I Don’t Know How to Talk About My Illness Anymore

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I Don’t Know How to Talk About My Illness Anymore

I spent the entire morning throwing up. The entire morning. All of it. Throwing up. That’s not hyperbole.

And in between heaves, to distract myself from the bile, the grittiness in my teeth that never seems to go away, I scrolled social media: Like. Love. Laugh. A comment. A share. Did you know I sent those from the vomit-crusted edge of a warm toilet seat? Probably not.

I don’t know how to talk about my illness anymore. 

I used to, back when it was newer, when symptoms were emerging, treatments still promising, and pain a fresh foe I knew I would, I could, defeat. I’d write about how porphyria (and the maddening amount of comorbidities that have accompanied this diagnosis) forced me to reckon with life and death and what it meant to go from a healthy 20-something to a chronically ill 20-something. 

Now I’m a 30-something and still reckoning. Some people compare illness to a war or a battle, but those have ends, right? Victories? Defeats, even? 

What I would give for a defeat.

Instead, I’m stuck in permanent porphyria limbo. The symptoms aren’t new anymore. The prognosis is stale. And the pain is as pervasive as my breath: there with every inhale until I die. 

How do I talk about this? And who wants to hear it? 

Sometimes I read a terrible news article, one about the inhumane suffering and torture of someone far away, someone I’ll never meet, but someone who’s pain and terror reaches for my empathy with invisible pleading arms, and I lose myself in the grief of helplessness. I have to click away, put down the news, and disassociate from the suffering of others. It feels like abandonment when I do, but also like self-care.

Is it self-care, then, when I disassociate from myself? I’ve spent days floating above my body, like a Sims character, except I’m the little green triangle above a tired blonde head representing consciousness. Sometimes, when I played the Sims as a child and created utopian Elle in her perfect little Sims house, I’d drown her anyway, or lock her in a fire closet and watch her panic and die. Then I’d feel bad. Why did I do that? Am I a monster? No. It’s the distance, I think. The idea that this avatar I’m controlling isn’t really real, and isn’t really me. 

Except it is. And I find myself scrambling back down into my body to remind myself that, yes these are my burning bones, my twisting joints, my unsteady footsteps, and my aching liver. That’s me vomiting into the toilet right there, right now, heave, heave, heave

We are not two separate entities, me and the vomiter. We are the same. 

But I wish we weren’t.

I don’t know how to talk about my illness anymore. It’s too much a part of me even as I struggle to distance myself from the poison that floods my veins. I wish I could be angry at something, at an external threat, a bacterial, a virus, a growth or a mass, or even an injury. But this disease is in my DNA. It’s as much me as my hair, my skin, or my yellowing teeth because it’s anyone’s guess whether they’ll taste more bile than water today.

So instead I carry my illness with me like a second brain, an eleventh finger, or a third nipple. All the illness, all the pain, all the symptoms are as constant as my breath: breathe in, pain-nausea-vertigo, breathe out, pain-nausea-vertigo, breathe in….

And together we move my little Sims Elle to the next thing because we’re building big things, right? Beautiful things? Joyful things? Things that make it all worthwhile? 

So get up off the floor, Elle. Take a shower and scrub your burning skin, Elle. Put clothes on your broken body, Elle. Don’t look in the mirror today, Elle, you don’t need that negativity. But respond to that text you forgot about when you were throwing up, Elle. Be sure to take your meds, Elle, yes even the ones with the side effects almost worse than the symptoms. Oh, and eat something, Elle, eat something even though it tastes like ash, even though it hurts to swallow, hurts to sit in that stomach that’s always aching. You might throw it up, but I’ll be there for you when you do because we’re in this together, Elle. You and me and porphyria. And when we’re feeling better, we’ll smile real big and talk about anything else because— 

I don’t know how to talk about my illness anymore. 

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