Living With Scleroderma Means Battling Traumatic Experiences

A columnist shares how she responds to chronic illness and trauma

Lisa Weber avatar

by Lisa Weber |

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All I wanted was to grab a plate of leftovers. Instead, I got an emotional beat-down from a bowl of freshly cut pineapples.

The sight of pineapples always zaps me right back to intensive care, where I was recovering after having six strokes. I couldn’t have visitors due to the pandemic crippling the world. So my nurse tried comforting me with a bowl of pineapples. Her kind gesture still warms my heart, but it also reminds me of the suffering and fear I felt at that moment.

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Traumatic experiences are never erased

That’s the thing about traumatic experiences — I’ll never fully recover. Trauma lives deep in the cells of my body, waiting for the tiniest triggers that force them to the surface.

I often share details of the physical damage that scleroderma has done to me, but I rarely mention how this autoimmune disorder has caused my body a lot of trauma as well. And I relive that trauma when I least expect it.

Words can also be triggers. It was almost nine years ago when I sat on top of an exam table while an unfamiliar rheumatologist broke the news to me that I would battle scleroderma for the rest of my life. After I was struck with the new reality of living with a disease that has no cure, he went on to shatter what was left of my composure. His words will forever haunt me: “We don’t know how many years you have. It could be two, five, twenty, forty?”

To this day, the moment I hear someone say something like, “We don’t know how many …,” I am immediately transported back to that crushing moment. I can vividly hear how steady and emotionless the doctor’s voice was. I can still hear my heart screaming out.

And every time I get a burst of pain in my chest, I flash right back to 2015, when I woke up from a routine bronchoscopy to find out that half of my heart was paralyzed from Takotsubo cardiomyopathy, also known as “broken heart syndrome.” I still feel the hospital air blasting me as they rushed me down the hall. And I can still smell the sterile wipes the team of nurses used to scrub my body the moment I entered the cardiac ICU.

Learning to carry on after trauma

As the years go by, I collect more traumatic experiences. Since these triggers keep growing, I’ve had to find ways to cope when they take hold of me emotionally. But coping is a very personal thing — what works for me may not work for someone else.

Every time one of these moments runs me over, I intentionally say to myself, “I survived the trauma!” It seems so simple, yet it packs an incredible amount of power. It makes me feel strong. I know that my survival has been a battle — one that I keep winning! Saying these four words reminds me that I’m better in the present moment. It’s like being able to turn off a scary movie with one button.

I can’t stop these traumatic experiences from resurfacing. They’ve become part of my life’s story. They’ll continue to pop up from time to time. But I’m prepared to tackle them head-on. I’ll keep reminding myself that the “movie” has ended, and today, I’m a survivor.

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.


Susan McCracken avatar

Susan McCracken

I read and enjoy your writings. I was diagnosed 32 years ago at Cleveland Clinic with scleroderma (progressive systemic). When diagnosed they gave numbers like you received but they didn’t go as far as 30 or 40 year survival. I only was given 5 to 20. I think in thirty two years treatment has improved. I taught school and have now retired. I have had similar trials but I bless every new day.
Thank you for our updates. SMc

Jannie avatar


I love this post. You always help me to feel not so alone.

Pam Kendig Stower avatar

Pam Kendig Stower

I am so happy I joined this news I receive every day. Some days I want to read it and some days I don’t. I have had scleroderma for 25 years I am almost 65. I also have Iterstitual Lung disease. I worked in open strip coal mine in Wyoming not sure if that’s where I got it or my Laurent’s smoking 24/7 in our home, car everywhere we were surrounded by the chemicals in those packs! I was told I have 3- 5 years after I was diagnosed with lung biopsy. I have been on Ofev from the time FDA approved it! I had to go on and off because the side effects are so bad. But it truly kept my PFT test stable for the 5 years I had taken it. I am getting worse but I stay quiet, this disease is a silent one. Amd the word the way it is (I am a Liberal) I am not to assured our democracy will be here in 2024. So I hope I do die soon. But I thank you for the honesty and I wish I would have found you all a longtime ago! I’ve had 6 amputations on my fingers so forgive my errors. I pray someday they find a cure for this silent disease! I am donating my body to science! Me surgeon talked me into it because I have very severe Raynauds amd I am hoping someday with my gift of my old body can help you it will be worth going out of our tradition. My God is good, amd I truly pray for WORLD PEACE AND I STARTS WITH YOU!


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