When you are a teenager, there is a lot of change happening to you and around you. High school has a lot of drama and stress that takes a toll on the body. Of course, schoolwork isn’t the only stress, but it can be overwhelming to even the brightest student at times, especially when all of your teachers decide to pile on homework at the same time. Often, you endure many nights where you stay up late to finish your homework on time.
If you have already been to high school, you may remember that there is also a lot of personal drama. There is a lot of stress building and maintaining friendships and other relationships. It can be a lot of work to fit in, even for a “regular” teen.
Imagine Being a Teenager with a Chronic Disease
Imagine going through all of that “typical” high school stress while missing at least one to two days of class each week and sometimes missing entire weeks of class at a time. Imagine trying to focus on your homework when you’re exhausted, even if it is only 3pm. Imagine trying to write that English paper or do those math problems with swollen and painful finger joints. Imagine trying to remember endless history facts when your head is throbbing. Imagine taking medications that have many side effects, including making your face puffy and swollen.
I don’t have to imagine what that is like because it is my reality. I was diagnosed with Juvenile Dermatomyositis, a rare autoimmune disease that affects the muscles and skin, when I was 11, and I now take 21 pills a day, get a shot each week, and get an infusion overnight in the hospital every few weeks. I often require a nap after school to make it through the rest of the day, and I always have some degree of pain everyday. I have even had meningitis from my treatment three times during high school, which required extended absences.
Like the other teens, I want to fit in at school, but at times I feel like I live in a different world. I don’t often feel up to going shopping with friends, and I am rarely able to relate to their problems. I often feel like an outcast and almost feel embarrassed to have an uncontrollable chronic disease. The majority of teenagers don’t have to get up in the morning to take pills or be admitted to the hospital. Due to my disease, I have had to mature much quicker than your average 16 year old.
Growing Up Fast
It is very hard for me to find other people my age to talk to and share my problems with because my worries are drastically different than theirs. They worry about their crushes or what they will wear to the next football game. My worries are on my treatments and wondering if I will even feel up to leaving the house to go to a school, much less a football game. I find it difficult to relate to people my age.
About a year and a half ago, I made a video that was spread widely on the Internet. I was frustrated while in the hospital where it felt like it was impossible to get any sleep. I also voiced my frustrations about doctors talking to my parents instead of to me. This one video and the reaction to it has changed my life.
Viral Video – “I am a patient and I need to be heard”
I have begun speaking at different hospitals about my experiences. Even though my disease has led to some amazing opportunities, sometimes I can’t help but want to be a normal teenager.
I now tell my story because I want to make a difference in healthcare. If you are a healthcare provider or teacher, I hope that you can gain some perspective from my story that you can have in the back of your mind the next time you have a teenager in your office, hospital, or classroom.