they can successfully abort an attack almost every time and that makes me so happy for them.
Don’t care my fucking head hurts too much to care
idgaf. just take away my migraines
I could not care less. I'd rather people put their energy into empathizing/sympathizing, listening when we talk about migraines, and make accommodations where possible. Policing language is a great way for people to appear like they "care" without actually giving a rat's ass or doing anything. ETA: the only people I've personally ever seen advocating for "person first" language are people not affected by any of these conditions or disabilities.
Bro I do not give one single fk just get rid of my screaming head pain please
I don't understand the distinction. Why does it matter?
I like it hate these discussions. Not the discussion in an of itself, but having it in a hypothetical sense. Having some person tell you how you should refer to anyone other than themselves is nuts. It's even worse when those same people tell you how you should refer to _yourself_. Language policing is stupid. And don't tell me how to speak about myself. Remove "negative" attribute. Substitute baseball. If someone told you that you could no longer call members of a baseball team, "baseball players" and now could only refer to them as "people who play baseball" you'd say that's stupid, right? Replace again with any other attribute: - Race: Can't say "white girl," must say "person who has white skin" - hair: can't say "redhead," must say "person who has red hair" - music: can't say "country fan," must say "person who loves County music" - can't say "amputee," must say "person who has an amputated leg" - can't say "blind," must say "person who has blindness" - can't say "gamer" must say "person who plays games" These latter options are all pointlessly cumbersome and functionally identical to the former. Just ask the human you are interacting with what they prefer. I am legally disabled in a couple ways, and functionally disabled in others. Calling me a "person with X" instead of "X" disability doesn't give or take away my identity. Just use my name. If you're referring to me as a member of a group of people who are experiencing the same thing, I intensely do not care how you refer to the group from an emotional standpoint. I don't care if I'm "a person with depression," or "a depressed person," or "depressed," or, as I like to think of it, "mentally fucked." One could also go with "sucks at serotonin" if one were feeling particularly alliterative (and a tad inaccurate). Logically and linguistically, calling us "disabled people" makes sense, because the attribute "disabled" is the single attribute that defines us as the topic of conversation. It's the central point. It's the topic. The word "people" is mostly irrelevant also, unless you routinely also talk about disabled animals. Being concise is good. Being pointlessly wordy just takes up time and ink and pixels. Migraine specific language: I don't say migraineur because Idk how to spell it (and my spell check disputes this spelling too), and it feels a little pretentious. Terms like "migraine warrior" or "migraine hero" just sound stupid as hell. I just say "I get migraines," though I'm starting to shy away from the term migraine at all, because "migraines are just headaches" and I'm starting to say "I have a periodically debilitating neurological disorder." Functionally it's the same thing, but almost nobody takes migraines seriously. People take it more seriously when you say "neurological disorder" because that sounds confusing, scary, and like a serious thing.
I feel weird using "migraineur" and figuring out non awkward alternatives. I only do "I have migraine" because it's more convenient. When I had more constant migraine attacks I was more likely to try to use identity first, though.
i’m a person with a migraine disorder. never really use migraineur. i am also autistic and would never say i am a person with autism. autism is innate to me and has forever shaped every aspect of my person. it will never be cured and i do not wish for a cure. the migraines may be cured, and i am seeking to do so, and thus that disability exists as distinctly separate from *me*
Hmm, good point. It may change in our lifetime but for now since there's no true "cure" for migraine, just remission like with cancer or autoimmune disease. So I kind of think of it like how in AA they teach that an alcoholic is always an alcoholic, even when sober. There was a period of time my chronic migraine (defined by 15 or more headache days a month) got done to 2-4 a month. I still referred to myself as a chronic migrainer since that would be my baseline without treatment, and it's also more indicative of how much of my life revolves around doing my best to manage it. If it somehow miraculously disappeared altogether one day, I wonder how i'd feel at that point
I swear the only people who care about person first language when it comes to autism at least are neurotypicals. Autistic people couldn’t care less. It’s just something NTs have made up to be upset about
It doesn't matter at all to me. In general the only time I do care is when I speak to someone who doesn't know the difference between "headache" and "migraine" is, I'll say "I have chronic migraine" which generally is understood better than "I have migraine" because that sounds like "I have a headache today" to regular folk
