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Chronic Migraine’s Isolation and Emotional Torment

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.

2 Responses to Chronic Migraine’s Isolation and Emotional Torment

  1. Timothy Bauer says:

    Kerrie:

    You have a gift that can put into words what other migraneurs
    are feeling.

    “Even the most sympathetic, empathic friends and family cannot understand what it is like to live inside chronic migraine.”

    These words are very very insightful and accurate. Thanks for
    posting them. I know it is not really a comfort-but know
    out here in cyber space-there are others who experience
    migraines who can relate a little to what you are going through.

    Take it one day, one hour, one minute, one moment at a
    time Kerrie. And know that your blog has done a world of
    good.

    Blessings always,
    Timothy from Reno

  2. Kate says:

    Kerrie –

    After 12 years of chronic daily migraine, I often think “Oh, I’m USED TO being alone all the time now.” But that’s not quite it. My loneliness and sense of isolation can still hit me like a brick wall.

    You put it so well when you write: “the constant companion of severe chronic migraine wrapped me in a layer of insulation that kept anyone else from reaching me.” — I mean, how awful is it that MIGRAINE is our constant companion?

    For the first several years of this illness, it tore me apart to feel myself slipping into some new oblivion, (scratching and clawing all the way to hang on to my old life…) I could see “my life”, that I used to be a part of, continuing to happen all around me for my friends, family, even strangers; while I was sucked into this rabbit hole of nothingness.

    I fought it, but time takes its toll, and I, too, gradually lost touch with loved ones, – too exhausted to keep trying.
    Just a phonecall hurt my ears unless I found just the right moment, and a friend happened to have time to chat just then. Many stars needed to align just so. (much more likely for CLOUDS to align just so, as to trigger third migraine attack of the day.)

    It WAS/IS torture, as exhaustion has increased over the years, to give in to limitations, admit that I can’t be the social person I used to be. I’ve lost touch with great friends and close relatives. More to YOUR point, I’m out of touch with the ones who are still sitting right with me every day, who love me and try to understand, but just can’t. It’s that layer you write of – insulation separating us. Like a bubble – it’s invisible, but it warps the view in both directions. Can’t touch each other; can’t see each other clearly.

    They can’t come in here – into the migraine.

    They can’t get in, and I can’t get out.

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