To the Girls in the Store Who Were Laughing and Pointing at My Hands


Last week I went shopping with my dad. We went to Target and to bunch of other stores. In the winter months my dad always drops me off at the front entrance. Whether it is Target or my doctor’s office, he pulls up and lets me drag myself out of the nice warm heat into the crisp, cold, Buffalo air. He then pulls away and goes to park the car.

When I get through the extremely heavy doors (because in Buffalo in the winter, we shut off the automatic door openers because of the wind) and actually into the store, I grab a cart and take it immediately over to the sanitized wipes they have over by the customer service desks. So I am wiping my cart handle down and I hear laughter behind me. A group of three or four teenage girls were gathered behind me waiting for the sanitized wipes. So I turn my head back around and start to clean my cart again.

Now I know I don’t necessarily look sick. If you didn’t know a thing about scleroderma and you saw me, you’d probably think I was a perfectly normal women. The only real telltale sign are my hands. So as I continued to wipe my cart I hear tiny gasps behind me, not very loud but I could hear them, so they definitely weren’t whispering. Then I heard one of the girl’s say in a hushed voice but loud enough for all her other friends to hear, “This girl is so slow! I could be checking out the cute boots over there by now.” Then her friend replies in the same hushed tone, “Dude, did you see her hands, I think her dog bit all of her fingertips off! OMG, so gross!” and another girl chimed in, “That’s probably why she is so slow, I mean, look at her hands.”

 

A small smile crosses my lips at that moment. I am fully aware of how my hands look and how they may shock or offend people. All of my fingernails are gone except for three fingers and a thumb on my left hand, and my thumb and pinkie on my right. I had the misfortune of getting really, really severe ulcerated sores on my fingers when I first was diagnosed and gradually with each sore, the skin gets infected, turns black and dies. Normal people who get sores get a scab, and when the sore heals underneath the scab falls off and the skin looks right as rain.

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People like me, who have scleroderma, have a very hard time clotting, so we do not get scabs – we get infections, or the skin becomes gangrenous, turns black and dies. So we can’t regenerate new healthy skin. With each sore my fingers would get smaller and smaller. The nails would fall off or I would get a sore underneath the nail bed and the fingernail would have to be removed along with the dead skin with special “debreedment” creams, and if that didn’t work, I would have to go to a wound care specialist. They would have to scrape the black, dead skin off to give the healthy skin underneath room to heal. To say that having the skin removed hurt is being very, very kind! So I knew what the girls were looking at and why they had that reaction. I did find it comical that she thought a dog bit my fingertips off, and it was because I was missing some of the tips of my fingers that I was taking such a long time with my cart. Not because the cart I had was disgusting.

So I went along with it. I waited until I knew they were looking at me and whispering about my hands, then turned around and said, “Do you girls know where the dog food aisle is?” Every single one of their mouths dropped in shock. One of the girls stammered out “aisle two,” while the rest of them still had their mouths gaping. As I turned and walked away laughing silently to myself, I heard the same girl who made the comment about the dog say, ”Man, she must really love her dog to keep it after he did that.” That made me burst out into a full-blown laughing fit! Teenagers are quite gullible, but really, girls – you’re giving us women a bad rep.

As I continued pushing my cart up and down the aisles, I started to think to myself about how many other times someone has spoken about my appearance in a negative way, or has actually approached me and asked “why does my skin have red spots?” or “why does my mouth look so small and my teeth so big?” (I’m not kidding – someone actually said that to me). It made me think back to those times and how hurt I would be by those comments. When I was newly diagnosed and my body started to change, I was very self-conscious. Who wouldn’t be? Then to have a stranger point out to you the thing you’re most embarrassed about in front of other people? That was soul-crushing. People can be very cruel.

collage of photos of amy gietzen with the caption 'the many faces of scleroderma'

I just couldn’t understand what made these people want to speak so unkindly to someone they had never met. When I look at someone and comment about something, it’s usually in a positive way. Like I’ll comment about how I love her shoes or about how maybe she should wear that with a different pair of pants. I’ve never approached a complete stranger and told them they look weird, or asked, “Why did they put on that top this morning? Because it’s hideous!” Sadly, even if I did say those unkind things to someone, that person has the opportunity to change their top or fix their hair, if they so choose to. Someone living with a sickness like scleroderma or who has a physical difference does not get that luxury. I can’t just take scleroderma off for the day and wear it tomorrow.

We as people are so free with our words and open with our emotions. Look at Facebook and how people tell strangers about personal things. Like how I am right now. That is a great thing – however, I’d much rather a person approach me and ask “why my fingertips are gone,” or ask me a question in a positive way instead of pre-judging and speaking about me negatively. That way I don’t feel uncomfortable or bad about myself. People do not think about just how deep their words can cut someone.

If someone approached me in a kind manner to ask me a question about my appearance, the outcome would be much different. I would feel comfortable enough to answer their questions. They could leave having learned about something they had no knowledge of before they met me. In a perfect world, I would not even have to write this article because there would be no such thing as negativity. One can only hope, right?

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