From Denial to Acceptance: How I Embraced Life With Scleroderma

Amy Gietzen avatar

by Amy Gietzen |

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Over 20 years ago, I was introduced to scleroderma at the tender age of 19. Our introduction was brief and pretty one-sided. The doctors told me I was sick. They shared that scleroderma was incurable and could be fatal. In that moment, I thought, “Nah, that won’t be me!” At the time I looked and felt fine, so I figured I’d be the exception.

I didn’t know it then, but that was the first time denial would poke its head into my subconscious.

One of my first symptoms of scleroderma was pain. From my fingertips and toes to my ears and the inside of my nose, my body was painted with ulcerated sores. Because of scleroderma’s effects on the skin and vascular system, these sores are slow to heal, and the pain they cause goes way beyond an aching or burning sensation.

At my wound care appointments, I was asked to rate my pain level on a scale of zero to 10. I used to chuckle to myself as I wondered, “How can anyone possibly describe their pain with a number?” The pain of these sores rendered me unable to speak, think, or move. Sometimes the pain was so bad it made me physically ill. Even then, I thought that this would all pass and my life would eventually return to normal.

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Denial was a soothing place to hide. I could push away feelings of angst and unpleasantness and focus on the pretty picture I painted in my mind. I’d file away any emotion I didn’t care to deal with.

But eventually, denial caught up with me, and facing reality was unavoidable: If my wounds didn’t heal, doctors would need to amputate two of my fingers.

Suddenly, denial was no longer a happy place for me. All the emotions I’d filed away came rushing to the surface.

Anger: “Why is this happening to me?”

Sadness: “Will my life ever be the same?”

Isolation: “No one understands what I’m going through.”

I became overwhelmed by every thought and feeling I had chosen to overlook. I had a sinking feeling that scleroderma was much worse than I had imagined.

The path to acceptance

It took me a long time to get a grip on my emotions. I leaned heavily on my family and friends for support. I also had to realize that this disease wasn’t going away. Little by little, I began to gain my footing.

A big part of my scleroderma acceptance journey was getting involved in my own healthcare. I became a curator of my body, mind, and soul by taking an active role in my treatment plans and lifestyle management.

Educating myself and embracing the shortcomings of being a young adult with this disease enabled me to let go of my anger and sadness and begin to embrace a life I could live. I worked hard to find a place where scleroderma and I could coexist. I have found that putting my needs first and being mindful of how this disease affects both my physical and mental well-being are game changers.

Those of us with diseases like scleroderma tend to focus on the symptoms we can see or hear. We sometimes overlook the symptoms that affect us mentally and emotionally.

Yes, scleroderma changes your body, from the way you look to the way you eat, or even how you shake someone’s hand. But scleroderma can also affect your mental health, potentially leading to depression or anxiety. This disease has a way of consuming you. It can take over your entire life if you let it.

Somewhere along the way, I chose to accept myself as a woman living with scleroderma. I chose not to let the disease define me. I decided to fight for the things I wanted most: a career, independence, and the ability to help others.

By making that conscious choice, I was able to lead the life I desperately wanted in spite of my disease. I began to feel comfortable in my own skin again, and in turn, I started to embrace my life in a whole new 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.

Comments

Freida Rogers avatar

Freida Rogers

I have lived with systemic scleroderma for over 25 years" I have the type that affects the digestive system. It kills all the mussels so makes swallowing and digesting difficult. I also have Raynauds to go with it.

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CHRISTOS MANITARAS avatar

CHRISTOS MANITARAS

Hi Amy! I m happy to hear you can face and overcome the symptoms of scleroderma . As i can see you face a lot of trouble as fibrosis, PH etc. My wife (64y.o has scleroderma since April 2018 and faces severe fibrosis -TLCO 27% and low to medium PH (<30mmHg) -. Could you mention the medication you receive ? Thanks a lot

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Amy Gietzen avatar

Amy Gietzen

Hi, Christos, I am sorry to hear your wife is struggling! For my lung issues I am on several medications (Traclear and Cilias) for my scleroderma I take (Cellcept and Actemra) However every person living with this disease is completely different. I would suggest finding a scleroderma center close to you and speaking to a specialist about her symptoms.

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CHRISTOS MANITARAS avatar

CHRISTOS MANITARAS

Thanks a lot for your quick response! I see that every person is different ! "There are not diseases but just persons" the the professor at university used to say! The main specialist in Greece is the "reumatologist" doctor. She takes cellcept and Ofev. I think she will start using bosentan after next RHC. Bets wishes

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Bob lyon avatar

Bob lyon

Amy this post is late , you are a personal Hero from a far I’m 62 looking at 63 ? Scleroderma Scc my heart and good thoughts and prayers and COMFORT are with you .

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Amy Gietzen avatar

Amy Gietzen

Bob,
Thank you for your post. I appreciate your positive thoughts and prayers. Be well.

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Arcelia avatar

Arcelia

I was recently diagnosed with scleroderma, it is affecting my esophagus and I have severe acid reflux. The constant inflammation of my hands is terrible. I also suffer from severe facial numbing. From just below my eyes to my chin. My teeth, gums , and tongue are also numb. Is this also a symptom? How do I find a support group?

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Amy Gietzen avatar

Amy Gietzen

you can head to the National Scleroderma Foundation's website, and it allows you to search for scleroderma centers in your area of the state!

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