The Stigma of Migraine… Among People Who Have Migraine

“Migraine’s not an ‘illness,’ it’s an annoying thing to deal with occasionally. It’s not like it’s disabling.”

“Anyone who says they can take an over-the-counter painkiller to stop a migraine doesn’t really have migraine.”

“If someone’s having a true migraine, they wouldn’t be able to be writing about it on Facebook.”

I see variations on these themes every day. The perspective depends where on the migraine spectrum a person falls. People who have infrequent episodic migraine find it to be a manageable condition and think that those who say migraine has overtaken their lives are being melodramatic. Those who have chronic migraine believe that anyone who isn’t as devastated by migraine as they are must be exaggerating a minor headache by calling it a migraine. Whichever faction a person falls into, they assume that everyone else experiences migraine exactly the same way they do.

Not everyone takes a side, of course. Plenty of people who have migraine have more compassion for others than this simple dichotomy indicates. Unfortunately, those people aren’t the vocal ones on the internet.

Oh, the internet — it’s like the little girl in the Longfellow poem, either very, very good or horrid. When the internet is good, it is a tremendous source for information and a place of connection that lets people know they aren’t alone in their struggles with migraine. When it is bad, it’s where people who have migraine belittle and shame others whose experience is unlike their own.

Anyone who meets the clinical definition of migraine does in fact have migraine, but migraine looks different for different people. Some have a few migraine attacks a year, others have them daily. Some can immediately stop an attack with medication, others get no relief from any treatment. Some can push through normal life with a migraine, others can’t get out of bed. Some are laid up for a couple hours during a migraine attack, others for days.

The details may diverge depending on the frequency, severity and duration of a person’s migraine attacks, but focusing on those differences denies the strength of our similarities. All of us have experienced how dramatically life can be altered by pain or any of the numerous other migraine symptoms. We all spend precious time, money, and energy seeking treatment. We all have felt the impact of migraine reverberate through our work lives, our families, and our friendships. Maybe these factors come into play for an hour while someone waits for medication to take effect, or maybe they dominate every single day. Either way, the basics are the same.

There’s enough stigma surrounding migraine without people who have migraine stigmatizing other people who have migraine. How can we ever expect the general public to take migraine seriously — something that is vitally important for the future of migraine research and treatment — when we’re so busy fighting about what migraine looks like amongst ourselves?

Let’s stop our version of the Mommy Wars and acknowledge that some people have it better than we do, others have it worse, but migraine stinks for every one of us.

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 (16)
  • Janet
    5 years ago

    Just wanted to say your articles continue to be great.

    Blessings
    Janet

  • Janet
    5 years ago

    Ditto..
    Blessings,
    Janet

  • brunnhilde
    5 years ago

    THANK YOU. I’ve only had chronic migraines for five months, but it’s completely changed my life. I have headaches most of the day nearly every day, but I’m still “functional” – meaning I can go to work and mostly keep myself fed and do laundry occasionally. But spending any time on any migraine website, I feel like I can’t possibly have “legit” migraines because I’m not throwing up and bed-bound…so I feel like I don’t deserve to even admit my own pain. Self-stigma! Thank you for making it clear that we’re all suffering no matter what form the migraine takes.

  • skatoulaki
    5 years ago

    Love your posts! I don’t know a lot of people who have migraines. My husband seems to have them, but he’s never been diagnosed and has at most one or two per year. My best friend has them occasionally, but she has not been diagnosed either. Still, I sympathize with them when they say they are having one. I think ANY headache can be debilitating, especially if someone is not used to having them.

    I was diagnosed with chronic migraine in 2004 at age 38 after having had them since I was at least 11. I had headaches nearly every day, but 3-4 times a month, I had the migraines that kept me in bed for three days with a bucket and dark blankets over the windows. Around the same time I was diagnosed I went on medication for high blood pressure, and strangely, those debilitating migraines all but went away. Now I have one or two of those a year and take an anti-nausea med that pretty much knocks me out for a day. I haven’t vomited since 2004 (yay!).

    I do still get migraines, but with the anti-nausea med, I’m able to deal with the pain enough to function (somewhat), though I do still get the auras pretty often.

    As someone who went from 3-4 nasty, debilitating migraines per month to being able to function somewhat normally now, I know too well the various ways in which migraine can present itself.

    Great post, and a great reminder that we are all in this together!!

  • barryolliver
    5 years ago

    I consider myself fortunate that I very seldom have nausea with migraines (unless I lay down), and the pain level is not excruciating most of the time. I get migraines between once a month and daily and they can last between half a day and 4 days. However migraines can affect me drastically as my vision is seriously affected as is my speech, physical coordination and cognitive skills. The symptoms often make me appear to be having a stroke – I have no idea of my name, or those of my family members. I may not recognise family members,and it’s often that after an attack I have little or no recollection of the event.

