How Scleroderma changed my life

“You know, that artist Seal grows patches like yours too”, my mom whispered to me in the fluorescent waiting room. I nodded as if I knew who Seal was, I was twelve. We were sitting in a dermatologist’s office, the name of which I can’t recall, I was too nervous to remember anything. I think about my past appointments, sitting on the zoo-animal print exam table while several student doctors questioned and examined me. They were puzzled, unsure of my spotty patches of hardened skin. I had gone to a doctor before; my parents were worried about the hard lump on my stomach. “It’s normal, puberty can do strange things”, I was told by my pediatrician. But now, it has spread. It wasn’t normal, it was growing rapidly. “Stephanie?”, the nurse scanned the room. My mom shot up from the chair, smiled, and looked down at me with hopeful eyes. I felt like I was floating to the exam room, my legs felt heavy and numb. My mind raced with the recurring thoughts of Is this serious? Will I be okay? What if I need to be hospitalized forever? Like a dream, I can barely remember the appointment. I remember the deep strip of skin they punched from my arm for a biopsy, and the steroid cream I was given. The drive home felt short. This all felt short, yet excruciatingly long all at once. We got the diagnosis shortly after, Linear Morphea Scleroderma. Linear, as in only covering one side of my body, usually linear in shape. Morphea, which is scar tissue localized primarily to the skin.

I was in my second semester of 6th grade, first year of middle school. I wore a light blue zip-up hoodie every day, covering the shiny tight patches on my arm. I feared kids thinking I was contagious, which would just add to the brutality of middle school. Kids are cruel, I knew this well. Just like any other kid, I’d come home from school, do homework, play games, brush my teeth, and massage my arm with steroid cream. Well, maybe that last thing wasn’t that common. 

For a while, this ritual worked. I thought, okay, this is manageable, it’s not that bad!  But when I moved onto 7th grade, that cream they gave me stopped working. The scar tissue began to spread, covering my right side in tight, hard patches. My face, neck, arm, stomach, leg, it plagued my body. I was afraid to admit it, I didn’t want to go back to a doctor, and I didn’t want to panic my parents. But I knew I couldn’t cover it up with a jacket anymore.

“Just relax, stress makes it worse” my mom warned me. Stress makes everything worse, I thought to myself. My dad was coming to this appointment, that’s how I knew that this was getting serious. My dad hates large cities, yet he drove us the two-hour journey to Knoxville. Standing between my parents, we rode up to the elevator to the Rheumatology office. I was quick to be brought into the examination room, where we were soon greeted by the doctor. I only remember random blurts of information from that appointment,

methotrexate…chemotherapy…this is advanced… pills or injections… I tried my best to hold back tears. It was embarrassing to cry. I wanted to be like other kids, I didn’t want to be on chemotherapy. Chemotherapy was a gut-wrenching word. I swallowed my tears back; I chose the pills.

We got back home from the appointment, I was exhausted. My sister, who is a year older, had a lot of questions. We have shared a bedroom our whole lives so at night I’d explain what the doctors had told me. It was almost like were reenacting the appointment, but I was the doctor and she was me. I remember my first dose of methotrexate, my mom sat next to me. “We can wait another week, or ask the doctor about our options, do what you’re comfortable with,” I still can hear her say this in my head. She knew what to say to comfort me, I’ll always remember. I swallowed five little orange pills. I winced, not from pain, but from the realization of what I just took. Methotrexate… chemotherapy… I was scared of the side effects, to the point I had started to manifest imaginary symptoms. I had taken it for a few months. Within those months, I felt exhausted, nauseous, and got headaches. I felt like Bubble Boy (from the 2001 comedy Bubble Boy), as my family was very protective over my weakened immune system. I was getting use to the pills, I was no longer teary-eyed thinking about my situation. I would make jokes to cope with my condition, it felt good to be able to make light of this now. But of course, this was too easy for my body to accept. At it’s worse, I couldn’t even extend my arm fully because of the bunched scar tissue cramping my muscles. I had to limit my sun exposure and do constant stretches despite the excruciating pain. My right leg and right arm shrunk smaller than my left side. The patch on my forehead tightened. My autoimmune condition was fighting back against the methotrexate, and it was winning.

“We need something stronger, let’s try injections”, the doctor told us. I remember the wave of panic rushed from my head to my legs. I hate needles and I didn’t like the neon yellow liquid in the glass vial, but this time I could keep myself grounded. I knew I could do this, just like before. My dad drove us to CVS to pick up the vials. I was in 8th grade, and I finally started to wear t-shirts to school. I wasn’t afraid to show my scars. I felt grown up, I felt like I was conquering this. I still remember my first injection. My mom held her phone with directions in one hand, while holding a small, thin syringe in the other. 45-degree angle, pinch the skin, slowly inject, my mom repeated the directions as she inserted the needle. This time, I winced because of physical pain. It was quick, but ouch. I rubbed the sore bump on my leg, trying to disperse the methotrexate. I felt strong, powerful, and grown. I had my own carrying pouch for my medicine. It became a regular part of my life, even the exhausting, sickening symptoms. I remember once when I visited my cousin’s house in New Hampshire, I let my cousin inject the medicine. We accidentally left the empty vial on the sink, my aunt found it thinking that someone was on hardcore drugs. We had a good laugh over that, I was finally comfortable.  My doctor scheduled an MRI to see the progression of my morphea. I barely knew what that was, I only knew it was big and loud. Both my mom and dad came to this appointment, but this time I didn’t see it as confirmation of a serious situation. I felt comforted and grateful for their support. I put on the hospital gown and laid down onto the bed. They wedged my sides with foam triangles and gave me headphones. “What radio station?” the nurse asked, “Classic rock, please!” I happily replied. I surprised myself with my calmness. I ended up falling asleep in the machine listening to “Layla” by Derek and the Dominos. We ate pizza after and went home.

I was a sophomore in high school when COVID hit. I stopped taking methotrexate, as I was afraid of getting sick with my already weakened immune system. Quarantine was very relaxing for me and my family at first, we hunkered down and stayed safe. We all have health conditions, so we all knew how important it was not to get sick. Even when school opened back up in Tennessee, me and my sister had to stay in online classes. It was hard, harder than we could ever imagine. All my friends were living life normally, but I was stuck at home. I spent my junior year of school at home but was able to go back in person for my senior year. We all got vaccinated, and still wore masks. I was just grateful to be able to see my friends in person.

My morphea was calming down then, the hard shiny patches faded to brown. I still had to stretch and massage my scar spots to keep it from cramping, but my immune system began to relax. I graduated, and I am now a freshman at East Tennessee State University. I recently had to start going back to a rheumatologist because I began to grow more scar tissue. Currently, I have morphea scleroderma on my face, neck, back, leg, arm, stomach and underarm/chest and hands.

Considering all of this, scleroderma changed me in countless ways. I’d even say it’s a part of me not only physically, but mentally too. It has made me resilient, independent, and strong, and has taught me more about myself and what I am capable of. It has shown me just how much my family supports and cares for me. I can trust in myself that things will turn out okay and ground myself even when I’m terrified.

My morphea taught me how to cope and grow, and despite all the pain and fear I had faced I would never change a thing; I am proud of my scars.

–Stephanie