What People With MS Wish You Knew
When you live with a complex disease like multiple sclerosis (MS), there are many misconceptions that can accompany it. For example, many believe that people with MS are elderly, disabled and in wheelchairs. This is not entirely true. MS usually starts between the ages of 20 and 40. And although it can get worse over time, it looks different in different people.
Symptoms of MS can range from mild to severe. They can flare up every now and then or last for long periods of time. Some symptoms are visible while others may not be obvious. If you have MS, those around you may have trouble understanding what you are dealing with.
“MS is a very unpredictable disease. [It] can change from minute to minute. One minute you feel good, then 5 minutes later you are too tired to even get up and use 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 is no cure, treatments can slow the worsening of conditions for some.
The uncertain nature of this chronic disease can have a negative impact on the daily lives of people with MS. Explaining how they are feeling can be both difficult and exhausting. Here’s what they might want you to know.
MS affects everyone differently.
MS is an autoimmune disease in which the body attacks the central nervous system. This can block or slow down the communication between your brain and your spine with the rest of the body. It can be difficult to diagnose because MS has many symptoms, but not everyone has them all. You may have numbness and tingling, balance problems, dizziness, vision problems, fatigue, or other things including problems with sex or with your bladder and bowels.
“I was very lucky to be diagnosed quite 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 afterwards that an emergency room doctor missed her optic neuritis, a vision problem and symptom of MS in which you may feel pain and blurring in one eye, she went to a neurologist for a second opinion.
An MRI confirmed relapsing-remitting MS. This is the most common type, with flare-ups that can come and go. This can last a few days or even several weeks. 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 retiring from the Air Force.
“I was sent to a neurosurgeon for back pain. She told me point blank: “Mr. Leak, yes 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.
The 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 precise 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. This can gradually worsen your symptoms over time. For Leak, who had been physically active all his life, the diagnosis felt it was “like a blow in the gut.”
Accepting your diagnosis can feel like grieving.
Green recalls being a healthy 31 year old woman in “the best shape of her life.” The diagnosis of MS made it look like the carpet had been pulled from under her. It took a long time for her to talk to people outside her immediate family.
“It was very confusing. It’s a lot of emotions, ”she said. “It causes a lot of grief. You don’t realize it at the time. It took him a while to figure it out. She saw a therapist who told her that grieving is a process. Green resisted this at first. “She was right.”
Even if you “look good,” you can still feel bad.
“I have found that friends, close friends and family – even my parents – say they understand, and they really don’t. I went through times when I didn’t feel so good internally. But on the outside, I can look good. They say, “Oh, you are so beautiful”. And that’s something people with MS are often told, ”says Dawn Morgan, a 45-year-old teacher in Washington, DC, who was diagnosed almost 20 years ago.
Symptoms of MS like fatigue, limb spasms, or general lack of energy can be seen by other people, but continue to take their toll. It hurts when friends or family dismiss her symptoms and think she is “chipping” or “not taking the relationship seriously,” Morgan says.
As Green says, “Don’t make someone with MS feel like they have to justify their illness to you.”
MS-related fatigue is real.
“The fatigue is terrible, and so, despite everything in my power to try to go, say, to a fun event with my friends, I come on this day and I can’t do it physically,” Green said. “I’m used to this disappointment. It sucks.
Fatigue is one of the most common symptoms. It affects up to 80% of people with MS, according to the National Multiple Sclerosis Society. Why this happens is not clear, but it can interfere with your daily routine.
Relationships are difficult to navigate, but communication is essential.
Although MS can undermine you both physically and mentally, its impact also extends to those near and dear to you.
For the partners, “it’s difficult in different ways,” says Green. “They don’t feel what you are feeling and they want to support you, but there is no manual for that.”
What’s more difficult is letting someone down all the time, Townsend says. “Even though for the most part my friends and family haven’t made me feel that way, you feel like a burden. You feel like you’re ruining everyone’s fun plans.
Open communication and confidence can go a long way. “I think 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, says Leak. “You’re going to have to lean on them when you are diagnosed and to help you through these difficult days. You just have to be honest with them.
You may need accommodation at work.
Morgan says she used to teach at a university but the demands have grown too heavy for her.
“They didn’t understand accommodations, for example, bladder and bowel issues – I’ve had accidents teaching in class and you just can’t help yourself,” Morgan says. If you have MS it is common to use the bathroom more frequently or even sometimes lose control.
“I would love, I would like my colleagues to understand that I need accommodation. It’s not easy, ”Morgan says. “What I wish employers would understand is that sometimes I’m not ready for a meeting – I don’t want to talk. I don’t do it because I’m tired.
Now Morgan works from home. For her, given her unpredictable symptoms of MS, this seems 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 the human resources office on this if you have MS.
Social events require a lot of pre-planning.
Some people with MS live without symptoms for long periods of time. Other people with severe symptoms of MS may need special accommodations just to eat out, especially if they have physical limitations.
“If we go to a place without an elevator [and] has a bunch of stairs, that won’t work for me, ”Townsend says. “It’s really about being aware of these things.”
It is normal to use mobility aids.
With MS, it’s common to have problems with balance or movement. Mobility aids can help you stay independent, adapt and get around. Some people find it difficult to overcome the negative stigma of using these aids.
“If you use a cane or have to use a wheelchair, or if you use the scooter at Target or Costco or whatever, it’s nothing to be ashamed of. Mobility aids are designed to help you live a better life, ”says Green. “I think anyone I know who currently uses mobility aid can say they waited too long to use it.”
“We also need to standardize the use of mobility aids and [the] judgmental looks, ”Morgan says.
We can see it differently.
If some days make you feel good, bad days are just as real. Finding a ray of hope in all the unpredictability that MS brings may or may not happen. And it’s okay.
Of course, no one wants to get MS. Townsend says there is no benefit and that she wouldn’t wish “horrible disease” on her worst enemy.
But Morgan says that although MS can seem exhausting, she has found solace in connecting with the MS community. “I love feeling connected with other people so that I can pick up the phone or text or go to social media and say, ‘Hey, I’m just not feeling well.’”
“It’s something I have, but it’s not something that will control me. So with that, I take a positive approach to what I’m doing and go from there, ”Leak says.
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