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What I Wish People Knew About Being a Young Adult with Multiple Sclerosis

A 25-year-old nurse with multiple sclerosis reflects on her unexpected diagnosis, how she’s learned to cope and how people can be supportive of others’ health journeys.

I was diagnosed with multiple sclerosis (MS) two years ago, when I was 23, and it impacts my life every single day. To live with MS is to live in a constant state of fear for the future. I’ve had to figure out how to cope and prioritize my health throughout this uphill journey.  

How It Started  

At the beginning of the pandemic, I awoke from an overnight shift as a nurse with a weird symptom I had never experienced. When I checked my phone – like most of us do first thing in the morning – I could hardly make out what the screen said. It was blurry unless I closed one eye.  

I thought maybe this would go away and I could wait it out, but it kept getting worse. I decided to go to the emergency room of Wills Eye Hospital. Due to the pandemic, not only was I nervous and scared, but alone.  

They checked every part of my eye, hoping that it would help them figure out what was causing my double vision, but everything seemed fine. When they ordered an MRI, I knew it was going to be much more serious. Being in the healthcare profession, I knew that ordering an MRI was a big deal. 

“Please don’t be a brain tumor,” echoed through my head, but my MS diagnosis came quickly. Two brain lesions indicating MS were found. It’s hard to explain how upset I was. My mind immediately tried to remember any little thing I could about MS from nursing school.  

After that, came the “why me?” What did I do to deserve this? The only thing that brought me solace in the next few days was the thought, “if not me, then who?” Surely, I would not wish this on anyone else.  

If it weren’t for the COVID surge, I would have been admitted for IV steroids. Instead, I was sent home to take more than a dozen pills morning and night. Thankfully, my symptoms resolved; however, symptoms do not always fully improve after a flare-up. This didn’t make coping with the diagnosis any easier.  

Shortly after, I met with Dr. Dhanashri Miskin, a neurologist who specializes in MS treatment through Jefferson’s Comprehensive Multiple Sclerosis Center. They ran a few more tests to confirm the diagnosis and find the best treatment path. A lumbar puncture revealed I had oligoclonal bands, which are proteins commonly found in the spinal fluid of those with MS.  

Because my initial symptoms were considered mild, I was able to start on a lower “tier,” or less intense immunosuppressant medication. I take one pill daily, and I’ve been flare-free for two years.  

Physically, I currently feel great. Navigating this diagnosis emotionally has been a whole different story. Here’s what I wish everyone knew about living with MS:  

stephanie, an MS patient and her dog

Stephanie and her dog, Buddy.

Grief and anxiety are normal after this kind of diagnosis.  

Being diagnosed with MS – or any chronic, progressive illness for that matter – triggers a period of grief. For me, I wasn’t just facing an illness. I was facing a future different than I had ever imagined.  

When you have MS, you may “look fine” and walk around with minimal symptoms, leading a relatively normal life. However, before you know it, you could be bedbound and require intensive care. Even if you manage it as well as you possibly can, it’s still generally out of your control.  

One thing that hit me the hardest was understanding that I could never spontaneously get pregnant. Growing up, you see people spontaneously getting pregnant and rejoicing, but with most MS medications, you’re unable to get pregnant or breastfeed. The medication I am on takes a “wash-out” period, or a designated amount of time not taking it, to even be able to attempt it. Now, I can never experience that spontaneous, joyful moment. It’s just something I can only watch in movies or in the lives of others.  

Just because I look fine doesn’t mean I feel fine.  

I’ve only had one flare-up, but there’s always a possibility of more. Even just having one in the wrong location could be devastating. I often feel like my MS is minimized because I don’t have visible symptoms. People can’t see it, so they brush it off.  Some people think I should feel great, which makes me doubt the severity of what my own body is going through.  

Not knowing when a flare-up could occur has worsened my anxiety. At any moment, my world could change. Going on vacations and being out of town is anxiety-provoking. What if I were to get a flare-up? What would I do? Where would I go in a foreign country? Would they know how to treat me? 

multiple sclerosis patient, Stephanie with her friend, Alexis

Stephanie with her friend Alexis.

Being present is so much more helpful than trying to give advice.   

If you’re wondering how you can help someone with MS, the answer is simple: be present.  

While it’s not intentional, advice can be more hurtful than helpful. I don’t want to hear about someone else with MS who is doing “great.” They are not me. Every single person with MS is different. That is why some call it the “snowflake disease.” 

Most people, understandably, don’t know what to say to someone who is grieving. Some people completely step away. This is the worst thing to do.  

Try to check in on your friend or your loved one. Ask them how they’re feeling. I think there’s this taboo that we can’t ask people about issues they have, but when you do, it shows how much you care. If they don’t want to talk about it, just have a normal conversation or share stories to help take their minds off things.  

My health must come first.  

It’s hard being a young adult with MS because most people my age don’t think about their long-term health. I’m no longer the “fun friend” who wants to go out and drink all the time. I tire more easily since my diagnosis and drinking too much or not getting enough sleep could trigger a flare-up.  

I have found that focusing on your health can sometimes force you to change your relationships and surround yourself with people who are willing to respect and support your lifestyle changes.  

Coping looks different for everyone, but it’s a must.  

I like to be in control of things. Most people do. Thankfully, I’ve found things to help me regain control amid this diagnosis.  

I’ve joined support groups and made friends my age, which has helped me tremendously. I have done a lot of research into evidence-based lifestyle changes for MS. I started exercising and hydrating more, and looked into different supplements.  

However, some things online you should take with a grain of salt. Some MS blogs are hyper-focused on diet and what you should cut. Personally, I like to add healthier foods to my diet to improve it, rather than deprive myself of things I sometimes crave. Of course, it’s smart to also discuss changes like this with your doctor.  

Last year’s MRI showed that my lesions had shrunk, which was incredibly affirming. It made me feel like all my efforts are making a difference.  

My biggest stress relief is probably Pilates. I try to go to classes weekly, to stay in shape, but also clear my mind. It’s not a high-impact workout, but I’m always sore the next day.  It reminds me my body is capable of hard things.  

I also recommend therapy to anyone struggling with a life-changing diagnosis. Being able to talk to someone who is unbiased – and not overwhelmingly positive – is a tremendous help.  

Stephanie, a young MS patient at a museum

Stephanie at a museum.

MS doesn’t just affect older adults; advocate for yourself.  

It’s a common misconception that MS only affects older people. It most commonly begins between the ages of 20 and 40, and it’s the most common neurological condition that young adults face. However, MS is not something me or my friends ever thought about before my diagnosis.  

I hope sharing my story helps people see that MS isn’t as rare as you might think, and it isn’t the only condition young adults are at risk for. There are so many small symptoms that go ignored when things could be diagnosed and treated much sooner.  

I follow up with Dr. Miskin every six months, and once a year, I have an MRI to check the progression of my lesions. Fortunately, there are tons of new treatment options, as so much research has evolved around MS in recent years. You’ve probably heard at least one commercial for an MS drug this past week without even realizing it.  

If you feel like something is wrong, talk to your doctor and advocate for yourself. I’ve seen too many stories where it’s hard for people to receive an actual diagnosis of MS because they aren’t taken seriously. I’m so grateful Jefferson took me seriously.  

Patient Perspectives