The Stigma of Migraine: Reasons and How to Combat It

By Dr. William B. Young

Stigma imposes a huge penalty in the everyday lives of patients with migraine. According to this study, “One in three people with migraine frequently experiences migraine-related stigma.” Among nearly 60,000 people in a recent study of adults with active migraine, 31.7% said they experienced migraine-related stigma often or very often. Stigma increases social isolation and causes adverse consequences to self-esteem and mood. Stigmatized diseases get less research funding, and payers are less likely to pay for the treatment of stigmatized diseases.

In order to reverse the stigma of migraine we need to understand why it exists. I believe there are three distinct reasons it exists – they are independent but feed on one another. Here are the three reasons:

What Causes Migraine and Why is it Overrated?

In general people with migraine don’t seem obviously sick, except to people who know them very well. To strangers, employers, and casual acquaintances, the person with migraine does not seem particularly ill. The pain, sensory abnormalities, dizziness, and brain fog (to name a few symptoms) could be extreme, and no one would be the wiser. It is a struggle, for many, how to manage migraine.

So why is migraine not taken seriously? Stigma! “Migraine patients reported equally high stigma scores across age, income, and education” according to this study. Migraine has long been a topic that is stigmatized as “just a headache” or “not that bad.”  But to the ones who know them very well — they know!

An observant husband might tell a wife: “You’re a six (out of ten) aren’t you?” And they are probably right. Sometimes the loved one will know there is a headache, even before the patient has registered it for themselves. But for the rest of the world, it is hard to empathize with a thing they can’t see.

Three Reasons for The Social Stigma of Migraine

• STRUCTURAL STIGMA
  • Prejudice and discrimination by policies, laws, and constitutional practice
  • Targets:  Legislators, Policy Makers, Employers, Criminal Justice 
  • Interventions – legal strategies, policy strategies, advocacy strategies, professional education
• PUBLIC STIGMA
  • Stereotypes, prejudice, and discrimination
  • Targets:  general public and groups within the general public
  • Interventions:  Media mass marketing, education, community programming, and contact strategies
• SELF-STIGMA
  • Shame, low self-esteem, lack of engagement in treatment
  • Targets:  people with migraine
  • Interventions:  education, empowerment strategies, peer support

Invisibility causes migraine social stigma

In general people with migraine don’t seem obviously sick, except to people who know them very well.  “Half to three-quarters of adults aged 18–65 years in the world have had headache in the last year and, among those individuals, 30% or more have reported migraine” It has been estimated that prevalence among adults of current headache disorder (symptomatic at least once within the last year) is about 50%. Half to three-quarters of adults aged 18–65 years in the world have had headache in the last year and, among those individuals, 30% or more have reported migraine, according to the World Health Organization.

To strangers, employers, and casual acquaintances, the person with migraine does not seem particularly ill. The pain, sensory abnormalities, dizziness, and brain fog (to name a few symptoms) could be extreme, and no one would be the wiser. But to the ones who know them very well — they know!

An observant husband might tell a wife: “You’re a six (out of ten) aren’t you?” And they are probably right. Sometimes the loved one will know there is a headache, even before the patient has registered it for themselves. But for the rest of the world, it is hard to empathize with a thing they can’t see.

Ignorance of the person with mild migraine

How often is the person with mild migraine dismissive of the one who has it much worse? How often has someone with severe, life-altering migraine, heard a version of: “I don’t understand when I have a migraine attack and I take 2 Excedrin and an espresso, and I’m fine?” This is outrageous. Imagine the person who had a lumpectomy, no radiation, or chemo, and was cured telling the woman with metastatic breast cancer in her bones and liver that “breast cancer isn’t so bad.”

Everyone is extremely different when it comes to migraine and headache disorders. These differences occur with differing migraine triggers, symptoms, and types of attacks.

Nasty negative migraine meme

A meme is an idea that is transmitted from one mind to another, competing for space in the brain of the person who carries it. According to Catherine Foxhall, the world’s foremost historian of migraine, this negative perception began in the late 1700s and has persisted since.

In short, before this historical period, migraine was treated like any other disease. Treatments were not good, but migraine was not looked down upon. Then, rather abruptly, people with migraine were represented as privileged, self-absorbed individuals, who used their migraine as an excuse to keep from completing their social duties. The doctors who took care of them were also ridiculed as out-of-touch, incompetent practitioners who encouraged their patients’ neurotic tendencies. A negative, feminized view of the patient with migraine has persisted since, as outlined by Joanna Kempner’s excellent book “Not Tonight”.

A proposal
So how do we approach these ideas? Let me propose a different strategy for situations driven by each of these reasons:

Reason 1:
For people who just don’t see, I suggest reasoned education. Most people can learn about the invisibility of migraine. Their empathy can be engaged – they can get it. Teach them. Tell them about the individual struggle and also how common it is for migraine to lead to lost careers and withered social connections.

Reason 2:
For people with mild migraine who denigrate those with severe migraine, I would take a sharper approach. While it is true that many do have mild migraine (and it is helpful to acknowledge this because migraine has a wide spectrum of severity and treatability), this is a crime of commission, not of omission. It is too easy for such people to sink back into their own more trivial experience. I suspect a good, memorable challenge to their assumptions is indicated. The breast cancer example might work. Repeat as necessary.

Reason 3:
Against the evil meme, we need a truer, more heroic meme. We need to show how people with severe or daily migraine struggle, doing amazing things, working until every last ounce of strength and energy is expended, and smiling and carrying on in social situations that magnify their pain and set them back for hours, days, or weeks. Only a new and positive meme can replace the brain space occupied by these negative perceptions that have plagued persons with migraine for centuries. There are millions of quiet and hidden migraine heroes – when they are seen and heard, this ugly lie about their disease and their character will melt away.

Fight against the social stigma: How to help people with migraine

Miles for Migraine is fighting against the social stigma in many ways. They are doing this by helping to support local migraine and headache research, clinical trials, fellowship training, support programs,  education days, and run walk events.