How has Scleroderma Changed my Life?

Does anyone really like going to the doctor? Whether it be for check-ups, sick appointments, or Flu shots who wants to sit in that office and be prodded and poked at? Not me, I can tell you that for sure. When I was in early middle school, I was diagnosed with Hypothyroidism. Doctors told me I was going to have trouble growing and other issues. This was scary for me. Was I going to be normal? Would I grow like the rest of my friends? This is when the doctors’ appointments really started.

I began seeing an endocrinologist through CHOP, the Children’s Hospital of Philadelphia. A few years later when I was still in middle school, my mom began to notice shiny brown spots all over my stomach and back. She was seriously concerned. The spots were blotchy, and when you put light on them, they had a glare to them. I wanted to ignore the issue. Convinced it was just an odd tan-line, I gave my mom serious attitude. I hated going to the doctor already for my thyroid. Why would I want to start going to a dermatologist too?

Despite my objections, we went to see a dermatologist. The doctors originally thought it was some sort of discoloration. I had to apply topical medication to my body every day. After that wasn’t successful, my dermatologist thought that it might be something more serious. In the meantime, I began to develop dotted spots on my ankles. My mom was now very concerned for me. At an appointment, the dermatologist put a bright light on my stomach. The shiny nature of my skin caught his attention. He decided that he needed to do a biopsy. This meant that I had to get a minor procedure taking a chunk out of my skin. Unsurprisingly, I was horrified, and I cried. This was the first time that I felt like a subject in a lab, being poked and prodded at for scientific research.

When the biopsy of my skin came back, the dermatologist’s suspicions were true. I had scleroderma. I was referred to a rheumatology specialist at CHOP in the city. What was interesting about my situation is that I had two types of sclerodermas, the one on my stomach and back and the other on my feet and ankles. The doctors at CHOP were very interested in my case. I remember my first appointment there. They immediately instructed me to get in a gown. The doctor and a student-doctor took many pictures of my entire body. Even though they were doing it for my benefit, I still felt exposed. I am a very private person. I felt like privacy was being violated. Although it was for my best interest, I felt like a science experiment.

On top of my thyroid medication, I was started on Methotrexate and a high dose of steroids. My face puffed up like a balloon. I began to get hot really easily and my cheeks were constantly very red. In middle school, especially as a teen girl, you are constantly aware of your body and what it looks like. So many changes are happening rapidly for everyone. When you are dealing with an ailment that everyone can see, you become hyper aware of what you look like to others. On top of the other changes happening to my body, I hated the way that I looked. From what my medication was doing to my face from the visible marks on my body I felt very insecure. My body image, at such an impressionable time in my life, was at an all-time low.

Summer hit. I wanted to wear a swimsuit and go to the pool with my friends. With the weight gain I had experienced from the steroids, the puffiness in my cheeks, and the marks on my stomach and body I felt paralyzed in a swimsuit. People would ask me “What’s that on your stomach,” or, “Is that a bruise?”. Once again, I felt like my privacy had been violated. These invasive questions once again made me feel less than.

On top of everything else teen girls deal with, I had to get past this. Doctors’ appointments with five doctors in a room were getting exhausting. Overall, I just felt tired. I felt tired for my mother who had to take me. Her concern grew every time we went to the doctor or even talked about it. I had to make adjustments at school so I could get all my work done on top of my appointments. Without a supporting family, I don’t know how I would’ve been able to do it.

All the medication I was on had effects on my body. After I was on my medication, I was diagnosed with Osteochondritis dissecans (OCD). I permanently have a bone chip lodged in my ankle. I had severe ankle pain for years and I have just gotten to a manageable level of pain. This hindered me from doing the things I love, like playing softball. I had to sit out for a year. This significantly altered my mental state. Without doing what I loved, I underwent a rough period of my life at a young, impressionable age.

Looking back now as a college student I realize how much Scleroderma and the autoimmune issues I have dealt with have altered my life. I think that while it has beat me down at times, it has built me into the young woman I am today. Being poked and prodded at, having body image issues, and missing out on parts of my childhood have altered my perspective today. I have empathy for those suffering and I feel like I must look at life with a glass half-full approach. Although I have scleroderma and other ailments, they do not define me by any means. I am me despite what I have gone through, not because of it. The people in my life have shaped me and my experiences with Scleroderma have changed me for the better.