The hard truth about living with an invisible illness: 'You don't look sick'
You know when you feel sick, but it’s not always evident to the people around you? While for some that can be a perk, it’s not ideal for people with certain health conditions. That includes some people living with multiple sclerosis, who have invisible symptoms that make it hard for others to understand just how much they’re struggling.
Multiple sclerosis (MS) is a chronic and usually progressive autoimmune disease that damages the sheaths of the nerve cells in a person’s brain and spinal cord, according to the National Multiple Sclerosis Society. People with MS can have symptoms that include difficulty with balance, trouble walking, and involuntary muscle spasms. But more common symptoms also include things you can’t see, such as fatigue, numbness and tingling, weakness, pain, cognitive changes, and bladder and bowel issues.
These invisible symptoms are the focus of this year’s World MS Day — which takes place on Thursday, May 30th — and is promoted with the hashtag #MyInvisibleMS to raise awareness of the silent symptoms of MS and its unseen impact on quality of life.
Ann Marie Johnson struggles with several of those “invisible” signs of the disease. “I hear ‘you don’t look sick’ all the time,” she tells Yahoo Lifestyle. “I still work and I volunteer in many different capacities. I’m doing a lot of stuff, so people forget. But you have no idea the type of planning and effort it takes for me to do that.”
Johnson was diagnosed with the disease in her early 30s when her symptoms suddenly came on. She had pins and needles in her fingers one day and, by the next, she says she “couldn’t walk, hold a cup, and couldn’t comb my hair. My fine motor skills were just shot.”
Now, Johnson says her biggest symptom is fatigue. “Imagine if you had on five pairs of wet, heavy sweatpants all the time,” she says. “No amount of sleep is going to help.” She also deals with constant tingling and pins and needles in her limbs. “It changes: Some days are better than others,” she says.
“There are many times I have to say ‘no’ because I’m too tired or because my legs or hands hurt,” Johnson continues. “I’m a busy person by nature, but it’s harder to do things with MS, and people don’t always see that.”
It’s hard to know how many people with MS struggle with invisible symptoms like Johnson, Kathleen Costello, a certified registered nurse practitioner and associate vice president of healthcare access for the National Multiple Sclerosis Society, tells Yahoo Lifestyle. “Oftentimes, people don’t do anything about their symptoms because they’re invisible,” Costello says. “They may not even talk to their doctor about it until they have something that isn’t so invisible.”
Invisible symptoms can also be an issue when it comes to helping someone get an early diagnosis, Costello says. Blurred vision, for example, can be written off as an issue with a contacts prescription. Fatigue, which occurs in about 90 percent of MS patients, may be chalked up to not getting enough sleep or stress, she says.
Some of the other invisible symptoms of MS can cause work and social issues for people. Cognitive changes, which happen in about 65 percent of patients, can make it difficult for people with MS to remember things and to pay attention when they need to, Costello says. Pain can cause restless sleep, which can make attention problems worse. And bladder and bowel issues can leave someone in even more discomfort, she says.
If you’re having any of these symptoms, Costello says it’s just as important to talk to your doctor about them as if you were experiencing some of the more visible signs of MS, such as gait issues.
And, if you happen to know someone with MS, Johnson says it’s important to remember that just because they seem fine doesn’t mean they are. “Having a hard day is not always visible,” she says. “I may not have symptoms you can see, but I’m not always okay.”
Read more from Yahoo Lifestyle:
The MS symptom that's the worst for this teen: 'just loneliness'
Mom shares what it’s like to parent with a chronic disease: ‘I don’t want that to be my identity’
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