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To Those Who Say There's No 'Real' Diagnosis for My Symptoms

I’ve discovered a new disease. Well, not new actually. I’m not a doctor or a scientist, but that doesn’t mean I am not an expert. And I’m sure I’m not the first person to struggle with this. But no one seems to be acknowledging that it exists and that is wrong on so many levels.

Today, I sat across from my doctor and listened as he went over 40+ pages of test results with me. After seven years of fighting this vague thing we could only call “autoimmune disorder,” I was ready to finally hear my diagnosis — only it never came. My doctor showed me concerns with certain organs and hormone levels but said that overall, they were very pleased that my tests hadn’t come back worse.

“So what do I have?” I asked.

“Well, it looks like the best way to sum this all up is to say that this is simply the fallout of all those antibiotics you were given over the past several years for your infections.”

The fallout.

Sounds ominous. And definitely not simple. But let’s roll with it, because I want to know what exactly has stolen so much of my life from me. I want to know what to say when someone asks, “But why can’t you leave the house?” “Why don’t you have an immune system? You’re 28! You look perfectly healthy!” Or my personal favorite: “It’s not cancer. Quit making stuff up.”

I want to know the name of the monster that triggered my miscarriage and sent me to the ER countless times. I want to know what made my next pregnancy a nine-month nightmare instead of letting it be the happy, exciting time it should have been. I want to know what dark shadow stood in the corner of my mind, leering over me while I fought hours of anxiety, panic and depression while trying to maintain a “normal” life. It was even more overwhelming on the nights I couldn’t sleep or all the times I thought, “This must be what dying feels like.” I deserve to know what was hanging over of me, suffocating, on those nights.

My point is that this disease is real. Even if my symptoms don’t fit any known criteria of established conditions, I and the others like me deserve to have a diagnosis. We deserve to know the battlefield we are on. We deserve to have the validation that what we are fighting is very real. I should know, I have the test results and medical bills to prove it. Saying there isn’t a “real” diagnosis that I can be given is unacceptable.

I did everything right. I washed my hands, I took all the antibiotics they told me to, I avoided all my triggers like the plague. I went through endless scans, tests and met with 18 different doctors in two countries. I sacrificed dozens of traveling opportunities and events with family and friends because I was too sick. Seven years of uncertainty, fear and anger deserves a name.

And so, my sword is pointed at this new beast. The fallout. It could be worse. But it is my dragon to slay. Giving it a name gives me new strength. I will find its weakness. I will look it in the eye when I deliver the final blow. I will say, “You, fallout, have been defeated.” I deserve that much, after fighting this hard for this long.

There can’t be a battle against an unknown enemy. There can’t be a victory over a force with no name. Today, I’m declaring my intention to keep fighting against the fallout. Whether or not you agree this is a real disease, I don’t care. It is real to me, and thousands of others. We followed the right path, did the right things and still this happened to us. But I’d argue we are even stronger than the average person because we do fight against shadows with no real form or face. And we will continue to do so. I, for one, am not giving in.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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