Conference Coverage

Migraineurs Bear Stigma That Influences Health Outcomes

Stigma may make migraineurs less likely to disclose their condition or seek treatment.


 

Robert E. Shapiro, MD, PhD

STOWE, VT—Migraine is associated with a significant degree of stigma that affects patient care and outcomes, according to an overview presented at the 27th Annual Headache Cooperative of New England Stowe Headache Symposium. Motivated by perceived stigma, migraineurs are likely to hide their disease and unlikely to seek treatment, said Robert E. Shapiro, MD, PhD, Professor of Neurological Sciences at the Larner College of Medicine at the University of Vermont in Burlington. “Providers who do not appreciate the seriousness of migraine and do not appreciate the stigma are much less likely to diagnose [migraine] and prioritize its care,” he added.

Stigma in Media and Society

Although neurologists and the general public acknowledge the symptoms and disability associated with a disease, they generally discount or fail to recognize its associated stigma, said Dr. Shapiro. Internalized stigma is a person’s sense that he or she is kept at a social distance, and enacted stigma refers to instances of discrimination on the basis of a person’s condition. Consequences of stigma include psychologic distress, low self-esteem, poor social outcomes, and poor health outcomes.

In a 2006 analysis, Caspermeyer et al examined 1,203 newspaper articles about neurologic conditions. They found that, after articles about epilepsy, articles about migraine contained the highest frequency of stigmatizing language (29%). Although migraine was among the most prevalent diseases in the analysis, it was among the least covered topics in newspaper articles.

To determine whether migraine is associated with stigma, Young and colleagues administered the Stigma Scale for Chronic Illness, a questionnaire, to patients with episodic migraine, chronic migraine, or epilepsy. The investigators observed that patients with chronic migraine and patients with epilepsy faced a similar amount of stigma. They further observed that stigma correlated most strongly with inability to work and was greater for chronic migraine than for epilepsy or episodic migraine.

Level of Stigma by Disease

Following these studies, Dr. Shapiro and colleagues investigated externalized stigma, or the rejection of others because of their condition. They polled adult members of the Amazon Mechanical Turk community, a group of approximately 500,000 people who voluntarily respond to surveys for modest monetary compensation. Compared with the US population, the Amazon Mechanical Turk community includes more women, Caucasians, young people, liberals, educated people, secular people, and people with low incomes. The group better represents the US population, however, than general Internet or university convenience samples do.

The investigators presented each respondent with one of four vignettes about people with a disease that does not respond well to treatment and that sometimes results in missed work or family activities. The vignettes were identical except for the condition named. The four conditions were migraine, epilepsy, panic disorder, and asthma. After reviewing the vignette, each respondent completed a validated stigma-assessment instrument using a Likert scale for each item.

In all, 765 people completed the instrument. Respondents’ mean age was 28, and 60% of the sample was female. There was no difference in the level of stigma attributed to migraine, panic disorder, or epilepsy, but respondents attributed less stigma to asthma than to the other three conditions. Noting the similar level of stigma between migraine and epilepsy, Dr. Shapiro said, “Epilepsy historically has been associated with demonic possession. If ever there were a disease that you would assume would have social distance or stigma attached, it certainly would be epilepsy.”

Disease and Productivity Loss

In a second study, Dr. Shapiro and colleagues presented members of the Amazon Mechanical Turk community with one of five vignettes. The vignettes described the following cases:

  • A woman with migraine on four days per month who missed no workdays per year
  • A woman with migraine on four days per month who missed two workdays per year
  • A woman with migraine on 20 days per month who missed 10 workdays per year
  • A man with migraine on four days per month who missed two workdays per year
  • A woman with seizures on four days per month who missed two workdays per year.

Respondents then completed a social distance scale that included questions about the respondent’s willingness to socialize with, trust, hire, or allow the person in the vignette to marry into his or her family.

The researchers found that the level of externalized stigma was the same for the woman with migraine who missed two workdays per year as it was for the woman with epilepsy who missed two workdays per year. Respondents believed that the person with epilepsy would care more about whether he or she was a burden on others, compared with the migraineur. Respondents also said that the person with epilepsy would try harder and would be less likely to malinger, compared with the migraineur.

The gender of the person in the vignette was not associated with the level of stigma, said Dr. Shapiro. On the other hand, men were much more likely to stigmatize a man or a woman with migraine than women were.

In addition, the researchers found that the woman with chronic migraine who missed 10 workdays per year was much more likely to be stigmatized than migraineurs who missed fewer workdays. People who missed more workdays were less likely to be seen as trying hard, less likely to be interviewed, more likely to be considered malingerers, and less likely to be considered trustworthy.

Fear of Pain and Social Distance

As part of the same study, respondents completed instruments that measured fear of pain and empathy, and also provided demographic information, including migraine status. Overall, fear of pain was similar between migraineurs and nonmigraineurs. Migraineurs feared migraine as much as they feared falling down a flight of stairs or having a car door slammed on the hand. Nonmigraineurs, however, considered migraine to be less severe than migraineurs did. Among nonmigraineurs, greater fear of pain was associated with greater social distance from migraineurs. But in the same group, greater fear of migraine was associated with less social distance from migraineurs.

Furthermore, Dr. Shapiro’s group noted that the more migraine is part of a person’s experience, the less social distance that person maintains from migraineurs. Similarly, they found that as empathy increased, the social distance to migraine decreased.

Other findings included that younger people were more likely to stigmatize migraine than older people, and that non-Caucasians were more likely to stigmatize migraine than Caucasians. The gender of the stigmatizer was a dominant influence on the amount of stigma.

Reasons for Migraine Stigma

Various hypotheses offer potential reasons for stigmatizing migraine. Approximately 75% of migraineurs are women, and migraine changes with hormonal fluctuations. Hence, sexism against women may be one cause of stigma.

Also, migraine has been considered a behavior problem or conversion disorder for decades, said Dr. Shapiro. One illustration of this point is that a monograph published in 1926 identified migraine as a neurosis. In 1894, Freud described migraine as the result of a failure to find release after sexual stimulation.

Migraine is associated with headache, and headache has various connotations. The type of headache with which most people are familiar is tension-type headache, thus the general public may be likely to minimize the severity or importance of migraine. The word “headache” also connotes “concern” or “annoyance,” which may contribute to a minimization of migraine’s severity.

Whatever its origin, the stigma associated with migraine often is overlooked, said Dr. Shapiro. Neurologists should consider the potential effects of stigma on health outcomes as they treat patients with headache, he concluded.

Erik Greb

Suggested Reading

Caspermeyer JJ, Sylvester EJ, Drazkowski JF, et al. Evaluation of stigmatizing language and medical errors in neurology coverage by US newspapers. Mayo Clin Proc. 2006;81(3):300-306.

Evans RW, Evans RE. A survey of neurologists on the likeability of headaches and other neurological disorders. Headache. 2010;50(7):1126-1129.

Evans RW, Evans RE, Kell HJ. A survey of family doctors on the likeability of migraine and other common diseases and their prevalence of migraine. Cephalalgia. 2010;30(5):620-623.

Young WB, Park JE, Tian IX, Kempner J. The stigma of migraine. PLoS One. 2013;8(1):e54074.

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