My disease is invisible. I can go outside my door and smile at the world, and nobody would be able to detect the inexplicable exhaustion I feel. It’s a secret condition that feels like a slow walk through a swamp, leaden weights holding back every fiber of my being. Pain, there are a hundred ways to feel pain for someone as sick as me: in my bones, my fingertips, my clavicle, the place where my femur enters my hip — but nobody can see it. I smile anyway. I’m young, dark hair, brown eyes. I can’t be past 30, and with a little red lipstick, I’m almost pretty.
I’m always tired. I’m not sure if I’m suffering chronic fatigue syndrome, I really don’t think so. For a very long time the weariness I felt had no clear origin, until I found out I had the autoimmune disease, Spondyloarthpropathy. It basically means my own body is attacking my spine and other important parts responsible for movement, such as tendons and ligaments.
It also attacks my heart, not my physical heart, but the part of me that believes in myself. It’s hard being sick at such a young age. My way of thinking suddenly shifts from being comfortable to feeling different. When my body is on the prowl it wages war on my ankles. I find myself unable to get one foot in front of another, and eventually I’m in a wheelchair. It attacks my right hand next and then I can’t pick up a pen to write. I have a hard time brushing my teeth. I have a hard time eating. I have to say no to all the fun things I like to do: garden, play with my dog, explore a new travel location.
People judge the things you should be doing when you are young, and not what you are going through. Their expectation for how I should be living based on what they see isn’t the same as they would expect for someone in their 70s.
“You should be walking faster. You really can’t be in that much pain. You’ll bounce back, that’s what happens when you’re young. When I was your age, I could hike ten miles in under three hours.”
Just last year I was able to do that too until I got this stupid invisible disease. I also jumped off a 10 meter cliff into the Mediterranean sea, and now the very thought reminds me of death. I know for sure my body couldn’t handle it. My invisible disease requires drugs that suppress my immune system. I’m a walking target for infection, so please don’t sneeze on me.
I’ve grown accustom to adding all the symptoms I experience to my list of “reasons why I can’t sky dive, bungee jump, be like you when you were my age,” as if listing can better define the boundaries of my newly diagnosed health narrative. But being sick is a limitless condition, it can go on for months or be over in an hour. It forces you to be in the moment. When you feel good, you take advantage of it. Making a pot of tea is all of a sudden fun and exciting. So is brushing your teeth. When you feel bad, well there’s no telling where your mind can go. Mortality is imminent and the idea of death seems too close for comfort, especially when there is no cure.
I like to look back at the more energetic wilder me. I was always doing something: working out, driving around, cleaning my house, having lunch with friends, planning some new adventure. I felt I could conquer anything I set my mind to. Nowadays, my body fails me, and my mind follows along. I miss her. Funny how lack of good health magnifies the negative. It magnifies the worry and triggers that define your identity.
There’s an active dialogue I have with myself telling me what I can and can’t do. I know it’s not easy to get out of my funk. It takes continuous, repeated, daily discipline to tell myself “No! Stop being so down. You are a beautiful person and even if you’re tired, you‘re going to keep walking. You’re going to get out of it.” How many times should I say it to believe it? I try to do it for a thousand days and a million nights. Whatever it takes to reach my breakthrough. Whatever it takes. I miss the stars but hit the moon. Often.
Should I mourn for the girl I used to be? I’ve fallen from the energetic bursts of younger days to a woman, slow and deliberate in her every movement, not out of choice, but of circumstance. Should I say goodbye to the fire? I once could walk with my eyes closed, quick struts, and loud laughter; that passionate heat of life. Fallen away to a wiser movement, fluid like wine, but tired and aged. I feel too young to be this way. Too young to be there already.
So I write because it gives me something to do while I’m in bed. While I fight the droopy eyelids, the achey bones, and warmth of fur blankets. It’s my own way of walking, even in a wheelchair. I’m drinking my fifth cup of coffee and still — I’m a million reasons strong towards making the wrong decision to hug my pillow. That’s my invisible disease for you. I don’t wish it on you ever.