Scleroderma and Mortality: More Than Two Decades of Coexistence

After confronting it in my teens, I'm coming to terms with it at 40

Amy Gietzen avatar

by Amy Gietzen |

Share this article:

Share article via email
Banner for

The word “mortality” has pingponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades.

As a teenager, living with scleroderma made me angry. I bottled up all of my rage-induced emotions so I could fight for my life and find adequate medical care. Nothing I went through during those years was straightforward. My life then seemed out of control and forever changed. I had to sift through granules of emotional sand to find balance, and all the while my mortality was a specter in the distance, watching intently.

I lived out my turbulent 20s juggling work, school, and scleroderma. Each day one would outweigh the other until eventually, I lost my rhythm. Nursing school was my happy place, and even though I was in constant pain from lifting patients and making hospital beds, I loved every minute of honing my craft.

Eventually, my symptoms outweighed my passion for school. I was exhausting myself, and my body paid the price with chronic fatigue, pneumonia, and finger ulcers. In the end, school and work became collateral damage to the war scleroderma was waging against my body.

Recommended Reading
A doctor consults with a patient in an examining room.

Mortality Risk Greater for Men With SSc, Analysis Reveals

As I nose-dived into my 30s, my health continued to decline, with hypertension, heart arrhythmias, vasculitis, and nerve pain. My mortality was no longer waiting in the wings. It was front and center, daring me to grasp it.

I began learning about my options regarding end-of-life precautions. I knew that if things didn’t get any better, I was looking at not being around much longer. That thought led me to take the necessary steps to prepare myself and my family for what might transpire, including end-of-life care, a will, funeral desires, last rites, and selecting my healthcare proxy.

The first 10 years of scleroderma are typically described as the most difficult; they’re said to damage your body the most. So I was surprised when I rounded year 15 and developed severe pulmonary fibrosis and heart failure. I’d thought the battle was behind me. Boy, was I wrong!

Hitting the 15-year mark made me feel defeated, and every year thereafter added fuel to the fire that imploded my existence. I spent the next few years in and out of hospitals, dealing with surgeries to correct the consequences of scleroderma. I even spent my 38th birthday in the hospital recovering from stomach surgery to help correct gastroesophageal reflux disease and esophageal narrowing.

Nowadays as I look back over the decades of my life, I feel like mortality has been taunting me. From the day I first heard those three words — “You have scleroderma” — mortality was hot on my heels.

There’s something so horrifying yet so beautiful about realizing you have an illness that’ll take your life sooner rather than later. You get to walk through life slowly enjoying your moments for what they truly are: snapshots that develop into memories, a sort of déjà vu you can carry everywhere. An eerie sense of calm washes over you as you realize that while not every moment is enjoyable, they’re all pieces of a puzzle that make up your life.

For 21 years I’ve felt that I was living on borrowed time, and each day I opened my eyes was a blessing and a curse. I’ve faced living with a disease that takes no prisoners. I struggle each day with regrets of “what ifs” and “if only.” The pressure of being strong for my family and friends has created mental scars too deep to ever heal.

But I’m still standing tall. I’m still putting one foot in front of the other. I’m still pushing past the fear and pain that are my life to fight this disease for as long as I can.

We all have to come to terms with mortality. I just never imagined I’d be doing it at 40. Scleroderma has changed me and forced me to question the purpose of my life and my legacy, and for that I’m grateful.

Mortality isn’t a scary monster hiding in my closet anymore. It’s poetic justice. It’s taking back control of my existence, allowing me to execute my wishes and thank the people in my life who’ve held my hand and wiped my tears.

I used to think mortality was a countdown until the day my life ended. Now having faced the reality of my mortality decade after decade, I can reflect on my beautifully broken past and plan a peaceful, permanent departure from this life on my terms.

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.


Sedrick I Pace avatar

Sedrick I Pace

Living with Scleroderma has been so difficult navigating through life well over 40 years has taken its toll on my mind, body and spirit. It started at 21 and I’m now 62 and never thought I would see 26 year old. I have so many story that I’m willing to share all at so point before I die.

Chip Gagnier avatar

Chip Gagnier

I can relate to you situation. I have had scleroderma for 30 years but made a decision many, many years ago that I was not going to let it control my daily life. I have finger and toe ulcers. I have pulmonary hypertension. I have had six stents put in my heart but I get up every morning, look in the mirror, smile and tell myself that I am grateful to be here and I am going to have a great day !!!!!!!!!!!

Rosalyn Harwood avatar

Rosalyn Harwood

Thank you for yur has given me hope. My Dr. heard crackling in my lungs and so begins a journey. A pulmonologist wanted me to travel to Denver a 5 hr. drive for further evaluation...I said "no" and found a dr. an hour and a half away. he looked at my fingers and and asked if anyone had done an autoimmune blood panel. I turned out that I had Scleroderma which was causing the lung damage.Then I remembered the times my fingers would open up and drop things...I am thankful for the information on this website and hope to learn more to take care of myself.

stella velazquez avatar

stella velazquez

I was just diagnosed in June 2022. I am 59 years old and I am scared. Can anyone tell me what meds they are on? I was put on on methotrexate and now cellcept I have never been on meds and this is overwhelalming. Not to mention the discoloration of my skin and tighten of my skin. Are there any recommendations for lotions for the tightening and itchiness. And is there medication for the white patch skin? Any recommendations would be helpful.

Amy Gietzen avatar

Amy Gietzen

Stella, I would suggest finding a solid scleroderma specialist to bring all of these issues to. Each person with scleroderma is different and has different issues. So finding the appropriate care for yourself is important.


Leave a comment

Fill in the required fields to post. Your email address will not be published.