Friday, September 13, 2019

Headache on the Hill 2019: My Experience

In February, I joined a group of 160 advocates in Washington, DC at the 12th annual Headache on the Hill lobbying initiative. The event is organized by the Alliance for Headache Disorders Advocacy (AHDA). Healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

This was my first time participating in Headache on the Hill. The first day was filled with advocacy issue training and Hill visit preparation. We learned more about what our 'asks' would be (I'll share more in a separate post, Headache on the Hill 2019: The Asks, if you're interested) and we practiced sharing our personal stories of living with headache disorders, so that we'd be prepared to approach and interact with our policymakers.

The following day, we all came together for a group photo and a policy meeting, and then we broke up into small groups to visit our respective congressional members' offices.

My group didn't have scheduled meetings until the afternoon, so we split up to rest until then. One of our group members was unable to attend meetings because he was dealing with a migraine attack. While I know that being unable to participate was in many ways just as excruciating, we carried his story with us and used it in our meetings as a powerful example of what living with migraine disease is really like.

One group member down, I spent the day partnered up with my headache specialist (Dr. Amaal Starling) to attend our scheduled meetings.
  • Our first meeting was with a staff member, and we felt a lack of interest in what we were sharing.  
  • Our second meeting ended up being part of a "roundtable" situation, which basically meant that there were multiple groups there during the same time-slot, but the Representative was there in person. He had some personal interest in headache / migraine, but was dismissive to me as someone living with migraine and focused his attention on my partner (as a healthcare provider). 
  • Our third meeting revealed the misunderstanding and stigma of headache disorders, but was where we really leaned on the story of our missing group member, as it was his congressional district's office we were visiting.
Based on conversations with others that have attended Headache on the Hill before, my experience during the three meetings I attended were a bit different or rougher than "normal." It may have been a push into the deep end, but Dr. Starling and I worked well together in advocating for the headache community.

It was quite powerful to be surrounded by so many people with a passion for advocacy work. We were all on a single mission: to be the voice of all people living with headache disorders. We bravely shared our stories, to help others better understand what it's like to live with these diseases. I'm honored to have been able to participate, and I look forward to continuing to do so.

"There is no power for change greater than a community discovering what it cares about." 
- Margaret J. Wheatley

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