I’ve learned to embrace all of the emotions that scleroderma causes

Accepting my feelings is difficult, but it's crucial to my growth and healing

by Amy Gietzen | March 15, 2023

Scleroderma is like a forest fire, raging from one body part to another. Flames of pain engulf me, leaving parts of me scorched and destroyed. For over two decades, I’ve been rebuilding my life from the ashes constantly left by scleroderma. I have fought through symptoms, pain, disability, loss of control over my body, and many challenging emotions.

Still, there are times I feel selfish for feeling unlucky in life. Isn’t there always someone who is worse off?

While that may be true, it doesn’t make living with an incurable illness any easier. Why do I feel like I’m not allowed to be sad about my circumstances?

Going through the motions

When I was diagnosed with scleroderma in 2001, I felt nothing. I didn’t comprehend what it would mean for my life or what I’d be dealing with in the future, so I took the news on the chin and carried on. It wasn’t until I started to research my ever-changing symptoms and saw a scleroderma specialist that I finally understood the gravity of my diagnosis and began to contemplate the “what ifs” and “could have beens.”

Periodically, feelings of self-pity would creep into my head and leave me with a pit in my stomach. I felt guilty for feeling sorry for myself, so I tried to push my pity aside. Why? Was I not allowed to carry the weight of my truth? Is no one allowed to pity themselves? If so, who made up that rule?

It took me a long time to sort through my feelings of guilt and worthlessness. Scleroderma made me look at my life in a totally different manner. Instead of seeing the positives, like my family, friends, and hobbies, I focused on the ways scleroderma was negatively affecting my life, body, and emotions. Eventually, I ended up in a downward spiral of depression and had to go on medication to control my emotions.

Why I Tell People I’m OK, Even When I’m Far From It

Coming full circle

Over time, I’ve taken steps to accept everything that scleroderma has brought into my life.

I embraced the positive people in my life and leaned on them for support. I immersed myself in activities I enjoy, like painting, sewing, and helping others. In telling my story to others facing similar issues, I even allowed the ugly, self-serving parts of myself, which I’d hidden for so long, show through.

Ultimately, I gave myself a pass to feel it all — the good and bad, the happy and sad.

I have come too far in my personal growth journey to let this disease dictate if and when I sift through my raw emotions. It all comes back to one simple rule I’ve learned: Don’t let the things you can’t understand dictate your path in life.

Scleroderma has taught me to live my truth

It took some time to realize what my truth looked like, but when I finally let go of the stigmas around my feelings and leaned into living life on my own terms, I felt secure. Do I know what the future has in store for me? No, but I’ve accepted that this disease has sealed my fate, and as dark as that sounds, I’m OK with it.

Scleroderma has upended my entire life. In the early days of my diagnosis, I felt ashamed and uncertain. Now, after working through my emotional disdain for my ever-changing body, my deficits, and my feelings of self-pity, I have found a clear focus: allowing myself to embrace whatever feelings come my way.

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.

Comments

Latarsha

Thank you for this article. I understand and can relate to the emotional rollercoaster this disease brings. Scleroderma has changed my life as well. I'm taking it a day at a time. The unpredictable pains and feelings are what bother me most.

Rita Doyle

Yesterday, at my IVIG infusion center, a woman completed the last of her chemo treatments, and got to "ring the bell." Everyone there in our chairs hooked up to our bottles and bags cheered loudly. Her children and grandchild were there for the ceremony.
I'll never be done with treatment and I'll never ring any bells. That made me so stinking sad. I was diagnosed in 2007, with minimal, barely noticeable symptoms until 2021, when a routine surgery triggered a crazy intestinal flare.
I hope and pray for more research and better treatment.

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