Looking at me, people may see a girl that is healthy, happy, and doing the same activities as anybody else would participate in. What most people don’t know is that my life is some of those things, but with a twist. I have an invisible illness, which has affected me for my whole life.
Throughout my childhood, there were many strange things that happened to me, in which most of them didn’t quite make sense. At one point, I lost all of my eyelashes and they didn’t grow back until a couple of years later. This was just one of the many things that I experienced during my childhood.
As I grew older, things began to become very strange and uncomfortable for me.
When I was twelve years old, I was experiencing many symptoms, such as joint pain, extreme fatigue, unusual skin rashes, and other unpleasant things. It was a very terrible and confusing time for me, because I had no idea what was going on.
Eventually, I was admitted to the hospital on a Sunday afternoon after ten hours of being in the emergency room. I had hundreds of blood tests and ultrasounds done. The doctors did not have a clue what was causing me to be in so much pain. However, after a period of time, a team of doctors discovered that my liver was completely scarred. My family and I did not know if I would need a transplant, or need continuous treatment in and out of the hospital.
Going home from the hospital was a very tough transition for me. Being in middle school, there was a large amount of work I needed to catch up on, as well as, rumors spreading around the school about me. I had people come up to me thinking that I had cancer and thought I was going to die. It was so detrimental to my mental health to hear these kinds of things, as well as, the emotions that I was dealing with while starting new medications.
I bounced around from hospital to hospital to find the right fit for me. Eventually, I settled at Boston Children’s Hospital with wonderful doctors and nurses. I was able to get all the answers I needed. However, some of those answers were very scary. Was I going to be able to have kids in the future? Could I ever consume alcohol? Will I need a liver transplant?
Well, yes, no and no.
Further, I gained a lot of weight from being on medications to manage my condition, which affected my self-esteem tremendously. Even now, it’s tough because I constantly have the image of myself twenty pounds heavier.
Years later, I am still struggling with my condition, but it is much better. Consequently, I was diagnosed with Lyme disease and another liver condition on top of the one I already have.
Being in college with these conditions is difficult, because I can’t participate in the social activities on a Friday and Saturday night like most people can. It makes me feel very alienated, and people don’t understand and think I’m strange for not doing any of those activities. In reality, I really want people to cherish what they have. Often, college students, or other people in general, don’t think of their organs and their health before they drink on the weekends. There are many people that don’t have healthy organs, like me, that could use them.
I am also tired most of the time, and it isn’t because I don’t get enough sleep. I could sleep thirteen hours and still be exhausted. Sometimes, it’s hard for me to get out of bed for class and other necessities of life.
Luckily for me, I have met some amazing people through my journey with chronic illness. My best friend, Brittney, has the same condition as me. We constantly laugh together and bond over what we have gone through. I have given her support and she does the same for me.
Overall, I’m glad that I have been exposed to these experiences during my lifetime. It has brought me amazing opportunities, friends and a greater understanding of who I am. This is just a part of who I am. Even when life gets hard and the pain is unbearable, I keep going and live the life that I was given. I view my life much differently than those without a chronic illness. I’m strong, determined and motivated.
To those who have chronic and invisible illnesses: keep your head up.