Losing my Youth
Growing up an athlete, I was always the active one of the bunch. Always wanting to go, go, go, and still having energy. Now, I am the friend that has to wait to go places. Now I am the friend that needs to take breaks when we walk. I’m a friend who can’t stay outside too long because my symptoms activate. I’m the friend who got invited less and less. I’m now the friend that no longer makes plans with people.
Being only 24, I feel like I have had to lose my youth. At age 19, when I was diagnosed, I had to go from a spunky teenager to an overnight adult. My world was no longer hanging out with peers my age. I was constantly surrounded by adults, so I had to quickly become one. The day I was diagnosed, I had my mom speak for me. That also quickly changed.
I educated my doctors about NMO
I was 19, telling doctors that have been to school for 10+ years what NMOSD was. How it affects me, what symptoms it gives me, and what medication I need. Yes, I was telling doctors to prescribe medication I had researched. I was once a lazy college student that struggled to take notes. I was now putting together booklets for doctors with the research I had gathered. I was once a timid voice who now has to run care meetings with doctors.
NMO forced me to grow up
I had to grow up fairly quickly. The few times I tried to go out like I used to ended in medical emergencies. When I was left alone, hours away from home, I knew that this was no longer a way to live. I couldn’t be a reckless and careless young person. I had to now think with intention. I was a sophomore in college when I got sick. I loved every inch of it. College was the best experience I could have ever asked for. Unfortunately, my higher education was cut short.
I lost my scholarship due to inactivity and my inability to return to school in Illinois. For a few weeks, I had a funny idea that the attack would resolve and I could return to being a track star. When reality set it, it was brutal. I lost my place on a collegiate track team. I lost my full-ride college scholarship. I was kicked out of my sorority and removed from email lists from clubs I once was a part of. I was replaced by my roommates.
I knew nothing outside of being a college student. I thought going to the doctor and getting treatment would allow me to get back to all Of this.
Friendships and FOMO
It was that daunting and dark feeling of realizing that I wasn’t returning. I religiously watched Facebook and Instagram stories to see what I was missing out on. I found that although my world stopped, everyone else kept going. At that point, I had to consciously choose to cut out the people that were cutting me out.
Being the pivotal age of dating, going out, and exploring life, I was with my mom 24/7. I had no one to talk about new music with, no one to talk about pop culture gossip with. So, I taught my mom. I showed her all of the new music and artists, told her about the latest Taylor Swift dating drama, and made her watch current shows. She probably would listen to the music I put on if she had a choice, but she knew I had no one to talk with. I lived through my mom's stories about her young life. And I so graciously told her everything about my young life. Even the parts you don’t usually discuss with your mom. She tried everything to make me feel like I wasn’t losing my youth.
Realizing what matters
But the unfortunate part about growing up earlier than your peers, you lose interest in things that once mattered. What I used to believe was so important became minuscule. I wasn’t worried about Instagram post likes, keeping Snapchat streaks, or the gossip about those I went to high school with.
The more I would try to hang out with old friends, the more it became apparent that I no longer had any commonality with them. I was a fading voice in their conversations.
Now being 24, I still find that I don’t connect with people my age. I have become so accustomed to being surrounded by and talking with adults all day. The day I found my Bestfriends was the best day of my life. And funny enough, there was mutual hate before we became Bestfriends. I could not stand the two girls I know call family. But after my friends left me, they stayed behind to pick up my pieces. They saved me from a world of loneliness.
I have gained perspective because of NMO
The day I got sick was the day we all grew up. Even though it wasn’t happening to them, it happened to all of us. It's not about finding friends that want to deal with your chronic illness. It's about finding friends that take on your chronic illness as if it were them.
I believe that I had to go through a period of loneliness. To reassess what I cared about in the world. So yes, I lost the youth I though I was supposed to have. But I gained perspective and clarity. Most people don't hit that until they are much older and wiser. Being diagnosed gave me that.
How long has it been since your initial NMO diagnosis?