What I Learned From Losing Friends After My Scleroderma Diagnosis

The painful experience taught columnist Amy Gietzen some valuable lessons

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by Amy Gietzen |

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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.

Just before my diagnosis, all seemed right in the universe. At 19, my goals and dreams were starting to become a reality.

A close-up photo shows two women smiling. Amy is on the left, with short brown hair and a black shirt, and her sister is on the right, with blonde hair and a blue shirt.

Amy, left, and her sister, Christine, are not only siblings but best friends. (Courtesy of Amy Gietzen)

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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Building Back My Confidence While Living With Scleroderma

Breaking down and breaking promises

Instead of keeping my plans with friends and family, I came up with excuse after excuse. Gone were the days of late-night drinks and dancing. My schedule was full of doctors’ appointments and procedures.

Eventually, I noticed that my phone was no longer ringing. I was alone and isolated, and I realized, to my dismay, that it was my own doing. I was so afraid of what people would think of me that I pushed them away before I could find out.

The more I told everyone how perfectly fine I was, the more they backed away. A part of me was disgusted that my so-called friends would forget me at a time when I needed them most. In reality, I had pushed them away by downplaying my physical and emotional symptoms.

Lessons learned

After the chips fell and I came to terms with my disease, I realized I’d needed to go through that period in my life alone. Yes, I’d lost many friends, but sometimes people are only in your life for a reason or a season. The people who truly cared about me were the ones who stuck around.

I found myself with a handful of friends and family members waiting in the wings. They helped me pick up the pieces of my broken body and life.

In the end, I learned that being vulnerable and honest with the people who love you doesn’t make you weak. If people truly care about you, they’ll support you through the good, the bad, and the ugly, no questions asked.

We all go through times when the rubber meets the road and life gets real. Knowing that people have your back can be critical. As much as it pained me to lose friends, it helped shape my approach to relationships moving forward.

Two women stand side by side with their arms around each other. The woman on the left, Kelly, has blonde hair and is wearing a black tank top, tan shorts, and black sandals. The woman on the right, Amy, has brown hair and is wearing a pink and blue maxi dress and black sandals. Kelly's young son and daughter stand on either side of the women as they all pose in what appears to be a garage.

Amy, right, and Kelly have been best friends since fourth grade. Amy now babysits Kelly’s two little ones. (Courtesy of Amy Gietzen)

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


Cindi Brannum avatar

Cindi Brannum

Boy Amy, I hear your pain and I hear what you've gleaned through this wretched disease! I'm hoping and praying that you've garnered alot more friends now that you've been in Ssc world for awhile. We are all good and nice people and we do GET one another! I'm convinced that we become better patients, people, spouses, parents, siblings, adult kids, friends, etc...as we live "life" with other like-minded and like-sicky people! The hardest thing is knowing this Ssc is not going away until we find a cure. You must find the "cause" in order to find the cure. That means a lot of F/R & awareness events to keep our rheumatologist-researchers going the distance. Then when they retire; we keep going bc we DO want a cure. Still. No matter how long it takes. In the now, you use this sounding board and other social media outlets to get you through. Be careful what you read and do your own research because only YOU know your body best. Communicate and surround yourself with people both fun and med professionals that actually "hear and listen" bc you do need the support in this journey. It's okay to lose friends especially church friends (that stings) bc you will fill those spots with people who really matter to you and you to them. I wish you well and have a very Mele Kalikimaka, my dear!


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