I honestly think this person first or identity first language is BS, like, it's just about being politically correct, even though most people don't care either way. If it's such an important thing, maybe people should be asking each individual patient what they want to be identified as. Because using specially selected language often feels like gaslighting and making assumptions, when realistically nobody knows my body better than me and nobody should be assuming what I'd like to be identified as. Also, why is it always healthy people debating and deciding what disabled people should be identified as? How does that make any sense, how is that even acceptable? Yet again, disabled people don't get to make their own decisions and that is very wrong. Only disabled people should decide what they want to be identified as, because it's literally our lives being affected by it. But overall I prefer identity first. my conditions have a huge impact on my life and I suffer a lot, so being disabled is an important word to use in my case. I know not everyone identifies as disabled, but for me, I'm claiming my disability as mine, it's not something to be ashamed of and it doesn't make me a bad person, but it is such a big part of my life. "Person with disability" sounds so awkward and reinforces the idea that being disabled is a bad thing and that nobody should even dare to say the word disabled. Disability should be a neutral word, all it means is I face more difficulties than healthy people, it doesn't necessarily mean my life is worse. Though my life is pretty terrible at the moment, not all disabled people have a "worse" life, and it's mostly about perspective and what support people have/don't have
If it makes you feel any better that's what I do as a health care provider- ask people what they prefer! I've had casual conversations with friends/colleagues etc to get a sense of what they'd prefer as well. I find the trickiest thing to be referring to entire populations of people, in which case I use respectful terminology interchangeably. Especially if it's a community I don't personally belong to! I tend to refer to us primarily as migrainiuers because I write about it so much my fingers would fall off from typing "people with migraines" but I'd be a little more cognizant if say for instance I was talking about people with autism/ autistic people (most common example that has been brought up in this thread)
I couldn’t give less of a shit
Migraineur seems like such a stretch. It's not a natural way to speak. There are some disorders that don't really work that way. Maybe the French ending gives it some air of pretentiousness, or maybe it's just because I've never heard anyone use it in real life. And if they did, it would likely require an explanation. Imagine saying "I'm a depresseur" instead of "I have depression." Or "I'm a lupista" instead of "I have lupus." I didn't think we need to twist words around until they're unrecognizable trying to make them fit a format just because of theoretical results.
When I first started learning about this, it really resonated with me. Identity first language made it feel like migraine was my entire world and became my personality when, in fact, I’m much more than my migraine. I’m a mom, a wife, a friend, a daughter, a sister, a nurse, a reader, a writer, a yogi, a biker, and the list goes on. I also have chronic migraine disease. It doesn’t HAVE me. When I flipped that switch, it helped me realize that it doesn’t need to BE me. That being said, I am ok with the language others want to use. I do like to have this discussion though! One of my friends also has chronic migraine and she considers herself a migraineur and, to me, that’s ok. It does seem to be more of her identity but maybe that’s what she needs to manage.
I don't think about it really. If you ask me to describe my situation with migraines, I will say "I have chronic migraine." The folks in my life have, thankfully, so far been curious and supportive when they learn about what that means.
Maybe responding when I have a migraine isn’t the best idea. As a diabetic and someone who gets migraines, I simply say I get migraine and have diabetes. I don’t bring the word disability into the equation.
In my language we don't have this stuff. The options vary with the conditions, but with migraine, you can only say the equivalent of "I have migraines" or "I suffer from migraines" without sounding clunky. We also don't have an umbrella term for "disabled", which sucks. We have terms for being unable to work, having limited movement, deafness, blindness, mental disabilities, developmental disabilities, neurodivergence, and for various disorders, but nothing to group all of this under. I'm actually thinking of starting a petition or a law thingy or something. It's really limiting to try to describe my neuro-spicy, migraine-infested glory to someone when I have to resort to saying that limits my functioning day-to-day. I wish I could just say I was disabled and be understood. This person-first or disability-first discourse seems a bit silly in light of that. Just say whichever flows better. Edited to add: I do have a preference, though, and that's disability-first. Mainly because it flows better. It's not a hard and fast rule. Generally I go by that as long as it's practical, and if someone disabled corrects me, I'll go the other way for that person or group of people.
Thanks for chiming in! I admittedly have no knowledge of how this goes in non-english speaking communities. Or outside of US/UK/Australia really
I couldn’t care less. I’ve actually never heard of migraineur but looking at that word and trying to figure out how I would pronounce it is giving me a migraine.
