Consult your healthcare team
Borsellino didn’t realize how important it was to discuss her symptoms until her friends talked her into seeing a psychologist shortly after she was diagnosed. “I kept saying, ‘I’m not crazy, I don’t need a psychologist.’ But now I realize it’s the most important thing I’ve done regarding my disease.” That’s because Borsellino’s psychologist gave her a key tool for dealing with her MS.
“She told me the more up-front you are with other people about your MS, the more up-front you are with yourself. And that helps you accept the hand you’re dealt,” Borsellino says. She admits that before she saw the psychologist, she was worried that people might see her as weak if she talked about her symptoms. “But my psychologist said it’s not a sign of weakness; it’s a sign of strength,” Borsellino says. “Any time I can face this disease and say I’m not ashamed of it, it makes me feel in control. When I’m honest with people about my symptoms, it feels like a load off my back.”
That said, there is no one-size-fits-all strategy when it comes to talking about your symptoms—particularly the invisible ones. For instance, Maria Reyes-Velarde, a Long Island, New York, resident who was diagnosed with MS in 2001, says she only tells people—including close family members—about a symptom “if it interferes with something I need to do.”
Reyes-Velarde’s invisible symptoms include fatigue, pins-and-needles sensations in her legs and face, vision problems and cognitive issues such as forgetfulness and distractibility. She’s found that the most effective way to discuss her symptoms is to reveal them incrementally and in ways the person she’s addressing can relate to. For instance, her husband can get frustrated when she has trouble doing something that once was easy for her. “So I start by mentioning little things to him, like ‘I can’t do as much gardening this year as I did last year,’ rather than just all of a sudden not gardening.”
Deborah Miller, PhD, a social worker at the Cleveland Clinic Mellen Center for Multiple Sclerosis, says therapists can help you sort out which communication style works best for you. “Support groups can provide a vital function, but they’re no substitute for working with a good mental health professional when it comes to dealing with this issue.”
Other professionals can also be of assistance. Borsellino found that many people confuse MS with muscular dystrophy, so she asked her neurologist for a simple explanation of MS that she could tell anyone. Dr. Miller suggests using printed materials from the National MS Society. “Having something published by a national organization, with explicit details about the disease, gives legitimacy to your symptoms [in many people’s minds]. And it opens the door to conversation.” It also helps educate people who may not understand why you’re using a handicapped space, or who make comments like, “You don’t look like you’re sick.”
After you’ve disclosed your symptoms to someone, Dr. Miller says it’s useful to tell the person the symptoms are intermittent, so he or she won’t worry you’ll constantly be affected. “And it’s really important to let people know you’re doing everything you can to manage your symptoms and are under a doctor’s care,” she says. This helps head off well-meaning but invasive or upsetting health advice from friends, family or acquaintances. And it also shows you’re not making excuses, giving up or being lazy.
Dr. Crawford tells the story of a patient whose husband thought she was using her MS-related fatigue as an excuse to get out of tasks she didn’t want to do. “So she invited her husband and her children to a session with me. They saw that I was her advocate and that I believed her,” Dr. Crawford says. “It was a real turning point for them to hear from a professional what she was going through.”