The Avonex Alliance. Avonex. Coping with Invisible MS. December 2000.
Six years ago, Sherri Connell parked in a handicapped space at a shopping center near her home in Littleton, CO. When she returned, a sheriff’s car was blocking hers. She showed the deputy her handicapped placard, her registration, her MS Center identification card, and her driver’s license, and explained that she is allowed to park in handicapped spaces because she has multiple sclerosis. He put his hands on his hips, looked down at her in disbelief, and said, “I think you stole this placard. I saw you walk into the store, and I’m tired of people parking in handicapped places who don’t belong there.” Twenty minutes later, shaking and crying in frustration, Sherri demanded the deputy’s name and badge number and told him that if he didn’t move his car, she was driving through it. “I reported him,” Sherri says, “and I got an apology from the sheriff’s department. But I was totally humiliated.”
Sherri’s experience isn’t unusual. Many people assume that handicapped parking is reserved for those who use wheelchairs and find it hard to believe that someone like Sherri, 37, who walks normally and looks perfectly healthy, could possibly be sick. Even family members, friends, and caregivers can have trouble understanding the invisible symptoms of MS, which can include weakness, pain, fatigue, vertigo, and bladder and sexual problems, as well as cognitive changes such as difficulty in thinking clearly and memory loss.
After Sherri recovered from her first MS exacerbation – numbness on her left side that prevented her from walking – a friend asked if she was afraid of losing disability payments if the local social service agency discovered that she was able to walk again. If she could walk, the friend said, surely she could work. “I could work in a wheelchair. It’s the fatigue and the pain that sometimes keeps people with MS from working,” Sherri said.
“Most people with MS are not in wheelchairs, and we’re not in hospitals all the time, either,” says Liz Knepper, 28, of Chicago, IL, whose primary MS symptom is vertigo. “People at work who knew I had MS would say ‘Oh, you got dizzy? That’s not too bad.’ But I’d go to sleep with my hand pressed against the wall to steady myself and wake up feeling that the room was spinning out of control. You can often explain fatigue, numbness, or vision problems, but when you tell people you are dizzy, they just don’t get it.” Even good friends can be inadvertently insensitive. “Sometimes friends bring me dinner, but they come too late or stay too long. I don’t have the heart to tell them that I’m tired or ask them to leave,” explains Liz.
Speaking Out About Symptoms
“It is important for people with invisible MS symptoms to describe what they’re experiencing, so that they can get the help they need,” says Professor Jeffrey Greenstein, MD, director of the Multiple Sclerosis Center at Temple University Medical School in Philadelphia.
He urges his patients to educate friends, relatives, caregivers, and coworkers about MS. MS ActiveSource, MS society publications, and support groups are good sources of information for a better understanding of MS symptoms.
These resources can also be used when you’re trying to explain your invisible MS symptoms. Try to graphically illustrate how you feel. Describe how fatigue affects you as specifically as you can: For example, “I’m so exhausted I feel as if I would pass out if I tried to stand up.” Tell what your pain feels like: a knife scraping your skin; a hot iron held to your leg. Or describe dizziness as Liz does: lying in bed with your hand pressed against the wall to steady yourself. You may have to remind people of what you’ve told them in the past: “Do you remember me telling you about the fatigue (or dizziness, numbness, or vision problems) I feel as a result of having MS?”
You can also get help in dealing with problems related to invisible MS symptoms from Wayne and Sherri Connell’s website, www.invisibledisabilities.org, which they designed to help people with MS and other chronic diseases deal with the “invisible” nature of their disorders. Sherri sums up the dilemma this way: “Some people think we have a chronic disease because we are weak. We need to help them understand that we are weak because we have a chronic disease.”