DISEASE MANAGEMENT, RELATIONSHIPS DECEMBER 2018/JANUARY 2019 BY PAUL WYNN Ease Awkward Social Situations Certain visible symptoms can make social situations tricky. Follow these strategies to make yourself and others more comfortable.

Three years ago, Maggie Whittum, 36, experienced a sudden severe headache and difficulties with balance. She was rushed to the hospital, where she underwent surgery to remove a blood clot from her brainstem. The operation saved her life, but she left the hospital paralyzed on her left side and with a distorted face. For the next two and a half years, she says, she was too embarrassed to leave her house. She didn't want to be stared at or asked why she used a cane. "My desire to go to the grocery store or to a movie was outweighed by my shame," she recalls. Illustration by Yann Kebbi

Whittum, who had been studying acting in Washington, DC, at the time of her stroke, moved back to Denver to be closer to her family. Once home, she underwent several surgeries and many hours of physical therapy. Only then did she start feeling more sure of herself and confident enough to go out in public. She began by attending support group meetings and doing local errands.

She made a huge leap last summer when she performed on stage in the musical Into the Woods with Phamaly, a theater company in Denver that produces professional plays cast with actors with disabilities. "It was exciting to be on stage again," says Whittum. Visible Signs Many neurologic disorders are accompanied by visible symptoms such as tremors, tics, problems walking, imbalance, facial paralysis, seizures, trouble swallowing, and drooling, which can be embarrassing in social situations.

These symptoms cause many people to stay home and remain isolated, says Rebecca Gilbert, MD, PhD, vice president and chief scientific officer at the American Parkinson Disease Association in Staten Island, NY. "Some people are comfortable with their disease and its symptoms, but most people keep it a secret." Be Open

As visible symptoms become more pronounced, people are often forced to talk about them and be more forthright about their condition. Sometimes it's just a matter of explaining to people why you use a cane or have tics to set people at ease, says Dr. Gilbert. "It can be very liberating to be open about your condition because sometimes the act of hiding it makes people more anxious and the visible symptoms even more pronounced," she says.

Being upfront works for Faye Linda Wachs, PhD, who has had Bell's palsy for nine years and recently developed synkinesis, a miswiring of the nerves that results in involuntary muscle movements accompanying voluntary movements. When people smile, for example, their eyes may also squint.

Dr. Wachs, a sociology professor at California State Polytechnic University in Pomona, CA, was recently interviewed for a documentary about women and surfing. "I warned the producers that I had facial paralysis," she recalls. "When they arrived for the shoot, they were relieved that it wasn't nearly as bad [as I had made it out to be], and it gave us all a chance to relax and focus on the documentary."

Kathleen Gingerelli is also very open about her condition. She has Friedreich's ataxia, an inherited disease that causes progressive damage to the nervous system, resulting in poor coordination and problems walking. For the past four years, Gingerelli has marched with several thousand people in New York City in the Disability Pride Parade, which brings together people with all types of disabilities. Gingerelli, 51, walks with her support group during the nine-block march to help raise awareness about her disease. "It's inspiring to see so many people coming together to support one another," she says. Schedule Carefully People who aren't as comfortable being open about their condition may skip certain situations to avoid awkward moments. For example, people with cerebral palsy, Parkinson's disease, amyotrophic lateral sclerosis, or myasthenia gravis, who are more prone to drooling, may avoid meeting people for meals. Or they may schedule outings or social engagements when their medication is most effective.

For others, scheduling is more of a practical matter. Gingerelli knows that mornings are not her best time of day. "I look clumsy when I walk because my balance is off and my legs are very stiff and don't bend," says Gingerelli. "After I've been moving around in the morning and have had a chance to stretch my legs, then I'll go out in the afternoon and do all my errands."

For others still, scheduling is a safety concern. Lisa Cohen, 49, who has multiple sclerosis (MS), gets around using a cane in New York City. While the city always seems busy, she avoids rush hour, when people are especially in a hurry. "I don't want to be run over by everyone rushing to get home, so I go out when it's less hectic," she says. Join A Support Group Even invisible symptoms like fatigue, weakness, and cognitive difficulties can worsen and become more obvious to family, friends, and the general public, says Julie Fiol, senior manager of health care services at the National MS Society. "Getting out of the house to attend a support group is a great first step. At support groups you'll be surrounded by people who understand you and may have the same visible symptoms."

Beverly Ribaudo, who was diagnosed with Parkinson's disease 20 years ago, leads a support group in Yuma, AZ. "Living with tremors can be upsetting and embarrassing when you're in public, but when you're around people like you, it all seems almost normal and you can be yourself." Keep Your Sense Of Humor A self-described class clown, Ribaudo had a keen sense of humor long before she began experiencing symptoms of Parkinson's disease in her late 30s. For years, she did stand-up routines at RV parks with her husband, Sal.

As her tremors got worse, her right hand would shake when she held a microphone during shows.

"Strangers would ask me what was wrong and I would say, 'Have you ever heard of Michael J. Fox? We both have Parkinson's disease. The only difference is he has a bigger bank account,'" says Ribaudo, who self-published the book Parkinson's Humor in 2012.

At her support group, Ribaudo says, her friends share funny stories about how to handle social situations. "One man in our group works part-time at Home Depot. He tells people his hands shake because he works in the paint mixing department," she says. Gingerelli, 51, also finds humor in her situation. She admits that her ataxia makes her walk as though she's inebriated. "I've had bartenders ask me if I'm drunk," she says. "I always tell them that I'm the designated driver."

Humor may even ease symptoms, says Dr. Gilbert. "Humor helps counteract the anxiety that can aggravate symptoms." Get Creative Finding ways to express your personality or style can help divert attention from your condition. As Cohen's MS progressed, she started using two canes, which she often decorates with leopard tape or other fun materials.

"A plain cane can make you look sick, but a funky cane makes you look fun and feel better," says Cohen, who wrote the book Overcome the BS of MS: A 3-Step Plan for Women Living With Multiple Sclerosis (CreateSpace Publishing, 2015).

Dr. Wachs also experiments with different ways to divert attention from her facial paralysis. "I love John Fluevog shoes," she says. "People will notice my unusual shoes instead of my unusual smile. I encourage others to find ways to express themselves with hats, shoes, and accessories."

Drawing on her own challenges, Dr. Wachs started researching the social impact of Bell's palsy and synkinesis. She has interviewed more than 100 people and is writing a book.

Through her interviews, she learned that many people with Bell's palsy often unwittingly convey the wrong facial expression.

Subscribe to Our Email Newsletter!

Email Address

Subscribe Now

By signing up, you agree to our Privacy Policy and Terms. Dr. Wachs recalls how one woman would smile at her neighbors while running. After a diagnosis of Bell's palsy, the woman continued to run, but when she smiled at people she looked as though she was grimacing in pain. "The woman got creative," says Dr. Wachs. "She replaced the smile with a wave and now says 'good morning' instead."