Multiple Sclerosis does not discriminate. It doesn’t care if you are a male or female. It doesn’t care what race you are. While MS doesn’t discriminate against gender or race, it most typically presents in adults in their late twenties to early forties. As an adult, receiving a diagnosis of Multiple Sclerosis can be devastating. It can put your career or relationships in jeopardy. For most of us, MS is a very isolating disease.
Now imagine being diagnosed with MS as a teenager. Life as a teenager is about growing, changing, maturing, discovering yourself and hopefully having fun along the way. As teenagers we dream of the day we get our driver’s license, who we will take to prom or where we will be going to college. If you are teenager with MS, however, your high school days are spent in and out of doctor’s appointments, staying home from school due to another flare up, social isolation and potentially missing out on all the dreams and milestones that you dreamt about when you were younger.
This was the case Shawne Te’ Thompson. Now twenty, Shawne Te was diagnosed when she was just fourteen years old. During a time when teenagers typically have endless energy, Shawne Te’ was feeling worn out, fatigued and suffering from considerable pain. Her symptoms started during an especially hot summer, so her family passed her fatigue off with the heat and humidity. Then one day, she was unable to move her legs to get out of bed, so she called for her dad. Her dad, who has MS himself, was now faced with his worst nightmare: his little girl might have MS.
Her dad took her to the family doctor who ordered MRI studies. The studies revealed lesions on her brain. Further studies confirmed her dad’s worst nightmare and Shawne Te’ was diagnosed with Multiple Sclerosis the summer before she started her freshman year of high school.
I recently interviewed Shawne Te’ and asked her to share her story in order to give a voice to the teenagers out there who are living with MS. Here is our conversation:
MC: How did your MS diagnosis affect your high school experience?
ST: I remember the feeling I had to have a meeting with my teachers EVERY year so my teachers would know that I had Multiple Sclerosis. Trying to explain to them what exactly what MS was not only embarrassing but frustrating as well. I did not want to tell people about my MS, as I feared judgment from the other kids. (The school made accommodations for Shawne Te’, but those accommodations made her feel isolated, different from the kids in her class.) I had to sit near the front because I had trouble seeing the board. They made me take breaks during class to move around where the other kids did not. What made it worse was during test days I had to go to a different room to test. Talk about embarrassing! It made me feel different. Which is NOT what I wanted!
MC: I can imagine how hard it would be to feel different in school, when all any teenager wants is to fit in. What impact did this have on your social life in high school?
ST: I did not let people know I had MS even if they were someone I was dating at the time. Before the start of 11th grade, I had moved to FL to live with mom and stepdad. Not only was I battling MS but I was facing another school, which meant I had to start all over again. The gaining new friends was the hardest! Throughout my high school years my friends would want me to go out to the movies or simply just come and hang out and I would reject them. Not because I did not want to go but because of my MS. I had to take shots every other day and was embarrassed to do that with my friends around. If I went on a band trip, my shots would come with me. I didn’t want to talk about it. I just wanted to lie in my bed and do nothing. I pushed everyone away.
Despite the MS issues, Shawne Te’ was able to graduate with her high school diploma in 2012. While she was able to graduate, her MS continues to progress. Today, she is unable to work or go to college. She plans on getting there one day, but a recent MRI revealed a black hole. According to Healthline, “MRI with contrast dye can highlight disease activity by showing the inflammation of active lesions. Active lesions are those that are new or getting bigger. The contrast images also show areas of permanent damage called “black holes.”
These black holes caused permanent damage and now a lesion on Shawne Te’s brain stem is causing silent seizures. Due to the seizures, she is unable to drive. She continues to suffer with other MS symptoms like memory, balance and speech issues.
MC: What has been the greatest struggle to deal with as a teenager/young adult with a chronic illness?
ST: It makes me feel BAD that my momma has to help me time to time and I am only 20. Makes me feel like a burden even though I know I AM not. I just feel like I should help her and her not help me. Trust me I have cried many times about this. Sometimes as a young person having MS is very overwhelming compared to having MS as adult. Once you’re an adult, your done with high school, college, getting married, having kids. BUT having MS when you’re my age, don’t know if you’ll get a chance to do all those things.”
Given the progressive nature of her disease, it would be easy for Shawne Te’ to give up, but she is not about to do that. I was moved during our interview of how positive she stayed despite her circumstances.
ST: It has taken me about 6 years to really come to terms with having MS at my age. I guess you can say you never know how blessed you are with the life you have till it is gone. I do suppose one way how I have overcome so much is trying to surround myself with positive people and try to keep a strong mind set. The main thing that has helped me overcome stuff is actually getting out of my comfort zone and talking about MS and not being afraid to say I have MS. I tell you, without a support system or having people even adults come to me and say something like” your such a fighter, God has a plan for you, you never give up,” gives me hope to keep going on.
As I listened to Shawne Te’s experience, I thought of my own two boys. Being a parent with MS is tough, but imagining my boys going through what I went though is one of my biggest fears. Talking to Shawne Te’, I was inspired that even if you are dealing with a devastating diagnosis at a young age there is hope. She is a very special young woman who continues the fight everyday. Even as an adult, I learned a lot from Shawne Te’s story.
Although she has problems with balance and walking, she is taking part in the Pensacola MS Walk. Please visit her page to support her on her courageous journey and help her continue to inspire others with her story of perseverance and determination in overcoming this devastating disease.
Visit Shawne Te’ MS Walk page: http://main.nationalmssociety.org/site/TR?px=12802760&fr_id=23248&pg=personal