What Is It Like Growing Up With MS?

MultipleSclerosis.net illustration of a cartoon hand with a blue crayon coloring blue and black word balloons

Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.

To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”

More than 150 people responded. Here is some of what they shared.

School was not accommodating

Several community members shared that teachers and school leaders were not understanding. Students with MS may need extra accommodations, such as more time to walk between classes. They may also need more time to complete assignments if fatigue or other health issues arise before the due dates.

“The school district was not very accommodating, to the point I wrote a letter to sue them. I wanted them to accommodate my MS and to give my parents back the money they paid for a teacher the school never gave me. We won. My parents received their money back, and the school did finally accommodate my needs.”

“I would be late to class sometimes because my walking was impaired. I got detention for it.”

Grades slipped

Because of fatigue, physical pain, and other symptoms, MS can make schoolwork more difficult. It makes sense that finishing an assignment is hard when your hands are shaking or you hurt too much. It is OK to ask for help, such as more time to finish a paper.

I was diagnosed at 15. I tried pretending everything was fine, but my grades started to slip. I would get mad on the days my hands were too shaky to write or draw.”

Attendance was poor

A few people shared that even showing up to school was a challenge. MS can cause fatigue and depression, and it can make you feel physically weak. It is no wonder that it can be hard to find the energy to go to school.

“I was diagnosed at 17 in my senior year of high school. I missed a lot of days due to medical testing. Then I was put on Avonex, which made me sick almost every time. Mornings were really hard, making me late or absent a lot. Needless to say, I graduated, but my mom had to write a letter to the school and I ended up sitting in the principal’s office after school to make up hours. Luckily, my principal had a family member with MS and he kind of understood.”

“I was diagnosed at 18 years old (I am almost 25 now), and it was scary. I was having relapses back to back after I started college.”

Many missed out on social life

MS can negatively affect social life as well. Young people with MS may not have the energy to go to movies, dances, and other social events. That absence can harm their relationships, especially if their classmates do not understand why they cannot attend.

“As far as going out or hanging out in my free time, I often just did not feel up to it. One time I ignored how I was feeling and went out anyway. I fell and could not get back up. Had to call my mom to come help me.”

“I started losing friends once I started having more symptoms and flares. I have one friend left now, but I am trying my best to work my way through it.”

Attitudes changed

Many community members shared that growing up with MS shaped who they are – in a good way. MS has shown them a new way to look at life and reminds them to stay focused on the positive. They have found gratitude for their diagnosis. It taught them to appreciate the good days in a way they never had before.

“I am very calm and keep a positive outlook through it all. I believe getting ‘sick’ was a very positive experience for me, although I did not know it at the time.”

“I was 24, and I can honestly say it has changed my life for the better. I became a better person, and I had time to develop my faith. I learned that I just have to keep moving and remember to have a positive outlook.”

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