Migraine Incurs More Stigma than Epilepsy: Study
Ask anyone with Migraines, and they'll tell you that the stigma associated with Migraine disease today is still terrible. In some ways, it's one of the worst parts of the disease; leaving us often feeling isolated, misunderstood, and even persecuted.
A groundbreaking study lead by Dr. William B. Young of the Jefferson Headache Center shows that "patients with Migraine (a combination of severe headache, nausea, light sensitivity, and other factors) suffer social stigma from their disease similar to the stigma experienced by patients with epilepsy."1
- Between October, 2009, and July, 2011, researchers recruited patients between the ages of 18 and 65 with Migraine or epilepsy from the Jefferson Headache Center and the Jefferson Comprehensive Epilepsy Center in Philadelphia, Pennsylvania.
- Questionnaires were administered in an office setting.
- All patients complete a demographic questionnaire, the stigma scale for chronic illness (SSCI), and the short form of the medical outcomes health survey (SF-12).
All patients also completed a series of questions about their disability.
- Migraine patients completed the Migraine disability score (MIDAS) and answered a rankable series of questions about the degree of resting that their Migraines make necessary.
- Epilepsy patients completed the Liverpool impact of epilepsy scale.
Patients who completed the study:
- 124 with episodic Migraine (EM) and chronic Migraine (MC)
- 62 with epilepsy (Ep)
- CM patients had more work-related disability than those with EM or Ep.
- Severity of headache was similar in EM and CM patients.
- CM patients had a greater need to rest than EM patients. Many needed bed rest during the day, for hours at a time, many days a month.
- CM patients experienced stigma that was statistically significantly more than Em or Ep patients.
Quality-of-life and functional measurements were:
- lower for CM patients than EM patients or Ep patients.
- lower for EM than Ep patients on the physical component subscale (PCS), but not on the mental component subscale (MCS).
- Migraine patients experienced consistent stigma across age, income, and educational difference.
- Epilepsy patients experienced had lower stigma scores correlated with younger age, higher education, and higher income. Study authors find this to suggest that a cultural shift may be taking place with education and antistigma efforts in epilepsy taking hold.
Once all factors were accounted for, "CM and Ep had similar stigma while EM had less. In other words, CM incurs more stigma than Ep, but only because in our sample people with CM experience more disability and are less able to work. However, CM incurs more stigma than EM, even when all factors are taken into account, perhaps because EM aligns best with public perceptions of the disease."2
"Stigma has important public health implications that ought to be addressed. As in epilepsy, we should undertake to reduce the stigma of migraine. These interventions may take place at multiple levels: by endeavoring to reduce stigma among the public through education, advocacy, and legal and policy interventions; at the organizational level, through training programs for clinicians; and at the intrapersonal level, through counseling, therapy, support, and empowerment programs."2
Summary and comments:
The findings of this study are sadly interesting. Nobody should have to deal with stigma causing the burden of living with a disease to be worse. The comparisons of stigma experienced by patients with chronic Migraine, episodic Migraine, and epilepsy demonstrate how badly Migraine is still misunderstood and its impact underestimated.
Study author Dr. William B. Young commented:
“I would like people who happen to have severe migraine disease be able to have a discussion at Thanksgiving dinner about their condition without cringing in anticipation of the hurtful and ignorant things their family is bound to say.”2
“I want the general public to understand that good hardworking people are commonly struck down with severe migraine disease and are unable to work, go to school, do the normal duties of parenting, or attend social activities. People with this condition do not deserve our disapproval for having a bad disease; they deserve our understanding of their condition, our respect for what they do despite constant excruciating pain, and our best efforts to help them in their lives.”2
Educational and awareness efforts are the best weapons we possess against this stigma. Everyone - Migraine patients, their families and friends, health care professionals, nonprofit organizations dedicated to Migraine - must stand and be heard with nobody assuming someone else will do it. Until this occurs, the stigma will continue, and people living with Migraine disease will suffer from it.
1 Thomas Jefferson University Press Release. "The Social Stigma of Migraine Headaches: Worse than Epilepsy." Newswise. January 15, 2013.
2 Young, William B.; Park, Jung E.; Tian, Iris X.; Kempner, Joanna. "The Stigma of Migraine." PLoS ONE. January, 2013.
3 Interview by Teri Robert with Dr. William B. Young. January 17, 2013.
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