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Advocate for Migraine – With Feet

2019 Update: For information on 2019 Miles for Migraine run and walk events, see the current schedule here.

Making migraine visible

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.

Fighting stigma

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.

Miles for Migraine Races

Things are starting to change. Miles for Migraine will host its 4th walk/run this year in Philadelphia on Saturday, October 5th. Runnin’ for Research will host its’ three races on September 28th (Morgantown, WV, Kingsport, TN & Denver, CO) as well. Miles for Migraine plans to expand the number of walks/runs around the country over the next few years to 25 events!

Raising a awareness

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).

So please, log in to http://milesformigraine.org/ or http://www.runnin4research.org/, come to the races if you can (and bring your family and friendsJ), or donate, volunteer, or sponsor the walk/run.

Dr. Young is the President of the Alliance for Headache Disorders Advocacy and Board Member at Miles for Migraine.

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

  • Gto
    3 years ago

    So true,. If had broken bone or was visibly very sick, outpouring of compassion would be overwhelming. Migraine attack though – only those that have suffered thru experience of even one or those close to you that also feel for what going thru are ones to offer sympathy.

  • Conlinr
    3 years ago

    Thank you for a great article! (Too bad the Baltimore Marathon, 1/2 marathon and 5K are all on the following Saturday)

  • Nautilustears
    3 years ago

    Trying get people to understand a migraine or even get any support for when I get one is impossible. I don’t want pity just a I’m sorry once and a while. I finally figured out a way to get people to understand the pain. When they say well take a couple of Tylenol or Motrin I tell them “My pain is like a “brain freeze” that will not go away” They look at me in shock and always say they didn’t know, and they’re sorry. Now I can tell them about these two organizations that are Advocating for Migraines. Fantastic!!!

  • Mixi
    3 years ago

    Nautilustears : I love your comparison. It does describe the pain we endure. And people also have to know about symptoms(not sure if it’s the good term) that comes along with the pain : nausea(throwing up), weakness, strong smell, lights, and many many more!!
    Thanks!

  • shirleykessel
    3 years ago

    As the President of Miles for Migraine, I have witnessed first-hand, the power of change when a person with migraine comes to one of our events, and brings their caregivers. My hope is that, in creating community of people with migraine and headache disorder, we will finally make so much noise that the impact will force NIH and other research funders to give us the attention we deserve.

  • Joanna Bodner moderator
    3 years ago

    Dear shirleykessel,

    This is wonderful of you to take the time to join in on the conversation! We are thrilled & honored that you are part of this community! It is remarkable how much these events have grown, the awareness they have brought, the amazing support they provide and you should be SO tremendously proud to play such an integral part of it all! Keep up the amazing work and keep bringing on all that “noise”! 🙂 We love it!!!!

    Thank you for all that you do and I wish you continued success and even more growth with these events!

    Warmly,
    Joanna (Migraine.com Team)

  • Nancy Harris Bonk moderator
    3 years ago

    Thank you Dr. Young. You are a wonderful migraine advocate.

    Nancy

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