Three Reasons for the Stigma of Migraine

Three Reasons for the Stigma of Migraine

Stigma imposes a huge penalty in the everyday lives of patients with migraine. It increases social isolation and causes adverse consequences to self-esteem and mood. Stigmatized diseases get less research funding, and payers are less likely to pay for the treatment of stigmatized diseases.
In order to reverse the stigma of migraine we need to understand why it exists. I believe there are three distinct reasons it exist – they are independent, but feed on one another. Here are the three reasons:

Invisibility

In general people with migraine don’t seem obviously sick, except to people who know them very well. To strangers, employers, and casual acquaintances, the person with migraine does not seem particularly ill. The pain, sensory abnormalities, dizziness and brain fog (to name a few symptoms) could be extreme, and no one would be the wiser. But to the ones who know them very well — they know! An observant husband might tell a wife: “you’re a six (out of ten) aren’t you?” And they are probably right. Sometimes the loved one will know there is a headache, even before the patient has registered it for themselves. But for the rest of the world, it is hard to empathize with a thing they can’t see.

Ignorance of the person with mild migraine

How often is the person with mild migraine dismissive of the one who has it much worse? How often has someone with severe, life altering migraine, heard a version of: “I don’t understand, when I have migraine and I take 2 excedrin and an espresso, and I’m fine?” This is outrageous. Imagine the person who had a lumpectomy, no radiation, or chemo, and was cured telling the woman with metastatic breast cancer in her bones and liver that “breast cancer isn’t so bad.”

Nasty negative migraine meme

A meme is an idea that is transmitted from one mind to another, competing for space in the brain of the person who carries it. According to Catherine Foxhall, the world’s foremost historian of migraine, this negative perception began in the late 1700s and has persisted since. For her own excellent explanation, I refer you to the brief article available at here. In short, before this historical period, migraine was treated like any other disease. Treatments were not good, but migraine was not looked down upon. Then, rather abruptly, people with migraine were represented as privileged, self-absorbed individuals, who used their migraine as an excuse to keep from completing their social duties. The doctors who took care of them were also ridiculed as out of touch, incompetent practitioners who encouraged their patients’ neurotic tendencies. A negative, feminized view of the patient with migraine has persisted since, as outlined by Joanna Kempner’s excellent book “Not Tonight”.

A proposal

So how do we approach these ideas? Let me propose a different strategy for situations driven by each of these reasons:

Reason 1:

For people who just don’t see, I suggest reasoned education. Most people can learn about the invisibility of migraine. Their empathy can be engaged – they can get it. Teach them. Tell them about the individual struggle and also how common it is for migraine to lead to lost careers and withered social connections.

Reason 2:

For people with mild migraine who denigrate those with severe migraine, I would take a sharper approach. While it is true that many do have mild migraine (and it is helpful to acknowledge this because migraine has a wide spectrum of severity and treatability), this is a crime of commission, not of omission. It is too easy for such people to sink back into their own more trivial experience. I suspect a good, memorable challenge to their assumptions is indicated. The breast cancer example might work. Repeat as necessary.

Reason 3:

Against the evil meme, we need a truer, more heroic meme. We need to show how people with severe or daily migraine struggle on, doing amazing things, working until every last ounce of strength and energy is expended, and smiling and carrying on in social situations that magnify their pain and set them back for hours, days, or weeks. Only a new and positive meme can replace the brain space occupied by these negative perceptions that have plagued persons with migraine for centuries. There are millions of quiet and hidden migraine heroes – when they are seen and heard, this ugly lie about their disease and their character will melt away.

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 (20)
  • lucylou
    11 hours ago

    I have lost confidence in myself and trust in others who talk behind my back….very sad and painful to know others wrongly judge me. I now limit friendships to those who understand. and the fight to have my meds covered by insurance is such a struggle also. I have even had neurologists who are dismissive, cold, and rude….painful…..

  • bluesguy
    4 weeks ago

    Interesting article. However, you sadly included reason #3. This seems to only reinforce the opinion that we must all soldier through another severe migraine cycle. Perhaps, that was not your intent . I have lost a long career working in the mental health field (23 years). I would say that it might be as silly to ask a Schizophrenic to deny their hallucinations, as it is to ask a migraine sufferer to deny their neurological disorder, and the debilitating symptoms they experience.

  • KatieT
    7 months ago

    Talk about an all around home run. I think the worst thing about chronic migraine is the frequency. People think I’m fine because I’m showing up to work and didn’t call off, but I’m running on an 8/10 for the 5th day in a row. I only two days to use for FMLA and I genuinely believe people think I’m lounging at home watching TV when I call off.

