Is it stigmatizing to have migraine?

Is it stigmatizing to have migraine? I’m guessing that a lot of you would say yes. But, despite the huge amount of attention to the stigma of having other diseases, there’s remarkably little research of this issue in migraine.

As a result, we have no idea how stigmatizing it is to have migraine or the conditions under which stigma “sticks” to migraine conditions.

Drs. Jung Park, William Young and I are the midst of a study that will begin to answer some of these questions. So far, our findings suggest that patients with chronic migraine feel more stigmatized than patients with other neurological diseases, like stroke, epilepsy, multiple sclerosis, Alzheimer’s disease, ALS and Parkinson’s disease. That’s pretty remarkable, given how serious and misunderstood those diseases are. We also found that stigma increases alongside the severity of symptoms — so the more severe and frequent your migraine, the more likely you are to feel stigmatized.

For some of you, this isn’t exactly news. Migraine is an invisible condition, one that remains closely associated with neurotic women. It’s not fatal (although it may raise the risk of having other fatal conditions), yet it can be completely disabling. People often don’t understand how difficult it can be to live with chronic migraine.
So what do social scientists mean when we talk about ‘stigma’? And how do we measure it?

Social scientists understand stigma to be a discrediting mark that affects a person’s social identity. Stigma comes in many forms and varies depending on a number of factors, like concealability (is the condition highly visible, like a disfiguring scar? Or invisible, like a migraine?); origin (can the person be held responsible for their condition?), and contagion (can the condition be spread, like a virus?).

Stigma can be ‘enacted,’ perhaps in the form of prejudice or discrimination. But it also can be ‘felt,’ as in the shame that one feels in having a stigmatized condition. This means that you don’t have to experience actual discrimination in order to be stigmatized. The broad devaluation of migraine in the social world is enough to make an individual feel ashamed of having migraine even in the absence of actual discrimination.

We used a measure called the ‘Stigma Scale for Chronic Illness’ that assesses both enacted and felt stigma. We asked people with both episodic and chronic migraine a whether they agree or disagree to a number of statements like: “I tended to blame myself for my problems”; “I felt embarrassed about my illness”; and “Some people acted as though it was my fault I have this illness.”

We’re still collecting data and analyzing results. In the meantime, it would be great to know what your experiences have been. Is migraine something that you feel ashamed about and, if so, why and under what circumstances? Have you faced discrimination or lost friends because of having migraine? Have these experiences gotten worse as your own condition has gotten worse? How do you think that the stigma of migraine compares to other diseases and conditions? Do tell!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (23)
  • Carol Hayes
    7 years ago

    Would you consider supporting/expanding your statement about migraines not being fatal? While some of us may know what you mean by what you wrote in parenthesis, most non-Migraineurs will jump on it and feel justified when they sing the It-Won’t-Kill-Ya song. This info is from MAGNUM: http://www.migraines.org/myth/mythreal.htm.

  • Debra Nemeth
    7 years ago

    NOT FATAL?? Well..I’m sure there are many of us that come to a point when we just dont want to be the burden…or carry this burden anymore. Surely, there is something ‘wrong’ in there. SHIT!

  • Rachel Z
    7 years ago

    It is absolutely stigmatizing to have migraines, and especially chronic migraines. Case in point: at one job I was called down to Human Resources to discuss the number of sick days I had taken. When I asked, I discovered the head of HR had not bothered to check this before summoning me. I had migraines and the perception was that I had taken more sick days than most. When she checked my file she was forced to apologize — i had actually taken fewer sick days than the average person, despite having migraines (I didn’t mention this) nearly every day. Next she assumed the complaint then must have been my productivity. Upon looking at my time sheets, invoicing, new business generated, she found I was way ahead of the average. Again she had to apologize and dismissed me. It was all perception. I have lost a number of friends over migraines. Recently at my daughter’s birthday party, a General Practitioner, despite being an MD, repeated to a close friend’s boyfriend who had not attended that I had pulled a “stunt” at the party, referring to a seizure like hemiplegic aura that occurred during the party. I have lost several friends who just “couldn’t deal.” My own mother is embarrassed when I have hemiplegic auras in public because they are so externally obvious. At a previous job, a colleague thanked me after I distributed a one page fact sheet on migraines from a medical website following a particularly bad month, saying before reading it she had thought i was crazy and needed to see a psychiatrist rather than a psychologist. My mother in law still hints at this till this day, of course in the sweetest voice imaginable. Most friends don’t understand when I cancel plans at the last minute and some have no patience for it. My husband and i have had serious issues, though he remains a wonderful supporter, and I do understand his frustrations as someone living with a person who deals with daily pain. The Michelle Bachmann story only adds to what migraine sufferers must deal with every day, and damn the press for that. Of the online sites I searched, only salon.com was outraged by the use of “stress induced” disorder and the insinuation that she is somehow a junky because she takes meds. She’s made it this far. I doubt her migraines are that bad. I can name a million reasons Bachmann belongs in a nuthouse. Her migraines aren’t one of them. But the press is reinforcing the stigma we all already face. Shame on them.

