Embracing the migraine identity

There’s a popular saying within a lot of chronic illness communities…

You are not your illness.

But what happens when your illness starts before you’re old enough to remember it? Does it not become part of your identity?

It certainly did for me.

I don't remember a time when I didn't have Migraine. Try as I might, I became known as “the girl with headaches long before I could do anything to change it. Once I realized that Migraine was becoming part of my identity, I did everything in my power to minimize its influence on my reputation. For three decades, I was determined to prevent it from becoming the one thing people remembered about me. I hid the symptoms and the treatment from everyone whenever possible. I never talked about the attacks unless it was obvious that I was hurting. If someone asked, I minimized their impact. I assured people that I was driven, motivated, and capable of taking on the world with or without Migraine.

So how did I get to the point that having Migraine is what I am known for?

It took losing my dream.

I started graduate school at the 2007 fall term. Between work and school, I had no life. My husband and I knew it would be that way. We were determined to stick it out because of the potential for a dramatic pay increase. To go from Case Manager to Therapist would double my salary, if not more. That’s a strong motivator!

For two years I slogged my way through, determined to not let Migraine force me out. Through sheer willpower and the generous tolerance of many professors, I did manage to graduate. I passed my exam, got my license and accepted a position with a great agency.

I was looking forward to getting started in my dream career. It really was everything I’d ever wanted in a job, except for one thing. I kept getting migraines several days each week. Some would knock me out for a whole day. When that happened (at least once a month), I had no choice but to cancel appointments. I only got paid for my billable hours, so if I didn’t see clients, I didn’t get any money. I wasn’t in any trouble with my boss (also a migraineur), but I did miss out on some cash. That last year, I missed out on over $7,000 thanks to Migraine.

To make matters worse, the symptoms of Fibromyalgia made their appearance while I was working with this agency. So now I hurt all the time! I didn’t really know what was wrong and naively thought that an office job would be easier on my body.

So I quietly built a private practice in addition to my day job. When it got busy enough, I resigned and set up permanent shop in private practice.  The migraine attacks got worse and the side effects were terrible. Cluster attacks and fibro flares added to the nasty mix. It got to the point that I had to cancel or reschedule appointments at least once a week. It broke my heart to realize that I was no longer helping clients if I couldn’t reliably show up for scheduled appointments.

I had no other choice.

I was disabled by Migraine (among other things) and I couldn’t work anymore. I knew what I had to do, so I started the application process for Social Security Disability Income (SSDI). It didn't take long to get an approval. I guess I really was in bad shape!

After a 38 year war, Migraine had won...at least that’s the way that it appeared.

I’d been blogging about my fight with Migraine since 2011 and pretty engaged in Migraine-related social media since 2007. I wasn’t going to just quit. After all, I couldn’t really do much else. Blogging kept me sane. Social media kept me from feeling isolated. I was becoming a recognized name in the Migraine community just because I was lonely and needed support.

About a year ago, I got an interesting email from Migraine.com. Nancy Bonk had been talking about me. They needed some new Patient Advocates.

Migraine.com - "Would you be interested?"

Me - "Sure. I’m already online all day as it is. Why not help out?"

That’s how I went from trying to hide my disability to embracing it as my identity.

What about you? Do you hide it or embrace it? How does being online help?

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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.

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