Social Stigma of Migraine Similar to That of Epilepsy

Pauline Anderson

June 28, 2013

BOSTON, Massachusetts — Among neurologic disorders, epilepsy has historically been thought to be attached to the greatest social stigma, but a new study indicates that migraine is associated with a similar level of stigma.

Using a crowd-sourcing website called Mechanical Turk, which is becoming an increasingly popular and valuable tool for social scientists, researchers asked 765 people to rate their attitudes to a hypothetical scenario:

"Jane has a ___ attack nearly every week. While attacks have always gone away on their own, afterwards she may need to miss work or family activities for an entire day. Unfortunately, treatments for ___ attacks do not work for Jane."

In each vignette, "Jane" suffers from1 of 4 possible attacks; the blanks were filled with "migraine," "epilepsy," "panic," or "asthma" attacks.

"Each scenario has the same number of attacks, the same level of disability in terms of missing work or family activities, and the same prognosis, meaning that treatments are not going to change the likelihood that this will resolve," said Robert E. Shapiro, MD, PhD, professor, neurological sciences, University of Vermont College of Medicine, Burlington, who carried out the study along with Peter Reiner, VMD, PhD, professor, National Core for Neuroethics, University of British Columbia, Vancouver, Canada.

"It's important to understand that people with migraine are virtually everywhere, that virtually everyone knows people who have migraine. This is not a character flaw and it's not a misbehavior; it's a neurobiological problem that we believe needs more research and better validation by agencies such as the Social Security Administration" that determine disability status, said Dr. Shapiro. "With greater familiarity and greater understanding, the stigmatizing attitudes and mysteries that surround migraine will begin to abate."

The new results were presented here at the 2013 International Headache Congress (IHC).

Stigma Measure

After considering the vignette, survey participants completed the Attitudes Toward Mental Illness Questionnaire (AMIQ), a well-validated tool to measure stigma that includes 5 questions with responses varying from very negative to very positive. The questionnaire asked respondents how comfortable they would be to have "Jane" as a co-worker and to invite her to a dinner party and how likely it would be that Jane's career would be affected, that her husband would leave her, and that she would get into trouble with the law.

The maximum possible score on the AMIQ is 500. The study showed that the lowest score on the survey was for the vignette that included an asthma attack (250). The scores for the other types of attacks were significantly higher but not significantly different from each other (266 for migraine, 267 for panic, and 262 for epilepsy).

Dr. Shapiro said he wasn't surprised to see that migraine was equivalent to epilepsy in terms of negative attitudes because he hears first-hand from patients with migraine how stigmatized they feel.

But he says the sources of the stigmatization may differ. Whereas with epilepsy, the shunning might come from the historical fear that a person with epilepsy is possessed, the stigma linked to migraine may originate from the view that the disorder is nonsignificant or that a person with migraine has a character flaw or can't manage pain as well as others can.

Dr. Shapiro and his team are now doing follow-up research to determine whether sex plays a role in migraine discrimination and whether knowing someone or having personal experience with migraine influences attitudes.

Stigma is "very durable and difficult to counter," but education is an important tool to raise awareness about the condition, said Dr. Shapiro.

Dr. Shapiro said he recognizes that this sample is not a standard random sample and that those who complete such online surveys tend to be relatively young, female, liberal, and lower income, but with higher education.

Respect, Not Stigma

Asked to comment on these findings for Medscape Medical News, Stephen Silberstein, MD, professor, neurology, and director, Headache Center, Thomas Jefferson University, Philadelphia, Pennsylvania, said he was very impressed with the study, which "clearly duplicates" findings of another study published last year that showed stigma against patients with migraine.

"This is extremely important," said Dr. Silberstein. "If a disorder or a patient with a disorder is stigmatized, it means that they don't get adequate treatment, resources are not distributed to them in an equitable manner, and more importantly, the federal government is not giving the disorder what it needs, and is not paying for research."

Discrimination against people with migraine happens all too often in the workplace, he said. "If you go to work and you have a bad migraine headache, coworkers think you're faking it, or are weak."

Dr. Silberstein added that according to the World Health Organization, patients with migraine attack have as much disability as someone who is acutely psychotic or paralyzed in their arms and legs. "Migraine is a severe disability worthy of respect, not stigma."

Dr. Shapiro has disclosed no relevant financial relationships.

2013 International Headache Congress (IHC). Abstract OR 27. To be presented June 30, 2013.

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