Sunburnt: Chronically Misunderstood

My face is red, in fact my whole body is red. The severity of the redness changes- sometimes it’s only faint, and other times I look like the human embodiment of a tomato. Most of the time I’m somewhere in the middle. This is not a new experience, I’ve dealt with severe flushing since shortly before the start of my health issues. After my recent diagnosis of Mast Cell Activation Syndrome, we assume that’s probably the cause, and it is sometimes exaggerated further by over-heating from POTS. No matter the cause, my face is red and people have a lot to say about it.

Everyone and their mom thinks I’m sunburnt, and also thinks it’s okay to comment about it to me. “Do you have a sunburn?” “Why are you so sunburnt?” “Do you always look like this?” “Is you’re face always that red?” “You should wear sunscreen!” “What’s wrong with your face?” I could go on, but I think you get the point. Every time this happens I use a response similar to, “No, I’m not sunburnt, this is just my skin.” and I stare blankly back at them.  That’s when things go to the next level of awkward. You’d think people would be embarrassed that they made that completely uncalled for and inappropriate comment, but they never are, not even the slightest bit. I usually get an uncomfortable look from them and another comment like: “Oh well I wish my skin was like that!” or “That’s weird that your skin does that without being in the sun.”

“Oh well I wish my skin was like that!” is my least favorite follow up comment. No, you don’t want to have skin like mine. It isn’t cute or pretty, and it doesn’t have to be. Do not patronize me by acting like it’s desirable. Not everything in life is pretty, and that’s okay. I’d rather acknowledge that it doesn’t look good then live in some fairy tale world where everyone wants to look like a tomato, because that simply isn’t true. The comments are abundant during the summertime, since that’s when the most people are sunburnt. For the record, I am not offended by these statements/questions, they are just really annoying.

I used to be super self-conscious about my skin, but I feel better about it now than I ever have before. I can chose not to wear make-up and still feel good about myself, which used to be something I couldn’t do. Most of the time I still wear makeup though, because the comments are tiring and I don’t want to answer questions about it. Although, even with makeup on, the redness in my skin is still very visible. When I was self-conscious, the comments definitely made me feel worse than I already did about my appearance. One of my least favorite things about the flushing is that when it’s the worst, I usually am feeling really terrible, and the last thing I want to do when I’m feeling sick is explain to people why my body does not look how they think it should look. Existing in public while feeling ill is worse enough, dealing with comments like these only adds insult to injury.

Moral of the story? Just don’t comment on other people’s appearances, don’t ask questions that are none of your business, and if you mess up don’t make it worse by making another dumb comment.

 

 

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Remembering Claire Wineland

Claire Wineland was a pivotal member and advocate for the chronic illness community. She was a 21 year old with Cystic Fibrosis, who passed away on September 2nd, 2018, a week after she received a double lung transplant. Claire was everything I aspire to be as an advocate, activist, and human being. She was outspoken and honest, she was funny while always being very raw about the realities of living with a terminal illness. Claire didn’t sugar coat things or act as if living with a chronic illness was easy. One of my favorite quotes from Claire is:

“Death is inevitable. Living a life we can be proud of is something we can control.”- Claire Wineland

I’m not one to call disabled people inspirational given that we are constantly used as inspiration porn for the able-bodied, however Claire was an inspiration to me. When I think about the person I want to become, so many qualities that Claire had come to mind. I hope one day I can be as care-free as Claire was. She was a giving person who started Claire’s Place Foundation, an organization that helps support families living with Cystic Fibrosis financially. In her death, Claire continued to be a self-less person by becoming a organ donor.

My life has been touched by Claire Wineland, and I’ve never even met her or had any conversations with her. I cannot imagine the terrible loss her family and friends must be feeling at this moment. Claire will forever be missed by the chronic illness community, and we will forever be indebted to her for her advocacy and generosity over the years.