Stigmatized Diseases: Migraine Perception
By Dr. William B. Young
Recently I was trying to cajole some headache doctors I know to start a Miles for Migraine walk/run in their communities. They said to me that they wouldn’t be successful at getting many patients to participate because—and I paraphrase—“of the biology of the disease: migraine itself makes it so patients won’t go out and face the sun, the noise, and the movement — they are driven to turn away from things, not to do things.” The argument why patients won’t send family is, “they have to ask family to help out when migraine is bad and they can’t do something; they’re not going to want to ask for more from their families.”
Shouldn’t migraine research be fought for?
This stopped me, for a while. What if they’re right? Is it a fool’s errand to try and motivate patients to stand up and demand that society treat the 6th most disabling disease on the planet like it’s not the least deserving of all medical conditions? Is it acceptable to expect doctors, pharmaceutical companies, and device-makers to lobby for migraine to be taken seriously without a patient movement?
I’ve gotten used to begging, cajoling, and wheedling my patients with migraine to come out to a Miles for Migraine walk/run, to bring their family members, or at least “send an avatar.” I like showing patients that I find their disease worth fighting for, and not just with pills, injections, devices, and behavioral treatments. These walk/runs create public awareness, fund research, and fund training for future headache doctors. But it is the just showing up part that is most important – demonstrating that you find this to be an important disease.
We are louder in numbers
History shows us that disease perception changes only when the people affected and/or their families stand up and fuel this change. This happened for AIDS, breast cancer, multiple sclerosis, and autism. When these patients and their families joined together in participatory activities that garnered attention to their illness, they undermined the stigma and acquired resources that revolutionized the treatment of these diseases.
I know that people who have migraine have the strength, perseverance, character, and wit to manage their complex illness and make the most of their condition. Even if they don’t yet see how society has conspired to delegitimize their burden and ridicule their efforts to cope with their condition, people with migraine show their heroism every day when they drag themselves to work despite their pain; when they smile for their children despite feeling like a used dishrag; when they suffer through their worst, untreated migraine, so they can save their best medication to preserve their job or meet their most important social obligation. Miles for Migraine is about validating this struggle.
Seizing the opportunity together
I know that many of you feel that you have no heroism left inside of you, and that you cannot spend your limited function capital on something as unjustifiable as a walk. I know that some of you who are not so bad off don’t want to contemplate that your disease might worsen and might render your condition serious enough to justify a walk for you. But it might. If not you, it might for your children or siblings, whose dose of migraine genes might just be a little larger than yours.
Opportunity to change how a disease is viewed comes in waves. Right now opportunity is rising, and over the next few years it will crest. Awareness of the stigma of migraine has grown, and people are articulating ways to challenge it. Scientific interest in migraine is growing as new treatments and devices are approaching general availability. New research is showing behavioral treatments can remold brain architecture and stabilize damaged pain structures, so interest is rising. Let us take this opportunity to perform a small, additional act of heroism – to congregate with others who have migraine, and with the doctors, nurses, scientists, and well-wishers who care so much. I know that it’s more difficult to go to a participatory activity when you have migraine, but bring your sunglasses, earplugs, and a folding chair if you need it. Being present is what’s important. If you don’t validate you struggle, no policy-maker ever will, least of all your insurance company!
So here are some web sites to help you stand up and do something active against migraine, and for yourself:
Runnin’ for Research: http://www.runnin4research.org/upcoming-races.html
Miles for Migraine: https://milesformigraine.org/race-series/
Association of Migraine Disorders: http://migrainedisorders.org/get-involved
Migraine Research Foundation: http://migraineresearchfoundation.org/take-action/fundraise-for-mrf/]]>
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