For people with migraine, feelings of stigma may impact disability, quality of life
Migraine can impact many aspects of a person’s life, but less is known about how feelings of stigma about the disease affect quality of life. For people with migraine, these feelings of stigma were linked to more disability, increased disease burden and reduced quality of life, according to new research published in the January 17, 2024, online issue of Neurology, the medical journal of the American Academy of Neurology.
“Stigma is common where the disease is not readily apparent to others, and there is indication that it could be especially relevant for those living with migraine,” said study author Robert Evan Shapiro, MD, PhD, of the University of Vermont and Fellow of the American Academy of Neurology. “This stigma may arise when a person with migraine recognizes negative stereotypes about the disease and experiences shame for having the disease, fear of experiencing stigma from others, or other negative emotions.”
For the study, researchers looked at 59,001 people with migraine with an average age of 41. Among all participants, 41% reported experiencing four or more headache days per month on average.
Participants answered 12 questions to assess two types of stigma: whether they felt others viewed migraine being used for secondary gain and whether they felt others were minimizing the burden of migraine. Questions included “How often have you felt that others viewed your migraine as a way to get attention?” “… as something that made things difficult for your co-workers or supervisor?” and “…with a lack of understanding of the pain and other symptoms?”
Researchers found that 32% of the participants experienced migraine-related stigma often or very often.
To assess migraine-related disability, participants reported the number of days they missed or had reduced productivity at work, home or social events over the previous three months. High scores on migraine-related stigma were linked with moderate to severe disability. Three-quarters of those who experienced stigma often or very often had moderate to severe disability, compared to 19% of those who never experienced stigma.
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