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Internalizing the Stigma of Migraine

The stigma of migraine and society’s perception of illness, as well as the internal voice that judges me during a migraine attack have all been swirling around in my mind lately. The topics came together in Internalizing the Stigma of Migraine, which quickly became my most popular post on Migraine.com. I’m both saddened by the number of people who identify with this experience and honored that I can give voice to the torrent of emotions that accompany migraine.

Here’s a short excerpt from Internalizing the Stigma of Migraine:

I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience.

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The Everlasting Search to Pinpoint Migraine Triggers

It never fails. I return home from a trip* and a migraine hits within a few hours. As always, there’s the urge to figure out what went wrong, what triggered the migraine. I could blame it on insufficient protein in my breakfast and lunch, restless sleep, not drinking enough water, or the mere fact that I was on an airplane for three hours. Or I could use the commonly cited trigger of stress — the stress of travel, the stress of returning to the demands of normal life, the stress of leaving friends, or the stress release upon being home. (Whether stress is actually a trigger is debatable.)

Practically anything, whether it is positive, negative or neutral, could be a trigger. Eating a particular food? Not eating enough? Eating too much? Inadequate sleep? Excessive sleep? Weather changes? Schedule disruption? Flying? Any of these could be a trigger. This is the trouble with migraine. (Well, actually, there are many troubles with migraine, but this is the one that ignites most of my fruitless worry and unfounded self-flagellation.)

Not only is the field of potential triggers wide open, they are additive. Something might not be a trigger in isolation, but add on a couple more triggers and the attack begins.

What most triggers have in common is that the migraineur can be blamed for causing them to happen. “You have a migraine? Well, if you had taken care of yourself by sleeping/eating/breathing correctly, you wouldn’t have gotten it.” This seems to be the attitude of the general public. And we migraineurs are pretty quick to judge ourselves, too. Of course we don’t want to have migraine attacks and changing our behaviors or diets is one potential way to feel like we have some control over this illness. More importantly, it could reduce the frequency of attacks, which must be a universal goal among migraineurs.

Triggers are absolutely real. But they are also different for everyone. And sometimes you can follow all the rules and still have a migraine attack. That’s the case for me 95% of the time, yet I still have a migraine nearly every day. I feel like I must be doing something wrong, but have no idea what it is.

*I wrote this last week after returning from a wedding in Minneapolis. It devolved into a rant, so I let it sit a while before editing and posting.

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Proving to Myself I’m Not a Faker

Everyone else will tell me that I couldn’t possibly be exaggerating my symptoms or being lazy. Too bad I tell myself the opposite. Pretty much constantly the last few days.

Last Tuesday, I ran errands, napped and saw my massage therapist. I was home by 3 p.m. and crashed — for the rest of the week. Beyond getting mail from the front porch, I literally didn’t leave my house until Saturday night.

Yet I’m convinced that I’m faking it. That my headaches and migraines haven’t been too bad; they’re an an excuse to read instead of attending to everything else in my life. So I have pushed myself to clean the contents of our basement (which flooded last Monday) out of the dining room and empty the dishwasher and check e-mail. And, and, and.

For once, I’m remembering that I’m not guiding this illness. I have been so sick the last two months that I can’t even keep appointments with doctors and massage therapists. As much as I berate myself for not actively seeking treatment, I know that I am honestly unable to right now.

I’m holding tight to the good hours I’ve had in the last week. Thursday and Saturday started well; Friday was good overall. Each day I was up and active until the pain, fogginess and nausea overwhelmed me. I was thrilled to be doing chores.

This isn’t the life of a faker. I’m not a faker. If only I were — I could be free of this misery and piece my life back together. I know all this deep down, but my mind stalls at self-criticism. Today I hear the faint murmurings of truth hiding under layers of doubt and judgment.