How I React When People Are Uncomfortable With My Illness

I was diagnosed 16 years ago with a rare, chronic autoimmune disease called systemic scleroderma. Finding out I was sick changed me and my whole life, but it also changed everyone’s lives around me. My parents, my siblings, my friends, my co-workers, my boss, even strangers whom I’ve only met once were affected by my illness.

At first things stayed fairly “normal.” I think because I did not necessarily look sick it was easier for everyone to go on with their normal routines like everything was just dandy. However, as I started to get worse, my body started to develop physical changes that definitely stood out to someone looking.

My skin started to become hard and tight and shiny. My facial appearance changed drastically. My lips thinned out dramatically and my mouth became smaller and smaller, causing it to be more and more difficult to open my mouth wide. The color of my skin became darker and I developed red blotches on my arms, back, neck, chest, face, legs and thighs, called telangiectasia. The most noticeable change I would say was my hands. They became so tight and hard that I would get really bad sores on my fingertips. After so many sores came and went, I ended up losing almost all of my finger nails and some of the tips of my fingers due to the sores. My fingers also became contracted and curled in and looked almost like claws.

 

To be honest, I looked almost 100 percent different from when I was first diagnosed. That is when I started to notice how people would treat me differently. People would outright stare at me and some even whispered to their friends about me while I was standing just feet away. Others would go so far as to point and giggle or even approach me and flat out ask me what happened to my arms or my face and if I was contagious! I could not believe how rude and insensitive people were. Strangers who had never even met me were gawking and laughing and whispering about me and it did not feel good at all, but the worst of it came from the people I loved.

My parents and my siblings were really good about never making me feel like I was an outcast or like I looked strange. They were and still are a wonderful support system for me. Other members of my family and some of my friends I did not get the same treatment from. You know the saying “sticks and stones will break my bones, but names will never hurt me?” Well, unfortunately names do hurt. Even now, 16 years later, names and staring and whispering does hurt.

Over the years I have had to learn how to get a thick skin (ironically) when it came to the name-calling and the inappropriate comments or rude questions. I had to be OK with myself and accept the fact that people are going to 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. It makes them nervous and worried. They wonder, “Will I get what they have?” “What if that happened to me or someone I love?” “What should I say to them? Should I comment about them being sick?” I’m sure a thousand questions and concerns run through their head when they see someone like me who looks different and they have no idea why or what happened to me to cause me to look this way. So they immediately go into panic mode trying to figure out what the right words to say are, or what they shouldn’t say to me.

Illness makes people feel uncomfortable and that is why they spew out rude comments or ask inappropriate questions or stare at you and and then whisper about you. It’s because they have no idea how to act in front of you and you 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 the way they did to me. But it became more and more clear as time went on and I gained more and more confidence within myself that it was not me with the issues. I was perfectly fine. Yes, I may look different. Yes, I may have a chronic illness, 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 you see would get. I cannot change the way people act, but I can change their ignorance. So I educate people about scleroderma. If I see someone looking at me oddly, I speak up and say, “Hi, my name is Amy and I have scleroderma. Do you know what that is?” I try to change the way people react to something different by teaching them that sickness isn’t so scary and if you learn more about it you might not feel so uncomfortable the next time you see someone who looks different than you.

Illness is scary, and for someone who knows nothing about it, yes, it is uncomfortable for them and they do not know how to respond to it. But if we can teach people about our illness and allow them to know we may be sick but underneath we are the same loving “normal” human beings as them and we both bleed the same color, then maybe, just maybe, the next time they see someone who looks different they will think twice before staring or laughing and whispering about someone who is just trying to be as normal as possible and live their life.

It isn’t my fault I was diagnosed with scleroderma, but I do believe I have a responsibility to educate people about what scleroderma is.

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