The Young and the Beautiful: Living With Scleroderma as a Young Adult

Someone once remarked that scleroderma is the “anti-glamorous” disease because it mainly affects menopausal women. But the condition also affects children, young adults, and men.

In this column, we’ll hear from two extraordinary young women who are tackling scleroderma on their own terms.

Amy Gietzen, 39, was diagnosed with scleroderma at 19. She’s now a group leader at the Scleroderma Foundation’s Tri-State Chapter, which includes New York, New Jersey, and Connecticut, and founder of the virtual group Scleroderma Young Adults Needing Connection (SYNC). Amy lives in Buffalo, New York.

Samantha Showers, 27, was diagnosed with scleroderma two years ago. Today, she’s a manager at Teach for America and lives in Boise, Idaho.

Excerpts of our conversations follow, with light editing for clarity.

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DCW: What is SYNC?

AG: SYNC is an online only group geared toward young adults with scleroderma between the ages of 18 and 42. We provide members with socialization and educational opportunities.

What are some of the challenges you face as a young adult?

AG: I faced several issues. Most of the patients I met after I was diagnosed were older. I did not feel like my life resembled theirs. I was a college student who was working [and had] an active social life, [and I’d just had] a bomb dropped on [me]. I felt isolated and angry. As my disease progressed, I lost my ability to work, continue my education, and move forward with most adult things, like moving into my own place, starting my career, or even dating. It was all so complicated.

(Courtesy of Amy Gietzen)

How do you manage dating and socializing with a chronic illness?

SS: When I entered the dating scene again at 24, I was intentional about choosing date locations I was comfortable with. Being straightforward was key with my current partner, Jose. When we first started dating, I had multiple medical tests, and he was very supportive. It was about four months after we started dating that I got my official diagnosis, and it didn’t change our relationship. He is the most caring person I have ever met, and we make a great team together.

I think it’s important for friends to understand accommodations and flexibility. My trips with friends have gone great when I express my needs, such as breaks to rest, not being able to be out in the cold for long, etc. I also appreciate the friends I have who keep inviting me, even if I may need to cancel at times.

AG: Dating and socializing have always been a sore spot for me. My physical features [have] changed so much due to my illness. Those changes really took a toll on my self-esteem. I had to figure out how to embrace my flaws. I built up my support system. Having people around that loved and accepted me was key.

How do you stay independent both physically and emotionally?

AG: Independence is an extremely important aspect. My body seems to have a mind of its own. Having this disease for over 20 years, I listen when it tells me I am doing too much. I find it easy to talk about my scleroderma journey, but when it comes to being vulnerable in terms of relationships and intimacy, I have a hard time with that. No one wants to feel less than. This disease takes so much of our freedom, our rights to choose what we want for ourselves, it’s overwhelming. But I find confidence in the fact that I am directly changing the lives of people in the scleroderma community.

Samantha Showers lounges in a vintage RV during a recent trip to Oregon. (Courtesy of Samantha Showers)

SS: I’ve learned to give myself grace and accept that I do have some physical limitations, and I may need to do things more slowly than others, which is OK. I lived in an apartment by myself for over a year and loved it. It was scary at first, but I always had friends who checked on me and made it work for me.

What advice do you have for a young adult with scleroderma?

SS: Always remember you don’t have to be “healthy” to be happy. I feel like society has a health obsession that is rooted in ableism, which is very harmful to chronically ill and disability communities. Before I was diagnosed, I was always waiting to feel better and felt a lot of blame from others about why I was always sick. When you finally get news that you’re never actually going to get “better,” it’s psychologically devastating. Once I accepted that I will never fit a standard definition of “healthy,” it allowed me to realize that I am able to live a happy and fulfilled life.

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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.