The Stigma of Migraine: Reasons and How to Combat It

By Dr. William 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 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!

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.

Breaking Down Stereotypes: How Migraine Is Misunderstood

Migraine is a misunderstood and stigmatized neurological disease, often trivialized by pervasive stereotypes. Common misconceptions about migraine include ideas such as “it’s just a headache,” “it’s caused by stress,” or “it’s an excuse to get out of responsibilities.” These harmful beliefs ignore the reality of migraine as a complex condition with a genetic basis, profoundly impacting people's lives.

Historically, migraine was seen as a “woman’s disease,” tied to outdated notions of hysteria and emotional instability. Such stereotypes persist, with assumptions that migraine is either a personality flaw or a self-inflicted condition resulting from diet, stress, or lifestyle choices. These views perpetuate a cycle of misunderstanding, making it challenging for individuals with migraine to be taken seriously. For instance, phrases like “take a pill and get over it” diminish the severity of the condition, making sufferers feel judged and unsupported.

Data from the Migraine in Aotearoa New Zealand Survey (2022) highlights the prevalence of this stigma, with over half of respondents feeling judged or misunderstood by friends, and 44% feeling similarly from family. Surprisingly, even family members—those most likely to witness the impact of migraine—often perpetuate these stereotypes, further isolating individuals with the disease. This judgment may stem from people hiding their symptoms to avoid criticism, creating a vicious cycle of silence and stigma.

Combating Migraine Stigma and Stereotypes

To combat the stigma surrounding migraine, one powerful strategy is to carefully choose the language we use when discussing the condition. Words matter, and using terminology that accurately reflects the seriousness of migraine as a neurological disease can help reshape public perception. For example, saying “person with migraine” instead of outdated terms like “migraineur” or avoiding phrases like “migraine headache” that oversimplify the condition are small but impactful changes.

To break these patterns, it is essential to address the internalized guilt that many individuals with migraine feel, educate those around them, and foster open, empathetic conversations about the condition. An effective approach is to use the spoon theory to explain the challenges of living with migraine. Originally developed to describe chronic illness, the spoon theory uses the concept of a limited number of "spoons" to represent a person's daily energy. Each activity, from getting out of bed to completing a work task, costs a certain number of spoons, leaving individuals with chronic conditions to carefully manage their resources. This metaphor can help others understand the invisible toll of migraine.

For instance, one person with migraine found that wearing a spoon necklace sparked a meaningful conversation with a family member who had previously misunderstood their condition. Sharing the spoon theory helped bridge the gap, fostering empathy and improving their relationship. Using symbols like the spoon can serve as a starting point for breaking down stigma and opening conversations.

How Mass Media Contributes to the Stigma of Migraine

Mass media has long played a significant role in reinforcing the stigma surrounding migraine, often presenting it in ways that are dismissive or rooted in outdated stereotypes. These portrayals created a damaging narrative that continues to influence public perception.

In modern times, these stereotypes persist in subtle but harmful ways:

• Simplistic depictions: Advertisements for headache medication frequently show individuals returning to normal activities almost instantly after taking a pill, perpetuating the myth that migraine is a simple problem with an easy solution. This portrayal diminishes the complex and chronic nature of the disease.
• Comedic tropes: Television shows and movies often use migraine as a comedic device, with characters depicted as overly dramatic or weak. For example, scenes of characters dramatically retreating to dark rooms or holding their heads in exaggerated anguish contribute to a perception of migraine as an excuse rather than a legitimate health condition.
• Gendered misrepresentation: Media often associates migraine with women, reinforcing outdated beliefs that tie the condition to emotional instability or hormonal fluctuations. This bias overlooks the fact that migraine affects all genders and fails to capture its neurological origins.

To address these misrepresentations, migraine awareness advocates emphasize the need for accurate and compassionate media portrayals to reframe the understanding of migraine as what it truly is: a serious condition that requires empathy and support for those affected. Documentaries, personal narratives, and public education campaigns can challenge harmful stereotypes by showcasing the reality of living with migraine.

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.