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Open Letter to My Autoimmune System

Open Letter to My Autoimmune System

Dear Body,

Well, here we are again, on the night before everything starts to roll. You remember last time, yeah? We were seventeen and they’d taken the bloodwork and there was a crazy Mississippi storm that night. Remember how we curled over and cried a little and then wrote some poetry? Yeah, it sucked – the poetry, and the night.

I’m not mad at you. I’m not breaking up with you. Partially because I can’t since, let’s be honest, you are me and I’m just personifying you to make sense of something that can’t be made sense of.

Maybe this was partially my fault. Faith fundamentalists would say I should have prayed more. Health fundamentalists would say I should have eaten better. They’re both probably a smidgeon right.

Maybe you did this because I delved into that childhood trauma in counseling, and I sat dry-sobbing in the coffee shop that whole Saturday, shaking so hard I could barely type up edits on my freelance job. Maybe the stress took you a step too far, and you turned on me. Again.

If I’d taken more care – of my faith or my health or my emotions – maybe you wouldn’t be spilling ketones and playing blood sugar seesaw. At least, that’s what the screwed up part of my brain says.

The other side of my brain quips, “To hell with it all – no one’s at blame but Adam.” This part is probably right, but I still stink of shame.

Whatever the cause and whatever the fault, I can’t change it now. I can alter my lifestyle, adapt for the future, but I can’t undo what my genes have concocted. And to be honest, right now adaptation is near the last thing on my mind.

Right now, it’s all I can do to breathe, and write, and wait.

Do you remember how we used to pull the blanket over our head and listen to Learning How to Die and Table for Two over and over like they were lifelines, during that year of misdiagnosis and uncertainty and late night terror? Do you remember how we lay in bed and said, “Goodbye, fingers,” hoping in the farewelling that the loss wouldn’t hurt so much?

Guess what: It didn’t work.

Need I remind you that we are 24? 24 is too young for three autoimmune diseases.

I know it’s not the end of the world. Whether it’s Type 1 or Type 2 or some other mystery disease, I know I’ll keep going. Not because I’m brave (please, let’s not be labeled), but because I have to. Life doesn’t stop just because your body is self-destructing.

Or maybe that’s too dramatic – maybe I should say, life doesn’t stop just because:

  • Your blood is trying to turn to acid
  • Your joints are coming apart
  • Your fatigue is smothering your brain
  • You wake up to find you were curled in the fetal position all night
    • You can barely walk for a while

We’ll keep going. We still need to finish writing our books. We still need to go to England and Iceland. We still need to find a real job. We still need to live independently. We still need to confront trauma and seek healing. That doesn’t change because you decided to pitch another fit.

I’m trying to say something that’s lodged between the base of my throat and the back of my chest but I don’t know how.

I’m tired of not feeling safe.

Tomorrow it starts again. I’ll probably get an immediate diagnosis this time, and then I’ll have to readjust my expectations and revisit my limitations and realign the structure of my days. Again.

Maybe I’m too theatrical or too self-focused and maybe I should say, “Hey, everyone’s bodies are breaking, it’s all cool!” But here’s the deal: Breaking sucks. And sometimes I think I’ve been broken enough for my 24 years and then some.

So here’s to you and I, the cynical. Here’s to us, the perpetually wrecked. Here’s to us, the empty.

And here’s to the coming years, may they be blessed.


5 Comments 1716 Views


  1. Oh Alyssa, my heart is sad after reading your post. You are such a gifted writer. Just wish it didn’t have to be this, and you, and personal. You are so strong, so brave, so bright. You will fight this again and you will win. You are strong and resilient. Is that how you spell it? Love you with all my heart even though I don’t really know you, but I know your mom, and dad, and so I love you as I love them. Hang in there…breathe, one step at a time, one day at a time. Praying for you. <3

  2. Alyssa – you are amazing and a brave human being – this isn’t a label it’s admiration. As you know, I’ve been going through a rough patch too, and feeling very very sorry for myself. Reading this makes me realise and appreciate the things I do have and remember that we all suffer in one way or another, whether it’s broken hearts, damaged minds or auto-destruct bodies. One foot in front of the other, one day after the next, one sunrise, one moon set, one more page of our books, one more night of soul searching and one more day of healthy eating – keep going girl and I will too. x

  3. I hope the news isn’t as bad as you think. People don’t get sick with auto-immune diseases because they didn’t trust in God or pray hard enough. The sad truth is, we don’t know why people develop rheumatoid arthritis or diabetes or–childhood leukemia, for that matter. But it’s not about insufficient faith.

    1. My logical brain knows that there’s no correlation, but sometimes it’s hard to feel the truth of that. I just need to keep telling myself until it sinks in.


  4. Holy cow. I absolutely cannot believe I met another Hollingsworth with an autoimmune disorder! I’ve had Type I Juvenile Diabetes for 30 years. It sucks, and your body sometimes hates you, but please vow to kick your autoimmune system’s ass! I’d love to help support you, if you need it! Otherwise, keep up the amazing work with your writing!

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