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Key points
- Stigma arises when the real experiences of people with migraine don't match society's expectations.
- Migraine is not just a headache, and people can't control when they have migraine attacks.
- Everyone can help combat migraine stigma.
If you’re a person with migraine, you’ve heard it all before.
“You’re having a migraine? I had a migraine last week the morning after a bender, I was so hung over.”
“Migraines? What, so you’re like, really stressed out? You know, I heard of this retreat center that helps with stress, you should totally try that, I bet it would get rid of your migraines.”
“Convenient how you get migraines when it's your turn for pick up after soccer practice.”
If you’re not a person with migraine, I want you to take a minute and imagine. Imagine that you have a disease that, every so often, without warning and outside your control, gives you attacks of severe pain, where you feel nauseated and sometimes throw up, and you can’t be around lights, look at computer screens, or in a noisy environment because it is so painful. Now imagine that whenever you try to tell your partner, your coworkers, or your family about this terrible experience, you hear the statements above. Do you think that would make it easier, or harder to deal with this disease?
Migraine Stigma Is Real
Migraine stigma is alive and well, and everyone has a role in combating this stigma to improve the lives of people with migraine.
In our recent paper, we surveyed 59,001 people with migraine in the United States about their experiences with migraine stigma. Across the study, only 11 percent of people with migraine reported never experiencing migraine stigma. That means the vast majority of people with migraine are dealing with migraine stigma at least sometimes in their daily lives, and some people are dealing with it every day. What an unacceptable societal response to migraine! The vast majority of people with migraine, in addition to dealing with the burden of the symptoms themselves, have to manage the misconceptions and suspicion of others in their lives.
Our paper also showed that there are two types of stigma that people with migraine tend to experience. The first we called “minimizing burden,” and it was experienced the most often by people with migraine. Items included, “How often have you felt others viewed your migraine or severe headache attacks as an easily treatable condition?” Or, “With a lack of understanding of the pain and other symptoms?”
The second type of stigma people with migraine experience we called “secondary gain,” which means that others think people with migraine are using their migraine attacks to get out of doing something they don’t want to do. Items included: “How often have you felt others viewed your migraine or severe headache attacks as a way to get out of work or school commitments?” Or, “As a way to get attention?”
Stigma emerges from stereotypes, or societal beliefs about a group of people. One of the most important is that migraine is just a headache.
Just a Headache
First, some migraine stigma emerges from this stereotype that migraine is just a headache. This belief is so pervasive that it has consistently been the target of campaigns by patient advocacy organizations. A migraine is not just a headache. Migraine is a neurological disease with attacks of head pain and neurological symptoms (nausea, vomiting, sensitivity to light, sound, and smell, difficulty thinking, concentrating, talking, and more). Migraine attacks are more than headaches. Migraine the disease is more than just its attacks.
A brief note on nomenclature. By talking about “migraines” instead of migraine attacks, and “a migraine” as a single attack, we are minimizing the disease. It makes it seem like a person only has migraine during an attack, when in fact, if someone has migraine, they have it all the time. Migraine is a disease, which includes individual migraine attacks. No one would ever say you had an epilepsy today, they would say you had a seizure. Similarly, people with migraine have migraine (the disease) and migraine attacks (the episodes). In the scientific community, we are so convinced that people with migraine have an always-present neurologic disease that we call the “migraine brain.” We are constantly finding ways that the brains of people with migraine are set up and function differently than people without migraine, even when they aren’t currently having any symptoms.
Next Steps: Migraine Is a Disease
If you are a person with migraine, next time you are talking about your migraine disease, be frank and clear about what you are experiencing. “I have migraine disease; I have it all the times, sometimes I have to be more careful than others about keeping my routine consistent. Sometimes, no matter what I do, I have migraine attacks that include pain but also a lot of other weird symptoms that can make it really difficult for me to work or even have fun. I have treatments that help, but for now, this is something that I need to manage.”
If you are not a person with migraine, make sure to talk about migraine as a disease, not just a single attack. Avoid the use of the word “migraine” when you’re talking about non-migraine headaches (even if it was really bad). Listen to the people with migraine in your life, and try to imagine how it would be to live with this disease. Compassionate allies can go a long way in combating migraine stigma in families, schools, and workplaces.
We can change migraine stigma in society
Migraine stigma is not only a problem for people with migraine. It is a problem for all of society. It is going to take all of us to improve migraine stigma and help people with migraine live better lives, more fully present in society.
