Coming to Terms With the Losses of Chronic Migraine
Last updated: May 2023
"I’m feeling not just the physical pain, but all that I have lost, and it is profound and catastrophic and will leave a crater in me that nothing will ever fill. But I’m also feeling all that I have in my life, which includes what I have lost, as well as the great unknown of what life might still bring me." - If I Stay, Gayle Forman
This excerpt from the novel If I Stay is from the perspective of a 17-year-old girl who has barely survived a car accident that killed her parents and only sibling. She is wavering between life and death in a coma, trying to decide if she should re-enter her body and live or if she should let go and die. Obviously, these fictional circumstances are more dire than living with chronic migraine, but the weight of her words hit as if I'd thought them myself.
How much of my life have I lost to migraine?
In some ways, the last decade of my life feels unlived, like I skipped from my early 20s to mid-30s without experiencing everything I expected in those years of my life. When I think of how I spent that time, the image burned in my mind is of me lying on the couch, nauseated, with my head screaming. And yet, I still did plenty in that time (just not as much as I think I should have). I've traveled to amazing places, developed wonderful friendships, helped care for ill parents, became a writer, lived in three vastly different cities, and danced my heart out to lots of live music.
How was most of my time spent?
While I wasn't living life as I imagined living it, I was fully alive in the land of chronic illness. I wasn't always coherent, and it was difficult to persevere (to say the least), but I was still learning, growing, and changing as a person. All my relationships suffered, my physical strength and stamina diminished, my work ground to a halt, and I was depressed. I didn't want to live at times, but I still kept at the daily slog. In those years, I felt like I wasn't living; I was actually moving mountains.
How did I make it through?
I could have given up, either explicitly through suicide or no longer trying (to find effective treatment, to leave the house, to have some pleasure despite the pain), but I haven't. I'm not sure how or why, other than the tremendous love of my friends and family, sheer stubbornness, a passion for life, and the "indomitable ability to slog through adversity" that Anna Quindlen writes about in Lots of Candles, Plenty of Cake. Maybe this is all it takes to keep on going, but it isn't like this is an easy recipe to follow.
Will it last?
There's also no guarantee I'll stay as healthy as I am now. The medication may stop working, and the diet may prove effective subterfuge or placebo, and new triggers may pop up…. I'm squeezing out as much living as I possibly can while also coming to believe that living with debilitating chronic migraine is just as much of a life as having an impressive career, spending loads of time with friends, and traveling the world. It is sometimes boring, I don't always think clearly, and I'm frustrated a lot of the time, but I'm still breathing and experiencing everything in my environment. It isn't the life I'd choose, but it isn't all bad either.
In the past year, has insurance made it difficult to get your migraine treatment?