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What Living With Conversion Disorder Has Taught Me

When I was 17, my body stopped being able to digest food properly. Everything would either cause excruciating pain or make me nauseous and I’d throw up. Sometimes the pain would get so bad that it would cause nausea. I went through test after test to try and find the root cause, but nothing came up. “It might just be stress,” I was told. For a while, I was sustaining myself on Gatorade and protein shakes. The doctors settled on diagnosing me with irritable bowel syndrome (IBS).

When I was 18, things escalated. I started to have daily, unexplainable “episodes” that could last up to two hours and consisted of full-body convulsions that looked similar to a seizure. Again, I went through endless tests to rule out epilepsy, brain tumors, neurological conditions, etc. The doctors were stumped. On more than one occasion, I was accused of making up my issues and faking my seizures. I think that part hurt the most — how could I possibly be faking this? My entire life was falling apart. I was failing classes at university and would sometimes run out of class to have an episode — I was even kicked out of school and had to appeal to get back in. Eventually, my hands would just permanently shake — I could no longer write or tie my shoes. Sometimes, I’d be walking and my legs would turn to jelly and give out, and I’d be in a heap on the ground. Or I’d wake up in the morning and my legs would feel paralyzed, with me unable to move. I’d often lose feeling in my arms and legs and just have to wait for the episode to pass. I would also regularly have intense pain in my arms and legs, either consistent pain or strong, sharp pains that felt like really intense muscle spasms. I remember gasping for air when the pain was so bad it winded me. Why would I make that up?

Luckily, after six hospitalizations, endless dead ends and countless dismissive doctors, I got a psychiatrist who assigned me a diagnosis: conversion disorder. I had never heard of this before. Conversion disorder, also known as functional neurological disorder, is essentially when your brain gets a bit mixed up and often psychological trauma is manifested as physical ailments. My doctor explained it to me as the emotion centre of my brain would try to send signals to the logic part of my brain (this is how we process what we are feeling and understand our emotions) but the message wasn’t getting there, so the emotion centre started to “misfire” and send signals to the motor cortex instead, which caused uncontrollable movement. Unfortunately, there’s no medication or instant cure for this — instead, I had to try and retrain my brain by working with a psychiatrist and therapist to manually send emotions to the logic part. Essentially, I couldn’t access my emotions and therefore couldn’t release them, so my brain tried to release that tension physically instead.

Conversion disorder is really scary and frustrating — for a while, it felt like it was ruining my life. Sometimes I still feel that way. Although I’m doing much better now and have seizures every few months when I get really stressed or triggered, I still live with a lot of the aftermath. The constant strain on my body when things were bad caused permanent damage, and I struggle to walk long distances or do physical activity. The pain of that damage is consistent and flares up when the weather changes or when I get stressed. The nausea and stomach issues have persisted, and I have to be really careful and mindful about how my digestive system is doing. My hand cramps up after a few minutes of writing. Sometimes, the tremors in my hands return when I start to feel even a little bit nervous — most of the time, you’ll find me with my hands shoved in my pockets where no one can see.

The hardest part of my diagnosis is that it’s really lonely. Most people have never heard of my condition, and many don’t understand how it can manifest in so many ways. It’s hard to find doctors and therapists that are willing to take me on because they haven’t heard of this condition before. It’s also easy for people to forget I have physical limitations because I look physically OK; I hate having to ask people to slow down for me, or excuse myself from things because my body can’t handle it. I know I’ll never be able to do the things that most people my age can do, and I’m working on learning to be more OK with that. But I also think I’m learning that it’s OK to be sad about it, and it’s OK to grieve the things I wish I could do.

But on the flip side, my diagnosis has given me incredible insight into how my mind and body work. I don’t have the luxury of ignoring what I’m feeling — I have to address things head-on and work through them. I have learned so much about how to get in touch with myself and my emotions. I have learned how to listen to my body, and pick up on the subtle cues that let me know something is wrong. I’m learning how to advocate for myself, my needs, and my health in my personal life and with medical professionals. In the past 10 years since this started, I’ve gotten to know my body and my mind more than most people do in their entire lifetime. And that, to me, is a gift I am lucky to have. I am also so much more grateful for the things we often take for granted because I know what it’s like to lose them, even if only temporarily — like the ability to walk, or write a birthday card, or enjoy a meal without being sick. That gratitude and appreciation for seemingly small things is such an important and guiding perspective in my life, and I wouldn’t trade it.

Photo by Kilarov Zaneit on Unsplash

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