Today’s prompt: Who do you know who has any headache disorder whom you look to as a role model for inspiring hope and never giving up? How do they inspire you?
This post took longer than usual because I had difficulty choosing just one role model. I’ve already written about several before. I didn’t want to rehash old material. I wanted to give you something fresh and new. I spent a lot of time in two airports today, so that gave me several hours to think. My flight from Kansas City to Washington had just been delay by an hour for the second time when inspiration finally hit. I realized there is one role model about whom I have yet to write.
There are a lot of famous people who have Migraine. Few ever speak about it in public. Even fewer tell the truth. The stigma is so great that public figures minimize or avoid discussing Migraine out of concern for their careers or reputation. Even Cindy held back for years, trying to hide the truth in order to protect her husband’s political aspirations. During the 2008 Presidential race, she endured a torturous schedule, bright lights, loud noises, irregular meal and sleep schedules. In her 2013 Today Show interview she admitted that she was fighting Migraine attacks during many campaign appearances.
I’m not sure what happened to prompt her decision. I just know that when she did that interview, I cried and shouted for joy and then blew up my Facebook timeline telling everyone about it. Finally, a well-respected public figure told the truth about Migraine on a nationally-televised news show. I couldn’t believe it was happening.
In a 2009 interview at home, she compares the agony of Migraine to torture. She follows up by sharing how difficult it was to admit that truth without minimizing her husband’s experience as a POW. She was right. Migraine is an onslaught on all the senses. I know patients with PTSD as a result of their own experiences with Migraine and stigma. I’ve had some nasty attacks that would certainly qualify as torture. Fortunately, I did not develop the symptoms of PTSD. Many of my Migraine friends have not been so lucky.
I think one key difference is validation. Diagnosed at a young age and surrounded by loving family members who were also migraineurs, it was years before I felt the sting of stigma. Stigmatizing events were humiliating and emotionally painful. Yet, I always had at least one safe place where I was believed and supported. Had I not had a validating early childhood, things might have turned out differently.
On of the best things that science can do in pursuit of Migraine research, is to find ways to empirically prove the existence of Migraine and to develop affordable, minimally-invasive diagnostic tools that actually produce a reliable “Migraine” or “no Migraine” result. In order to do this, we have to discover what bio-markers Migraineurs all have in common. An effective way to accomplish this is with a national patient registry that includes imaging studies, biological samples, and patient records. That is going to be a reality very soon.
Cindy’s hard work is finally paying off. The American Migraine Foundation has raised enough money to start a nationwide patient registry. While I know that it will take time to get it up and running, I’m already feeling impatient. I want to scream, “Sign me up!”
In speaking the truth, you put yourself at risk for public ridicule, and your husband’s political career on the line. Thank you for peaking up. You are an example of what all advocates should be — a voice for those who cannot speak and strength to accomplish what others only dream is possible.
The Migraine and Headache Awareness Month Blog Challenge
is organized by the American Headache and Migraine Association.
#MHAM, #MHAMBC, #migraine, #clusterheadache, #chronicmigraine