    At the extreme level, it’s obvious that there is something wrong – the number of times I’ve come to in the Accident and Emergency department of a nearby hospital is testament to that. However, when it is less severe I may simply appear to be intoxicated, and get treated like it’s something I brought upon myself, and get very little understanding or consideration – even from those who have more “typical” forms of migraine.

    I’m still staggered by the number of migraineurs who cannot accept that I am having a migraine if my pain level is not at least 8 on a scale of 1 to 10. Also If some medication works for them, they seem to find it difficult to accept it won’t work for me. Believe me, after forty years of migraines, I should know what does and does not work.

  • shine4him
    5 years ago

    Great stuff! I’ve seen all of that, and there’s also the “self-stigma” as well. As someone who has episodic migraine that varies widely in intensity, I sometimes feel bad about lurking around this site and doing research with all you chronic folks here. 😉 I feel blessed that I can still work and live a relatively normal life, even with interruptions. Sometimes I have to remind myself that my condition is legitimate too.

  • lacheln1
    5 years ago

    Great article! Migraines affect us all differently. I have found some to be judgemental towards my condition while others are accepting to an extent. I had no idea that there were so many people like me who suffer everyday. Thank you!

  • Gypsynurse
    5 years ago

    So sad because not only have I had severe complicated chronic migraines since I was 6, I am also a nurse that worked in the ER for 14 years and saw how not only people treated migraine patients but made it hard for me to get help when I myself was trying to get treatment for status migraine. Patience, empathy and compassion, Daily reminders of how I should be with others in pain. No one has the same pain.

  • whall7
    5 years ago

    Gypsy nurse,
    Isn’t it sad that healthcare providers see most migraneurs as drug seekers when seeking treatment in ER’s and offices.
    I could relate several stories but your 3 words say it all . Patience, Empathy, and Compassion. Thank you for your post.

  • kellyrobinson
    5 years ago

    What a great article. The difficulty has and always will be that everyone is different, and everyone can cope with different pain levels.
    I have had migraines for nearly 25 years and they too have changed over the years in the way I allow them to affect my life.
    I have made the decision that I will not let them rule my life – I take the strong prescribed medication and continue to work, go out, spend time with my family or whatever. They will not be my downfall and while not everyone can achieve that level of functionality it is what I have had to do.
    Life is too short and passes too quickly to allow migraines to define me. The times that I do struggle are when the medication has little effect (often the case now) or when I have had one for 4 days. It is a battle of wills, the will of the migraine and my will to not be broken.
    Thank you again for this wonderful article. Kelly

  • Priscilla
    5 years ago

    Thank you for this article and for everyone’s posts. I am a Migraine sufferer too. Mine are very sporatic. Sometimes I can go for a month or more without any. (THAT is wonderful.) Then other times out of the blue I get one every day for several days. I have no idea what brings them on and that is very frustrating. I have been to a neurologist and they tested my brain (of course it was while I was NOT having a migraine)…and I was told if they start being regular (daily) then she can put me on a daily medication. I prefer not to have to do that but if they came daily I could not stand it and might have to do it. Right now about 90% of the time or more I can tell when a migraine is about to come on within an hour before it hits me hard. I get squiggly eyesight. It is hard to explain unless you have experienced it. But it looks kind of like honeycombs to me and I just can not see right while it is happening. My vision is impaired to the point that I can not drive at all or read or do much of anything until it passes. Once it passes (usually within an hour) then the horrible headache comes on… and nothing can stop it. I have to go lay down and make the room dark and cover my eyes even in the dark. I often put a cold facecloth over my eyes. I try to lay quietly with no sound in the house or I can not stand it. The only thing I have found so far that helps me some is to take a Vicodan (prescription) and try to lay down and go to sleep. Usually after 1/2 hr or so the Vicodan kicks in and helps me sleep for a little while and if I am lucky I wake up and most of the migraine is gone with usually just a feeling of pressure on my head like something is sitting on my head where the migraine was. NOT fun at all. Ever since I got this much figured out if I am home I take a Vicodan at the first sign of the migraine coming on and go lay down immediately. I too am always not sure of others when people say to me OH yeah I get migraines too. It seems like everyone says it to me when I tell them I am getting a migraine or had one. Yet when they say they are having one they can function just fine. That really makes me wonder .. how can they function with a migraine? Maybe they do have a lesser type of migraine… I can’t say for sure but I know mine are very severe. I don’t even want to see anyone or talk to anyone or do anything at all when I get one …except close my eyes and lay down, be very quiet in the dark and take a pill and sleep. If I don’t do this … then once my impaired eyesight passes, then I get horribly sick to my stomach and have dry heaves and that is really NOT fun. I was at work when one came on one time in the beginning and I had to just turn off the light in the office and lay my head down on my desk and get a waste basket next to me in case I did vomit. But all I had was dry heaves. I had to go home and could not even sit up at my desk. Luckily I lived just a few minutes away and even at that it was difficult driving home. This was in the early days of my migraines before I discovered that a Vicodan would help me some and going to sleep. That as far as I know is the ONLY thing that works for me. When I think back I can remember my mom shortly before she passed away (she had dementia also) but she would sit in the room and say she had a bad headache and she would want the shades closed and the TV shut off and everyone to be quiet and not talk. WE had NO idea it was a migraine. And he doctors then were no help. I recall one telling me .. “IT was all in her head.” And we believed them. Doctors are supposed to know best right?? Wrong! YES it was all in her head .. but not the way they made us believe.. she was having bad migraines. I KNOW that now. I feel bad I didn’t realize it then. But I bet the doctors would not have listened to me anyway .. they were convinced because she had dementia and was a very nervous person that many things were all in her head. I have to wonder now how many other things that she complained about like pains, etc. were NOT all in her head but REAL.

