Patient-ly Learning Part 1

Hey! My name is Stefany and I have been sick and in and out of hospitals since I was 8. I have quite a few different diseases, three of the biggest ones are complex regional pain syndrome (CRPS), neurofibromatosis and chronic migraines. My CRPS often causes me to be unable to walk for months and my chronic migraines are very debilitating. This is a little look into what being a high school senior and a 17 year old girl going through all of this is like.

So, what is it like being not just a senior in high school, but also a full time patient? Well, I’m going to fill you in. 

Life at Malden High is never dull, there are always clubs meeting, sports games to attend and tons of opportunities to fundraise or go see a concert/show. However, life at Boston Children’s Hospital is also never dull. Celebrities are always popping in and at least an hour long appointments are always coming and going. Juggling grades, appointments, treatments, family and a social life is a struggle, especially for my mental health. Having to miss so many things I look forward to because of my health is probably one of the hardest parts of it all. Even though I am sort of used to it, it’s hard for me to not be disappointed. 

Now, on the brighter side, it’s not all negative. I have learned so much about life and about myself. I have matured so much and have such a responsible view on life and especially my health. I still get to hang out with friends and participate in school activities (as long as I don’t have a flare up). I try to live as normal a life as I can and I try to keep a positive attitude as much as I can too. I also know so much about the medical world, which is definitely not useless information! One of the biggest things about being a sick high schooler is how much I have learned to love time by myself. I used to get so bored and sad when I was alone with on one to hang out with, nothing to do, but with all that time unable to go out and do things, I have really come to love my own company. I have gained so many new interests and fun activities to do on my own. I think it’s a really big part of growing up and maturing and especially with college coming up so soon, being dependent on family and friends is going to make a big transition a lot harder.

I have also learned a lot about friendships, because when you are sick and can’t always do what your “friends” are doing, they ditch you or replace you. Now I know this sounds harsh or depressing, but it’s the truth, some people just don’t want to deal with me and all my extra drama and that’s fine because that’s their choice. Since coming to high school, I have learned a lot about toxic relationships and have been able to cut that part of my life out and start new. Mental health is so important, it’s just as important as your physical health, and I’m so happy to say I found friends who lift me up instead of dragging me down. I have learned who is there to support me and who isn’t, which is probably the biggest thing I learned at MHS.

Being sick and having to mature at such a young age makes you have a very different view on life than most kids my age. I look around at my peers and even my friends and I see how much kids do not value their health. Being sick for more than half of my life, in and out of the hospital, I see so many people that are sick, so many people who are sick for no reason at all, just dumb luck, and yet people of all different ages, especially teens, are completely taking their health for granted. 

It’s so difficult to be different, especially when the thing that makes you different, so many people don’t understand or can’t see. Just know that everyone has bad days, everyone is going through something, so please be nice to others. We all need to have the bad days to have those really good ones!