Life with MS

Don't Underestimate the Person with MS

By Kiana Parker

Hello. My name is Kiana Parker and I live in New York City. I am 18 years old and was diagnosed with multiple sclerosis at age 11. Looking back over the past seven years, I have been through a lot but I’ve learned a lot, especially about myself. The first symptom I had was double vision. I remember going to the ophthalmologist and he told my mother I should go right to the hospital emergency room for a MRI. Someone from the doctor’s office accompanied us to the emergency room and I was admitted.

I spent almost a week in the hospital, having brain MRIs, a spinal tap, a bunch of other tests, and seeing a lot of doctors. Honestly, I didn’t know how serious my condition was at that time. I just remember thinking, “Hooray, this means I won’t have to go to school.” (Not to mention, most adults I knew didn’t seem to know how to explain this to a child. Or they just didn’t want to.) It was only after I was diagnosed with MS and I needed to get injections that I began to realize the seriousness of my condition.

Having MS, I have gone through so many different emotions: depression, bitterness, fear, anxieties, and feeling alone sometimes. And then there are the physical symptoms. My symptoms consist primarily of nerve pain in my legs and arms, abdominal pain, headaches, and a lot of fatigue. MS can also affect you mentally.

School can be tough and relationships with friends change. While many of the teachers, other school staff, and administration were understanding, others not so much. They just couldn’t empathize or understand how difficult it can be having this condition and being in school at the same time. Besides the physical symptoms and different emotions, sometimes you lose focus and can’t concentrate. You realize you can’t do some things at the same pace as your peers: gym activities, completing all school assignments on time, and even walking.

Most MS symptoms are invisible, so I’m sure some people either forget I have MS or don’t believe I have an illness, or worse – that it’s being used as an excuse. For me it’s even harder because of the fact that I get good grades; they think MS doesn’t have a real effect on me. But it does: its symptoms are invisible to others but it’s always there for me, some days much worse than others.

Living with MS can be isolating. I didn’t know anyone from my school who had MS. When I was younger, there was no one my age I could really talk to. When I would attend some MS events, I would be the only young person there. I admit, it would annoy me sometimes when people confused MS with another illness or compared and contrasted them.

I’ve been told by many adults how they know someone with MS and how they have been cured or are functioning like a normal person. First of all, the person they know is an adult who wasn’t diagnosed with it as an adolescent and MS can be very different with the former as opposed to the latter. There’s no cure for MS, and I find something about their use of the words “normal” and “functioning” a bit unsettling.

Things started changing for me after my mom joined this Facebook group called PMSA and became friends with other moms of kids who have MS. Through this group she heard about Oscar the MS Monkey. This is an organization started by a young lady named Emily Blosberg who was diagnosed with MS at a young age too and found it isolating. She wanted to have a camp where other children with MS and their families from throughout the country could meet in person and connect. At Oscar the MS Monkey camps, I met other teens/kids who have multiple sclerosis (they live in Louisiana, Iowa, Michigan, Alabama, Colorado, Texas, and other parts of N.Y. like myself).

At these camps, families can also attend. We do regular camp activities but we also have group discussions; talk with doctors and others on different topics such as taking our medicines; dealing with school, friends, and parents; and being advocates for ourselves when communicating with doctors and teachers. I have remained friends with many from the camp and we talk and text each other throughout the year. Because of this, I definitely feel less isolated. Within a year of attending camp, they have become my second family.

Besides learning a lot about my condition, I have also learned that I am very resilient and I feel much more empathetic to the suffering of others around the world. Advice I would give to other adolescents newly diagnosed with multiple sclerosis: Yes, it can be scary at the beginning and you will feel depressed, but you will grow into having MS. What I mean is, while MS is a big part of you, it’s not all of you. (“I have MS, MS doesn’t have me!”)

You will learn to adapt and make adjustments in how you do different things. I also believe finding a good neurologist is important. Your doctor should be someone who you are comfortable speaking with and who listens to you. I have been seeing my neurologist, Dr. Wendy Vargas, since I was first diagnosed. She listens to me and is up-front with me.

Another reminder, don’t be afraid to ask for help if you need to see a therapist. It’s good to have someone to talk to about personal matters who’s not someone you already know. Also, join a support group such as Oscar the MS Monkey. It really helps. I wasn’t sure it would at first but I was very wrong. You get to talk with others who have something in common with you. After attending the MS camps, you go home feeling better.

Having MS does change your life but it’s not all negative and remember, you can still do a lot of things. Again, for some things you might need to make adjustments. You can still play sports, go to college, and travel.

My advice to parents of kids/teens newly diagnosed: it’s important to empathize with your child and what they are feeling but don’t push too much. We know you worry about us but we don’t want you to worry too much. We will be okay. While you shouldn’t underestimate the role MS can play in our lives, don’t underestimate us either. Don’t be too afraid to let us try new things. The worst thing you can do is pretend MS doesn’t exist at all.

I do agree with that saying “I have MS but MS doesn’t have me.” I will be attending college in the fall and will continue being an advocate for kids and teens who have MS. 

Fun fact: I wrote about my resilience here and to my surprise, I just received a plaque from my high school, “2021 Resilient Scholar Award.” But I’m not the one who deserves this title. All kids and teenagers with multiple sclerosis are resilient.