5 invisible symptoms of M.S. Unseen Multiple Sclerosis problems
The Invisible Side of MS: When Others Can't See Your Symptoms
Tattooed on the left forearm of Marni Blake Ellis is the word "MSquared." What’s the significance? It’s the name of the charity started by the 33-year-old Brooklyn-based TV producer in 2010 to raise awareness for multiple sclerosis. When people inquire about the tattoo, they’re often surprised to learn that Ellis has been living with MS since she was 23. “They’re in total disbelief,” she says. That’s because, on most days, she looks “just fine.”
Many people with MS can relate. Some of the most common MS symptoms — fatigue, numbness, tingling, vision loss, dizziness, spasticity, and bladder or bowel problems — aren't visible to anyone but the person living with the chronic, progressive disease, says Nancy L. Sicotte, MD, director of the Multiple Sclerosis Program and neurology residency training at Cedars-Sinai Medical Center in Los Angeles. “For people who have these symptoms, there’s often a frustration that others don’t recognize that they are suffering,” she says.
And it’s not just strangers. Family members, too, can have difficulty understanding what a parent, sibling, or partner with MS is going through, says Rosalind Kalb, PhD, vice president for clinical care, advocacy services, and research at the National Multiple Sclerosis Society. What’s more, most people get MS when they’re in their twenties or thirties, when they're young and otherwise healthy. And that makes it even harder for others to recognize what can, in actuality, be a very debilitating disease.
How to Explain Invisible Symptoms to the Outside World
So what can you tell family, friends, and colleagues when you’re not feeling as good as you look? Here’s advice from a few experts — both MDs and real people living with MS:
Be honest.Ellis, who was diagnosed 10 years ago, never hides her MS. “I’m so open about it,” she says. “I just tell people if I’m not feeling well.” In fact, she has had to leave work a few times because of , and no one objected. Ellis believes it’s because she has taken the time to educate others about her condition as much as she can.
Remember that not everyone needs to understand.John Platt, 41, was diagnosed with MS in 2005. One day, the Pittsburgh resident lost his balance while in his backyard. He'd left his cane inside and went rolling down a hill. A young man who worked for his lawn service saw him stumble and thoughtlessly remarked, “Nice — drinking during the day!” Although Platt ordinarily tries to educate people about MS, this time he ignored the comment and went about his day. Sometimes, Platt says he's found, “you’re just better off to walk away.”
Learn to say no.If you’re not feeling well, it’s okay to say so, says Brooklyn-based performer Lisa Rafaela Clair, 33, who was diagnosed with MS in 2013. Soon after her diagnosis, Clair had a pizza date with some friends. Although Clair finds that she feels better when she avoids foods like cheese and bread, she went as planned and suffered for it afterward. “I learned from that that I can say no and tell my friends to pick a place we can all enjoy and still have fun,” she says. True friends will understand and be supportive, she adds.
Join a support group.“We always recommend that people with MS and their families utilize resources like support groups. By talking with others, they can see they’re not alone," Dr. Sicotte says. You can search for groups located near you on the National MS Society website.
Offer age-appropriate explanations.Children can have a hard time when Mom or Dad has MS and can’t do what their friends’ parents can, especially if they don’t look different from those other parents. Speak with them on their level, Kalb advises. “The explanations for a 5-year-old and a 15-year-old are different,” she says. For younger children, describe your symptoms with words they can picture in their minds. “You might say: ‘I’m just really, really tired today. I feel like I’ve got these big heavy things on my legs and I’m trying to walk through mud up to my waist,’” Kalb suggests. If you give them visuals, she says, kids will understand more than you may think.
The Bottom Line
Even if your symptoms are invisible to others, they’re very real — and that means you should never ignore them. It’s important that you listen to your body. If you don’t, you could overdo it or even exacerbate symptoms, Sicotte says. Work with your health care team to get your symptoms under the best control.
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