When you live with a complex condition like multiple sclerosis (MS), there are a lot of misconceptions that can come along with it.
For example, many think people with MS are old, disabled, and end up in a wheelchair. That’s not entirely true. MS usually starts between ages 20 and 40. And while it may worsen over time, it looks different for different people.
MS symptoms can range from mild to severe. They may flare up now and then or last for long periods of time. Some symptoms are visible while others may not be obvious. If you have MS, this can make it hard for those around you to understand what you’re dealing with.
“MS is a very unpredictable disease. [It] can change from minute to minute. One minute you’re feeling great, and then 5 minutes later, you’re too fatigued to even get up and go to the bathroom,” says Daana Townsend, a 40-year-old educator from Milwaukee, WI.
Doctors still don’t know exactly what causes or worsens MS. Although there’s no cure, treatments can slow the worsening of the conditions for some.
The uncertain nature of this chronic illness can take a toll on the day-to-day lives of people with MS. Explaining how they feel can be both difficult and exhausting. Here’s what they might want you to know.
MS affects each person differently.
MS is an autoimmune disease in which the body attacks the central nervous system. This may block or slow down the communication between your brain and spine with the rest of the body. You can have numbness and tingling, balance problems, dizziness, vision issues, fatigue, or other things including problems with sex or your bladder and bowel.
“I was very lucky to be diagnosed rather quickly after my first very obvious flare-up,” says Jenna Green, a 36-year-old MS advocate from Boston who was diagnosed in November 2015. She says that after an emergency room doctor missed her optic neuritis, a vision problem and an MS symptom in which you can have pain and blurriness in one eye, she saw a neurologist for a second opinion.
An MRI confirmed relapsing-remitting MS. It’s the most common type, with flare-ups that can come and go. It can last for a few days or even weeks. In between attacks, you may have mild or no symptoms.
Garvis Leak, who was also diagnosed in November 2015, says his MS symptoms started with back problems 4 years after he retired from the Air Force.
“I was sent to a neurosurgeon for the back pain. She told me point-blank, ‘Mr. Leak, yeah you have back problems, but you also have MS.’ Then she showed me lesions on my spine and neck,” says Leak, an entrepreneur from Dayton, OH.
Leak went to the local Veterans Affairs clinic and was referred to a neurologist who confirmed it. Like Green, he sought a second opinion from a neurologist from a VA in Cleveland, OH. This time, he found a more specific answer.
“He took a look at my MRI and said, ‘Yes, Mr. Leak, you have primary progressive MS,’” Leak says. This type is less common. It can make your symptoms steadily worsen over time. For Leak, who had been physically active all his life, the diagnosis felt it “was like a hit in the gut.”
Coming to terms with your diagnosis can feel like grieving.
Green recalls being a healthy 31-year-old in “the best shape of her life.” The MS diagnosis felt like the rug was pulled from underneath her. It took her a long time to tell people not in her immediate family.
“It was very perplexing. It’s a lot of emotions,” she says. “It causes a lot of grief. You don’t realize it at the time.” It took her a while to take it in. She saw a therapist who told her that grieving is a process. Green resisted that at first. “She was right.”
Even if you “look good,” you can still feel unwell.
“I found that friends, close friends, and family — even my parents — they say that they understand, and they really don’t.
“I have gone through periods of not feeling so well internally. But on the outside, I may seem fine. They say, ‘Oh, you look so good.’ And that is something that is said often to people who have MS,” says Dawn Morgan, 45-year-old teacher from Washington, DC, who was diagnosed nearly 20 years ago.
MS symptoms like fatigue, spasms in the limbs, or general lack of energy may be seen by others but still take a toll. It hurts when friends or family dismiss her symptoms and think she’s “flaking” or “not taking the relationship seriously,” Morgan says.
As Green puts it, “Don’t make someone with MS feel like they have to justify their disease to you.”
MS fatigue is very real.
“Fatigue is terrible, and so despite doing everything in my power to try and go to, say, a fun event with my friends, I come to that day and I just physically — I can’t do it,” Green says. “I’m used to that disappointment. It sucks.”
Fatigue is one of the most common symptoms. It affects as many as 80% of people with MS, according to the National Multiple Sclerosis Society. Why it happens isn’t clear, but it can hamper your daily routine.
Relationships are hard to navigate, but communication is key.
While MS can sap you physically and mentally, its impact also extends to near and dear ones.
For partners, “it’s difficult in different ways,” Green says. “They’re not feeling what you’re feeling and they want to support you, but there’s no handbook for this.”
What’s harder is feeling like you’re letting someone down all the time, Townsend says. “Even though, for the most part, my friends and family haven’t made me feel like this, it makes you feel like a burden. You feel like you’re ruining everybody else’s fun plans.”
Open communication and reassurance can go a long way. “I think that it’s important to always reassure them that they’re not a burden,” Townsend says. “Reassure me that you see me.”
Keep clear lines of communication with your family, Leak says. “You’re going to need to lean on them when you get a diagnosis and to help you get through those difficult days. You just have to be honest with them.”
You may need accommodations at work.
Morgan says that she used to teach at a college but the demands became too much for her to handle.
“They didn’t understand the accommodations, for example, bladder and bowel issues — I’ve had accidents teaching in the classroom and you just can’t help it,” Morgan says. If you have MS, it’s common to use the bathroom more frequently or even lose control at times.
“I would love, love for co-workers to understand I need accommodations. This is not easy,” Morgan says. “What I would wish for employers to understand that sometimes, I’m not ready for a meeting — I don’t want to talk. I don’t because I’m tired.”
Now, Morgan works from home. For her, given her unpredictable MS symptoms, this feels like the ideal situation.
The Americans with Disabilities Act allows for reasonable accommodations in the workplace. You may need to work with your supervisor and HR office on that if you have MS.
Social events need a lot of pre-planning.
Some people with MS live symptom-free for long periods of time. Others with severe MS symptoms may need special accommodations just to go out to a restaurant, especially if they have physical limitations.
“If we’re going somewhere that doesn’t have an elevator [and] has a bunch of stairs, that’s not going to work for me,” Townsend says. “It’s really about being conscious of those things.”
It’s OK to use mobility aids.
With MS, it’s common to have balance or movement issues. Mobility aids can help you stay independent, adapt, and get around.
“If you do use a cane or need to use a wheelchair, or you’re using the scooter at Target or Costco or whatever, that is nothing to be ashamed of. Mobility aids are made to help you live a better life,” Green says.
“I think everyone I know that currently uses the mobility aid can say that they waited too long to use it.”
“We have to also normalize the use of mobility aids and quiet [the] judgmental stares,” Morgan says.
We may see it differently.
While some days you may feel good, bad days are equally real. Finding a silver lining in all of the unpredictability MS brings may or may not happen. And that’s OK.
For sure, no one wants to get MS. Townsend says there’s no upside and she wouldn’t wish the “horrible disease” on her worst enemy.
But Morgan says that while MS can feel all-consuming, she has found comfort by getting close to the MS community. “I love feeling connected to other people that I can pick up the phone or a text or go on social media and say, ‘Hey, I’m just not feeling well.’”
“This is something that I have, but it is not something that will control me. So with that, I take a positive approach to what I do and go from there,” Leak says.