Conversion Disorder—The Taboo Diagnosis

My wonderful podcast guest Shannon got me inspired last night to tell my own story of conversion disorder. Unfortunately by the time I edited and posted the podcast episode it was nearly 1 AM and I desperately craved my bed.

For me, it is somewhat unclear when exactly #conversiondisorder began, because looking back I can see plenty of times when I could have had the aura for it, or times when my hand went completely numb for a couple of days, but it was attributed to #fibromyalgia or cervical radiculopathy.

The big one, however, the one episode that can’t be explained away by anything but conversion disorder, happened January 2019. I feel like I said it happened last year in the podcast, but 2020 was the longest ten years we’ve had so far.

Late one night in January 2019, I woke up to some fierce tingling in my face and my foot. I know it sounds weird to say the ‘tingling’ was fierce, but until you experience this odd sensation, you just can’t know. It’s very difficult to describe. It’s like severe nausea of your muscles.

I felt like I must be having a stroke. It seemed to go on for an hour, when in reality it probably was only a few minutes. I was able to go back to sleep, although I’m not sure why I didn’t get up. When I woke up in the morning and planted my feet on the floor, I felt ok. Just a bit dizzy and shaken.

It was when I stepped down with my left foot to take a step, however, that I felt that horrible intense tingling shoot through my foot to my heel and ankle, and when I went to pick it up again, I simply couldn’t. I put a sock and shoe on it and drug it around the house for a couple days before calling my doctor, because honestly the rest of me felt fine. My face and arm were still numb but at least I could use them.

When I went to the doctor, he seemed to think it was a bit more serious. That was when I started to freak out a little. I’d already been googling things that cause #footdrop , so I was thinking maybe MS or spinal injury, but I wasn’t going to let my mind go there until it had to.

He mentioned MS and said we should get an MRI, and then made an appointment with my neurologist, who, frankly, I hated. He didn’t know how to type or use a computer, so he spent the entire appointment yelling at “this damn thing” and didn’t listen to me at all. If the problem wasn’t right there, bright and shining in front of his face, he didn’t want to deal with it. And he hated fibromyalgia patients. Almost as much as he hated disability patients.

To make matters worse, my doctor set up my appointment with my neurologist for a checkup for complex migraines, not MS, then prescribed me something to treat my migraines himself. So when I got an appointment like two weeks later with my neurologist, he was mad I was in his office “for nothing”, and was basically refusing to even look me over.

I had to ask him to do a neurological evaluation, and when he was done, he flippantly said that this was just a reaction of my fibromyalgia to stress, and I needed to have #cognitivebehavioraltherapy. There was no mention of conversion disorder, but later on I would find out that he put it in my chart.

I did go to CBT, but I didn’t stop searching for answers. Sure I had something going on, my family and I packed up and went to Texas to see a specialist, who also agreed I had *something* going on. This was April 2019, and I’d just recently stopped using my wheelchair to get around all the time, but I relied heavily on my walker.

She did a very thorough evaluation, watched me walk, took about a pint of blood for testing, etc...,even had me do a spinal tap, which is abhorrent—but she didn’t find anything conclusive. She said I should still see a neuroopthalmologist because they could tell definitively if I have optic neuritis, but she couldn’t specifically rule out MS without me seeing one.

Of course, here in Iowa you can’t get a referral unless you already have a diagnosis, so I’m stuck in this weird limbo of having and not having a serious illness. I try to just not think about it. It’s unfortunate that diseases are best treated when caught early, yet you can’t get diagnosed and treated in backwards states (like Iowa) when you‘re not in an advanced state of disease.

It’s taken me a while to be officially diagnosed with conversion disorder. This past summer, 2020, was the #derecho , or land hurricane. I had a small reoccurrence of my previous symptoms (numbness on the left side and foot drop) about a week after the storm. I also developed these twitches in my face that haven’t gone away, which make it hard for me to hold facial expressions or smile.

My GP feared this was my second relapse of MS, and sent me back to the neurologist. Thankfully mine had retired by this point (is it petty if me to have kept the letter?), and a nice, friendly, fresh-faced gentlemen had taken his place. This one actually listened to me, took in what I had to say, and looking over my past records, ordered an MRI.

Thankfully the one lesion I have is still stable, so he referred me back to my GP and psychologist...but still he did not say conversion disorder. I had to read that in the notes of my #MyChart .

After googling, I knew it was something I needed to discuss with my doctor, or my therapist, or both. I had read that it was a neurological condition...so why was I being referred away from neurology? And why hadn’t he even mentioned the name to me?

I’d had a lot of hope that I was finally going to be taken seriously and treated with respect by this field of medicine, and all of that was dashed behind my back. I felt pretty low.

The more I read about conversion disorder the sadder and more frustrated I became. Another “mental/emotional” disorder with no treatment and no cure. I felt betrayed. I felt like I was just being fobbed off yet again.

Then I brought it up to my psychologist, and she made some really great points. She told me one thing that really helped me come to terms with this diagnosis: that conversion disorder is a very real diagnosis, but it isn’t meant to explain everything that has happened to me. I still have endometriosis, I still have fibromyalgia, I still have hyperthyroidism, etc..., no one is saying those aren’t real. No one is saying my experiences haven’t been real. And most importantly of all, what I experienced with the paralysis and foot drop was real too.

With conversion disorder, something in the brain turns the body’s stress response into a physical manifestation. It could be blindness, seizures, paralysis, etc..,but what’s important is the patient can *not* make this happen voluntarily. That was really important for me to hear, that medical professionals know we are not doing it on purpose, and can’t make it happen on our own.

I have fully come to terms with the fact that I have conversion disorder with abnormal motion. I am also wondering if my psychosis (or ghosts) could be part of my conversion disorder as well.

————

Do you have conversion disorder or have you been having strange symptoms that have no explanation? It may be worth a trip to the psychiatrist/psychologist or neurologist (or both!) to be evaluated. This is a relatively rare condition, but it is gaining more acclaim in the medical community.

if you’ve been diagnosed with conversion disorder and are willing to share your story with us, please hit up the contact section. You’re not crazy, lazy, faking, whatever people want to tell you. This is not a shameful diagnosis. This is a real disorder.

For more information, please visit the Mayo Clinic Website(https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197), FNDHOPE(https://fndhope.org/), or I encourage you to do your own research with reputable sources.