Scleroderma and Mortality: More Than Two Decades of Coexistence

After confronting it in my teens, I'm coming to terms with it at 40 by Amy Gietzen

The word “mortality” has ping-ponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades.

As a teenager, living with scleroderma made me angry. I bottled up all of my rage-induced emotions so I could fight for my life and find adequate medical care. Nothing I went through during those years was straightforward. My life then seemed out of control and forever changed. I had to sift through granules of emotional sand to find balance, and all the while my mortality was a specter in the distance, watching intently.
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I lived out my turbulent 20s juggling work, school, and scleroderma. Each day one would outweigh the other until eventually, I lost my rhythm. Nursing school was my happy place, and even though I was in constant pain from lifting patients and making hospital beds, I loved every minute of honing my craft.

Eventually, my symptoms outweighed my passion for school. I was exhausting myself, and my body paid the price with chronic fatigue, pneumonia, and finger ulcers. In the end, school and work became collateral damage to the war scleroderma was waging against my body.

As I nose-dived into my 30s, my health continued to decline, with hypertension, heart arrhythmias, vasculitis, and nerve pain. My mortality was no longer waiting in the wings. It was front and center, daring me to grasp it.
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