“How Scleroderma Has Changed My Life”

I use narratives to explain the nearly impossible life I’ve lived.

Different aspects of my life call for independent narratives. In the case of my sickness, nothing holds more truth to my experience with Scleroderma than Beauty and the Beast. When my hands turned purple, and my joints ached, my fairytale was ripped away from me. I was assigned a new reality: a fundamental crash in everything encompassing my life. Self-loathing, hatred, and pain overtook luxury, joy, and simplicity for a time. Still, I found my happy ending. When the sorceress transformed the Beast, she presented him with a rose to mark the time before his punishment was permanent. The course of the Beast’s life was changed forever.

When the first petal fell, the Beast was forced to accept his reality. I was forced to partake in my new reality when I was diagnosed with Scleroderma at age sixteen in July 2020. The doctors prescribed a treatment regimen that failed to work in the beginning, which resulted in ongoing physical and emotional agony.

I felt excruciating physical pain after the onset of symptoms six months prior to my diagnosis. My symptoms were so harmful that I was bedridden. I was experiencing vomiting, joint pain, and exhaustion. Following my treatment regimen seemed pointless. In one instance, during preparation for a lung biopsy, the medical team placed an IV in my hand. When the medication entered my vein, a chill left me screaming before the anesthesia put me to sleep. The physical pain in my life has been nothing short of traumatic. Just as the Beast was forced into purgatory and transformed into a new body, I was subjected to aches I did not ask for.

It’s difficult not to be able-bodied when my peers are.

It’s challenging to have to hide away and avoid physically demanding activities. Scleroderma left me feeling isolated for a long time.

I became familiar with pity and worry upon my diagnosis. People’s perceptions of me changed. Post-diagnosis, I was not the center of attention. People saw me in a typical fashion. When one is seen as sick, it’s incredibly stigmatizing. It’s easy to internalize the messages one hears from society that illness is the enemy. In my experience, it felt this was all that I could be – the enemy. I became pessimistic and angry. I had no one to blame, and this led to self-blame, hatred of my higher power, and no faith in a cure.
The Beast is stigmatized too – as evil. He internalizes his punishments, blames himself, and hates everything around him, creating low self-esteem. Like him, I failed to see myself in a positive light. I was the sick kid.

The only joy in my life was the comforts around me. The seemingly animated objects serving the Beast were no different from my family. The days I spent in bed were marked by the warm tea my mother served and the music my father played. While at times I was ungrateful, craving independence, the support I had was the first step in my happy ending. I gained a support system when I fell ill.

When a new petal fell from the Beast’s rose, my doctors prescribed Actemera as the answer to my treatment. I was able to get out of bed. I was able to live again. Belle prompted
the Beast to change. My prompting event, the medication that worked, sparked the realization that I am greater than Scleroderma and that my sickness is not the enemy. I integrated my condition into my life when I accepted that bad things provide good. Even though the Beast was evil at one time, he got his happy ending. Acceptance was my happy ending.

Once no more petals fell, the Beast had his true love, Belle. Once I accepted my Illness, life became much more manageable. The physical and emotional pain was eroded by a series
of coping skills I developed. Instead of feeling bitter, I now understand that emotions are dialectical, two things at once. I permitted myself to be upset and grateful. While the physical aches still hurt, I feel less isolated and more confident. Instead of noticing what I can’t do comparatively, I’ve come to see my limitations are unique. I’ve come to know that I have an extraordinary experience as the “sick kid .” Juvenile Scleroderma happens so rarely it is one in a million. As I mentioned previously, I saw the rareness and the pain of Scleroderma as a reason to blame myself and hate the universe. I was wrong.

Scleroderma was not my fault; it was simply the universe doing its job. The universe exists to pose a challenge, to push one almost to a breaking point. The challenges in life don’t play a part in blame. They exist to serve a purpose.

Like the Beast fell in love, I did too. All the perspectives I mentioned above, how I came to understand my one in a million experience and my higher power: the universe, led me to fall in love with Scleroderma.

Being sick now is much different than it was in 2020. Now, I take my treatment regimen seriously. While I’ll never be an average nineteen-year-old, I am delighted with my life. Recently Scleroderma took me across the country. I moved from Rollinsville, Colorado, to Boston to be treated at Massachusetts General Hospital. My medical team is making incredible advances in my care. I am participating in research studies, and I have faith that someday, they’ll find a cure. I am matriculating at Hampshire College in the spring of 2023.

Scleroderma changed everything. It brought pain and suffering but also support and perspective. The Beast hosts a ball at the end and beginning of his story. These balls serve as markers. A marker at the beginning of my story, a diagnosis of Scleroderma, led to a time of grief and denial. The ball ending my story plays a new song: healing.

Each day, I become better both physically and emotionally.

– Esmee