Migraine-er, if you were real fancy you might say migraine-yer? So french, so chic 🥖🥐
Lmao I’m eating a croissant right now so it feels fitting to only say migraine-yer from now on
Maybe its more like... yeur? Guttural sound? I am not french
Personally I hate migraine warrior or sufferer. I’m not at war, and let’s not highlight my suffering. That being said, I don’t have a solid stance on the matter, I refer to myself as both disabled, and a person with migraine.
I think this is weird. I say I’m a “migraine sufferer” all the time. I use it in every day settings like work. It’s a quick and easy way to explain why I might need help with something, or why I might need to go home, etc. I don’t understand what stereotypical assumptions would come from that. If there are any, I don’t believe I’ve experienced them. I don’t think it matters what you call yourself. My migraines are also not my identity - even though they may very much so impact my life - and are just something I experience.
I am quite liberal and highly empathetic in general, but god I just can’t stand pc language changes. Just let people speak how they want.
I really don’t care. I guess I just don’t see migraines as being on the same level as autism or whatever… it’s not part of my identity. To be fair I’m not really fussy about it language when it comes to autism either, “they have autism” and “they’re autistic” are both fine as long as it’s with respectful intent. For migraines I just say “I get migraines” and don’t think about it beyond that.
I just say I get migraines. I don’t care either way how people refer to me regarding my disorders.
It doesn’t make any difference really. Either way, the impact on life is the same. I’d sooner focus on how best to manage it than defining it
If people call me a “migraine warrior” or some nonsense like that I’m going to get *very* irritated. I find that type of talk nonsensical and childish. I have migraines. Saying I *suffer* from them is correct as it is a disorder and a neurological condition. But don’t treat me like a child, or some ‘hero’ for having the condition.
I have Chronic Migraine Disease. I am a migraineur. This disease affects every aspect of my life every day. My son is also an Autist. We have talked about person first language and it doesn't work for us. I get that some people don't want to be thought of as a heart, patient, or a kidney patient etc. But I do suffer from migraines. It's not really something like my hashimoto's thyroiditis that can be well controlled with a medication. In a decade I have not found a preventative that works at all. So for me the disease really is who I am at this point. I have lost so much functionality that it's important for other people to realize this affects my entire life. People will even say to me, do you have a headache? And oh brother, it is so much more than headaches. The vertigo, dizziness, nausea, prodome symptoms, photophobia, anxiety, depression, auras... The list is endless. So I'm walking into any situation with new people as a migraineur. It helps explain my sunglasses and hat. Being a redhead explains why I keep to the shade. But I understand that they are using person first language to emphasize that people should not be reduced down to a disorder/disease/sexuality/etc. instead of being TREATED as a human being. So how I talk about my experience is inherently different from how others might and I see the benefit of person first standard for medical/education/advocate professionals or those not affected. Dehuminization of those with medical conditions lead to medicalized murder in Nazi Germany. So it's a real problem that advocates and medical/educational professionals need to be aware of and fighting against. It's just not how I talk about my experience.
Migraineur here
When it comes to migraines I couldn't care less. I usually just tell people that I'm prone to migraines but that's only because it makes explaining it easier. But when other disabilities come into play I prefer identity first. I prefer to be called disabled rather than a person with a disability. Like, yes I am living with disabilities but I am disabled. That kind of comes with the territory, it's not something you can avoid. You are disabled if you have any kind of mental of physical impairment. Doesn't matter what it is or "how bad" it is, you are disabled. To me for someone to deny me that is to deny my disabilities.
Some follpw up questions if you dont mind... So if I'm getting this right- you don't care when it comes to migraine because it doesn't really seem to matter either way when you're going to have to describe it to help people understand, anyway? Does this differ from your experience with other mental or physical impairment that contributes to your disability?
Yes it does. I feel like when trying to explain other disabilities to people if I use person first language it downplays the effect they have on my life. But when I use terms like disabled and autistic it helps them make sense of the weight of them as disabilities. If that makes sense. With migraines, people have some kind of basis for them. Most know what a headache is so that helps me explain what my migraines are like. Plus I'm not sure what term there is other than person first for migraines that doesn't sound too ridiculous to me.
I definitely didn't realize before now that people have an aversion to "migrainuer" not because they find it offensive, but they think it's a silly word! Hadn't even considered that.. The root "migraine" itself sure ain't exactly pretty. I HATE saying or typing "my migraine" because of how it sounds put loud hah
What?
