Migraines and Stigma - How We Can Make a Difference and Why We Should

Teri Robert @trobert Health Guide
  • Research has shown that the stigma associated with migraine disease increases the burden of living with migraines and that migraine incurs more stigma than many other diseases, including epilepsy.

    My Personal Journey

    My personal journey with migraines began when I was six years old and continues now, 54 years later. I have encountered stigma throughout my journey:

    • In grade school, other students mocked me ruthlessly because trying to play with them in bright sunlight or high temperatures almost always gave me a "bad headache" and made me vomit.
    • In junior high, the stigma manifested mainly in physical education class, and it came not only from the other students, but also from the teacher. Vomiting and a "bad headache" after strenuous physical activity made me a "whiner" and a "sissy" in their eyes. The teacher accused me of faking to get out of class.
    • In high school, being the "headache girl" or the "puke girl," left me with fewer friends.
    • A few college professors were understanding and accommodating, but too many others were quick to let me know that "headaches" were not acceptable reasons for missing class or for work to be late.
    • I could go on and on about the stigma I've encountered as an adult, but will limit it to a few points:
      • Too many doctors have told me, "They're just headaches." "It's a woman thing. Learn to live with it," "Quit being a baby. They're just headaches," and more.
      • Someone I've known for 40 years and I thought was a friend, recently suggested three Tylenol and a cup of coffee and told me, "If you won't try Tylenol for that migraine, stop complaining."

    Other Patients' Journeys

    As a patient educator and advocate, many migraine and headache patients have entrusted their journeys and their struggles with stigma to me. It breaks my heart that all too many of their journeys are so unnecessarily difficult. The stigma of migraine has exacted a horrendous, harrowing, hideous toll. People have lost friends, family, marriages, careers. Some have even lost their lives when the stigma contributed to feelings of overwhelming hopelessness that led people to suicide.

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    Our Uninvited, Unwelcome War

    Nearly 15 years ago, my own migraines spun wildly out of control, and I went through doctor after doctor within 100 miles of my home - to no avail. Having my life taken over by migraines made me angry, so I hit the Internet looking for information and help. I found help in the form of Dr. William Young at the Jefferson Headache Center, an eight-hour drive, each direction, from my home. From Dr. Young, I not only received the treatment I so desperately and fiercely needed, I received encouragement to learn about migraines and advocate for myself, and that included battling the stigma associated with migraine.

     

    Since then, I have waged war on the stigma by:

    • Educating myself and others about migraine. Stigma can originate from fear of the unknown, so education is vital in this war.
    • Striving to be my own best advocate and teaching and encouraging others to do the same.
    • Working with nonprofit migraine and headache organizations to unite behind purple as the "official" awareness color for migraine, cluster headaches, and ALL headache disorders.
    • Co-founding the American Headache and Migraine Association (AHMA), a patient-focused, patient-driven nonprofit organization for patients with migraine and headache disorders and their friends and family.

  • The Larger War with Stigma

    Both on this migraine site and across the entire HealthCentral Network, we're all dedicated to fighting the stigma associated with migraine, other headache disorders, and the plethora of other diseases and conditions covered on HealthCentral. If you're living with other health conditions, I urge you to click on the "Health A-Z" button on the top of our pages and visit our sites for those conditions.

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    Ways Each of Us Can Fight Stigma

    • Learn, learn, and learn more. The more we know about migraine, the better equipped we are to dispel myths and misconceptions.

    • Share, share, and share more. If someone says something to you about migraine that's incorrect, don't just let it go. Politely share the correct information with them.

    • Participate in awareness building whenever possible. Building awareness can reduce stigma. Every year, participate as fully as is possible for you in Migraine and Headache Awareness Month (#MHAM). Each year, there's an event page on Facebook for MHAM that shares lots of ways to build awareness, and there are lots of opportunities that are quick and simple enough for those of us who are debilitated from migraine and other headache disorders to participate. Check out the 2014 MHAM event page.

    • We need to remember that if we don't stand up for ourselves, we can't expect other people to stand up for us. There are links below to more information on migraine and stigma. Posting these links to Twitter, Facebook, and other places can help fight the stigma.

    More on the Stigma of Migraine

    Summary

    Many people with migraine and other headache disorders feel as if our lives are hell, at least part of the time. Stigma makes this even worse. We can all help ourselves and each other by increasing awareness and fighting the stigma.

     

    Will you join me and become a Migraine StigmaBuster?

    Please post a comment below if you have suggestions or other comments. Let's have a good discussion on this topic, please?!

    You're Invited to Enter our Anti-Stigma Photo Contest!

    Serious diseases often bring with them serious stigmas, which is why we would like you to join us as we launch a national anti-stigma campaign from June 16 – August 8, 2014. Our goal is to break hundreds of stigmas by asking our community to share a picture and story of how they #LiveBold despite their health condition. Enter your photo now to fight stigma and be eligible to win prizes!

     

    Live well,

    PurpleRibbonTiny Teri1

     

    Make a difference... Donate to the 36 Million Migraine Campaign!

     

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    © Teri Robert, 2014, •  Last updated June 17, 2014.

Published On: June 17, 2014