By Dr. William B. Young
Stigma imposes a huge penalty in the everyday lives of patients with migraine. It 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 exist – they are independent, but feed on one another. Here are the three reasons:
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. 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 migraine 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.”
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. For her own excellent explanation, I refer you to the brief article available at here. 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”.
So how do we approach these ideas? Let me propose a different strategy for situations driven by each of these reasons:
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.
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.
Against the evil meme, we need a truer, more heroic meme. We need to show how people with severe or daily migraine struggle on, 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.