“You look so pretty! How can you be sick?”
Great, I thought, as I forced a smile. Another comment that was meant to be a compliment, but it secretly grated on my nerves. Why is it when I am complimented or we as a community of people with illnesses/conditions are complimented, there has to be an additional comment referring to our illnesses? Why can’t I just be pretty? What do my conditions have anything to do with beauty? Is that what people see when they look at me? My conditions?
I had put on makeup that day, feeling half-human and telling myself this would be good for me. It would give me something to focus on instead of the relentless pain shooting down my spine and into my legs. I was starting to regret putting on what felt like a gallon of makeup and a pound of spray in my hair to tame weeks of cramming it into a sloppy bird’s nest on the top of my head.
I was tired of looking tired. I was tired of the acne I had developed from the prednisone I was taking, and my jeans were tired of it, too, as I had started gaining weight. I just wanted to cover up everything in my mind that made me look sick. My thinning hair, my weight, my skin, the bags under my eyes — all of it plagued me. I was starting to look how I felt, and at the time, I still was limping from a torn labrum. I wanted to mask any reason for anyone to judge me. This is one of the many things I have started doing regularly since my body betrayed me years ago, and it’s still something I am struggling with to this day.
I have heard everything from, “You’re young, you don’t know about joint pain” to “Do you take supplements? I bet if you started taking turmeric, you wouldn’t feel so drained all the time!” However, my personal favorite has been, “Well, you look fine, so how can you be disabled?”
When you are met with remarks as these, it’s almost as if a switch is flipped and your anxiety and depression goes into high gear. There are moments when you feel guilty for eating out or doing something as simple as a walk in the park or going to the salon. If you are enjoying yourself, how can you possibly be sick? If you appear happy, then how can you be in pain?
You try to explain things to people about your conditions (mine happen to be ankylosing spondylitis and Ehlers-Danlos syndrome, along with sub-conditions that go along with them.) But to others, it sounds as if I have a curse that came out of one of the Harry Potter books — ankylosing spondylitis! Poof! Alas, I have no magic wand to wave to repair my body or to magically make others see how commenting on my appearance or health sends me and others I have come to build friendships with up the proverbial wall.
To truth is people will always have opinions, and what I have learned is you owe no one an explanation of your appearance. You owe no an explanation of your pain level to anyone.