I have lupus. Which also means I have the characteristic “butterfly rash” on my face. It covers my cheeks and my forehead and looks vaguely like a butterfly. Now it just looks like a sunburn, but in years past it was not so benign looking. For roughly 2 years approximately 75% of my face was covered in white scaly skin that looked similar to plaque psoriasis combined with a bad case of eczema. As you can probably imagine being an 18-20 year old was slightly hampered by my appearance.
Yes, people stared. A lot. But I learned to ignore them. What was significantly more difficult to ignore was the neverending barrage of strangers coming up to me and asking
“what’s wrong with your face?”
Or “why is your face so red?
You’re an alcoholic aren’t you?”
Or “Are you contagious? You shouldn’t be allowed out in public”
My stock answer was that I had a sunburn.
That seemed to placate most people.
But I shouldn’t be bombarded with personal medical questions from complete strangers.
I shouldn’t be embarrassed to leave the house.
It’s been mostly under control for years now. Only flaring up occasionally. But now I have topical medication and pills to alleviate the symptoms. It only looks mildly red.
But if I get a sunburn the redness is much more pronounced.
That’s what happened today. I went to a charity walk forgot to put sunscreen on. My cheeks and forehead were a good shade of deep pink. After the walk I went to a dinner party. Within minutes of sitting down at the table, one of the dinner guests- a middle aged Italian woman- blurts out: “what’s wrong with your face? Why does it look like that?”
All that old embarrassment and anxiety came rushing back like it had never left. I managed to smile and say softly “oh its nothing I got a sunburn earlier”
Normally I would have said something like “well I have lupus and it causes redness on my face” and then watch the person squirm uncomfortably as they realize their insensitivity.
But I wanted a nice uneventful evening. And I wasn’t really mentally prepared for such questioning. It has been a long time since I have been asked questions like that. So I didn’t say what I maybe should have.
But you know what? I shouldn’t have to say these things. I should have to always be on my toes with the next comeback or the next teachable moment in regards to my own health.
That’s not to say that I won’t talk about it. On the contrary, if someone is respectful and says to me “oh wow did you get some sun?” Or “you are a little flushed, are you warm?” I would be happy to explain everything.
I guess it boils down to:
Just be kind. Everyone is fighting a battle you know nothing about. Be kind always.