Author Archives: Amy Gietzen

Scleroderma Patients Deserve to Be Heard

When people learn that I have scleroderma, they tend to react in one of two ways. Some offer pity and sorrow and treat me as though my life were over. They’ll look at me like I’m a lost kitten or mistakenly assume I’m now dependent on other people’s mercy…

My Love of Food Has Caused Me Heartache — and Heartburn

Eating is a sacred ritual in my life. I live for the aroma of freshly baked rosemary bread or the first bite of homemade chocolate chip cookies. Between the salty dough and the semisweet chocolate, the flavors are almost indescribable. I am also passionate about trying new foods. But eating…

Low Self-esteem Is Another Challenge I’ve Had to Face

I like to refer to myself as a candy-coated treat: a hard shell on the outside with a soft, gooey middle. Since being diagnosed with scleroderma, I’ve often had to toughen up my hard shell to take on the difficult changes — like hand and facial deformities — this disease…

With Scleroderma, the Pain Is Relentless

Picture in your mind the most painful thing that has ever happened to you. Now zero in on exactly what the pain felt like, looked like, or even smelled like. For me, there is no greater pain than having ulcerated wounds. I never really knew the feeling of true…

Art Is My Outlet for Coping With Scleroderma

When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me and said, “Get your affairs in order and work as long as you can. Scleroderma has no cure and will ultimately take your life.” To say I was affected mentally…

Scleroderma Offered Me a Path to Self-acceptance

We all face a lot of pressure to appear perfect — educated, attractive, healthy, capable, and independent. This can be a big pair of shoes for a “normal,” healthy person to fill. Now imagine how difficult it is for someone with a chronic, debilitating illness to check all of those…

Scleroderma Brings Both Endings and Beginnings

When the COVID-19 pandemic hit the U.S. in March 2020, it was like time stood still. Many chronic illness patients were on high alert, constantly afraid of contracting the virus. Given the complexity of my disease, scleroderma, even the common cold can land me in the hospital, fighting for…

Never Have I Ever: A Game of Life Lessons

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 Traveling Woes I Face as a Scleroderma Patient

My traveling days have been few and far between since I was diagnosed with systemic scleroderma in 2001. Now, it’s even more difficult due to the COVID-19 pandemic. However, I was invited to participate in an ad that will promote clinical trials, so last month, I traveled from my home…