Want more attention to be paid to migraine? Start by sharing your story.
Early in the morning on June first, I was stumbling about a hotel room in Washington, D.C., trying to get dressed and make coffee in the semi-dark as my sister slept in the bed next to me. It was 6:00 AM, and I was getting ready for my first day ever as an advocate on Capitol Hill.
I hadn’t been nervous until that morning, but suddenly I got freaked out. I was going to meet with 4-6 aides of senators and representatives, and I’d only have a few short minutes to explain to them why headache and migraine disease deserve more attention and more funding. I was one of many people asked to go to annual event called Headache on the Hill. Happily, I saw a few online friends there, all of whom were ready to meet with their own policymakers on the Hill. You can read others’ descriptions of Headache on the Hill here.
But I’m writing this blog to tell you my impressions. Rather than recap the entire event from an objective perspective, I’m going to do what I love best: tell you how it went from a subjective perspective.
It. Was. Nerve-racking. Yes, it was also fun and meaningful and very important, but it was more difficult than I’d imagined to walk into a congressman or senator’s office, look at those important gold seals on the wall, and then spend maximum ten minutes explaining to the lawmaker (or his/her aide) why more attention needs to be paid to migraine. We had one advantage over a lot of advocates, though: as every person knows someone whose life has been affected by migraine, we knew that we could personally connect to everyone we spoke with. We didn’t fail to leave one of those fancy offices without first hearing about how migraine and/or other headache diseases had had an impact on the lawmakers’ lives. Oftentimes, an aide would mention his girlfriend’s trouble with the disease; others would tell us about how their aunts and mothers suffered terribly. Migraine has a very real impact and it was clear from talking to these folks in Washington that even relatives’ migraine attacks during the politicians’ childhoods had a lasting effect on them.
The only lawmaker who was able to meet us in person (along with an assistant) was Rep. John Lewis of Atlanta, one of the foremost Civil Rights leaders and a modern-day hero. Being able to sit at a table with him, his assistant, and three fellow volunteer advocates was one of the most amazing opportunities of my life. Rep. Lewis gave us his full attention, even when the bells were dinging all around us, indicating that there was a vote on the floor he had to take part in. I’d suspected that meeting with him would be the most stressful appointment of the day, but I couldn’t have been more wrong. He was so cordial, easygoing, and genuinely interested in what we had to say—he didn’t even glance away from our faces as we told our stories that were peppered with bell-ringing and other aides coming in to look for him. It was an honor and a privilege to sit with him for half an hour.
And that brings me to this, a point I am going to make repeatedly on this blog: we need to listen to each other. About everything, sure, but especially about migraine. This is especially true for all of you who have dealt with this disease quietly over the years, for those of you who are in sore need of a support system. Share your story. Write your state and federal representatives and senators. Spend time with fellow migraineurs, and take the time to explain to non-sufferers what it is like to deal with this disease.
Can you tell when a migraine attack is coming?