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The Stigma of Illness: Blaming the Patient

A Sick Stigma: Why Are Cancer Patients Blamed for Their Illness? is yet another article about cancer with a message that rings true for headache disorders. It examines the ways in which healthy people blame patients for illness, why they do so, and how patients internalize these messages and beat themselves up. The following paragraphs particularly spoke to me:

“Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma.”

“’I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,’ says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. ‘And I think when bad things happen to good people, it’s threatening to everybody.'”

‘Secondly, you can say knowledge is power in a sense,’ Devins says. ‘If we feel like we understand something, it gives us the illusion of control.’”

These are similar to arguments I made in It’s Not About You on Migraine.com, with the bonus of being rooted in academic research, rather than personal experience. Illness — whether curable or chronic, life-threatening or not — scares people. Blaming the patient is a way to allay these fears and allows the currently healthy person to believe they have the power to avoid illness.

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Balancing Caution and Fear of Migraine

“I’m going to be angry if I don’t get a migraine tonight,” I told Hart Friday night. Those are words I never thought I’d say, but I’d been looking forward to that night’s local music festival for months and I didn’t want to have missed it because I’d guessed incorrectly about an impending migraine.

I stayed home because I was feeling “off” and a storm was rolling into town, which is a pretty reliable migraine trigger for me. Usually I’d go anyway, especially if I’d been doing OK most of the day, like I was Friday, but the tickets were expensive and I loathed the thought of fighting through the crowd to leave and then riding in the car for 30 minutes with a migraine.

I’d done the math and the dithering all afternoon and made what I thought was the right decision. When the migraine didn’t come Friday night, I felt like I’d cheated myself out of a great time because of fear. I wanted to embrace my choice with confidence, but the doubt remained: Maybe I was taking care of myself and being appropriately cautious, maybe I missed out by giving into fear.

I’ve been running my mind in circles, trying to figure out how I could have made a better decision Friday (and by “better decision” I mean one that would have gotten me to the music festival). Then Tuesday came along and I felt pretty good, so Hart and I went to a baseball game. At the game I realized that I had used all the available information to make the best decision I could on Friday. There’s no way to make perfect decisions with an unpredictable illness.

Sometimes I’ll got to the show and get a migraine, sometimes I’ll feel just fine. Sometimes I’ll stay home and feel OK, sometimes I’ll have a migraine. Sometimes I’ll go to the game and catch my first foul ball, like I did on Tuesday.

“Like” The Daily Headache on Facebook to see a picture of Hart and me with my foul ball.

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A Little Relief, A Little Anxiety

One of my greatest fears is that I’ll find an effective treatment that will reduce the intensity and/or frequency of the migraines for awhile, then it will stop working. I’ve heard plenty of anecdotes about this, though I don’t know how often this happens percentage-wise. Just knowing it happens is enough to worry me.

After 48 hours of level 3 pain after my magnesium infusion, the pain increased with the onset of three-day storm on Saturday. I did not panic because I knew that a storm was likely to trigger a migraine even if I was overall improved. Sunday and Monday were a little better, but still mediocre. Another migraine hit Tuesday, right after the storm cleared. I soothed myself by remembering that many headache specialists say that weather changes are triggers for most migraineurs. (I mentioned this to Hart to reassure him — he was telling himself the same thing!) Today, though, I can no longer blame the weather. So the constant questions resume — Am I in postdrome? Will the magnesium infusion only last one week?

Over the weekend, I hadn’t begun to consciously worry about the magnesium infusion wearing off too quickly or not being as effective in the future; the concern was apparently below my consciousness. While napping Sunday in an effort to recharge myself to visit friends in the afternoon, I had a new kind of anxiety dream. It had something to do with getting to the end of the semester without attending or dropping a particular class, which is how anxiety usually manifests while I sleep. This time, I missed classes because the magnesium infusions were no longer able to bring the pain down to a level 3.

Usually I awake from anxiety dreams and am able to calm myself knowing I’m not currently a student. I know I’m probably worried about something, but am reassured that whatever got my heart racing in the dream was not real. This time the source of anxiety in the dream was not only a possibility, but culled directly from one of my greatest fears. I have elaborate, bizarre dreams that provide an amusing respite from my daily life. I’m unhappy that reality intruded, though so far I’ve only had the dream once.

I believe I’m finally recovering from the long weekend of migraines and am hoping, hoping, hoping that tomorrow I’ll again see the benefits of last week’s magnesium infusion. I can’t put into words how much I want this to work. I’ve gotten a glimpse of what life might be like with less pain and more energy and I want more of that. Please, migraine gods, please let me have some more.