Recently, I've been thinking about stigma. Talking with my patients, I get the sense that most of them feel they get remarkably little respect or understanding from employers, co-workers, family, or friends. Compared to my patients with epilepsy, multiple sclerosis, or Parkinson's, I think my Migrain...
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Migraines, Stigma, and Research
10/ 4/09 6:21pm
"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!
10/ 4/09 9:44pm
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.
1/26/10 2:09am
Thanks for your reply to the question on"Stigma". I had a director that actually gave me a poor mark on an anual performance evaluation because of the time I had taken off for Migraine. She also marked my Migraines as a "pattern". I was dumbfounded. I actually had to file a grievance with my Union (California Nurses Association) and found out it fell under FMLA guidelines.
I thank God every day I stood up and started educating people about my Migraines. I have recently had to change Neurologists, and the new one ordered five invasive tests to "prove" the other MD wrong about my diagnosis. She actually insinuated by asking mental health questions that I may be depressed or have a mental disorder. She wont be seeing me again. She will not get her way, I have opted to get another Neurologist, one that is credentialed in Migraines. To say that there is a stigma is an understatement.
10/ 5/09 10:18am
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!
1/26/10 2:14am
Hi there- I have hemiplegic migraine, and my administrator also tried to cause disruption in my file due to excessive abcenses. I contacted my Union, who led me to file FMLA paperwork for a chronic condition. I have not heard squat now that I have the right paperwork in place. You must advocate for your health condition.
Good Luck!!!
10/ 7/09 12:28pm
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
10/ 7/09 9:23pm
Most people don't "get it." That's it's a full body headache that can put you in bed for days or maybe it's "just" a chronic intractable migraine that sneaks up on you almost daily. Nor do they want to hear you complain a mere "headache." So, do what you need to do for you to keep your life going. Keep an emergency kit with you at all times that includes those little foam rubber earplugs you can buy inexpensively at the drug store, sunglasses, ice packs (disposable ones or keep gel packs in freezers at work or in a cooler in your car while you're out on the road -- Theramed makes a wonderful gel headache band that closes with velcro so you can wear it like a headband and hide it under a scarf), something to block odors (this is hard -- i have found mentholatum cough drops sometimes help a little bit in getting me through meetings though they don't stand a chance against work days when the road paving crews are spewing diesel fumes and road tar odors outside your office window), and of course all your migraine meds including those for gastrointestinal distress. Bring natural ginger ale to a family gathering so you have something you can drink. You can hide, which I've lost too much time to doing, or you can live with migraine. It's sure not easy. But the same family, work colleagues, friends and associates who go out of their way to help someone with a visible disease need to learn to acknowledge that migraine is not as simple as one of those fluffy imitrex commercials makes it look like on TV. Make sure you have your ADA paperwork in line to help protect you on the job or in college. In the work place, keep a yoga mat or other exercise equipment that will enable you to do relaxing stretches during your "coffee break." There's almost always a corner you can sneak off to, or a friend or colleague who will help you find one... someone who won't stigmatize you ... and be sure to show appreciation to those who help you get the rough times...
10/10/09 12:23pm
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.
10/11/09 1:55pm
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......
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I think Cleveland Clinic's Headache Center should be all over this. I will send this blog their way. Thanks for posting this!
I think that migraines are definitely stigmatized. I've fought them for over 20 years. From drs. to nurses, employers, family members friends, and the people who you thought understood but really didn't. No one can see your pain. No one can put it into context just how severe and disabling it is. With other diseases you can see the effects of it. When it is in your own head no one can see or feel it. There are people who use migraines as a way to score drugs and sell them on the street or get a good fix in the ER. There are drug companies who sell their product using the word migraine in it to up their sales. OTC doesn't treat migraines, but it belittles the people with migraines who are seen again by a large population of people as having just a headache that can be treated with acetominophren and caffeine. You have to be very strong to fight migraine pain, be able to stick up for yourself with drs and nurses and employers and coworkers. You have to have confidence to keep going when the world is trying to squish you like a bug. Sometimes the world does squish you and you do feel like a bug, and the energy for that confidence and fight gets sucked out of you while you are trying to to fight the pain and the stigmatization.
Many ways when you have fought severe pain for so long month after month, year afte year, it feels like post traumatic stress. You are literally put into a torture chamber, knowing you are going in, and how long you are in for. How long can a person keep going and smiling?
Now with new age thinking, I have had people tell me it is my karma I have migraines, and if I would just let go of wanting to suffer then I would be pain free. I've been told that faith will heal me. I have a lot of faith, and I am a spiritual person. Faith is what keeps me going. I have not given up faith or hope. It's hard to have someone tell you that you deserve to suffer and look the other way because it is your karma, or you deserve to suffer because you are not practicing faith or letting go of your suffering. Like you would really want to hang onto it.
It hurts. Not as bad as the migraine, but it hurts your heart in a deep way.