    There’s so many times people say to me ‘oh I get migraines here, have an excedrin’ and I want to yell that I could take the whole bottle and would only get relief because I’d die. Or get catty and say I’m so sure my neurologist prescribed me norityptaline, sumatriptan, and added B2, Magnesium, and told me how to home make a hospital migraine cocktail, because excedrin will take care of it. It’s hard to curb the frustration. I have a coworker who has fibromyalgia and migraine associated with it, who occasionally tells me I must have low pain tolerance if a migraine debilitates me. And I know she’s never been in the er gushing blood from a bloody nose because the pain is so bad that her blood pressure is over 220/180…but I have…but people don’t see me on those days, because that’s what my fmla is for. Friends don’t understand how rare it is and incredibly thankful I am when I don’t have to cancel plans last minute. I wish I could show someone my auras. I wish they could feel my 10s for a day, so they can try to fathom 26 days of it. I can’t understand how so many stigmatized and invisible illnesses suddenly are being recognized and understood, but migraines are still trapped in the dark ages.

  • Sarah.wallin
    7 months ago

    KatieT, It’s pretty frustrating how chronic migraine is stigmatized and completely underestimated by people who don’t know what you go through. So many members of the community feel the same way, so you are not alone. -Sarah (Migraine.com Team)

  • Cerys
    1 year ago

    I appreciated this article – clear, concise, and spot on. As another commenter suggested, the solution for #3 might be tweaked as it seems a slippery path back into the thinking in the stigma inducing mentality of point #2. May I suggest that perhaps what’s needed “against the evil meme” isn’t an exaggerated heroic one but a meme that’s more humane. Or, one that uses humor to reveal the abject stupidity of the evil meme. I think there’s also a need for better terminology from the medical field to distinguish type/severity.

  • Merri
    1 year ago

    Excellent article!
    This really hit home: “. . .working until every last ounce of strength and energy is expended, and smiling and carrying on in social situations that magnify their pain and set them back for hours, days, or weeks.”

    In my my case, it set me back many years, and I feel as if it is going to take the rest of my life to “catch up”. So many things have piled up because of days and weeks at a time unable to attend to them. My home is a disaster, in need of so may repairs and a solid purging. It’s frightening how quickly chores and clutter can accumulate when, after working through a few days of pain, coming home with not even enough energy to feed myself, all I can do is throw myself at my bed. Throw in regular repairs and upkeep and it just becomes overwhelming. It seems anything accomplished on non-migraine days just never put a dent in the whole mess.
    That being said, I have been almost migraine free for a little over a year, with a preventative medication that actually works for me. Yet the struggle continues, because things had gotten so out of hand over the course of decades. So, in a way, migraine is continuing to have a negative impact on my life.

  • Anne
    1 year ago

    and of course there are people who just get normal headaches, but equate them to migraines because they don’t understand that a migraine is a full body experience. I WISH I just got headaches.

  • estes1
    1 year ago

    THANK YOU! I get sooooo irritated with people who have no idea what a migrane actually is and get a “regular” headache, then call it a migrane. My husband, for example, will get a headache once in a blue moon. He uses hydrocodone for his back and usually the headaches mean he’s behind schedule for taking his pain meds. He will be unusually verbally abusive toward me, then, mockingly tell me he’s sorry, he has a “migrane.” I will ask him, can you see well? Do you see tinfoil-like images? Can you feel your hands and feet? Do you feel faint or dizzy? Do you feel as if you are having a heart attack or a stroke? Can you think clearly? How about nose bleeds, cause you’re about to get one…

  • jaianna
    1 year ago

    This is a great article. There is one part I object to though. The new meme seems to say that our heros should be people who don’t take care of their needs. Who struggle of in spite of their pain and other symptoms. This seems to subtly reinforce that the migrainer must be faking when they can’t do this. Would we ask this of the breast cancer patient?

    I wish I had an alternative suggestion but I have a migraine hangover.

  • Polly Moyer
    1 year ago

    Excellent article, thank you. I was discussing this issue with a friend who is a neurologist and who has an interest in how language used in medicine impacts onto this. Her feeling is that when doctors use terms like photo ‘phobia’ stigma attaches immediately and adds to the other stigma associated with migraine. She’d like to see ‘phobia’ replaced by ‘sensitisation’ and for patients to be encouraged to use the same terms.
    Many thanks again.

  • lizzietishlizard5566
    1 year ago

    Kudos for an amazing article on an all to pervasive issue!! The parallel you draw w breast cancer is SPOT ON! As a migraine sufferer for 25 yrs I have debilitating ones that require emergent treatment as well as the lesser background level daily ones that breakthrough despite daily prophylactic meds like Topomax, etc. and other treatments like Botox. Agreed because it is an unseen, misunderstood, and under studied disorder a lot of ppl dismiss it. I also think bc of the correlation w female hormones and ‘oh don’t a lot of women get those??’ comments migraine headaches are often written off as emotional, over exaggerated, and imaginary.

  • felix5
    1 year ago

    I take Topiramate daily to ward off migraines. I’ve been taking this for years–I’ve lost track how many. I have breakthrough headaches anyway, sometimes twice a week, then I take Maxalt. I try to avoid the latter, which makes me quite ill. Recently, I started smelling things that weren’t there–smoke, skunk, weird odors. I was diagnosed with sinusitis, and I’ve seen a neurologist several times. Last year I had a mild MI. I know all this is related. So when I hear someone complain about their “migraine” and ask for an aspirin, then say they are fine, I am sorry, that makes me livid. My last migraine came on from accidentally seeing the sun flash on a window; I was sick two days. Aspirin indeed.

