At the beginning of 2013 my migraine patient community was fairly small. It was me and my best friend. It was okay. I hadn’t thought too much about stigma or disease burden or anything, but these things were starting to wear on me none-the-less. I had a baby and insurance issues and I was struggling, and my best friend was little help as she was suffering her own major challenges in life. Since I didn’t work, I volunteered, and at the time I volunteered in the cancer community, which is a pretty organized community. I began to wonder if that model could be brought to the migraine world. I wanted to try, but I figured I couldn’t do it alone and I didn’t want to recreate efforts that had already been done.
I started to hunt around for patient organizations focused on migraine and found nothing of note. Then, one day in the fall of that year I stumbled upon an announcement for a patient conference in Scottsdale, Arizona held by an organization called the American Headache and Migraine Association (AHMA). It was a patient run organization with some doctor advisors. I had to go. I wanted to help. I wanted to be a part of the community. I knew that I could bring my talents to the community and I knew that I could be helped by having the bond of more people that “get it”.
Going to Arizona and meeting the people at the first AHMA conference opened up a whole new world for me. Listening to the speakers put into words what I had always felt inside about my disease. I’ve had migraine disease for nearly my entire life. My first attack was when I was 5 years old while suffering spinal meningitis. Unfortunately, the attacks didn’t stop after I healed from the illness. They got worse over time and by age 15 I was chronic. Soon after I became chronic, daily. Most of my life people didn’t understand that things were as bad as they were. My family, friends, and teachers didn’t understand. At first I didn’t even have the words to express how bad I felt. I was too young. Then later I believed I was just being weak or overreacting. It wasn’t until I was 16 and met someone else who described their chronic migraine disease that I understood what I was going through. I thought “this is me, she’s telling me about my life.”
My parents tried to apologize when I got the diagnosis and a doctor explained to them what was happening, but I didn’t ever feel they had anything to for which to apologize. They didn’t know, and how could they? Migraine is stigmatized in every corner of our culture as just a “bad headache.” Most people don’t even know that it is a disease that is different from an ordinary headache that can be treated quickly and simply with Advil or Tylenol. Most people don’t know that the disease comes with lots of other symptoms that are not head pain. For me those include really scary things like Alice in Wonderland syndrome and also this crazy sense of doom that comes out of nowhere for no reason. It’s like a panic attack that isn’t because it doesn’t come with any of the other symptoms of a panic attack, and is the herald of a monstrous headache and vomiting. Good times.
It was nice then, at 16, to know that I wasn’t alone and that other people felt like I did, and that I wasn’t weak or crazy or overreacting. It was nice to know that there were possible treatments. When I discovered AHMA it was even nicer to know that there was a whole community of people that understood and that had more language to discuss all these issues that I already understood but couldn’t quite express in words. I had always been good about keeping up with the latest treatment options for migraine, and staying in touch with my neurologist, but AHMA helped me to find out what was coming out next.
The organization also focused on advocacy, but not as much as another organization I was introduced to at the conference called Clusterbusters. Clusterbusters is a patient organization that supports cluster headache patients. While I do not suffer from cluster headaches, I was and still am in awe of the spirit and tenacity of this group. I want that for migraine patients as well and so I chose to work for cluster patients to learn from them and serve them. Clusterbusters and AHMA both offered me a home in this community and I love every minute of my time in this population. Even though AHMA is no more, I still have valuable friendships and have found ways to work in the space to help others. Now I have a new family and I’ll never be alone with this disease and that makes me feel so much stronger in my daily fight with it. My daughter now suffers this disease as well, and it is more important than ever to me that the future for migraine patients and all headache patients is brighter. I’m glad she has a growing community to welcome her and hold her as she navigates this.
Eileen Brewer is not alone and neither are you. She serves on the board of Clusterbusters and volunteers extensively in the migraine community.