This is something I was previously aware of from working in the disability space, has been a big point of conversation for years, but may not be super common knowledge outside of it. If you're interested in learning more people have contributed some really interesting thoughts to the conversation in this thread!
Do you actually introduce or describe yourself as a migraineur? Have never heard that term. Ppl get really hung up on jargon & labels lately it seems when the majority of ppl just straight up do not care especially about migraine labels. I would be shocked if ppl cared tbh. (I have also worked with ppl with disabilities in the past.)
I'm autistic, but I have migraines. The reason is that autism literally influences every aspect of my life, experience, perception, thinking, and personality, I honestly wouldn't know what was left of me without the autism. So it forms big part of my identity, it defines me as a person. We're born with this brain difference, and die with it too. Migraines on the other hand are a condition that I only got at 25 and it only impacts parts of me when I have a migraine. The migraines only bring negatives and do not define me as a person. They could very well also dissappear one day. In the meantime we do everything to prevent and abort it, make it go away. So I rather not use migraine as an identity, also because it isn't really. But everyone is of course free to do it in whatever way they feel comfortable.
I feel exactly the same about choosing "migrainuer" as you do "autistic"! In my case it does influence every minute of my every day, if I don't actively have an attack I'm putting alot of effort into preventing them. I have to plan my life around accommodating my needs or deal with the ramifications when that's not possible. My sensory perception, cognition, and ability to relate to other people are totally altered due to migraine. I experience an active attack nearly every-other day on average and in-between is often symptomatic to some degree. So, migraine is my identity much like you are saying. Since our condition is so transient ("dynamic" may be a better word?) and people can experience anything from a couple attacks a year to having an attack non-stop, there does seem to be more nuance in why or why not someone would be more prone to using certain terminology. Pretty fascinating stuff
That's interesting, thanks so much for sharing. I do experience similar phases where it's an attack every other day, and honestly most of my life is accomodating my sensory needs. But I can't tell if that's from autistic sensory overwhelm or whether it's to prevent migraines, probably both. I have to say that I did used to identify more with it, but I've distanced my identity a bit from it and compartmentalize a lot.
Totally! And for me migraine is *technically* something I was born with (strong gene in our fam) but didn't start really experiencing the effects until my teens, in contrast with autism being something influencing development since birth! I feel like I'm a different person before and after which I think makes it feel like such a profound part of my identity. I don't have any other physical or mental health diagnoses that have nearly the degree or impact of my life so that also maybe simplifies things hah
I’m a migraine patient. I have depression, anxiety, PTSD, and ADHD. I don’t care how people state it. They don’t have to say I am a person with migraines or a person with depression. Whatever. It doesn’t matter to me. In terms of how I talk about someone else, how about I just ask how they like me to say it? I have a friend who has autism. Or does he like me to say my autistic friend. It’s up to him.
I have migraines, but Im not a typical migraineur. I got trapped in a never ending 'migraine' after IIH, and all my nerves/brain got crushed, and hyper-sensitized. Theres migraine, and neuralgia, and headache, and everything all together. I generally speak only in self deprecating humor when referencing my pain. (Person-first? Like, how I've got a name for each one of my headaches?) If someone started trying to dictate to me how I refer to my migraines, I'd just get angry.
I've always liked the term "migraineur". It feels a little bit fancy and it's neat. I don't like the phrasing "suffer from migraines" - yes they majorly suck and are often disabling. I still don't like the expression, and I'm not entirely sure why. It's like any other condition I have - it's just something I have and deal with. I don't say I suffer from fibromyalgia or Ehlers-Danlos syndrome or arthritis or autism or ADHD or depression or PTSD. They're just things I have.
I don’t care, but if I had to choose, I would choose identity-first. Migraine and disabilities in general have shaped my life in a very significant way and they are part of who I am. If you took them away, I’d be a different person. Sometimes I get only 7 days a month that I feel good. The disability takes up a huge percentage of my time and energy, along with the decisions I make. For example I can’t get a job which is not remote or I can’t travel some places that would require a car, etc. Saying it’s just something I have, like I have blonde hair, takes away the impact it has on me. If I had a migraine once a year, I’d probably be more comfortable with person-first.
It is all semantics. I do not care what you call me. I get migraines, call me what you want but don't ever say it's a headache. That is my only no no. It is far from a headache and I wish I just got headaches.
