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Speaking Up About Migraine to Reduce Stigma

The best way to reduce the stigma of migraine is for those of us with migraine (and those who love and support us) to talk about migraine. I believe that wholeheartedly despite this survey finding presented at the American Headache Society Scientific Meeting last July: knowing a person with migraine increases migraine stigma among those without migraine.1

Yes, you read that right — migraine stigma was higher for survey respondents who don’t have migraine when they knew someone with migraine than when they didn’t. Before you throw your hands up and lament that all the work we’re doing to raise awareness of migraine is for naught, I encourage you to dig a bit deeper. I did and that’s why I still believe that talking about migraine is the single best thing we can do to decrease stigma.

I know it can be scary to talk about, especially in light of these survey results, but I’ll explain why I believe it’s ultimately the best way to reduce stigma.

Survey findings

The survey was conducted online and included 2,000 people without migraine in the US. About 45% of respondents said they had never known anyone who has migraine. Only 37% said they knew one person with migraine and 13% said they knew two or more people with migraine. (That’s remarkable—and frankly, impossible—given that 12% of the population has migraine!)

Respondents' attitudes toward people with migraine were disturbing, especially because those who said they knew someone with migraine had more negative beliefs about migraine than those who said they didn’t know anyone with migraine. The survey found that:

  • Approximately 31% of respondents believed that people used migraine to get out of work or school
  • 33% believed people used migraine to avoid family or social functions
  • About 27% believed people with migraine used it to get attention
  • Approximately 45% believed that migraine should be easy to treat
  • 36% blamed migraine attacks on the so-called unhealthy behaviors of those with migraine

The numbers don’t add up

I call foul on the idea that 45% of respondents don’t know anyone with migraine—I bet they all know someone with migraine, they just aren't aware that the people they know have migraine. I'd argue that probably all 2,000 respondents know multiple people with migraine and aren't aware of it.

It’s easy to read the survey results and infer that the reason for stigma is that people with migraine are speaking up about it and being judged for it. While that definitely happens, the root of the problem is that not enough people with migraine are talking about it. When so few people talk about having migraine, it’s easier for people without migraine to dismiss the occasional person who does.

Changing perceptions about migraine

Stigma is about other people’s perceptions of migraine, but every single person’s perspective is skewed by their own experience. The people surveyed for this research have preconceived ideas of health and illness and also have opinions about the people they know who have said they have migraine. It may be that they already think Aunt Sally or their friend’s husband is flaky, so they assume that person is using migraine as an excuse.

If people who have migraine never speak up, then those without migraine will never have reason to change their preconceived notions. But the more they hear about what migraine is really like from people they respect, the more they’ll understand that migraine is a serious illness that causes debilitating attacks that often take a person out of commission.

Try speaking up with someone you trust

I know I’m asking for a lot here. It’s hard to talk about migraine, especially when there’s a chance someone will judge you. I recommend starting with someone you trust. You don’t have to get into the nitty-gritty, just mention it off-hand. Because the more people realize that they do know someone with migraine, the less stigma migraine will carry.

 

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