Building Back My Confidence While Living With Scleroderma

I survived years of being laughed at and called names because I am different

Amy Gietzen avatar

by Amy Gietzen |

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I was diagnosed with scleroderma in 2001. Finding out I was sick changed my whole life, and everyone’s lives around me. My parents, my siblings, my friends, my co-workers, my boss, and even strangers I’ve only met once were affected by my illness.

At first, things stayed fairly “normal.” I think because I didn’t necessarily look sick, it was easier for everyone to go on with their routines like everything was just dandy. As I started to get worse, my body developed physical changes that stood out to someone looking.

My skin started to become hard, tight, and shiny. My face changed, thinning out my lips and making my mouth so small I had difficulty chewing and swallowing. The color of my skin became darker, almost like a year-round sunburn, and I developed red blotches called telangiectasia over my entire body.

The most noticeable change was in my hands. They became so tight and hard that I’d get sores on my fingertips. After so many sores came and went, I ended up losing almost all of my fingernails and some of the tips of my fingers. My fingers also became contracted and curled in, looking almost like claws.

Now, 21 years later, I look almost 100% different from when I was diagnosed.

As my body changed, I started to notice how people would treat me differently. They’d outright stare at me; some even whispered to their friends about me while I was standing just feet away. Others would go so far as to point, giggle, or even rudely approach me. They demanded to know what happened to my arms or my face and if I was contagious!

I couldn’t believe how insensitive people could be. Strangers were gawking, laughing, and whispering about me, and it did not feel good at all. But the worst of it came from people I loved.

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My parents and siblings were good about never making me feel that I was an outcast or looked strange. They were and still are a wonderful support system for me. Other family members and some of my friends didn’t give me the same treatment. You know the saying, “Sticks and stones will break my bones, but words will never hurt me”? Unfortunately, words do hurt. Even now, 16 years later, names, staring, and whispering hurt.

Over the years, I’ve had to develop a thick skin (ironically) when it comes to name-calling, inappropriate comments,  or rude questions. I had to be OK with myself and accept that people will be scared of things they know nothing about. After some time, it became easier to let the harsh words of others roll off my back, even when the words came from someone close to me.

I began to accept that sickness makes people uncomfortable, nervous, and worried. They wonder, “Are they contagious? Should I ask what’s wrong with them?” I’m sure a thousand questions and concerns run through their heads. They have no idea what happened to me to cause me to look this way. So immediately, panic sets in, and they try to figure out what to say or do in my presence.

That’s why many spew out rude comments, ask inappropriate questions, or stare and whisper. It’s because they have no idea how to act in front of me, and I freak them out!

For the longest time, I thought it was me. I thought I was the ugly duckling, and that was why people would react to me the way they did. But the more confidence I gained, the more I realized that it wasn’t me with the issues.

I’m perfectly fine. Yes, I may look different. Yes, I may have scleroderma, and yes, I may need help with things here and there. That doesn’t make me a freak or strange, nor does it warrant rude behavior or harsh remarks from people.

I deserve the same amount of respect any other person would get. I cannot change the way people act, but I can change their ignorance. So I choose to educate people about scleroderma. Nowadays, if I see someone looking at me oddly, I speak up and say, “Hi, my name is Amy, and I have scleroderma.” I choose to teach them that people with scleroderma aren’t so scary. I show them that if they educate themselves, they might not feel so uncomfortable with someone who looks different from them.

Illness is scary, and for someone who knows nothing about it, yes, it’s uncomfortable. But if we can teach others that having an illness doesn’t mean we bleed a different color, the next time they see someone who looks different, their reaction might change. They might think twice before staring, laughing, and whispering.


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

Nathalie Forcier avatar

Nathalie Forcier

Amy, I don’t know if you have diffuse scleroderma and whether you would fit the eligibility criteria, but have you considered a stem cell transplant? It is becoming much less controversial and could stop the progression of the disease, even improve your condition to a certain extent.

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Amy Gietzen avatar

Amy Gietzen

Nathalie, thank you for the suggestion, but I have tried to apply for the transplant twice, and both times I did not meet the criteria. But thank you for suggesting it and for your concern.

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Lisa avatar

Lisa

Amy…. I feel like we are twin spirits with the same condition. But Jesus is Lord over Scleroderma and all it’s ramifications and He gives me His strength and Grace to get through each day and brings amazing love and blessings to my life through doctors that haven’t given up on me all these years. I was diagnosed in 1994 and I am 65 years young now. With God’s help, I look back and KNOW my life is better now than ever as my heart, wisdom , compassion, patience, self love, lord and strength grew up like it never would have. Dentures, anal prolapse, fingers deformed, interstitial lung disease, bronchioecctasis, pulmonary hypertension, ….lol!! But I can do all things through Christ Jesus who strengthens me! On minute at a time. To God be the glory for sustaining us and bringing joy to our world and those around us by our example and unique , memorable looks …. Trust God and do a good deed every day, And May God’Grace and peace be multiplied to every scleroderma patient in Jesus name amen.

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Amy Gietzen avatar

Amy Gietzen

Thank you so much, Lisa.

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