What It’s Like To Be Diagnosed With Multiple Sclerosis As A Young Woman

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What would you do if you were diagnosed with a potentially debilitating, chronic illness in your 20s or early 30s? Would you continue to date? Would you make some hard choices about having children? Would you change your entire career? Those are just some of the life choices considered by people who have been diagnosed with multiple sclerosis (MS) as young women. But others have found that their lives have barely changed at all.

MS is an autoimmune disease that damages the tissue around the brain and spinal cord, which is called myelin. In layman’s terms, the immune system of someone with MS starts to attack their own tissues. As myelin is destroyed and nerves are exposed, people with MS can experience symptoms ranging from balance problems to muscle spasms or weakness to numbness or tingling, among others. If not properly managed, MS can progress to the point where a person is no longer able to care for themself.

But with proper management — and especially if a person is diagnosed early — people can live long, healthy, largely unimpeded lives with MS. Dr. Ellen Lathi, who runs a large, private MS clinic in Massachusetts, tells Bustle that in the past, 60 to 70 percent of people with MS became disabled within the first 15 years of diagnosis.

“Now that’s not the case, as long as it’s treated from the beginning,” Dr. Lathi says. “We have a very good shot of keeping you free of disability in the long run.”

Hannah Barton/Bustle

Trish, 35, was diagnosed with MS in 2013. A travel nurse, she tells Bustle that her MS isn’t something she has to treat every day or even thinks about daily. Every six months, she flies back home to Ohio to get treatment (which consists of IV infusions), maintains an active lifestyle, tries to keep her stress levels down, and is getting better about asking for help.

“Day to day, I would say that my life looks a lot like it would if I didn’t have MS,” Trish says. “I’d say like 80 percent of the time.”

When it comes to telling potential romantic prospects about her MS, she says she tries to “gauge it depending on the person or the situation.” There have been a few times when she told a date about her MS and then didn’t hear back from them. But she doesn’t know if that’s because she shared her diagnosis or just because dating kind of sucks.

With an average age of diagnosis of 34 — and with two to three times as many women as men diagnosed with MS — family planning is another consideration for many people living with MS. Katie, 31, had been married for less than a year when she was diagnosed with MS. She started experiencing symptoms — including numbness in her leg and weakness in her thigh — but “didn’t think much of it” because they would come and go. “I felt like I was going crazy, to be honest with you,” Katie tells Bustle.

Kate and her then-new husband were talking about starting a family before she was diagnosed, but “those things got put on hold” as they adjusted to their new reality.

“I’ll admit that when I was first diagnosed, I wasn’t sure I wanted to have children,” Katie says. “Not for any negative reason — I just think I was scared in general.”

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Fear about fertility may be rooted in outdated ideas about what living with MS looks like. Dr. Lathi says that up until 1993, there were “no adequate treatments” for MS, and the majority of patients ended up with severe disability. Today, there are 15 FDA-approved treatments, ranging from self injections to periodic infusions at an IV center to pills people take at home. The goal of all of these treatments is to reduce relapses and neurological attacks in order to limit physical and neurological disabilities. And while there’s no cure for MS, Dr. Lathi views the ability to keep people neurologically healthy into old age a de-facto cure.

“If we’re stopping all the relapses and MRI activity, to me that’s curing MS,” Dr. Lathi says. “That’s different from a one-time vaccination that cures it, but if we’re stopping it and you’re free of disability, free of new attacks, with stable MRIs — that’s curing it today in 2019. You don’t fix or cure congestive heart failure or diabetes. These diseases are managed.”

Now that her disease is being managed, Katie says that she and her husband are starting to talk about about starting a family again. Because MS is believed to have both genetic and environmental triggers, Dr. Lathi says that the risk of Katie’s children having it is between three and five percent. And since current treatment can keep people healthy and active for a long lifetime, she sees “no reason not to attempt a pregnancy.” In fact, she says pregnant MS patients shouldn’t even be considered high risk pregnancies.

“We all carry risk for many things,” Dr. Lathi says. “There’s no one who’s free of risks.”

Hannah Barton/Bustle

Of course, not all risks in life are negative. Since her diagnosis and a relationship that ended about a year later, Trish has decided to focus on traveling and furthering her career.

“My priority right now is me,” Trish says. “I’m not willing to compromise anymore.”

All three of these women are sharing their stories and knowledge about MS to celebrate Progressive MS Day, which is on March 28. The goal of the day is to raise awareness about the disease, with one goal being an increased number of early diagnoses, like Katie and Trish received.

“Getting early treatment was one of the things that keeps me here now,” Trish says. “Being able to go out, go on dates, and sometimes forget that I have MS? I attribute that to getting diagnosed early.”