When No One Believes You’re Sick

Headache and Migraine Basics | 4 Min. Read
Author: Ctrl M Health Migraine Team
Reviewed by: Ctrl M Health Medical Directors

Summary

  • “But you don’t look sick.” Many people don’t know that migraine is a legitimate, debilitating disease. That disbelief makes living with migraine even more difficult by increasing people’s isolation, diminishing their self-esteem, and delegitimizing their own pain.
  • The invisibility of migraine — the fact that it can’t be seen — contributes to its disregard by others.
  • Because people don’t often understand the impact of migraine, they don’t have compassion for those who live with it.
  • Things you can do to fight stigma: be confident telling your story, do not be afraid to ask for all necessary accommodations, use language that legitimizes migraine, find a community for migraine support.

Full Article

The only thing that feels worse than being ill with migraine is when no one believes you’re sick. Yet at some point, just about everyone with migraine finds themselves facing the societal prejudice that their debilitating neurological disease isn’t a legitimate condition. That social rejection can take a lot of forms: Having to convince someone your symptoms are real, for example, or being shrugged off for just not being tough enough, or having to tolerate friendly but minimizing advice on how to get well. Can you even imagine someone reacting to other diseases that way?

It’s hard living with a disease that others don’t understand. It forces people with migraine into making an uncomfortable choice: Either try to convince the doubters that you’re sick — or give up trying to explain, and suffer in silence. 

What is stigma?

Stigma means that those with migraine are unfairly judged as “less than” by society. All too often, migraine is seen not as an illness deserving of compassion and treatment, but rather as a character flaw.

“Once you start to miss work or cancel social activities where friends are counting on you, people look down on you, as though you’re weak,” says Dr. William Young, a neurologist at the Jefferson Headache Center at Philadelphia’s Thomas Jefferson University Hospital. Those unfair judgments take a toll on migraine patients, squashing their self-esteem, increasing social isolation, and depressing their mood.

What factors contribute to stigma?

Invisibility. “You don’t look sick.” Because someone with migraine doesn’t appear obviously sick — and might even look like the picture of health — people are slow to feel sympathy. 

Unfair comparisons. Almost everyone has experienced a headache at some point and recovered. People assume your situation is no different, and so assume you’re making a big deal over nothing. The unfair comparison between a regular headache and migraine discredits and minimizes migraine.

“A Woman’s Disease.” The vast majority of people with migraine are female, and society wrongly doesn’t take women’s complaints as seriously as men’s. 

Lack of knowledge = lack of compassion. People with migraine can miss work, school, or family obligations when they’re experiencing symptoms. But because others don’t understand the seriousness of migraine, they might see it as someone trying to shirk their responsibilities and feel resentment where they should be feeling compassion.

Self-stigma: People with migraine disease often absorb the negative messaging until they believe it themselves, and delegitimize their own pain. “Over time, people with migraine soak up the negative self-image,” says Dr. Young. “It’s inevitable that if you have this disease for a long enough time that you pick up on that and will feel as though you’re not worthy.” That leads to worse migraine outcomes, he adds: “For those who internalize the stigma, it affects the quality of care patients seek and the quality of life they accept.”

What to do about migraine stigma

Advances in medicine and brain imaging mean that scientists are now able to see migraine, which in turn is beginning to erase some of the stigma. Dr. Young says many of his patients celebrate migraine being labeled as a disease because the designation validates the disability they experience. He emphasizes how important it is for people with migraine to understand stigma so they can defend against it, speak out and self-advocate. Some of his suggestions:

  • Learn how to tell your story in a positive but fair light that shows how you have struggled to manage migraine and how you have hidden it from others.
  • Tell your story to people who might be allies.
  • Begin to change your own language from de-legitimizing to legitimizing. For example, saying “I have migraine disease,” “I have a condition called chronic migraine” or “I have migraine” is more powerful than saying “I get really bad migraine headaches sometimes.”
  • Find community with other people with migraine, both online and in person. Work to make the support activities positive, so that you can build one another up individually and create a strong, unified community.

 

Want to know more about the stigma of migraine? Read our Q&A with Dr. William Young, “‘Just a Headache’: The Language of Stigma.”

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