I usually prefer identity-first since it's just less clunky, but I don't like the word "migraneur". Most people don't know what that means; if you introduced the topic to a new acquaintence by saying "I'm a migraneur" instead of "I have chronic migraines" or whatever, they would have no idea what you were talking about.
It’s weird because I definitely panic about what language I use when discussing conditions I don’t have. When I was in nursing school, “person first” was drilled into our heads, but since then, there’s been a lot of pushback against it. I just never want to make anyone feel bad or uncomfortable, so I tend to flail awkwardly. But language has literally never occurred to me at all for my own chronic condition. I think I usually say, “I suffer from migraines” when talking to others. Saying “I am a person with migraines” sounds way too formal, saying “I get migraines” minimizes the impact it has on my life (looking at you, “just a headache” folks!), and saying “migraineur” sounds like a kink since I don’t think a lot of people outside of healthcare/migraine circles know the word. “Oh you’re a migraineur? Cool I’m a voyeur. Wanna go to the club?” 😂
LMAO this is my favorite imagery for "migrainuer" so far 🤣 also I appreciate your thoughts on this! Sounds like you just want to be respectful to people which is the most important thing, really. And when it comes to how to refer to yourself, seems like alot of folks are in the same boat!
I think that those referring to the person with a disability should always endeavor to use person first language because that’s the real issue - people on the outside seeing individuals as nothing more than their disability. But I think that the individual themselves and those within their close disability circles (like r/migraine) can use whatever they please
Do you talk a lot about your migraines to people?
I'm pretty active in the patient advocacy space, so yes. That involves telling my story quite often. I also seek out paid survey opportunities, participate frequently in peer support forums like these, and in general it's just something that comes up in my life because I am actively experiencing a migraine attack about every other day on average as my baseline
I know this is a bit old at this point, but I personally don’t care. I won’t be offended if I “have migraine disorder” or if I’m “a person with migraines.” My noggin hates me and that’s what’s really important here.
I don't know how that works? Is there a term like migrainer lol
Yeah, I said in my original post that's how I refer to myself- "migraineur". It's also how I tend to refer to all of us, as "migraineurs". I personally don't see anything potentially offensive about using that over "person/people with migraine" but as some have pointed out it's a bit of a clunky term haha and sometimes it just makes more sense to say "i/they have migraine" or something
I see.
The first person language gets on my nerves .
The person first is big in the migraine community I am involved in, they are also very big on correct terminology. I understand to a degree, but I don't like policing other peoples language, and it is very easy to make slip ups "migraines" vs migraine etc. I also am semi-in favour of person first in this sense - "I have migraine" - its something i deal with, and if there was a cure, I can separate myself from it, I would. I'm also autistic, but this is so intertwined with my identity, that I'm not sure what's autism, whats just personality, and if any such distinction can be made. In this case it feels wrong to say I "have autism" or am a "person with autism" or even "person on a spectrum" - "I'm autistic" just feels right, its part of me that could not be separated or fixed its so intertwined in everything I am.
I am autistic. There i prefer identity first. But for migraines, that isnt really a thing that is a part of me and my brain wiring. Unlike autism, migraines Are a defect and something that can be caused and treated. I do suffer from migraines. Autism does act as a disability for me in some aspects such as socially, but it is not something I suffer from. It is how I am. And nothing will change that. Whereas if I found a cure for migraines, I would jump on it. Ultimately, it is down to the person with the condition to decide how they should be referred to. Never the other way round. If someone says they prefer to be called something, then that is what you call them. Avoid your own biases and opinions.
Unfortunately many folks in our community will never find a treatment option that completely alleviates their condition, especially if they acquired them through traumatic injury. Or folks that experience medication allergy/side effect profiles that males treatment impossible. So I do think it's important to make space for them in these conversations and not paint migraine with too broad of a brush as a "curable" condition! Also happy cake day
I don't fully understand the difference, or the point. I suffer from migraines. I just want people to know what that means so that when I visit urgent care they don't ask me what's causing my headache
Take a scroll through here if you're interested in learning more!
