The Isolation of Chronic Migraine
Last updated: September 2023
The most painful, nauseating, and vertigo-inducing migraine I’ve had in months coincided with an overnight visit from a good friend I haven't seen for four years. He, my husband, and another couple went to dinner, then came back to my house so I could spend time with them. Even though my friends literally surrounded me, standing in a circle around the sofa I sprawled out on, I was overwhelmed by a sense of isolation. I felt like I wasn't actually there, even when I made eye contact or spoke. My friends and husband did nothing wrong, nothing to exclude me. The migraine had drawn me so deep inside myself that I couldn’t connect.
Feeling a physical emptiness
I decided I was best off in bed. Washing my face and brushing my teeth required such monumental effort that I didn’t even get to say goodbye to our guests. I barely made it to bed, then was wide awake, thinking about how incredibly alone I felt. The isolation gave me a sense of physical emptiness. It was as if I wasn't even there -- like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally.
Wishing others knew the true impact of chronic migraine
Even though I'm extraordinarily fortunate to have family and friends who try to understand the impact chronic migraine has on my life, there are so many things they don't think of. Like that, I can't always sit at a noisy restaurant and be in their presence even if I'm heavily drugged and catatonic. Sometimes I can, but, like when our friend was visiting, sometimes I can't be upright for more than a couple minutes without blacking out. Or that running an hour late can mean the difference between me being engaged in the conversation and hidden in my bedroom.
I know I am not alone
Of course, I know I'm not alone. From the moment I first discovered a migraine forum in 2004, I've been aware of the vast number of people who also live in chronic migraine. The most startling part about our experiences is their similarity. I've even become friends with some of these folks "in real life." Knowing other chronic migraineurs is an immense comfort to me. Yet it doesn't keep me from feeling like I don't fit in normal life.
Trying to make the most of the life I have
I saw my friend very briefly. I squeezed his hand because I couldn't get up to hug him. I congratulated him on his recent engagement. I got to see that he is over-the-moon in love. When I put a positive spin on the night, I'll be happy I got those moments of connection even when I felt awful. When I’m angry and feeling like this illness is desperately unfair, I see just how much of life I'm missing out on.
Usually, I find solace in the knowledge that most of my friends will be here for me when I'm able to engage in the world again. Right now I'm acutely aware of life moving past me, of my friends making memories together while I lie in the dark, alone.
Have others downplayed your migraine pain?