By Kerrie Smyres | April 18, 2013
When the worst migraine I’ve had in months coincided with an overnight visit from a friend, I was overwhelmed by how incredibly alone I felt, even when surrounded by friends. In The Isolation of Chronic Migraine, a post I wrote about that night for Migraine.com, I said:
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. (Read the whole post here.)
My friend visited last Thursday. Although I haven’t felt isolated like I did that night again since then, the memory of when my migraine attacks were at their worst has continued to haunt me. In those days, I felt disconnected all the time. Like the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me. No one, not my friends, family, or even my husband, could get through it.
Much of this time was when I lived in Seattle. In my bedroom there, the closet took up one long wall, but the doors were a regular closet door width. This left a nook that was difficult to access. I used to lie in bed and fantasize about curling up in that tight space, where I could be comforted by the darkness and the enclosure. I don’t think I ever did it — it seemed a desperate move, like doing so would mean I was millimeters away a psych ward — but I do remember sitting on the floor in the tiny spot between the bedside table and the wall. Even there, migraine wouldn’t leave me, and the sense that I was disappearing from the world was magnified by the knowledge that I took up so little physical space.
Thankfully, those days are behind me. I say this not only because I’m on some preventives that reduce the severity of the migraine attacks, but because I don’t think I will be able to disconnect like that again. Since those days, I’ve allowed my friends to be around me when I’m in a bad migraine attack. I’ve let other people see what it can be like and have spoken about it more openly. I used to close off as soon as someone asked me about migraine, as if acknowledging it would make it more real. Now I answer questions readily and have described the experience to non-migraineurs. I have written about those times and how close I was to suicide.
Then again, it is easy to say I won’t get to that point again on a day I’m feeling better. Last Thursday night was scary both for the emotions I felt and how reminiscent they were of worse days. I am far more connected than I was a few years ago, but, truthfully, I’m still detached. I haven’t returned to calling friends and family for no reason and am nowhere close to being as social as I once was. I’m not in massive pain all the time, but I still have a migraine nearly every day. I’m physically and mentally exhausted much of the time. My emotional and physical strength are stretched taut in support of myself; my ability to care for others comes in small, unpredictable bursts.
Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine. Despite all the explaining and writing I have done, I still cannot capture the bleakness and alienation I have felt. The physical sensations of chronic migraine are horrendous, but the emotional torment may be even worse.