Never Have I Ever: A Game of Life Lessons

Amy Gietzen avatar

by Amy Gietzen |

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As young adults, my friends and I used to play a drinking game called Never Have I Ever. The rules were simple: Someone calls out something they’ve never done. If you haven’t done it, either, you do not take a sip of your beverage. However, if you have participated in the activity, you must take a drink. Because the activities called out are often risqué, drinking may earn you side-eye glances or playful comments.

I remember the game clearly, as I almost always had to drink, which meant enduring my friends’ proverbial clutching of pearls and smart remarks. I was a wild child, a free spirit, always up for an adventure or something fun to do — that is, until I was diagnosed with systemic scleroderma.

Learning I had a potentially terminal disease took the wind out of my sails. Gone were the days of late-night bar hopping and eating greasy food at 5 a.m. There would be no more last-minute road trips to undisclosed destinations with only the clothes I was wearing. My life seemed to stop as I left the doctor’s office that fateful afternoon in 2001.

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Now, as I think back on my past life as an adventure-seeking young adult, I wonder how exponentially different my answers would be during a game of Never Have I Ever.

Never have I ever fallen in love, gotten married, or been hired for my dream job. My glass would remain full. Never have I ever traveled outside the country, seen my dream rock band in concert, or enjoyed a Broadway play. My glass would still be untouched. I don’t think the game would be as much fun for me nowadays.

As I look back on my life, I’m sad that I haven’t experienced everything I’ve wanted to. Are there things I could still accomplish, even though I’m sick? Of course. But there are many other activities that will remain frozen in my brain as fantasies.

Having missed out on so much, I’ve learned to more deeply appreciate what I have been able to accomplish. Yes, my disease leaves my adventurous side feeling empty. However, it has also created space for a different part of me to thrive.

Finding new ways to achieve my goals

Following my diagnosis, the first thing I learned to do was to let the old Amy go. Initially, I grieved for the loss of my misguided youth. However, I soon began to blossom into a person who stands taller and uses her voice. I realized that if I couldn’t reach all of my goals, then maybe I could shift my perspective, find new ways to achieve my goals, or even create new, more attainable goals. As I learned to cope with my disease, I found inner strength.

I used my experiences as a young adult with scleroderma to reach out to other patients. Sharing my struggles wasn’t easy, but it helped me to find a small glimmer of hope. The more I spoke up about my limitations, the easier it became to talk about what exactly scleroderma is. I used my voice to advocate, and shared my awful experiences with anyone I met. My mission was to find teachable moments that would help students, patients, clinicians, and caregivers learn more about scleroderma and how it affects everyone differently.

Stacking the cards in my favor

Letting go of my old self wasn’t easy. I had to push through the hurt and anger to arrive at a place of acceptance and be a voice for my community. This allowed me to turn my helpless feelings into a passion for advocacy that continues to grow.

I don’t have all the answers about how to let go of the past. I am simply taking my life into my own hands and cherishing each moment as a blessing.


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.


Bev Olean avatar

Bev Olean

Your experience with Scleroderma has been so much worse than my mild-by-comparison symptoms. I admire how you have dealt with the disease, particularly since you were diagnosed at such a young age. Your positive attitude is truly admirable and hopefully will be an example to anyone dealing with Scleroderma or any other life-altering disease.
Please continue to express your positivity, it is inspiring to all.

Amy Gietzen avatar

Amy Gietzen

Thank you so much! I am honored that my words have touched you.


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