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The Day I Decided to Get Up and Go Back to My Life With Chronic Illness


“A smile puts you on the right track. A smile makes the world a beautiful place. When you lose your smile, you lose your way in the chaos of life.” — Roy T. Bennett, “The Light in the Heart”

It took me some time to internalize that I have a chronic illness. I knew that I had been sick for very long time, I also knew that no one really knew what was wrong with me. I also knew that fibromyalgia and chronic fatigue syndrome (CFS) are chronic diseases and those names were new to me, so I started to read. I read everything I could find about fibromyalgia and CFS and I understood that I have it, I couldn’t argue with it. While I was reading I saw the words “chronic” all the time, but I attributed no significance.

All of my problems began at the beginning of 2016. Until almost June I was depressed about my situation. I used to think, “Why is this happening to me, what did I do?” I didn’t go to school, I didn’t go out from my house, I only left for doctors or tests, that it. When I think about this now I almost cry, and I know there are many people all over the world like this.

Just now I feel brave enough to say, “I am chronically ill.” Yes, that what I am, I have many conditions, besides fibromyalgia and CFS I have NF1, PTC and more. But those are the most important and the most impacting of my life. It took me a year to convince myself that it is OK to say the words “chronic illness,” and that this is me and that I need to stop thinking about what I could do if I was healthy and I just need to get up on my legs and start doing things. So what if I sick? Well yes, I am in pain, I go to doctors and hospitals every week, I feel weak and tired all the time, but it doesn’t mean I need to stop everything. I can still try to do things and I can do new things I never imagined I could do at the age of 17.

Sometime in June 2016 I realized that I am missing everything. I realized that everything is just passing over me. When I realized that it was really shocking to me and the next day I decided to go to school. I don’t remember clearly the first day of school, the only thing I remember clearly is everyone saying to me, “You look healthy, we are glad you feel better.” It was like a box to my face. I remember standing and trying to explain that I don’t feel better. I remember how suddenly nobody seemed to care about me. That day I came back home almost crying. Nobody told me it would be so hard to explain why I look good but am not.

Months passed away, some kids understood and others didn’t but it didn’t bother me. All I cared about was how I was feeling and how happy I was. Than summer vacation began and I was amazed, I met many of my friends from all over the country and they understood, some of them even went with me to the hospital once. As the summer continued I started to forget I was sick. I didn’t listen to my body and my pain was huge. I had many fights with my parents but still, I thought I was getting better.

One day I sat on the park and suddenly I started to see double. I remember that day like it was yesterday, I understood that I am not getting better. I got to the hospital and stayed for 20 days. But this time I didn’t let myself go down, I didn’t let myself be depressed; well I was, but I did talk to my friends and I did go out from my room. I talked to the doctors and I smiled. They called me “the very sick smiling kid.” This time when I went back home and the summer vacation ended I went to school, and I am now doing what I can.

You probably asking yourself what I am trying to say here, so here it is. Don’t ever give up. Even if you are in pain (and I know how hard it is to be in pain) and even if you feel like you just want to bury yourself somewhere and you don’t want to talk to anyone, think again. You might regret it one day. Go outside and smile at everybody. Don’t afraid to smile because you are sick, people need to understand that even people who have chronic illnesses can smile. We can be happy, too, so come on, let’s spread it all over.

The day I decide to get up on my legs and go back to my new life was one of the important days of my life. I started to smile again after that day. I also started to be optimistic, and I am. Because of that day doctors called me “the very sick smiling kid,” I don’t know where I would be now without that day. I hope you are smiling. I hope you aren’t afraid to smile and do things you like.

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Thinkstock photo by Izf