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Migraine Is Not Who I am

Migraine Is Not Who I am

It’s week three. I can tell what kind of day it’s going to be by the the ringing in my ears. The louder the ringing, the worse I’ll feel. Right now it’s loud…like the feedback through a sound system that makes you wince. Except it doesn’t stop. Like Seinfeld’s Uncle Leo, I want to scream: “Would somebody answer that damn phone.”

I have a low-grade headache, too. Along with some vertigo, some nausea, and the aforementioned tinnitus, I have migraine brain, the muddy thinking that seems to keep me wondering what I missed. An appointment? To chart a patient? Where I parked my car? I’m missing something, and it’s starting to really annoy me.

I’m having a hard time separating myself from my symptoms. I know I am missing something, and it’s taken all this time, but I have figured out what that is.

I am missing me.

Somewhere I crossed a line between having a migraine and being a victim of it. I am beginning to believe that this is who I am rather than how I feel. I became my symptoms. Now I cannot separate the me from the migraine.

I’m perplexed and pissed. Not as much by the symptoms—they will pass—but by my identification with them. If there were a 12-step recovery group for migraineurs, I’d qualify: My name is Bill and I am a migraineur. That thought quickly turns the feedback in my ears turns to sounds of screeching tires. I really want to hit the brakes on that.

How I relate to my symptoms is tricky. Part of me believes that you gotta name it to tame it. Staying with the 12-step program example, recovery from all manner of chemical and behavioral addictions begins with self identification and disease identification. My name is _____ and I am a _____.  In those terms, the line between who I am and what I have becomes blurred. That tightrope between self-identity and disease-identity is necessary to negotiate the first steps toward recovery. But I shudder to think it applies to my migraine.

My self-identity and my migraine-identity are a pernicious pair. I don’t want to identify with my migraine. I want to detach from it. I want to stand aside let the symptoms blow by me. I want to sip coffee and casually observe my symptoms as if they are not really mine…or at least as if they are not me. I want to stare down my migraine and not see my face on it.

The bad news? It’s week three, and I’m a little loopy and snippy. (And remember, my brain is behind the curve; I was probably snippy mid-way through week one.)

The good news? This is temporary. I have been through this before. It passes. As I have reflected on this episode, using my muddy migraine brain to sort through the data, I hold tight to that knowledge—this will pass.

There’s more good news. In telling this story, a few things bubble up through the experience. First, migraines are messy. I feel more than sick. I feel angry, tired, discouraged, ashamed, guilty… I hear more than ringing. I hear self-doubt, hopelessness, inadequacy…

Messy.

Second, I feel better now. Not because the ringing is gone. Or the vertigo or nausea. Or the anger and self-doubt. But because I can read over this story and observe my migraine. That’s what I really want. I want to detach. And there it is in black and white. My symptoms, my feelings, my mental machinations. Having written them out I can now read them more objectively. Having shared them with you, they make less mess.

That’s what community can create. It works in 12-step recovery. My name is _____ and I am a _____. That isn’t said in a vacuum. It is shared in meetings. If it works there, it can work here. Migraine.com is a community.

There is more to the migraine than the mess. This community makes that clear. There is the idea that somebody, somewhere can relate to this experience. That together, we can put this migraine thing into proper perspective. That we might make a miserable migraine into a meaningful moment.

My meaningful moment? Knowing this is not who I am and sharing that with you. Talking about my migraines, and all the craziness that accompanies them, has taken some of the messy-ness out of this episode. That rings loudly enough to squelch the feedback.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • glassmind
    9 months ago

    Stepping out of yourself and into community can be all the difference sometimes.

    Sometimed it is less how well we sing and more how many of us ate singing.

    The harmony is a wonderful thing.

    Thank you for sharing.

  • LindaD24
    3 years ago

    Hi Bill, I also am a migraineur and feel as though my life has been hijacked. Also thanks to your post, I now realize how the ringing in my ears is related to my migraines. I can’t even remember a day when I did not have any pain, from mild to intense. My enthusiasm and excitement for life events is now almost non-existant from dealing with migraine pain and attempted management. At least I no longer feel alone, thanks to this website. Thank you Migraine.com !

  • onehsancare
    3 years ago

    Hi, Bill! I’m Carolyn, and I’m a migraineur. I have felt like migraine is my life, too, and this community has made that life less lonely.

    I’m feeling so lucky right now–today is day 16 in a row with no migraine. It’s been many years since I could say that . . . and I hesitate to say it out loud for fear of jinxing it! I started Botox and what I’ve been calling the NO Diet (because it’s NO MSG, NO artificial sweetener, NO dairy except full fat, NO processed meat . . . thank goodness I’ve been freed from the NO caffeine and NO alcohol restrictions!) at the same time, in early August. I don’t know if it’s the combination of the two changes, or one of them, but I’ve steadily been getting better.

    I still MUST avoid perfume, so I still wear my mask in public, but that’s a minor obstacle. It identifies me to everyone as a migraineur, but migraine isn’t occupying my thoughts 24/7 anymore!

  • Tamara
    3 years ago

    I totally agree with the “messy” part – not just my house but emotional, physically and spiritually as well. I feel like I don’t have complete control over anything and can go from running around in a rage to uncontrollable crying in a heap when I have a migraine. And when the migraine storm settles down a bit (unfortunately never completely goes away anymore), there is that physical destruction left in its wake and the raw emotions.

    Many of days I sit curled up on the couch and just read stories like this to get it though my migraine brain I’m not being punished for something I did and there are others like me out there. Im not normally in the mental abilities to response (even today it may be hard to understand as the pain is still pretty bad) , sorry. It helps to know others are out there in there little migraine caves struggling like me.

  • Brooke H moderator
    3 years ago

    Hi Tamara,

    Thank you for taking the time to share your story. I’m so sorry you’ve been coping with chronic migraine. It truly is a condition that impacts all areas of one’s life, including our self-esteem. I’m glad that you’ve found reading the articles here helpful and that they highlight how you are not alone in this! I appreciated what you shared on the strong impact migraines can have on emotions. I thought this related article may be of interest : https://migraine.com/blog/brain-emotions/. Please come here for support anytime!

    Warmly,
    Brooke (Migraine.com team)

  • Maureen
    3 years ago

    It’s day 13. I’m mad as hell and I’m not gonna take it any more! Except I can’t decide if I wait for the headache specialist’s office to call back (Is it really unreasonable to think three days is too long?!) or go to the ER and deal with that… because my head isn’t going to explode right now, and I am not dehydrated and vomiting uncontrollably; I’m just sick of being hijacked, flying at half-mast, half-brained, ears ringing, brain-fogging, tears possibly springing, definitely missing something. So I putter on for a few more minutes, thankful for the community here. Though I may be losing this battle in this moment, I am not a loser, and, heck, I feel a little strength and victory coming on!
    Thanks, Bill.

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