  • Adele Schlazer Lester
    7 years ago

    I’ve “suffered”thru migraine attacks (severe aura followed by incapacitating headaches) since I was ten. I was embarrassed when I was younger but as I’ve aged my feeling is most people have no idea what a migraine entails – the majority of the public think its “just a bad headache-I laugh when co-workers ask me if I’ve tried common OTC meds! There IS af stigma to having migraines, and I just love it when people say “oh, you have another one”… as if they are mocking you. I find there is very little tollerance out there for migraine sufferers BUT I must say I’m gradually seeing more recognition from people as migraine sufferers who are visible in the media are coming “out”…

  • Leigh Borden
    7 years ago

    I’m quite lucky in that respect, I don’t think I’ve ever had a migraine and I rarely get headaches. I think many people confuse a headache with a migraine as well, but I know from when Karen has a migraine, it’s not nice.

  • Annie
    7 years ago

    I am very open and talk/educate about Migraine all of the time. However, I find I stay very guarded when it comes to MY Migraines. I work in Corporate America and despite my boss being great with my Migraines (he was my first teacher and his wife takes Migraine preventatives), I find it hard to tell him when I am experiencing a Migraine and need a little time. I don’t want to short change him, but I get nervous if he found out just how many Migraines I experience. I work hard to appear as ‘normal’ as I can even though I do have an intermittent FMLA to protect me which he did tell me was smart to have (in a nice, non-threatening way). Although I write weekly about everyday Migraine activity and some antidotes, I still blog anonymously after almost two and a half years of blogging. There are other things I have quietly done to deal with work that I have only mentioned to one or two people. I am the sole support of my family and have to do everything I can for my Migraines and my job.

  • Mieko
    7 years ago

    Migraine has ruined my life! Chronic Migraine has utterly destroyed it! I often think if I were in a wheelchair or had a visible disability people would understand but I have an issue that cannot be measured except I provide a verbal or written account and those accounts to the uninformed sound fantastic.

    Having had Migraine for 12 years, I can certainly say it is stigmatizing. I have dealt with people, who equate it to a form of schizophrenia suggesting or questioning me about hearing voices, a boss who accused me of being a drug abuser and having severe mental disorders and those who simply state it’s just not that serious. When I was first diagnosed the world really was my oyster, I was in college for full-time for Architecture and working then I got sick, was sidelined for a month while doctor’s tried to figure out how to help me and couldn’t help myself. In the beginning when I returned to school and work I hid my illness as the headaches weren’t too bad or frequent, I saw the raised eyebrows and heard the comments, “it’s just a headache.” And when it became impossible to hide I had to quit school with a decimated GPA and I started losing jobs because of my illness and how it affected my work attendance or quality and quantity. Imagine using a Dictaphone to transcribe legal documents when a migraine hits and you can’t understands speech (I’m not going to comment on how insensitive my employer turned out to be but will say he was bold enough to insult my mother concerning my illnesses – Epilepsy).

    As far as maintaining real world connections/friendship go, I have two friends, or I should say one friend and one pseudo-friend. The pseudo-friend refuses to educate herself about Migraine and doesn’t understand we cannot remain friends with her nonchalant attitude about my illness. The other understands as best he can and remains hopeful that things will get better. Throughout my illness as it is with life I expect to have many acquaintances but as I have this sickness, this disease that is shrouded in mystery, misinformation and ignorance I won’t have many friends. The friends I had prior to this couldn’t get away from me fast enough. When I was diagnosed I lost a few friends, I could handle that; I was never a partying girl, never a clubber so I wasn’t missing much I said “those were the rowdy ones” but once I was placed on disability the phone simply stopped ringing.

    I have found the stigmas in every facet of life when I say, “I suffer from Migraine”. Now most of my relationships are maintained online where I find many people suffering from various illnesses are turning for social connections. As for work, I’m on disaiblity and no longer have to deal with being fired, insulted almost daily, etc.

  • Suki Graves
    7 years ago

    Also, by the way, a linguist friend of mine just pointed out that Michelle Bachmann is a migraineuse not migraineur. I can’t comment on some aspects at the moment. I will say that migraine is a misunderstood condition. It’s a chronic neurological disease – not a headache. One does not “have A migraine”, one has “migraine disease”.. or an “episode of migraine”.

  • April Hinds
    8 years ago

    I have had migraines for 30 yrs. I’ve tried almost everything under the sun for treatment. Nothing has a more than 50% success rate.

    Many people throughout my life have told me I must have a low pain threshold or I just need to suck it up. When I am able to make it to work while experiencing a migraine and I tell a coworker that I have a migraine, very often the response is, “How can you possibly be here with a migraine? When my sister has one, she can’t move, is nauseous…she could never work while SHE has one.” Well, I’ve been living with this horrible condition for 30 yrs and I’ve learned to adjust. However, I haven’t been able to hold down a job for the last 2 yrs as a result of calling in sick at least 6x a month. Many friends just sigh when I have to cancel plans and many friends just think I haven’t researched migraine triggers. In other words, much of the feedback from friends and coworkers is ” Why don;t you do something to fix this problem instead of writhing around on the floor yelling for all of the lights to be turned off?”

