This article was originally published in Bottom Line/Health (then called Health Confidential) in 1994.
Seven years ago, I was diagnosed with multiple sclerosis—an often debilitating neurological disorder that causes vision problems, muscle weakness and poor coordination.
At the time, I knew nothing about the illness—and I decided to keep it that way. For several years, I avoided thinking and talking about MS—and kept my diagnosis a secret from everyone but my mother, husband and children. I didn’t even tell my father. I thought I could beat MS on my own and no one would ever have to know.
Looking back, I can see that my refusal to learn about my illness and my need to hide it were attempts to fend off fear. Unfortunately, the ignorance and secrecy only fueled my anxiety.
Since then, I’ve found far more effective ways of coping with MS…and with chronic illness in general. Here’s what I wish I’d known earlier…
Educate yourself. Learn as much as you can about your illness—whether it’s MS or another chronic ailment.
There are still many unanswered questions about MS—including what causes it, how best to treat it and what any individual’s prognosis will be. Yet the more I’ve learned about MS, the more I realize that there is plenty of good news…
Sources of information: Your doctor, your local library and nonprofit organizations such as the National Multiple Sclerosis Society. These organizations can put you in touch with support groups and other local resources.
Admit you have a problem—and ask for the help and understanding you need. To convince family and friends that nothing was seriously wrong with me, I became a good liar. When I started having trouble with my balance, for example, I blamed it on tendinitis and a bad knee. Being dishonest with people I cared about sapped my self-esteem.
When you lie, you have to work hard to keep your stories straight. That takes a great deal of energy. It also creates a lot of psychological stress. As someone coping with the symptoms of MS, I certainly didn’t need more of that.
I kept my illness secret partly because I didn’t want to hurt anyone. But by avoiding people, making excuses and hiding the truth, I suspect I caused them—and myself—even more pain.
I “went public” with my diagnosis in 1992. I wasn’t trying to be noble. Reporters from the tabloids had started knocking on neighbors’ doors, trying to confirm rumors that my unsteady balance stemmed from a drinking problem. I realized I had to tell the truth—in public—before someone created an ugly story.
Once I did, a huge weight was lifted off my shoulders. There was an outpouring of support from friends and strangers alike. The calls, cards and letters made me realize how much I’d been cheating myself by trying to bear this burden alone.
My family has been wonderful, too. On bad days, when my symptoms flare up, they understand and aren’t frightened—and I don’t need to hide it.
Having MS has changed the way I view other people’s disabilities. I used to feel sorry for wheelchair-bound people and those with other disabilities. Not anymore. I know that I don’t want pity…and that people who cope with disability every day are tough. We learn to live with our challenges. We do our best with what we have.
Keep busy—but know your limits. The busier I am, the less time I have to think abut my illness. That helps me avoid the temptation of self-pity.
Since my diagnosis, I’ve launched several business ventures. More important, I started the Annette Funicello Research Fund for Neurological Diseases, which will help finance research into MS and related illnesses.
As busy as I am, I’m careful not to get overtired. In the beginning, I pushed myself too hard. I thought that by refusing to slow down, I could prove that my illness didn’t really exist.
Now I rest when I need to. I hold most of my business meetings at home. When I travel, I keep my schedule as light as possible.
What’s important is balance. Resting doesn’t mean retiring from life.
Find ways to cope that work for you. While I would not presume to tell anyone else how to deal with a chronic illness, I think that sharing information is important. So here are three things I’ve discovered that help me. Maybe they’ll help you or someone close to you, too.
1. Stay cool. Because heat exacerbates MS symptoms, it’s important to keep body temperature down—especially in summer. My favorite way to keep cool is to suck on crushed ice.
2. Elevate the legs. I’ve found that 20 minutes of lying down with a pillow under my knees and lower legs seems to make walking easier. I might do this several times a day.
3. Follow a healthy lifestyle. I firmly believe that anything that reduces stress helps fight illness. I feel much better now that I’ve given up smoking and drinking alcohol. I’ve also noticed that my symptoms are less bothersome when I eat a low-fat diet.
Stay optimistic . I’ve tried more than two dozen treatments for MS, from acupuncture to vitamins to various prescription drugs. I discuss everything with my doctor and make sure I understand the risks and side effects of each treatment I try.
I must say that I’m very skeptical of “fad” treatments such as hyperbaric chambers…removing fillings from the teeth…chelation therapy. I keep my spirits up by making the most of my good days and by remembering how many people are working to solve the puzzle of MS. I take one day at a time, and if one treatment doesn’t work, I go on to the next.
So far, nothing has led to a remission. Although that’s a little discouraging, I haven’t stopped fighting—far from it.
I’ve always been religious, and my faith has been a great help. I know that my illness has a purpose, event though I don’t yet know what that purpose might be.
I take comfort in knowing that the prayers of many loved ones are behind me. I keep a smile on my face—and I never give up hope.
