Life with MS

Little Victories Help to Cope With Drawbacks

By Isela Zepeda

Hi, my name is Isela Zepeda. I’m a 16-year-old girl and I have multiple sclerosis. I remember the day I was diagnosed like it was yesterday: it was December 3 and I was 14. I was at a children's hospital going over my MRI results and I was told I had to be hospitalized. It wasn't until that night I was told I have MS. After I was told I have an autoimmune disease, I did the only logical thing I could think of: I freaked out.

The suckiest thing about being young and having MS is it takes so long just to get diagnosed because it isn’t common in younger people. Doctors will diagnose you with so many other things before MS is even on the board. Personally, I’ve been having some of my most recurring symptoms since I was nine but, because I was little, it was overlooked. The only reason I even got the MRI was because my optometrist saw a downwards astigmatism in my eyes. That is very unusual so she requested I get an MRI.

Students and Teachers

I knew being 14 with a lifelong disease that isn’t common in people my age would be hard, but I guess I never took into account how ignorant people would be. One time my legs really weren't working so I had to be in a wheelchair at school. But because the previous day I was fine and I didn’t have a cast or anything, the judgement and snide remarks instantly came rolling in. I had people telling me I was faking and I just wanted attention; but because I wasn’t comfortable with the fact that I have MS, I said nothing.

I guess part of me expected that from people my age, but one thing I never thought would happen is getting that from a teacher. One day in school I stepped out because I was having a hard time breathing. I was dealing with a MS hug and the masks really didn’t help. When I got outside and sat down my vision started going out and my legs went numb. Once my vision came back and I could feel my legs about half an hour had gone by. When I went back, my teacher was yelling at me for skipping class, and I tried to explain what happened. My mom emailed him about the situation and finally he understood.

Drawbacks of an invisible disease

That is, honestly, what sucks the most (aside from symptoms and treatments) about being a teen with an ‘invisible disease’ – people don’t always take you seriously because physically you look fine. After those two experiences, my perspective definitely changed in a negative way. My life has changed so, so, so much in the past year-and-a-half with figuring out how to cope with MS and read the cues my body gives me. One thing I’ve noticed for me is it gets really hard to describe my symptoms. With being a teen and having MS, there is so much I want to do but, because of my MS, things such as sports are out of the question – my symptoms are really unpredictable at times.

Also, I have a hard time keeping up with my peers with certain things. It really frustrates me because at times it feels like I got part of my freedom taken when I was diagnosed. For me at least, it was like I got a metaphorical gift basket from the mystical MS man and in it were all of the drawbacks that came with MS. One of the main drawbacks I have is losing feeling in my legs and then losing strength too. When that happens, my favorite thing and, honestly the most empowering thing, is when you are finally able to do something you couldn’t do for a while.

My balance and my legs were largely affected and I remember the day I was finally able to stand on one foot again. I was unloading the dishwasher and listening to music and I just wanted to see if I could stand on one foot. When I did it I broke down crying and FaceTimed a bunch of people to show them. That day really taught me that, yeah, it's hard but the little victories are the ones that are honestly the most important. I still have those random moments when I’m terrified and I don’t know if that will ever go away.

Who is on your team?

Another thing the past year-and-a-half taught me is that sometimes it takes something like being diagnosed with a lifelong illness to realize who will always be there for you and who will always be on your team cheering you on. Some people have left my life with the excuse that my having MS is too much for them to handle, but other relationships and especially friendships have gotten way stronger. For example, one of my friends dyed half of her hair orange to remind me that even though she doesn’t know what I’m going through she will always be there for me.

My mom, dad, and older brother are all getting tattoos for me and other friends and family support me in so many other ways. This has been easily the biggest obstacle in my life but a group called Oscar the Monkey has been helping me so much. The group is a MS group for kids, teens, and young adults with MS. This group has made me feel less alone and find a sense of community. I’ve only met one of the people in the group and we are really close now, but I feel like I’ve known all of them forever.

We bond over the stupidest things, such as when one of us forgets a simple word, or our weirdest symptom. I love that we are all so different but we all have a sense of family within the group. One major thing that the group taught me is that it's okay to embrace having MS and to not be embarrassed of a part of you. I’m still figuring out how to cope with MS and I think it might always be a big challenge for me. But that just pushes me to work harder on the things that I love. In my future I see myself being a big part of the MS community and I really want to speak more about my experiences with MS.