By Dr. William B. Young
Migraine gets lousy press. Sure, we get a lot of articles in women’s magazines on “holiday headache,” “foods to avoid,” and “sex and headache.” Unfortunately, these types of articles encourage the notion that migraine is a nuisance disease, lead to misunderstanding for the journey of people with serious and disabling migraine, and ultimately restrict funding for the research that will lead to meaningful treatments for people who really need them.
NIH spends about 20 million dollars a year on migraine and headache research. This may seem like a lot, but it is actually a tiny amount. If migraine was funded like other diseases that cause a similar amount of disability it would get from 200 to 400 million dollars a year. One reason migraine research is so poorly funded is because of the social stigma of the disease. In a study of research funding of disease, the social stigma of the disease was an important factor in determining which diseases get funding. Disease advocacy was critical in reversing stigma and improving funding.
Stigma is the extreme disapproval of a person based on a disease or characteristic. A person with a disease hears and experiences this disapproval which is called “enacted stigma.” Eventually this leads to internalization of these beliefs through a process of self-concurrence which leads to “internalized stigma,” causing psychological distress. For other diseases, there have been concerted efforts to reduce stigma. Good examples are AIDs and epilepsy. These efforts have been successful, and as both diseases were de-stigmatized, they got more research money.
Several years ago I read a paper on measuring stigma in various diseases, and the very next day an intern in training at our facility who had a month of research elective asked if I had a project for her. So we measured stigma in episodic migraine and chronic migraine patients in my clinic, and in epilepsy patients in the epilepsy clinic. On average, the chronic migraine patients had worse stigma scores than either the episodic migraine or epilepsy patients. You can hear more about my research on stigma on YouTube, or read the original article.
Patients who sit in my waiting room are not the average persons with migraine – their disease is much more severe. More than 45% of the chronic migraine patients and 20 percent of the episodic migraine patients were unable to work due to their migraine. The epilepsy patients’ ability to work was similar to the episodic patients.’ In large part the worse stigma of chronic migraine related to its relationship with the ability to work. For both episodic and chronic migraine, there was no relationship with a person’s gender, age, or income: stigma hits everyone.
Disease stigma can be reversed. In order to do this, we need an understanding of why migraine is stigmatized and we need an effective plan on how to reframe it. Unfortunately, the ignorant public sees people with disabling migraine as morally weak for not functioning normally despite their headaches, and having them because they did something wrong by not properly addressing their lifestyle. The disease itself is, bizarrely, perceived as either being easy or impossible to treat. Part of this comes from pharmaceutical companies who have touted their medications as very effective, undermining the very large group for whom they don’t work.
The other problem is that the pharmaceutical industry, along with the world of academic headache medicine has emphasized the large number of people who have migraine, without differentiating the mild from the severe. Saying that 36 million Americans have migraine (and implying they should be on an acute medication and a preventive) is good for getting investors to see the market potential of a drug, but it undermines the credibility of migraine as a serious disease. At some level the public says that if that were the case, they should know dozens of people with that serious disease, and they believe that they don’t. There are two reasons for this misunderstanding: the epidemiology mixes in the a few Excedrin a year person, with the person who is on three preventives, uses 3 abortives and still has out of control disabling migraine. The other reason is that people with migraine hide what they actually have, and people around them don’t know what is going on in their lives, because of the social stigma.
So what can we do about it? I believe the headache community must take responsibility for reframing migraine into something that is both true and sympathetic. This should not be spearheaded by drug companies, but by the community of persons with migraine, the doctors who treat them, and the scientists who study migraine. But most importantly it should be done intelligently, and not repeating past mistakes.
How do we reframe migraine effectively? Any new frame must be very simple, and attention getting. The American Headache Society’s ad hoc committee on reframing came up with this new frame: 1- migraine is severe; it is common to lose a job or have a severely restricted social or family life due to migraine, and 2- people with migraine are sympathetic, good people doing as well as possible in the face of unrelenting pain and associated symptoms. I would go further; persons with migraine are heroic, carving out their best possible lives even when there is little effective treatment, and damn little understanding.
The problem for now is how do we study a new frame? How can we know it is going to help, before we make a concerted effort to gain acceptance for it? We need to determine the most effective frame that leads to what we all want: more understanding of the disease and help for the person who has it, more research, and better treatment.
If we can study a series of frames, find the one that is most effective and all get on the same team in changing the perception of migraine, then migraine patients will be less stigmatized, research will get funded, and the lives of all persons with migraine will improve.]]>
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Miriam Edelstein’s advocacy story is written and told by Miriam Edelstein and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to…
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