Earlier this month I had the honor of speaking to members of the healthcare industry on behalf of Migraine patients. As part of their ongoing efforts to engage the patient community ahead of the much-anticipated release of their anti-CGRP drug, Amgen and Novartis invited me and a handful of fellow advocates to take part in the 2nd annual Migraine Blogger Summit.
Every opportunity comes with a side of doubt, especially when living with chronic daily Migraine, and attending the Migraine Blogger Summit in New York City was no exception. I knew the travel days would be long and difficult and that a trip like this would ask me to use all of the coping skills and management tools I have been collecting on my journey. But hugging the Migraine writers who helped me find the bravery to tell my own story and whose words made me cry was an experience so affirming and precious to me that I couldn’t say no -3,000 air miles be damned. (Amgen and Novartis paid for my travel, but my opinions are my own.)
What does it mean to be your own Migraine advocate?
Although exploring New York City with my Migraine blogger soul sisters was not the only purpose of the journey, it helped make the trip memorable and worthwhile. Dealing with something like Chronic Migraine, especially daily migraines, is such a life-shattering but highly unique experience. I often walk around feeling like an alien because my symptoms can be so disabling, and yet on the surface I look pretty much normal. Chronic Migraine changes you and changes your life in ways that are really impossible to understand unless you’ve experienced it, which is why connecting with other people on similar paths is so powerful.
The official purpose of Migraine Blogger Summit ’18 was to discuss how people with Migraine advocate for themselves at home, at work, and with their doctors; what tools and resources help our efforts of self-advocacy; and how the healthcare industry can help.
Self-advocacy is one of the most important and most difficult parts of dealing with a highly stigmatized disease like Migraine. Migraine stigma refers to the idea that Migraine is widely misunderstood and delegitimized in society and medicine, although at the same time Migraine is accepted by many as a disabling disease.
At the 2017 Migraine Blogger Summit, we met at Amgen’s campus in Thousand Oaks to discuss the stigma of Migraine, something that most people with Migraine understand intimately but the general population is fairly unaware of. This year’s topic of self-advocacy builds on the first summit, taking the conversation past barriers to successful Migraine treatment to practical solutions for overcoming these barriers.
Sometimes self-advocacy means getting up and dusting yourself off
The Migraine Blogger Summit ’18 began with a wonderful presentation by Meghan Buzby, the Executive Director of the American Migraine Foundation, on the importance of the patient voice. She provided an overview of AMF’s awareness campaign and community support group, Move Against Migraine, as well as some great information on ICER’s review of anti-CGRP drugs. She helped explain why now it is more important than ever for Migraine patients to speak up and advocate for themselves and others. (For more about ICER and the importance of engaging, see CHAMP.)
We dove into the discussion on Day Two of the Summit, but I had to make a difficult decision to skip the first half to sleep. Between a time change, a rainstorm, and a long travel day, my resources were spent and I was met with terrible Migraine pain. Flying set off a bought of vertigo and nausea like I hadn’t experienced in months, and the pain and cocktails of symptoms made me too shaky and sick to stay conscious through the morning. Luckily, I passed out immediately when I got back to my room (I had gotten dressed and at least tried to make an appearance before realizing I was not able to function), and I felt a lot better after a few more hours of rest.
I made it back to the Summit in time for the second half of the discussion, an amazing lunch shared with new and old friends, and the photo op. It had been lightly raining constantly since I’d landed in New York 36 hours earlier, but the clouds lent us a few dry minutes for a photo shoot.
Recognizing that I was unable to attend the discussion that I so desperately wanted to, communicating that fact to the organizers, and taking myself back to bed when my body demanded it was the single most difficult part of the trip for me. Self-advocacy means a lot of things, but most deeply it means learning to listen to your body, even when you really hate when it’s telling you and it’s been saying that same thing for, like, years. And not just listen, but change, rest, take care. Self-advocacy is one of the hardest parts of being sick, and I’m still learning, little bit by little bit.
Although there were some tears and managing of expectations involved, the Migraine Blogger Summit ’18 was a personal self-advocacy success, rain clouds and all.