How My Invisible Illness Is Visible

People like to call my chronic illnesses and disabilities “invisible”. I’m still not sure why; perhaps it’s to downplay the seriousness of these conditions or perhaps it’s to somehow encourage me in a weird, twisted way. I can understand where the term is coming from, really I can. It’s fairly obvious that Crohn’s disease isn’t as visible as, say, cancer. You wouldn’t look at me and be able to tell I had Fibromyalgia or Autonomic Nervous System Dysfunction. Asthma isn’t visible because you can’t see my lungs. And I get it, I really do. But in spite of all these (very valid) arguments, I say that my illnesses ARE visible. If you look closely, you can see.

If you looked at my hair, you would see the dull color and thinning strands. Thanks to years of dehydration, malnutrition, and vitamin deficiencies I can kiss my healthy hair goodbye. Oh and, so long Rapunzel. Prednisone, chemo drugs, and maintenance medications have turned me into a more Tinkerbell-like head.

If you looked at my arms, you would see greens, blues, purples, and yellows. No I don’t have tattoos. I have bruises from infiltrated IVs, painfully unsuccessful blood draws, and blood thinning medications. I like to think I’m walking art, but really I just look like I’m searching for my next high.

If you looked at my eyes, you would see dilated pupils from pain medications I need to get through some days. Glazed over baby blues with a trace of cynicism and a large amount of pain, searching for something hopeful to hold onto – yep those are mine.

If you looked at my body, you would see stretch marks from weight loss and weight gain. Acne from steroids, rashes from allergic reactions, scars reminding me of days that I didn’t want to live anymore. They’re all there and painfully visible.

You see, that’s the thing. My diseases aren’t invisible. Crohn’s disease is visible in my scars and steroid-induced moonface. Gastroparesis is visible in my bloated tummy and skinny wrists. Fibromyalgia is visible in my slow, crooked gait. Postural Orthostatic Tachycardia Syndrome is visible in my purple hands and pale skin. Chronic migraine is visible in my squinted eyes.

But more than this, more than the illnesses themselves, hope is visible. It’s visible in getting out of bed every morning (even to just change pajamas and get cozy again). It’s visible in smiles that break free, even during ambulance rides. Hope’s visible in taking another breath, and trying to eat again. It’s visible in having a Superbowl party after a hospital admission. It’s visible in jokes said before surgeries. Hope’s visible in me.

#crohns #ibd #spoonie #gastroparesis #dysautonomia #fibromyalgia #invisibleillness