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Letting People In

Although more than a week has passed since I was been overwhelmed by the isolation of chronic migraine, the memory of that intense emotional disconnection echoes. The lingering thoughts are less about what I felt recently and more a nagging remembrance of my very worst days. When the migraine pain regularly reached levels 8 and 9, and chronic migraine wrapped me in its armor, a sharp barrier between me and the rest of the world.

Not only did I feel like my friends and family could not possibly understand what I was experiencing, I would not, could not tell them what it was like. I was so ashamed of how sick I was. I felt like a failure for letting migraine dictate my life. Like if only I had tried harder or been more motivated, I wouldn’t be so disabled.

Letting other people see me in the throes of a severe migraine is how I began to pry shame’s death grip off my emotions. I’d like to say I chose to let people see me at my worst, but the truth is I had nowhere to hide. My husband and I were staying with friends at Thanksgiving. They hosted a party so our local friends could visit with us. Everyone knew I wasn’t doing well and they wanted to see me. My husband knew I was at the end of my rope and was no longer willing to push people away for me.

I had days of level 9 and 10 pain (and I do not use that number lightly), gut-churning nausea, dizziness, and the whole host of phobias (photo-, phono-, osmo-), I was too weak to stand on my own and had abdominal cramping so severe that my body spasmed up off the bed in a V. But my friends refused to leave me alone. People came in one by one to express their concern and love. They held my hand and talked softly for a few minutes, then let me rest.

No one thought any worse of me, nor did they pity me. No one cast me aside as weak or a failure, but were amazed by my strength and courage. All anyone wanted was for me to feel better, to get beyond the hell that I was so obviously in.

That was nearly five years ago and has proved pivotal in releasing my shame, guilt, and self-judgement. Yet I continue to struggle to let people in. I still pretend I feel better than I do. It is partly about not letting others see my vulnerability, partly to convince myself that I’m not as sick as I am. I guess it gives me a little sense of control.

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Comments

  • Kim Smith Lawson
    6 years ago

    I seem to have this trouble, too… I don’t want to share because I don’t think they will “get it” because of comments that have been made, but am hurt that they don’t get it. It’s a double edged sword for me. I, too, feel very vulnerable and ashamed when I repeat things in conversation days later, when my children even remind me: It’s hard to hide every part of a migraine- sometimes alone is good, and sometimes it is way too lonely. I have opened up to some, who have told me I should hide it as much as possible to the world. That hurts terribly. I know they just want me to get better, and so do I. I take it one day at a time, but I am a chronic hemiplegic migraineur. It is what it is.

  • kateymac
    6 years ago

    The part about feeling like a failure really speaks to me. No matter how many years pass, and no matter how clear it is that I’m doing everything I possibly can to cope/manage/improve, I still feel shame over being disabled by this illness. I wouldn’t feel that way toward anybody ELSE in my situation, but I’ve yet to truly give myself the same respect.

    It’s EMBARRASSING to be sick all the time, to have to keep saying no to invitations, or worse, to cancel after saying yes:

    “My head’s real bad today, I’ll have to skip it”…
    “I know I just said yes 10 minutes ago, but now I’m getting a migraine and I have to take drugs and go lay in the dark; SORRY!”
    “I can’t”, “I can’t”, “I can’t”…
    “Sorry”… “Sorry”… “Sorry”!!!!!!!

    Often, isolation is just easier, even though that’s not at all who I used to be.

  • arden
    6 years ago

    This may sound nuts but one way I try to organize the chaos and misery of a migraine is to be thankful for it. It must fit into the plan somehow. If I pray for the Great Spirit to take it away and it stays, then I must conclude I have something to learn during this time from my suffering. Although I wouldn’t wish it on my worst enemy or ever for myself, if I can bring my poor head around to being thankful, even during the worst, there is then more light and hope which does ease things.I can endure it better without the additional agony of feeling like a victim.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Janet.

    Thanks for sharing with us. I’m not sure however, that it’s a good idea to “fake the pain level” any day. Being in pain doesn’t discount who we are as people, but it does minimize the severity some people have with migraine disease.

    Those who know and love us understand and/or accept the pain we are in. If not, in my opinion, it’s an issue they need to work on, not one we need to try and convince them of.

    Nancy

  • Janet
    6 years ago

    I just started thanking The Lord for the migraines and asking how should I incorporate them into my day. But somehow when they’re so debilitating, like today, they don’t fit at all. I’ve lost another day. Pretending they’re not as bad as they really are works for me most of the time, but my husband asked me to stop doing that because he thinks I feel better than I actually do and if I blow up at a comment or get frustrated he tells me he had no idea I was feeling that bad. So how do you pick and choose when to fake the pain level…today I couldn’t…I sent him on organized plans and I sit here in our new home of 4 months in a new state alone, as my husband just joined me after we had to live apart until he retired. Welcome home…not really..more like welcome back to what he had a reprieve from…pity party today..and I really get angry with myself when I let that happen.
    Blessings
    Janet

  • Candy Meacham
    6 years ago

    Another reason I don’t let people see how I really feel a lot of the time, is that I don’t always want the conversation to be about me. And about MY pain. The other day I missed the fact that a friend had lost 10 lbs from worry, job stress, and other problems. I feel bad about not realizing what was going on with her. Another of our group picked up on it right away. I want to be part of the REST of life beyond my own disease – as much as I can.

  • Melissa
    6 years ago

    Thank you for sharing! I always push myself thru pain just so I’m not missing out. Its nice to know I’m not the only one that does that.

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