This is an interesting article from 2015 in the magazine Neurology Now (journals.lww.com/neurologynow) about the “stigma of a neurologic disorder.” The article contains input from patients, physicians, and researchers about turning “negative reactions into positive encounters” and turning “staring into caring.”
Brain Support Network volunteer Denise Dagan read over the article recently. Here are some highlights from her perspective:
Patrick Corrigan, PsyD, principal investigator at the National Consortium on Stigma and Empowerment and professor of psychology at the Illinois Institute of Technology, advocates for more “face time” between patients with neurologic disorders and the general public. He advises people to “meet and get to know that person with the disorder. Sitting at church or working alongside someone can disarm prejudice and reframe misconceptions, while combining different points of view,” he says.
If you are a person with a neurologic disorder, he recommends:
* Get connected with others dealing with the same challenges so you don’t feel alone. Learn coping mechanisms together by modeling each other’s behaviors.
* Be kind to yourself. “Self-stigma is an egregious impact of stigma in general, a diminished sense of self-esteem leading to a ‘Why try?’ attitude in many people,”
* Dare to Share. Talking openly about symptoms can take a bite out of stigma and its effects. Stephanie Schroeder has Tourette’s. She says, “What does bother me is the amount of negative energy other people spend trying to shame me… It says more about them than about me or the disorder.” Nancy Mulhearn was diagnosed with Parkinson’s at age 44. For years she denied the disease and hid her symptoms. “I didn’t want to be pitied or stared at.” Now, as for strangers’ curiosity, she addresses it head-on. “If I’m fumbling for change, I say, ‘I have Parkinson’s disease,’” she explains. “I could go hide, but if other people see I’m OK with this, they’re usually OK, too.”
In the “Countering the Culture” section of the article, there is a lovely story about people educating those around them to overwrite misinformation about their disease in their community and getting a very supportive response.
The “Fighting Skepticism” section of the article talks about how you can scream at the top of your lungs about your symptoms and how they affect your ability to function in the world, and still be unheard. So, when consulting with headache patients, Dr. Chatterjee invites the entire family to learn more about what their loved one is experiencing. “I think 99 percent of the time, when you clearly explain this condition [migraine], a person’s attitude changes from one of cynicism to extreme support,”
The last two sections, “Battling Bias” and “Know the Basics,” discuss how physical symptoms may affect aspects of life such as work, school, play, leisure, and intimacy, and for those who want and need to work who are dogged by the question: to tell or not to tell? Rights under the Americans With Disabilities Act of 1990 are briefly outlined.
Here’s a link to the article:
Turn Staring Into Caring: The stigma of a neurologic disorder can be stressful—and can make symptoms worse. Patients and doctors teach us how to turn negative reactions into positive encounters.
Neurology Now
February/March 2015; Volume 11(1); P 34–38
by Stephanie Stephens
Lots to think about!
Robin