Being transparent about my MS

Written by Mariska Berland, as told by Camille Noy Pagan

I was diagnosed with multiple sclerosis in 2002, but had symptoms for at least 3 years before that. I’m 45 now, but I was only 27 at the time. Most of my symptoms, such as numbness of fingers or feet, did not last long and were easy to get rid of. But that year, I felt strange pins and needles in my left thigh, which my doctor thought was my zoster.

She then moved to Washington, D.C. to work as a video producer and freelance event producer. Soon after I arrived, my vision became strange. I couldn’t really focus, and after a few days, I realized that every time I looked to the left I was seeing weakness. I went to see an ophthalmologist, who frankly told me that I had MS. When she began to cry, she said in a rude voice, “This is not fatal.”

It was devastating. But I went to see another doctor, a neuro-ophthalmologist who was really cool. She told me, “Listen, Mariska, I see a lot of people with multiple sclerosis, and the vast majority of them are still walking years and years after their diagnosis.” As a young woman, that’s exactly what I needed to hear. The loss of mobility was my biggest fear, and I knew it was time to take action and do everything in my power to prevent this from happening. A neuro-ophthalmologist referred me to Georgetown, where I was diagnosed with relapsing-remitting multiple sclerosis (RRMS).

It wasn’t easy being open at first. I was interviewing for a job after I was diagnosed, and I really needed better insurance than I had at the time. I remember asking the owner of the business specifically what insurance they offered so I could see if the MS medication my doctor wanted me to take was on that plan. “Well, I can’t ask you about your health,” said the business owner, “but I just want to make sure we don’t buy a lame horse.” He couldn’t legally ask me that, but I needed insurance, so I was quiet about my MS afterwards.

Outside of that, it was easier to be open about what I was experiencing. I had obvious bruising from the medications I was taking. I wasn’t drinking when I went out with friends either. It always seemed easier to me to say why.

What was most difficult for me, at least right after my diagnosis, was being around other people with MS. I didn’t want to hear or notice their symptoms. I guess I was afraid, deep down, that I would have the same problems they were. That will change for me soon enough.

After my diagnosis, I started practicing yoga right away. I read that it is good for MS, and I felt better once I started doing it. At the time, doctors told you not to push yourself or exercise too hard because it made your MS worse. Now we know that’s not true. Of course, you have to be careful about what you do. But regular exercise can help control and even avoid some symptoms. It’s okay to pay yourself.

Even today, many doctors do not talk about the role of exercise in preventing symptoms associated with multiple sclerosis and disability. Very few people with MS get physical therapy. If they do, it is usually short and simple. Exercise is not a magic bullet. But by working on balance and strength over time, you can make a difference in symptoms like leg weakness, foot drop, balance problems, and more.

I call myself a reluctant defender. I’ve gone from not wanting to be around people with MS to knowing hundreds of them. My life’s work helps people with neurological disabilities.

Mariska Berland, a nationally certified Pilates teacher, is co-owner of TheNeuroStudio.com and researcher and creator of Pilates for Neurological Conditions.