Learning to Embrace Life Changes With Scleroderma

Amy Gietzen avatar

by Amy Gietzen |

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“I used to …” I found myself saying that more and more as the years went on, despite my best efforts to maintain normalcy more than 20 years after being diagnosed with scleroderma.

After that diagnosis in 2001, I began to see myself changing: The things I’d once enjoyed were now hard to accomplish. 

As a child, I loved to dance. This continued into my adolescent years, when I took lessons in tap, jazz, and ballet. Dancing was my first hobby as a child, and I grew to enjoy it immensely. I could close my eyes, let go, and my body would speak for me. I discovered a feeling of freedom that I couldn’t find anywhere else in my life.

Now in my 40s, I look back and realize I’m still chasing that feeling.

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After my diagnosis, my body simply wouldn’t move the way I needed it to. One by one, all of my hobbies began to shift from the “passion pile” to the “I used to enjoy doing this” pile. Having to let go of activities that made me feel happy and alive did something to my soul. The spaces these moments once held were now void of happiness. I found myself chasing feelings of freedom.

But how could I replace that freedom? I began to dive deeply into any and every activity I could find. I joined a book club, took baking classes, and even attempted fly-fishing. Unfortunately, nothing I tried could replicate the feeling that dancing had given me.

Then, one day while on an island vacation, I finally found my mojo again. It happened while riding a motorized scooter and wearing a tropical sarong and a pair of flip-flops.

I discovered that riding that scooter was a way to take my mind off life, illness, and pain. I decided to do some “shopping therapy,” and 10 stores, $200, and an hour later, I found myself enjoying the ride more than the shopping itself. Thus began my love affair with island scooter rides.

I would silently meditate as I journeyed down random streets and along trails. In those moments, I’d contemplate the things that “used to be,” and I’d wonder how my life got to this place of unhappiness.

finding grace | Scleroderma News | A photo collage with 12 photos shows Amy with various friends and family members smiling and having fun in various activities

Trying new things with friends and family members helped Amy find grace in life after a scleroderma diagnosis. (Photo collage by Amy Gietzen)

Learning to let go of things is extremely difficult. Anytime we experience life-changing events, a mourning period follows, and we can feel the weight of our emotions piling on.

But that time, I gave myself grace to wade through my emotions, and in return, I found a new passion. Taking those island rides helped me to prioritize the things I needed to work on in my life.

I didn’t necessarily reinvent the wheel, I simply focused on finding grace and joy again, because without it, my life felt considerably less inspiring. In the end, I learned to let go and embrace new things. I allowed myself the grace to mourn my old life and what used to matter most.

Ultimately, I found happiness in new adventures. I have embraced my newfound activities, and in doing so, I’ve discovered exciting things I never would have tried had it not been for scleroderma.

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.


Tim Harley avatar

Tim Harley

This is very well said! I am 57 years old. And as I've aged, whether due to issues with health or simply to the aging process and stages of life, I've had to let go of things that I've enjoyed several times over through the years. And you are correct, it isn't an easy process. But it doesn't mean the end of joy or happiness. It simply means, as you've stated, finding new adventures in life. And they abound. Yes, grieve what we lose and allow ourselves grace the to accept and embrace who we are in whatever moment we exist. And seek the beauty and adventure that exists all around us. Life is always about stages and change. There is no stasis.


Amy Gietzen avatar

Amy Gietzen

Tim thank you for your kind words and for how you so clearly related to my article! Sometimes having someone understand and relate to your journey makes all the difference. A

Lucy Wightman avatar

Lucy Wightman

Amy! How this spoke to me… I was recently diagnosed with systemic sine scleroderma and have GI involvement whose severity waxes and wanes. As does the crippling fatigue. My symptoms began after my first Moderna shot but looking back, this had been smoldering for several years. I was a dancer. A curious person in constant motion. Cycling, bird banding, bodybuilding, running, hiking… all of it and always dancing. Dancing is better than air. I look at my mountain bike and road bike, roller blades, assortment of ear buds, ready to go, all the outdoor equipment hanging on hooks for easy access… I am prepared so that during the wanes I can leap. And foolishly, leap I do. Sometimes, like now, an hour on my spin bike costs me a day. Other times I am granted a longer reprieve. I took a solo, 30 day road trip from April to May, went to a music festival, lugged my 13 pound camera lens through epic spring birding marshes and forests. And after two weeks of yogurt and peanut butter I ate what I wanted. The. I came home to move and thankfully didn’t crash until all was done. It is a cruel disease and for you, only 19 when diagnosed, crueler still. I am 63 and don’t know who I am anymore. Curiosity takes energy, it needs one’s body to fulfill its urges. I am pretty sure that the grace you’ve found will continue to elude me.

Amy Gietzen avatar

Amy Gietzen

I am so sorry for the difficulties you have endured. I think we both know scleroderma is extremely difficult to live with and making the most of the time we have is what matters most! Thank you for sharing your story with me!!


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