What it’s like to be diagnosed with MS at 23 years old: ‘I don’t want people to feel bad for me'

Six years ago, artist Brooke Pelczynski was diagnosed with multiple sclerosis, a chronic and debilitating disease by which a person’s immune system attacks the protective covering of their nerves. Before her diagnosis, Pelczynski had been writing off her symptoms — until finally, she couldn’t ignore them anymore.

“I was living that art school life,” she tells Yahoo Lifestyle. “I was partying, going out late, staying up all night doing work…and then I started to become very clumsy.” Pelczynski says she had always been a little clumsy, but suddenly it was more noticeable. Still, she didn’t think much of it.

Pelczynski moved into her first apartment, which she says was “hot as hell,” and she started having difficulty sleeping. What she didn’t realize is that heat — even just a slight elevation in core body temperature — can worsen MS symptoms, according to the National Multiple Sclerosis Society. “I started to lose feeling in my hands and arms, but I was ignoring it,” she says. Pelczynski chalked up her symptoms to not eating enough or partying a little too hard. “My eyes are a little fuzzy but…ignore that! Like, there’s a cat hair in my eye, whatever,” she recalls thinking. “My legs would feel funny and I would ignore that.”

But finally, she had a symptom she couldn’t ignore: She couldn’t walk. “I physically tried to take a step and I couldn’t and I fell,” she says. After that, her parents insisted that she see a doctor, but even that wasn’t seamless.

Pelczynski says the first doctor “blew me off” and attributed her symptoms to carpal tunnel syndrome. The second doctor told her she had cancer and wanted to perform surgery to find out what was going on (Pelczynski refused). Finally, she went to see her primary care physician.

“I explained that when I look at my feet, I feel like I’ve been zapped by lightning,” she says. “This is happening several times a day and it’s not pleasant and I think that this is a big deal.” She was referred to a neurologist, and given an MRI. “That’s when they told me that I have MS,” says Pelczynski, who was 23 years old at the time.

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Well, sold my first painting 🙌

A post shared by Brooke Pelczynski (@brookepelczynski) on May 12, 2018 at 1:48pm PDT

She remembers thinking, “Wow, I’m going to die, I’m going to be in a wheelchair, and live with my mom for the rest of my life.” She says she was “heartbroken” about how her disease might impact her art. “I’m an artist and my hands aren’t working the way they used to,” she says. “I was terrified that I wouldn’t be able to paint any longer or to draw, hold a brush, or do anything.”

But she says her neurologist helped her see that just because she was diagnosed with MS didn’t mean she couldn’t continue to live her life.

“I pulled myself out of the sad situation,” she says. “I don’t want people to feel bad for me all the time.” Pelczynski decided she was going to finish college and push herself forward. “I have to take care of myself because nobody is going to do that for me.”

One of Pelczynski’s MS-related cartoons for <a href="https://multiplesclerosis.net/living-with-ms/hug/" rel="sponsored" target="_blank" data-ylk="slk:MultipleSclerosis.net.;elm:context_link;itc:0" class="link ">MultipleSclerosis.net.</a> (Image courtesy of <a href="http://Multiplesclerosis.net" rel="sponsored" target="_blank" data-ylk="slk:MultipleSclerosis.net;elm:context_link;itc:0" class="link ">MultipleSclerosis.net</a>; illustrated by Brooke Pelzynski)
One of Pelczynski’s MS-related cartoons for MultipleSclerosis.net. (Image courtesy of MultipleSclerosis.net; illustrated by Brooke Pelzynski)

Now, Pelczynski says she’s often exhausted, and that her legs hurt “all the time.” She also doesn’t have feeling from her fingertips to her elbow in her right arm (her dominant arm). “It was difficult learning to adapt to that,” she says.

She now can no longer paint small spaces with just her hands and has had to modify her art because of her limitations. “I’m making work that makes sense to me and to my life and my diagnosis,” she says. “My work has become more abstract because of that.”

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I really like the way this one came out 🙌

A post shared by Brooke Pelczynski (@brookepelczynski) on Aug 1, 2018 at 5:34pm PDT

Ultimately, Pelczynski says that her work is now “more abstract and more beautiful than it used to be, and I think that has made me a better artist.”

Pelczynski wants people to know that she’s okay, despite her diagnosis. “I am still walking. I am still painting. I am still going out with my friends, and I am still living my life,” she says. “Because I’m aware that my MS could progress to being in a wheelchair and being unable to do certain things, I live every day to the fullest.”

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