As a part of Migraine and Headache Awareness Month, the American Headache and Migraine Association (AHMA) is participating in the European Headache Alliance’s “What’s Under the Hat?” initiative to raise public awareness of Headache Disorders. AHMA has selected Saturday, June 25th to be our “Under the Hat” day.
On International Cluster Headache Awareness Day, I participated in the European Headache Alliance’s “What’s Under the Hat?” initiative by sharing what it was like to live with Cluster Headache. I could simply repost that article, but that’s not enough. Today requires an altogether different approach.
You see, Cluster Headache isn’t the only thing under my hat. Actually, I wear multiple hats all at the same time. Some I choose to wear, while others chose me. Either way, I am determined to create hope and purpose using all my hats.
I was born with a hat.
I was born wearing a hat – Migraine. That hat never came off. It got stuck on tight and grew with me, becoming a part of my identity. I can’t escape it. Some days the hat is easy to wear — a comfortable and attractive accessory. At other times, this hat is tight, itchy, and horribly unattractive. I get more easy days now thanks to some really great “hatters” who help to make it fit just right.
The second hat almost broke me.
Later in life, I was given another hat – Cluster Headache. As difficult and weighty as the Migraine hat can be, this new hat felt more like a medieval torture device. What sick twist of fate could have possibly conjured this living nightmare? That kind of pain forced me to question everything I had ever believed about myself, society, health care, religion, faith…it was all up for grabs. Looking back, I really don’t know how I survived those early months without a diagnosis or effective treatment. Even now that attacks are infrequent, fear of the next “big one” can bring out the worst irrational paranoia. It doesn’t happen as often, but it’s clear that every attack still takes its toll.
Some hats just fall into your lap.
That was the case when earlier this spring I was approached to help lead The Cluster Headache Support Group. It was an unexpected and humbling surprise. In addition to a well-run online support group, CHSG has some exciting new initiatives in the pipeline that will benefit many who live with Cluster Headache. Because I know the lonely desperation that comes with the onset of this disease, I saw this an an opportunity to give back to some of my very own people. This hat is so comfortable and easy to wear that I don’t think I will take it off for a very long time.
Then I volunteered for the biggest hat yet.
Recently members of AHMA elected me to serve as their Vice Chair. I accepted this honor and challenge to take on a larger role in the world of headache disorders advocacy. This new hat feels is different – the weight of responsibility it represents is noticeable. I didn’t choose Migraine or Cluster Headache, but this time I walked right under this new hat and willingly planted it squarely on my head. As Vice Chair, it is my job to facilitate member relations, recruitment, and retention. In this new role, I work for you.
You are invited to join us under the Big Hat.
Whatever is under your hat – Migraine, Cluster Headache, Hemiplegic Migraine, NDPH, Tension-Type Headache, or any other headache disorder – AHMA works for you.
The lights are low, we’re fragrance-free, and there’s extra room for ice packs and O2 tanks.