  • Karen Klink
    2 years ago

    I’ve had migraine for fifty years and now I’m getting mild migraine at least every three days that almost always begin in the afternoon. All those years of constant meds I had to take to get through a work day—Excedrin (caffeine), Imitrex, etc.—became an addiction that eventually did nothing but give me rebound headaches. I am warning all of you that take too much of these now: BEWARE. I have finally retired but now nothing works and I have constant headaches. I have been to one neurologist after another and tried it all.

  • litoria76
    1 year ago

    Mine started when I was 16 – all I could do is come home from school and go to bed. Luckily they were every day or every day for 6-8 weeks at a time. Over the past 2 1/2 years they have been every day and I usually wake up with them. I’ve tried everything with no relief aside from the 30 percocet i get per month, which it now takes 2 at a time for a few hours of relief. I do get rebound headaches too. I’ve been seeing the same neurologist for almost 6 years and she admitted that she thinks my migraines are caused by my anxiety & depression but it’s really the other way around. It’s awful being in pain every day but not believed because it’s invisible. It sucks having to depend on my mom for everything because I can’t work. Sometimes I just wish it would end – the pain or my life because this isn’t a good quality of life…

  • Pain in GA
    2 years ago

    Trying to explain the thoughts shared by Dr. Young while in postdrome is a task. I am thankful for the wise and compassionate words of the discerning doctor to remind me someone “gets” this. Why is it the World Health Organization recognizes the disabling impact of Migraine Disease while the US flounders about, making its sufferers beg to be understood by employers, further provoking comorbid depression and anxiety? Shame, shame, shame on our “first world” treatment of migraineurs. Wishing you all plenty of spoons today and always,
    Danielle Howell

  • pigen51
    2 years ago

    What makes it even worse is spending my whole life trying to figure out a fix, and the only thing that works still is narcotics, and doctors are all leery about that now, of course. So because of people who abuse drugs, I am made to have to suffer through migraine headaches most of the time. I know that they say that narcotics are not a good idea for migraine headache relief, but I know how to avoid rebound, after over 40 years of experience. It is just so emotionally draining sometimes.

  • Janet
    2 years ago

    Dr. Young
    This is the first article I’ve read by you. OUTSTANDING….
    My family..immediate and extended don’t understand or care to understand migraine…even though I’ve suffered daily chronic migraine the last 16 years and migraine for 40 years.

    I don’t forward articles to family because I know they’ll be deleted, never read. This article I have sent my siblings who I think will read it, not the ones who won’t my husband because I fake too well, and our daughter who also suffers from chronic migraine….our son whomalsomsuffers from migraine,must not enough thinks it’s all in my head…exactly.

    Thank you
    Respectfully,
    Janet Jones

  • ddnben
    2 years ago

    What an awesome article! I can relate to every single item there. It is so hard for people to understand unless you’ve been through. I now hate telling people I have a migraine because they act like “it’s just a headache, take something”. I’ve had 4 surgeries on my neck and it combines with my migraines. But as long as I tell them I have I’m sick and my neck hurts. Thanks for the article!

  • aks868
    2 years ago

    Dear Dr. Young,
    Thank you so much for your articles! I have been your patient in Phili a few times in the past and am still trying to “cure” my migraines, but I always remember your kindness and understanding when I was hospitalized. You are so right about the stigma of migraines–especially with Reason 3. I think that we migraineurs can also be hard on ourselves. I often wonder why I can tough it out somedays and on others can do nothing but lie in bed with a bean bag over my face. It is time to recognize our heroics, rather than our shortcomings. Thank you again for your wise understanding.
    Alicia

  • lizzietishlizard5566
    2 years ago

    Great write up!! I think you are most definitely onto something w the breast cancer analogy. In addition to migraines I was injured lifting a patient and as a serious back injury. As a result I have had many surgeries and have an intrathecal pain pump. When ppl say oh ‘I’ve hurt my back and I now run marathons and go to crossfit’ often it’s just not even in the same ball park. I smile outwardly bc most of these ppl are never going to get it. Education or not withstanding.
    Invisibility is a HUGE issue. If ppl can’t see it they have a very difficult time understanding and/or believing it exists. Take mental health issues in our society. They are so stigmatized and taboo when in actuality a simple google search can help most ppl understand that neurochemical imbalances are to blame for a great deal of what plague mentally ill folks. Still taking medications for things like bipolar disorder is a touchy subject in our society. How is this any different from a diabetic requiring insulin to function?
    I also feel as though a large reason migraines aren’t respected and acknowledged as being the destructive force that they are may be because of two other things: more women experience them and they can be tied to hormones. This makes calling them ‘a womens’ issue’ or a ‘monthly problem’ accepted practice. While there is a partial truth in this, that doesn’t mean it’s LESS of an issue OR something that’s easily treatable and/or dismissed. In fact often, myself included, hormones have a compounding effect and make treatment even more difficult.

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