Migraines, Stigma, and Research

I think Cleveland Clinic's Headache Center should be all over this. I will send this blog their way. Thanks for posting this!

"Is Migraine so stigmatized that even stigma scholars won't touch it?" That's a great question! Migraine carries so many stereotypes that there would be ample evidence of stigma, and ample field for research.

I don't get the impression that it is the same type of stigma that people experience with epilepsy or mental illness, however. I don't generally hear people viewing Migraine as shameful. I think it is more stigmatized by being belittled. Even my former headache specialist (so-called) told me "well, they're just headaches," as justification for accepting poor results. I wonder if the Migraine patients who come to you saying they have cluster feel they have to show up with a "real, serious" complaint to be taken seriously? I'm sure being belittled is just as stigmatizing as being shamed.

Thanks for the post!

It is an interesting thought. And it would be interesting to find out what percentage of people with migraines are stigmatized because of this disease.  I am fortunate over the last few years I have found most people to be compassionate. Perhaps beccause of the environment  I work in and perhaps because people know me as a hard working compassionate professional. Several  years ago however, my experience was not the same.  A supervisor reported to our director who called me into her office and made some very upsetting comments. She thought I was having a seizure of some sort and eventhough I had complained of having a migraine. Instead I was reported and treated poorly. The supervisor and the director had no concept of what it meant to have a migraine and they were amazingly  "health care professionals"  I have since then learned I must be my own advocate a speak for what I need when I am not well. Never assume that someone understands. They need to be educated.

In my own personal experience, for many years I didn't feel a stigma but for the last 2 and a half years I have felt it severely enough up the employment ladder to get fired. These were health care professionals so I and maybe you would have expected more. The RN's I worked with were compassionate. I worked with others who had illnesses such as lupus. We were all compassionate to them as well. When they had a flare up they were allowed to sit and/or leave as needed and everyone covered. But when it came down to it, migraines are an "invisible illness" there are no blood test that shows we need insulin or we could go into a coma, there is nothing like an epileptic seizure for a coworker to witness, there is no broken bones sticking out for people to say "wow that looks like it hurts", only the severe pain in our heads for us to try and explain to people really can't understand unless they have experienced it themselves. Sometimes you sit and try to get through the day while you feel like your brain will just explode and sometimes you think if you hear another key stroke on the computer you will just scream. Anyway, I digress....the stigma is definitely there and I think we are way behind on the research for it. I hope some group at the Cleveland Foundation will take it and run with it!

Teri, how does one go about starting a group in "health central" who would volunteer for research on stigma and migraine? 

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When I applied for Unemployment Compensation, I was honest. I listed Migraine Disease as a disability. Getting the paperwork signed by my PCP has delayed my checks about 6 weeks.

When the principal called me in to tell me I was not being rehired for this school year, her unspoken reason was my migraine history. (I had been called on the carpet for calling in sick with a migraine was breaking as school was starting, instead of logging into the computerized substitute teacher system. I never had access to that system.)

Some of my in-laws think I just don't like them because I disappear when they show up. Their loud voices and clashing perfumes and aftershaves are massive triggers for me. I've told them, politely and repeatedly, that I just can't handle the volume and fragrances all at once without getting sick. They don't get it.

I've turned from a bold go-getter into a weepy hermit because of this disease. I even avoid making telephone calls because the voices on the other end can be so loud, or I misunderstand them, or I mix up my words so badly.

What self-confidence?

Rebecca, The Island Mama

My biggest problems are from proffessors. They don't get how I can go to some classes in the morning, and then be sick in bed in the afternoon, and then fine the next day. Many of them want doctors notes...but I can't really go to the doctor for every migraine, I'd go broke in a week! I've had proffessors give me such useful advice as, "Take excedrin migraine, it works great and you won't have to miss class" Or "Just go see a psychologist, migraines are caused by stress right?"

I've just started telling them I have a neurological disorder. Not really a lie...and they take it more seriously.

Hi Dr. Young,

It think it is totally about stigma. I truly believe because no one else can "see" our pain, and having no way accurately measure it, (other than the pain charts) doctors, family friends or whomever may not really believe the amount of pain we are having. Epielpsy is another story, we can see what is happening to someone with epilepsy most of the time. Seeing is believing.

Stigma due to doctors telling us, "it's only a headache - no one ever died from a headache." Not really true- point in case- Abi Smith died in 2001 ultimately from Migraine disease. She was in Status Migrainous for seven days, began to have seizures then a stroke. She recovered in a few weeks, but when her next Migraine hit she had another stroke and died - she wasn't yet 22 years old. Maybe if there wasn't such a stigma not to bother the ER because she had another Migraine, Abi would still be with us.

So if patients are told it's just a "headache" by doctors, doesn't the stigma start there? I think it is acutally quite a feeling of belittlement" or shamefullness when others think that just a "headache" keeps you from your life. Migraine feels like a dirty word sometimes, and headache says just get over it. Now what do we do?

Education --- for everyone. Top on down......