  • Debra Nemeth
    7 years ago

    Been there too April. There comes a time when you just have to get those people away from your life for a time. They just add to the feelings of worthlessness!

  • Diana Lee
    8 years ago

    As someone who has a diabetes diagnosis in addition to chronic migraine, I would say there is more stigma associated with T2 diabetes, but yes, there is a ton of stigma attached to migraine disease.

  • Alice Stanley LaBudde
    8 years ago

    Until I had my first migraine on Thanksgiving 1992, I thought people who complained of them were just weanies who couldn’t deal with a headache. If you’ve never suffered a migraine, you simply cannot grasp the debilitating effect they have.

  • Debra Nemeth
    8 years ago

    @ Parin..”They” seem to know all the answers, don’t they? I use this, I use that..IM BEYOND THAT! NOW ITS BOTOX….Still waiting for that to help me!

  • Debra Nemeth
    8 years ago

    STIGMA? YES! I had a migraine in January that would NOT quit! The dizziness, the noise, light all that crap nausea vomiting..every drug tried. 6 weeks before I could get out of bed, could not focus my eyes on anything. Neruology…Opthamology…I requested FMLA (BY LAW AUTHORIZED) my supervisor “Deb..I need you to resign, so I can fill your position…you miss too much work”..GOOD Write that down so it might help me get diability!”…I would rather work, but MIGRAINES RULE MY DAMNED LIFE! I have never called out and lied about it! NEVER! I would work-sleep-work-sleep just so I could make it into work. F*** Her!

  • Jessica Madore
    8 years ago

    Having Migraine is definitely stigmatizing! Between people looking at you like you’re absolutely faking, to being treated like a junkie by Dr’s & nurses, to just plain being treated like a migraine attack isn’t “very bad” compared to other illnesses….I have felt stigmatized all my life! I have been made to feel as if it’s my fault, I should just get over it and grow up and deal with the pain. Having just come out of a week with one of the worst attacks I have ever had and being ready to lose my job because of the work I am missing really enforces the idea that society just doesn’t understand.

  • Lynette J. Plude
    8 years ago

    This is me all the way…do you know how many times these very words have come out of my mouth and how many tears I have shed over this in my 50yrs of migraine disease out of my 55yrs of life! How totally unjust!

  • Maureen Baxter Douglas
    8 years ago

    You hear a lot of I get headaches too. I don’t know how many more times I will have to answer the have you tried the Excedrin migraine pills. I am actually seeing them affect my abilities to do my job though. I can’t seem to process information properly some days.

  • Debra Nemeth
    7 years ago

    I AM DAMNED SCARED! PEOPLE WHO THINK WE WANT ATTENTION – DRUG SEEKING – I HAVE HAD IT WITH THEM!

  • Debra Nemeth
    7 years ago

    I am at the point where I can no longer respond in a polite way to that stuff. DAMN IT! MY LIFE IS CONTROLLED BY THIS MONSTER — shove the ‘well meaning’ (and usually unasked for advice) and LISTEN!’
    YES—I have lapses in memory–I used to joke (CRS=Cant remember shit). NOT FUNNY ANYMORE!

  • Jane Dougherty
    8 years ago

    I agree completely with previous posts. I’ve had coworkers and supervisors who don’t believe they happen at all, that it an excuse to play hooky. One supervisor had actually never had a headache in his life. And the stress only increases the number of migraines.

  • Parin Stormlaughter
    8 years ago

    I talk about this all the time but haven’t garnered a following yet. If all employers required a doctor’s letter of diagnosis for employees who call in sick with a migraine attack – I don’t mean a letter saying the worker saw a doctor for the attack in question but just a letter confirming a migraine diagnosis – then 1) people who just want a day off for themselves would stop falsely claiming “migraine” and go on to something else and 2) people who suspect migraine would finally make the move to consult a physician and get proper treatment and 3) we who have migraine would be validated and the stigma lessened.

    The worst stigma issues with migraine, I found, was in the work place. One of my bosses told me that if I would just use a migraine drug advertised on television (which is contraindicated for me because of one type of migraine attack I’ve been diagnosed with), then I would be CURED JUST LIKE THEY WERE ON TV. I am not making this up.

    I “worked disabled” for years before migraine and Meniere’s progressed to the point beyond which I could no longer do my job. Once my neurologist wrote that letter to management about my situation, then suddenly the floodgates opened and I was given official time to explore reasonable accommodation. RA gave me several additional productive years and I STRONGLY recommend that people take advantage of what’s available.

    My family sees me battle this daily. My daughters grew up with it. They have migraine too but already, their lives are far better than mine was. I’m proud of them and hope that research continues to make strides so that future generations will have the best lives of all.

  • Heather Campbell
    8 years ago

    Migraine can be very stigmatizing. I have been dealing with them for 13 years and I have actually had supervisors and/or bosses threaten me with termination if I “Didn’t get them straightened out!”. They have been chronic for me for the last 8 years and that is worse because when you get them more than most people do, people think you are a hypochondriac! What made it really bad is at my last job, the General Manager was a migraine sufferer and she had the nerve to threaten to fire me because she thought I was getting too many of them. Oh Brother!

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