How COVID-19 Has Improved Understanding of My Life With Scleroderma

by Amy Gietzen | August 3, 2022

As a woman with scleroderma, I’ve faced many unknowns regarding my body and health over the last 21 years. Every day is a new adventure in my own “series of unfortunate events.”

Since my diagnosis, I’ve restructured my life to make my health a priority and become hyperaware of any potential illnesses or infections. I now stay away from people who are sick, use all-natural products, and avoid touching surfaces such as door handles, railings, and elevator buttons. It may seem ridiculous to some, but this is my new normal now that my immune system is compromised.

But for many years, I didn’t think most people could fathom what it’s like to live in constant fear of getting sick.

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The arrival of COVID-19

When I started hearing about COVID-19 in early 2020, I knew my life was going to change once again. But I don’t think anyone was ready for how drastic the changes would be.

When COVID-19 made its way to the United States, and thousands of people became seriously ill, with many dying, I wondered if the general public would finally start to understand how worrying constantly about your health can take a toll on your well-being.

Looking back on the past few years, I think the majority of people have recognized life will never be the same. However, others act like nothing has changed.

How can a virus that has infected more than 500 million people worldwide not make you more conscious of your actions and reactions? I’m still seeking an answer to this question.

Living amid a pandemic has led most of us down a twisted path of confusion and fear. Differing opinions about COVID-19 have created division, further darkening our world. This has been overwhelming and caused chaos and misunderstanding.

However, the pandemic also has led some to become more empathetic and compassionate, to strive to make the world a kinder, more united place.

The importance of unity

I first met someone else with scleroderma in my late 20s, almost a decade after my diagnosis. I had lung and heart involvement and was trying to come to terms with the cards God had dealt me. Finding another person living with the same disease instantly changed my life.

That introduction reminded me that in addition to medical treatments, financial assistance, and resources for daily living, we as patients need community and friendships. We need people to lean on, who understand what we’re going through.

I believe that idea rings true during the pandemic as well. Everyone has different opinions, values, feelings, and morals, but we all have a common enemy: COVID-19.

The pandemic has touched everyone’s life, directly or indirectly. It’s affected us personally, professionally, physically, emotionally, politically, and financially. The illness doesn’t just harm those who are older or immune-compromised, but healthy people, too.

Similarly, scleroderma has no remorse or bias when it comes to those in its grasp. I was once a healthy young woman just living her life, but my disease changed that.

Now, my community of like-minded individuals has expanded. Even if someone doesn’t have a rare disease, they can understand the fear of getting sick. They sympathize with not wanting to be around people who might get you sick, and know what it’s like to change your life to accommodate an unwanted guest.

Moving forward, my wish is for everyone to band together. We all have baggage to carry, and even if our bags look different, we can help one another carry the weight. Creating more unity in today’s climate could make a huge difference in all of our lives.

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.

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About the Author

Amy Gietzen Amy Gietzen resides in Buffalo, New York, with her amazingly supportive family, friends, and three cats. She's a patient advocate, the creator of the young adult virtual support group SYNC, and a public speaker who travels across the country educating students and medical professionals about scleroderma. Amy was diagnosed with systemic scleroderma in 2001 at 19 years old. She's also developed idiopathic pulmonary fibrosis, pulmonary hypertension, and major heart rhythm issues. In 2020 she received the Ernest Dupont Award from the Steffens Scleroderma Foundation, of which she is the secretary. In 2019 The National Scleroderma Foundation awarded Amy with the Volunteer of the Year award for her work in supporting young adults living with scleroderma.