STOWE, VT—Migraine is associated with a signifi- cant 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 present-
ed members of the Amazon Mechanical Turk commu-
nity 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
Migraineurs Bear Stigma That
Influences Health Outcomes
Stigma may make migraineurs less likely to disclose their condition or seek treatment.