  • Robin Gayle
    5 years ago

    Thank u Kerrie…. U said all the things I wish everyone in my life knew…. I’m sick of people always asking me how long I’ll be on meds 4 n are they ( migraines) really that bad? Also so true about the FB comment… I’ve often seen people posting that they have a migraine n I just want to comment back that there’s no way they could be on FB with a migraine… U just have a little headache… Plz stop belittling those of us who live daily with this torturous illness. Gets frustrating especially when people try to offer advice…. Like, have u ever tried Advil for migraines? Really??? I may as well just pop a few vitamin C’s in my mouth! After living with migraines 4 most my life n as they get worse as I get older I am trying to accept that this is my life… So thank u to all of those who contribute to the blogs & posts…. Makes me feel less alone even though I’m surrounded by my family n friends….. Of course none of which suffer from chronic migraines but most r very understanding.

  • vitamin_migraine
    5 years ago

    I unfortunately have been guilty of vocally expressing jealousy and envy of people who *only* get nausea, photophobia and a headache. And I’m pretty sure I fully believe if it’s just a headache, no matter how bad, it’s not a migraine.

    I think ppl with severe complicated migraines might also be mirroring behavior they’ve seen that have hurt them. My severe vertigo leading to loc and concussions as well as partial to full blindness and paralysis have been dismissed as “in my head” and an anxiety disorder for ten years before I ever got a consultation to see a neurologist. The pain would be so bad I’d ask to have my eye removed and they’d just say your eye is fine, you just want attention.

    So for people who have lived through that, I think it’s very difficult to accept someone who has a once a year relieved by Tylenol and ‘lots of water’ migraine with no neurological symptoms as having been taken seriously and officially diagnosed with migraines. But it comes down to jealousy and envy, and wondering why some people are (relatively) lucky and not others. It’s easier to project on the other than fully accept we don’t have control over our brains or bodies.

    I’m a compassionate person, but this article reminds me that when it hits to close to home, its easier to shut down than be supportive.

  • Priscilla
    5 years ago

    Your comments hit home hard with me in regards to my mom and doctors telling her it is “all in her head.” They dismissed it as an anxiety disorder too because she was a nervous person. Unfortunately she passed away without anyone ever realizing she had migraines. I know this now because of what I have experiences with my migraines. But they also made it sound like my mom wanted attention. It is very sad and I feel compassion for you and I understand. I have posted my story of my migraines above also if you care to read it. I hope reading these posts from others helps you a little. I know how difficult it is being a migraine sufferer myself and seeing my mom suffer too.

  • babzzzes
    5 years ago

    Well said, and I’m afraid that I’ve been one of those who believed that if you can ‘fix’ it with OTC medications it can’t really be a migraine. Ironically that was how I treated my episodic migraines, before I knew anything about chronic migraine! I’m now slowly coming to terms with the prospect of life with chronic migraine, learning more about the disease along the way, and recognizing its varied impacts on my daily life; pain, fatigue, mood swings and the like. I know better now, and understand that as migraineurs we share a common experience. Knowledge is key. You and others like you are helping to share that knowledge, and I thank you for it…

  • Katebestwick81
    5 years ago

    Very well written, totally agree.

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