Migraine Burden Worsened by Stigma

Patient Expert

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Migraines. Say the word in a group of people who don't have Migraine disease, and... Well, if you're here reading this, you probably know what happens all too often... sighs, eye rolling, people making comments that show them to be totally clueless.

At the 52nd annual scientific meeting of the American Headache Society (June, 2010), results of a study about Migraine and stigma were presented.

The Study:

Study background:

"Stigma is an established construct in the social sciences that describes an attribute, trait or disorder that is deeply discrediting and may elicit some form of community sanction. Research has shown many diseases, like HIV, mental illness, and cancer, can be highly stigmatizing, resulting in depression, anxiety, decreased quality of life, and disruption of social relationships. But stigma attaches to disease to varying degrees. To date, there has been no research on stigma in people with Migraine. This study will look at stigma in both chronic and episodic Migraine patients, in order to understand how stigma attaches to Migraine. This effort will ultimately aid in the development of public health strategies to combat the stigmatizing effects of Migraine."1

Study objective:

"To characterize stigma in patients with chronic and episodic Migraines."1

Study methods:

  • A survey was conducted with outpatients from the Jefferson Headache Center in Philadelphia.
  • There were 123 participants with chronic Migraine (CM) and 123 participants with episodic Migraine (EM).
  • Participants were assessed using the Stigma Scale for Chronic Illness (SSCI) and the Migraine Disability Scale (MIDAS). The (SSCI) is a 24-item survey used to assess stigma in persons with neurological disorders and for comparisons across disorders. SSCI measures issues such as how often people feel criticized, misunderstood or ostracized for having an illness.

Study results:

  • Participants with CM scored higher on the SSCI than participants with EM.
  • Participants with CM also scored significantly higher on the SSCI than a mixed panel of patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer's, ALS and Parkinson's disease
  • MIDAS scores were much higher for CM (median score was 60) participants than for EM participants (median score was 18).

Study conclusions:

"This is the first study to evaluate stigma in Migraineurs. Stigma is significant in Migraineurs attending a clinic as measured with the SSCI. It is worse in chronic than episodic Migraineurs, and correlates with disability but not with age, gender, income, or education."1

Comments about this study:

"You can't see it, so people don't understand the condition,, and co-workers and employers sometimes think the person is trying to get more time off for something unimportant because they don't think the pain and suffering is real."2 ~ Lead author Dr. Jung E. Park

A husband felt that things weren't the same when his wife couldn't have sexual intercourse or maybe take care of the children as much as she once did. When something impacts functioning like this, and is not well understood, we tend to stigmatize."2 ~ Lead author Dr. Jung E. Park

Dr. David Dodick, president of the American Headache Society, and a practicing Migraine and headache specialist at the Mayo Clinic in Scottsdale, Arizona, had several comments to make:

"There is such a thing as being 'present' at work but not really being able to function well," noted Dodick. Many migraine sufferers lose their jobs because of their illness, he said, and because of stigma "many people are afraid to admit they get migraines." Sufferers can often become depressed, he added.2

This research "starts a conversation and is a step toward banishing the stigma and allowing individuals with migraine not to suffer in silence, and hopefully eliminates the burden, as they are already burdened enough by the disease. Hopefully, this research will help them come out of the closet."2

Summary and comments:

This research clearly showed the prevalence of stigma attached to Migraine.

The stigma of Migraine is so prevalent that I think most of us have experienced it at one time or another. Lack of understanding Migraine disease is a primary factor in the continuation of this stigma. This lack of understanding is especially strong in the general public as evidenced by how many Migraineurs have been suggested to people suggesting that we take a couple of Tylenol or Excedrin for our "headaches." Advertising for over-the-counter medications serve to make the stigma more pervasive because they portray Migraines as easy to treat. Unfortunately, lack of understanding in people who have relatively easy to manage Migraines and even some doctors also creates and perpetuates the stigma.

Hopefully, more research and better public, patient, and physician education will eventually help reduce the stigma.

For our part, each of us should take every opportunity to teach others about Migraine as a potentially debilitating genetic neurological disease. There are materials on this site that can be used for that purpose. Please share these links with people and / or print copies to give to people:

MigraineCast also has a podcast to address this issue, Understanding Even When YOU Don't have Migraines.

Our live Migraine chats in June were The Stigma and People Who Don't Understand. You may find the transcripts of those chats interesting:


Resources:

1 Park J.E.1; Kempner J.2; Young W.B. "The Stigma of Migraine." Poster presentation. 52nd annual meeting of the American Headache Society. Los Angeles. June, 2010.

2 Holohan, Ellin. "For Migraine Sufferers, Stigma Adds to Burden." HealthDay News. Bloomberg Businessweek. June 25, 2010.

Medical review by John Claude Krusz, PhD, MD

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