09 Sep Advocate for Migraine – With Feet
Disease advocacy is everywhere. Pink ribbons abound, as do signs for the American Cancer Society, MS, Parkinson’s, Heart Disease, Alzheimer’s, ALS, Leukemia and the list goes on. People come to support these diseases and do something healthy and fun. But where is the disease advocacy for migraine and cluster headache? Why is that migraine, – the disease that is number 7 in terms of disability, number 20 or so in terms of impact – is completely invisible in the advocacy world?
The answer, of course, is stigma. People with migraine and cluster headache, and the doctors who care for them, are so beaten down by the disapproval of society for them and their disease that we don’t advocate enough for ourselves. When we can’t do it ourselves, our families and friends also don’t do the advocating like they would if we had other diseases such as cancer, multiple sclerosis or Alzheimer’s.
If you have migraine or cluster headache, in addition to your pain, other symptoms, and disability, you have the additional burden of societal disapproval – stigma. You can search through a dizzying number of approaches to control your headache disease and you may or may not get decent results. But there is almost nothing you can do about the stigma – the subtle digs, the ignorant suggestions, the condescension, and the outright meanness that you face. If you were struggling half as much with cancer, back pain, or most other diseases, you would get a hundred times the support and compassion. I have suggested that the way we use language (see my previous blog) can begin to reverse the stigma. On the other hand, participating, supporting, sponsoring, or volunteering for a series of new walks/runs popping up around the country is a much more powerful approach to reversing the stigma. History shows that almost all recent successful disease re-branding efforts have come through patient participatory movements. For example, AIDS and cancer each brought together their communities and successfully confronted the country’s biases, which led to more research and more acceptance. Just going to a walk/run for migraine is a revolutionary idea to many in the community who don’t get it.
Things are starting to change. Miles for Migraine will host its 3rd walk/run this year in Philadelphia on October 8th (San Francisco and Chicago were in August and September). Runnin’ for Research will host its’ three races on October 8th as well. Miles for Migraine plans to expand the number of walks/runs around the country over the next four years to 25 events. Next year we are adding walk/runs in Washington DC and Phoenix, Arizona. Soon we will grow by 6 or 7 races a year.
There is one more powerful action step you can take to fight against the stigma of migraine in addition to participating in an advocacy activity like a walk or race: ask others, who don’t have migraine or cluster headache, to participate and support you and your struggle. Ask them to personally contribute, or their businesses to sponsor these walks and races. Welcome the chance to tell them that migraine and cluster headache have the least research support from government or foundations relative to their huge burden of illness. Their efforts and money may therefore have more impact and might do more good than participating in other races for diseases that are much better funded.
Let me tell you a little about the two organizations that are conducting walks and races. Miles for Migraine races take place in large cities with headache fellowship programs. The money raised locally is used to support research and the education of headache experts in these cities. Part of the money is used to support national organizations like the Alliance for Headache Disorders Advocacy (AHDA). Miles for Migraine runs adolescent migraine camps and half day educational sessions for the community. Runnin’ for Research raises money for migraine and cluster headache research and sends it to national organizations like the American Migraine Foundation. It also supports the American Headache and Migraine Association (AHMA).
Dr. Young is the President of the Alliance for Headache Disorders Advocacy and Board Member at Miles for Migraine.