Research Confirms Migraine Patients Deal with Extreme Stigma
All of us who live with migraine know very well the kind of bias associated with living with this disease. Everyone from friends to family members to co-workers and employers misunderstand the nature of our condition, minimize its impact on our lives and sometimes even discriminate against us.
In the largest study of migraine-related stigma ever conducted and the first done in the United States, the research of William Young, Migraine.com's own Joanna Kempner and other colleagues at the Jefferson Headache Clinic provides strong confirmation of our patient experiences with stigma.
The researchers recruited patients from the Jefferson Headache Clinic and Jefferson Comprehensive Epilepsy Center for the study. 123 patients lived with episodic migraine, 123 lived with chronic migraine and 62 lived with epilepsy. The researchers formulated a questionnaire for patients participating in the study to assess demographic characteristics, determine the ways in which they are impacted by migraine disease in their daily life activities and the level of stigma and discrimination they deal with due to their disease.
The researchers defined stigma as "an established construct in the social sciences that describes a characteristic, trait, or diagnosis that discredits individuals and elicits prejudice, discrimination, and loss of status."
They determined inability to work was associated with the greatest stigma among patients across all conditions. As chronic migraine patients were far less likely to be able to work due to the burden of living with migraine disease (almost 50% were completely unable to work), chronic migraineurs experienced greater stigma and discrimination than either episodic migraine patients or patients with epilepsy. This was true despite the fact that the overall levels of stigma were similar for both chronic migraine and epilepsy patients. Further, chronic migraine patients experienced the same high level of stigma across age, income and education differences.
There are a few important takeaways from this significant research:
- The stigma we believe we deal with is very real. This is true both of our internalized stigma and stigma imposed by others upon us.
- Stigma significantly impacts our social relationships and employment and career opportunities.
- Stigma helps explain the vastly inadequate level of research funding for a disease with the kind of broad, devastating impact of migraine. It's simply not perceived as serious or life changing, thus policy makers see little need to allocate more money toward research and those conducting research may be less inclined to place any value on studying it.
- We should take similar steps to those taken by the epilepsy community to reduce stigma on a number of fronts: public education, advocacy and legal efforts; training programs for doctors and their staff; and on the individual patient level through programs that provide counseling, support and empowerment.
Strengths of this research include the use of validated instruments assessing the patient participants and the size of the sample population.
The researchers acknowledge that a key limitation of this study may be that because study participants were recruited from highly specialized clinics, the findings may not hold up generally. Further, they did not differentiate between different types of epilepsy or separate out patients with migraine with aura.
How much has your migraine disease changed or evolved over time?