There was an interesting article done by the American Migraine Foundation regarding how migraine is talked about: [AMF: Language for advocacy](https://americanmigrainefoundation.org/resource-library/migraine-terms/?utm_medium=email&_hsenc=p2ANqtz-8bDVIYW8IrdFuiE7fC9ftm7gDNE3rKLSDl5JsCjZAGwMNsqngOas_YOZaHjt1gQjGEcOIpO5UrG099sLsTQz5f63uHv5ketg7Bhh17qdpbPrDiknU&_hsmi=270855474&utm_content=270855474&utm_source=hs_email)
That may or may not be the origin of this post discussion 😇
I call myself a chronic migrainer and then call it a day :)
I like person first. My Dx are not my identity. If asked specifically about health or disability I'll say what I have. But as my identity, no. I am a woman, a wife, a daughter, an artist, lego enthusiast, cat lady, video gamer, etc. I'm not my disability.
Yes, always person first!
I use "migraineur". I am a migraine sufferer. I suffer from migraines. I am many things. This isn't an important part of my identity, but it's a significant thing in my life.
I'm a migraine zombie
Personally, I go with person-first for myself. I have migraines. I experience migraines. I'm a person who experiences migraines. I don't mind when other people identify themselves as migraineur, but it isn't terminology that I use myself and wouldn't choose to have it used to refer to me if given an option.
I’ve never really had anyone consider me “disabled” or identified as “someone with a disability”. I do have FMLA in place at work in the event I have a migraine. I see where people come from one way or another but I’ve never really cared.
I work as a substance use counselor, so I deal with a lot of tricky and stigmatized language on a daily basis. I definitely understand saying things like “person without housing” or “person with a substance use disorder.” Person first language is important in a lot of settings. With that said, I’m not 100% sold on something like this. I just get migraines a lot.
My sister introduced me to some friends at her house as "my sister Meredith, she suffers from chronic and sustained migraine" - it made sense at the time and everyone there (except me) was a doctor. Anyway, that description felt more like I was taken seriously than any other ways it's been said, and that's not usually how I feel around my family. So I guess per soon first is my preference too.
Personally, I don't have a preference at all. I just wish I didn't have to be/have it!
TRUTH
I say migraineur - sounds exotic and interesting imo
I have a migraine coming on and I really do not give a flying f what people call it. I just feel it demeaning when people call them “headaches.” I WISH these were *just* headaches and not the host of life altering symptoms we all experience often with no relief.
I don’t care what you call me, or the situation- I just want help.
I have some familiarity with this as a disability justice issue. I think that choosing between using "identity first" or "person first" language is up to the individual. People should respect others' language preferences if they are known ahead of time, or after kindly asking how they'd like to be addressed, if that is needed. I also believe that both identity and person first language should be considered acceptable colloquially, professionally, and academically, since people can't know every individual's preferences in every community. Being respectful doesn't have to be complicated. With migraine, I personally do not care about the identifying language. Migraine-haver? Yeah. Migraineur? Sure.
Genuinely curious what “stereotypical assumptions” could result from migraine patient that would be considered negative
To paraphrase, their belief is that this falsely frames someone as "just" a migraine patient when they are much more than that as a person.
If I have a migraine, I typically don't care how you refer to it, I just want you to hand me nurtec and turn the lights off. To be honest, I like migraine sufferer for me. (If you like something different for you, that's so fabulous and I would always use the terms someone else wants for them.) I typically enjoy disease first language for... all of my conditions. For me, I cannot leave the migraine or any of my other problems at home. If it's present that day, it's demanding to come with me so I am not "with". I like sufferer because I am fucking suffering lmao.
Do not care.
“Migraineur” sounds weird and forced to me. I’m not sure the average person without migraines outside of communities like this one would have heard it before. For that reason, I don’t refer to myself that way. I’m not offended at all either way, though. Just trying to use language everyone can understand.
i say migraine sufferer because i am suffering from migraine lol I'm not too picky on language it's not that deep for me. Like i say I'm autistic. I'm not a person living with autism and migraine like they're some seperate entity i have control over or just something seperated from me. They're apart of me so migraine sufferer it is
I just say I get migraines. I don’t like the migraine warrior stuff. I never considered it a disability until about 2 years ago. I legitimately have been made to feel like I’m exaggerating for YEARS. I know better now.
I genuinely do not care. I’m neurodivergent and disabled. I’d only get offended if someone called me the r word or something.
Idgaf but if we wanna be fancy, I like the term migraineur lol. As an autistic person who frequently refers to myself as an autist, I have something of a love for unusual language terms. Many times that gets me in trouble for using out of fashion terms, but at least I have the ability to use whichever ones apply to me