Some questions are simply not easy to answer, and it’s strange to me that for some reason this is a cause of stress. I want to have answers – for myself and for others. I want to be able to explain what is going on, when it started, why it’s not getting better. I really WANT to know what is currently unknowable. Maybe because somehow, in some way, this would give back some sense of control, or maybe it’s my innate need to understand, be understood, and have migraine acknowledged for the disabling disease that it is.
A Life-Long Migraine Warrior
As a life-long migraine warrior, when people ask how long I have had migraine attacks I really don’t know what to say. My default is usually “over 45 years” or “as long as I can remember from early childhood.” Even harder to answer would be when I was diagnosed! And then there are the endless questions about why I’m “still sick,” what causes migraine, and of course, why doctors aren’t able to help. As much as there seem to be endless unanswerable questions now, I grew up at a time when migraine was even less recognized than it is now. The only thing I’m really sure of from childhood are the memories of darkened rooms, explosive pain, pain medications that no child should be taking, and a long trail of old wives’ tales remedies which, at best, did nothing and, at worst, made me more sick.
Growing up as a child with migraine is certainly no cake walk. It wasn’t 40-50 years ago, and it still is not. I have vivid memories of trying to make it through a school day, flash backs to school nurses who insisted on telling me that “fresh air and exercise” would make me “feel better” as they shoved me out into the bone-chilling English weather. Phys Ed instructors who didn’t get that exercise made things worse. Endless studying through blurry eyesight, nausea and a pounding head. The list goes on and on for high school, and once I went to university that was only survivable because I simply didn’t have to show up to classes when sick. Thank goodness for a kind-hearted and much valued friend who shared her notes with me on countless occasions!
Unsurprisingly, many of my memories are simply one big blur, thanks to my brain feeling like it was reduced to a spongy swamp most of the time. It’s still a mystery to me how I graduated both high school and university, managed to move into the working world of the “normal person” in a quasi-functional way, and raise three boys through multiple ER trips, medication side effects, cancelled plans, and countless days spent curled up in bed. It’s a mystery to me how any of us do it, but especially our children – many of them too young to understand what is going on or how migraine could potentially impact the rest of their lives.
Nothing Short of Miraculous
Thinking back, I find it nothing short of miraculous that those of us born in a time when there were literally no medication options to treat migraine were able to function at all. Every time I get frustrated at the lack of answers now, and how poorly controlled migraine is for so many of us, I pause to remember how far we have come, and the incredible advances seen especially in the past few years. I look at the clinical pipeline which to me represents hope. HOPE in the midst of a devastating disease which takes so much from so many of us. HOPE that maybe, just maybe, there will be real answers, medications that actually help without intolerable side effects, doctors who are educated, scientists who are passionate about getting answers. HOPE for a society that understands migraine is not just a headache, but an incredibly complex and incapacitating neurological disease. HOPE for the future. That hope somehow gives me permission to have unanswered questions.
One thing I am learning is to accept not having all the answers. To kind of “breathe into” the disease, realize that there are still many more unknowns than knowns, and that I don’t need to have all the answers. I’m learning to shrug my shoulders and say, “I’m not really sure,” or “I wish we had the answer to that.” I’m learning to accept the really bad days without letting them stop the occasional good ones, and to rest when needed. Really rest! And… to let go of guilt for the things I can’t do and pick myself up time and time again and keep on going!
Let Us Know
Do you struggle with unanswered questions? Are you able to live with the unknown while holding onto hope?
NOTE: Originally published, but no longer available, on Migraine.com in 2019
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