Migraine and Stigma: High Impact

Nancy Harris Bonk Community Member May 23, 2011
  • As any of the more than 37 million American Migraineurs can tell you, Migraine disease affects every single aspect of life. Just as significantly, the stigma that surrounds Migraine makes it even more difficult for Migraineurs to maintain any quality of life. It's simply unconscionable to think that some people are still unable to grasp the concept that Migraine is indeed a very real disease.

     

    Let's be very clear about what Migraine is. According to the American Headache Society, Migraine is a biological genetic disorder similar to asthma, high blood pressure or diabetes, where neurons in our brain are stimulated by certain actions that we don't totally understand yet. What we do know is this stimulation produces a surge of effects that discharge an inflammatory substance around the blood vessels and associated tissue on the outside of the brain which then activate pain pathways. Migraineurs' brains seem to be sensitive to certain triggers. Contributing to Migraine stigma is the problem that each person's attack is different, and with no diagnostic tool, there is no concrete evidence to prove Migraine disease.

     

    A 2010 study conducted by Dr. Jung Park and her group at the Jefferson Headache Clinic in Philadelphia found that people with chronic Migraine vs. people with episodic Migraine, suffer the effects of stigma more than people with other neurological diseases such as MS, stroke and epilepsy. This means Migraineurs in general feel more stigmatized about having Migraines than people who have been diagnosed with MS, stroke or epilepsy. They feel more abandoned, mocked and isolated by friends, employers and even family than people with other neurological conditions such as ALS or Parkinson's disease. An additional issue adding to the stigma is that there are some medical experts who don't understand or even recognize Migraine as a disease.

     

    This is not new information according to the "Atlas of Headache Disorders and Resources in the World 2011," a study conducted by the World Health Organization (WHO) and Lifting the Burden, which was released in early May. The report goes on to say Migraine is under-diagnosed, under-funded and clearly misunderstood. For more information on this study continue reading Migraine and Headache Burden: New WHO Report. 

     

    There may be many other reasons for Migraine stigma, most notably, the old fashioned notion that Migraine is simply a "neurotic's women's" issue, or as Dr. Jason Rosenberg, Director of the John Hopkins Headache Center and assistant professor of neurology at John Hopkins Medicine puts it,

    "It's often thought of as a weakness of character as opposed to a biological disease, and even though we now know that there's no link between personality traits and migraine, it's become a 'viral meme.'"

    A meme is an idea that grows according the same guidelines that dominate biological evolution.  In this case, this meme evolves from doctor to patient to family and so on.

     

    There are many ways to reduce Migraine stigma. Patient education is assuredly at the top of the list. This allows patients to better understand Migraine disease and makes it easier for them to communicate more effectively with their doctors and maintain a good relationship with them. Dr. Rosenberg also suggested that a diagnostic tool to confirm a Migraine diagnosis would be ideal. The WHO report recommends doctor education in headache is paramount, as is improved reimbursements for care, headache research, advocacy and even creation of lay support groups. 

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    While online support is readily available and an excellent source of information, many Migraineurs need more personal interaction. The WHO report recommends more lay support groups be formed. A Migraine and headache disorder support group allows patients to get accurate, timely information and education, feel more validated, and help each other improve coping skills. There are support groups already in existence that can be easily incorporated into a Migraine management plan. For more information on Migraine and headache disorder support groups, visit the The National Headache Foundation web site

     

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    Resources:

    Thanks for reading and feel well,

    NancySig

    Follow me on or

     

    visit my blog, Migraine and Other Headache Disorders

     

     

    © HealthCentral Network, 2011.
    Last updated May 23, 2011.

4 Comments
  • Ellen Schnakenberg
    Health Guide
    May. 28, 2011

    Thank you Nancy, for pointing out once again that this is not a disease of character, but of a physiological nature.  The stigma we as chronic Migraineurs are forced to live with every day is debilitating.  It serves to separate us not only from family and friends, but from good care from physicians, and often even from our livelihoods.  It's...

    RHMLucky777

    Read More

    Thank you Nancy, for pointing out once again that this is not a disease of character, but of a physiological nature.  The stigma we as chronic Migraineurs are forced to live with every day is debilitating.  It serves to separate us not only from family and friends, but from good care from physicians, and often even from our livelihoods.  It's unnecessary and so very, very widespread. 

     

    Hopefully as more information about Migraine becomes known, the idea that this is a neurotic disorder of hysterical women will go the way of lead and mercury used as medical treatments.  Hopefully the world will see these for what they are - nonsense and yes, even dangerous.   

  • betsyb
    May. 23, 2011

    Helpful post, Nancy, and good reminders!

    • Nancy Harris Bonk
      May. 24, 2011

      Thanks for reading betsy. We all have to work hard on reducing Migraine stigma!