Let me be real with y’all.
This is real life for those of us living with ichthyosis…
**Disclaimer: I am not sharing this for sympathy or pity. I am just sharing this so that others can see what people with disabilities have to go through. And to show you that life is real…it’s not all sunshine, photoshoots, and perfect scenery.**
Well, it’s finally happened. I had my first rude comment about my skin at the store where I work. (That doesn’t mean people haven’t asked about it since I started working there in June, but this was the first rude interaction.) Those of you living with some sort of disability probably understand what I mean when I say that I could sense it coming. It was in the way she was looking at me. I was bracing myself for it. Then, once I finished ringing her out and she should have been on her merry way, she says bluntly…
Customer: Your skin is peeling.
Me: Oh, it’s a rare skin disorder I was born with.
Customer: I just wanted to let you know that your skin is peeling.
Me: Again, it’s a rare skin disorder I was born with.
Customer: Is it contagious?
Me: If it was, I wouldn’t be out in public. (I’m also thinking I wouldn’t have been hired if that were the case.)
Customer: (very rudely) Well, you never know. I just wanted you to know that your skin is peeling.
Then, she walks away. Sigh. Sometimes, I can’t even. Like lady, I know my skin is peeling. I can see it. And why on earth do you think I’d be waiting on you if I was contagious? And if you were that worried about it, why didn’t you ask for another cashier to ring you out?
I wish I could tell you that I let this roll of my shoulders like I always do, but as the day wore on I found myself tired…
- feeling like I have to tell people what I have
- my skin shedding everywhere
- feeling self-conscious about my skin anytime I’m at another person’s house
- not being able to wear what I want
- always having my guard up around strangers
- the stares, the glares, the double-takes, the rude comments
- people thinking they know how to treat my skin
- fearing that I will never find a guy who will be able to love not just me, but my skin too
There truly are days where I wish I could have the freedom to not live with all this weighing me down every single day. Don’t worry, I will work through these frustrations and exhaustion and bounce back. But sometimes, I need some time to work through the stifled emotions of how difficult living with a visible disability can be.
That’s real life, folks.