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What a Difference a Decade Can Make

One of my favorite pieces of writing (both the process of writing it and the final outcome) went up on Migraine.com over the weekend. Entitled, I Am Not a Migraine Sufferer, I Am Not a Victim, it begins,

“Do not call me a migraine sufferer. I have an illness called migraine, but I do not suffer from it. Having migraine is not a choice, suffering from it is. Suffering is an emotional reaction, a decision someone makes to allow the difficulties in their life to cause mental torment. I cannot avoid the physical and emotional pain of migraine, but I can choose how to react to it.”

Some readers said that the post was belittling or shaming people who don’t think the same way I do. That was absolutely not my intent, but it got me wondering if I would have reacted with anger if I’d come across the same post. Then I remembered the time, 10 years ago almost exactly, when I saw an article from Oprah’s magazine called Living With Pain being praised on a migraine forum.

Reading it enraged me.

I was in the most desperate place I’d been to that point (though I’ve been far more desperate since then) and the ways the author described coping with chronic migraine, tension-type headache and cluster headache seemed like total bull. I’m pretty sure I thought that her pain couldn’t possibly be as severe as mine, that no one could possibly have that attitude with the sort of pain I endured.

Today I am laughing at all the similarities between my attitude and the one the writer of the Oprah article describes. I’m not sure where or when or how I picked it up, but I’m unbelievably grateful that I did.

It is this attitude that I believe has kept me going, even when I couldn’t fathom how I’d get through another day. It is why I finally had a migraine-free day after at least 12 years of daily attacks. It is what compelled me to investigate an essentially unheard of migraine treatment to discover one that actually helps me. It is why I’m so happy to have days with only head pain and why level 4 migraines aren’t a big deal (well, that and the perspective that comes with having been housebound and bedridden from migraine).

If I want to find the joy in life, if I want to continue to reduce the frequency and severity of my migraines, I cannot think of myself as a sufferer.¬†This is not because migraine (or any headache disorder) is trivial or insignificant, nor does it mean I am without grief and anger about what it has done to my life. For me, thinking of myself as a sufferer is a short step away from believing there is nothing worth living for. There are plenty of ways debilitating chronic migraine pushes that belief all on its own, I don’t need to add any more fuel to the fire.

This is what works for me personally. Going by the number of likes and shares my post got, I am not alone. Still, this way of thinking doesn’t work for everyone. I understand why; I’ve been there myself.

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“Migraineur,” an Offensive Term?

Migraineur: a person who has migraine (according to Merriam-Webster)

I use the term “migraineur” regularly to refer to people who have migraine. I’ve deliberately chosen “migraineur” over “migraine sufferer” in my writing because the latter makes us sound like victims, which I refuse to identify as. I also believe suffering is a state of mind and that one can have an illness without suffering from it. As the Buddhist wisdom says, “pain is inevitable, suffering is optional” — embracing that belief has been a life-affirming, empowering shift in my attitude toward chronic migraine’s role in my life.

Now I’ve learned from Am I a Migraineur? on the fabulous blog Migraine Monologues that “migraineur” has it’s own controversy. Some people believe that calling oneself a migraineur is tying a person’s identity to migraine. I had no idea it carried that connotation and, while I understand the argument, I don’t buy into it personally.

Maybe because I don’t really use migraineur as an identifier (I rarely say “I am a migraineur,” preferring “I have chronic migraine” instead), but to refer to someone or a group of people who have migraine — such as, “…anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.” For me, “migraineur” is a less wordy way to say “people with migraine,” not an identity.

Or maybe I’m so opposed to “migraine sufferer” (and am not thrilled with “migraine patient”) that I have no room left to be offended by the alternatives!

What do you think? Do you have a preference for “migraineur,” “migraine sufferer,” “migraine patient,” “person with migraine,” or some other description?