Three Lessons Migraine Advocates Should Know
Congressional District: VT01
Chronic Pain, Migraine, Neurological Disease
Issues and Challenges
Beth has encountered: Access to Expert Providers, Access to Medicine, Disability, Geography, Invisible Illness, Job Insecurity / Loss
Reflecting on My Migraine Story and Some Lessons Learned Along the Way
Hello! I’m Beth! I’m here to share my “migraine story,” but want to do so with a few lessons I learned along the way. My hope is that in sharing these, I can pass along something useful to others before they need it.
Migraine is a Continuum
I am one of the roughly 40 million Americans who have migraine, but until a few years ago, I didn’t know this. To clarify, I knew I had migraine, I just didn’t know there were so many of us. I have had migraine since my early teens, maybe even before. I was always a “headachy” kid. My migraine attacks increased in my 20s, but were still episodic (fewer than 15 days per month), fairly well-controlled, and didn’t impact my life in significant ways. Yes, I would occasionally need to miss an event or reschedule an outing with a friend, but migraine attacks were rare enough that I didn’t think about “having migraine.”
However, in my mid-30s, that changed and the first lesson I learned was that migraine is a continuum. I had lived most of my life much nearer the less severe end of it. About six years ago, though, a perfect storm started my slide up the continuum into chronic migraine; a place I didn’t even know existed until I was living in it. By definition, chronic migraine means having headache on more than half the days of the month with migraine attacks on more than half of those days. It is estimated that the transformation from episodic to chronic migraine happens to about 3% of people with migraine each year. In all, about 1-2% of the population has chronic migraine. Among other things, those stressful events I experienced were one risk factor for migraine chronification.(1)
At first, my migraine attacks were classified as chronic but I was still having some migraine-free days. During this time, I was finishing my PhD, working, and living in Boston. Over the period of months, my migraine symptoms became daily, though. I completed my doctoral program and began work full time. Given the disabling nature of my attacks, I was granted workplace accommodation. However, despite these, and after exhausting short-term and other leave, I was told that my absences were putting a strain on my colleagues and I wasn’t keeping up with my assignments. I lost my job, my career. I moved back to my hometown to be closer to family for support.
Migraine is Underserved
I quickly learned my second lesson: between having fewer choices for specialists and the distance to healthcare when living rurally, finding treatment was incredibly challenging. Remember how I said there are about 40 million of us with migraine? Well, there are about 700 headache specialists in the U.S. Doing the math, that’s over 57,000 patients per headache specialist. They aren’t equitably located and wait times can be long. It took me months to reestablish care with the only headache clinic within 2 hours of my home (and I’m likely still luckier than most).
I also learned that I was quickly running through all my treatment options. I had already tried medications from all the major classes. Mind you, this was 2016-2018 and all my preventive treatment options were off-label medications borrowed from other diseases. It wasn’t until the spring of 2018 that a preventive was approved that had been developed specifically for migraine: the arrival of the CGRP monoclonal antibodies. Since then more treatments have been approved for migraine: preventive and acute CGRP treatments, a ditan, and devices. This feels exciting, but migraine still lags behind similarly disabling diseases. Part of the reason for such a dearth of migraine-specific treatments is the fact migraine is grossly underfunded. The lack of funding contributes not only to a lack of research (and researchers) and treatments, but ties back to the lack of specialists in the field.(2)
That period of transitioning from episodic to chronic migraine was so chaotic. I was adjusting to daily symptoms, and the anxiety of figuring out how to treat and manage them. My specialists were suggesting medications and other treatments, friends and family members were sending ideas they came across (“have you tried…?”), and I was wading into online communities looking for ideas. While I had a strong research background, it was easy to get overwhelmed by the amount of information and trying to figure out what was reliable. Eventually, I started to find more reliable sources of information like primary sources from those doing migraine research and secondary sources from the migraine advocacy and media sites who shared these studies. Equally as important, I started to find community, friends on social media who “got it.”
This brings me to my third lesson, finding my migraine community was life changing: one I could trust, that shared well-vetted information, one that was well moderated and supportive, and one that included like-minded people with migraine. I can’t tell you what those places will be for you, but I can suggest some of them and have posted many on my blog resource page. I also try to personally cultivate this in my MigraineChat communities on Twitter and Discord (blog, Twitter, and Discord links below).
My Motivation and Inspiration
My Motivation: Advocacy
The chaos of my transition to chronic migraine is where I find my purpose. I am deeply motivated by helping people access information about migraine more easily than I did. Reliable information and well-moderated support groups are out there, but vetting them takes time and skill. The time I have and my research background are invaluable. I don’t say that to sound conceited, but recognize these are things others may not have. So, my goals are to make the learning curve – i.e., to finding community, doctors, treatments, accessing care, overcoming insurance barriers – far less steep than it felt for me in that really anxious, overwhelming time.
I’ll leave you with a final lesson: migraine advocacy can be big or small. It can be focused on you or others. I bring this up because I fell into advocacy out of necessity, first for myself and then as a way to help others. However, this didn’t happen until I was pretty disabled by migraine and advocacy of any kind is a lot of effort. I think back to that time when I had much less disabling migraine. There are millions of people in that category; at the less severe end of the continuum. I know that some forms of advocacy take significant time and effort, but I want to propose that the migraine community find more ways to make advocacy accessible to everyone along the migraine continuum. Not only can it be personally empowering, but all our experiences are different and the range of voices is important.