What I Learned From Losing Friends After My Scleroderma Diagnosis

The painful experience taught columnist Amy Gietzen some valuable lessons - by Amy Gietzen

Many people have come and gone in the years I’ve been battling scleroderma. However, the friends and family members who stuck with me have taught me some valuable lessons about relationships, vulnerability, and strength.

Before I was diagnosed with scleroderma in 2001, I was an extrovert, the life of the party, born to invoke cheer and fun. My schedule was jampacked with events, social outings, and gatherings with family, colleagues, and friends.
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Just before my diagnosis, all seemed right in the universe. At 19, my goals and dreams were starting to become a reality.

But life with scleroderma was a reality I wanted no part of. Those early years after my diagnosis were a train wreck. I spent most of my time lying to my loved ones and hiding how devastated and alone I felt.

To make matters worse, I was flaking on my work and school responsibilities and backing out of commitments due to constant fatigue and pain. On the inside, I was drowning in symptoms, but on the outside, I looked like an unreliable wreck of a human.

At that point in my journey, I couldn’t face the fact that my life as I knew it was over. It was unbearable for my loved ones to see me in such a weak and dissolved state. I despised my new habits, but I was so embarrassed by my body that I felt I had no options.
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