Conversion Disorder and What it Means For Me

I was diagnosed with Conversion Disorder in 2019 after a series of medical tests with no conclusive cause. The doctor who finally told me this was likely the diagnosis was a kind, knowledgeable doctor who is so good at explaining things in a way that I could understand. 

Conversion Disorder is similar to PTSD in its root cause, starting after a physical trauma or intensely stressful situation. For me that was my experience giving birth to my son, George, in 2016. I had lost so much blood that when I tried to scoot upward to eat that I suddenly couldn't breathe. I've written about this experience before and how grateful I was to the team of nurses and doctors who saved me from going into Cardiac Arrest. 

It felt like I had sustained nerve damage in my left arm for over a year after all of the blood transfusions, but when it was confirmed that I have Protein S Deficiency, I realized that it could have been any number of issues from nerves to blood clots. 

I was also bedridden for weeks. Too dizzy and short of breath to do much of anything. This was a painfully long recovery, and likely the physical trauma that led to conversion disorder, although I had no clue what that was at the time.

I had several small bouts of fatigue and weakness that I attributed to being out of shape. I was "weak" and "lazy". I needed to push myself more. And so I did. And then I would be in bed for two weeks recovering each time.

In 2018 I went with Justin to a library conference in New Orleans and completely overtaxed myself physically, but it was amazing, and I had a wonderful time. 

Ten days later I began to feel a tremor in my left hand. Over the next few weeks, the tremor spread to both hands. It felt like my skin was always buzzing. My speech began to suffer, because my mind felt a weight on it. I couldn't speak as fast, and I developed a stutter. 

I began to lose strength in my hands at random times, and I kept dropping things by mistake. Within a month I began to lose coordination in my legs. I needed a cane to keep from falling, and for a short time I borrowed a wheelchair. 

A doctor suggested it might be MS, but by the time I was able to see a neurologist and get an MRI, over three months of this had passed. I was on the tail end of it. I could walk carefully without a cane (though I still felt more confident when I had it with me).

Every test was normal. The neurologist suggested I see a therapist, and I was frustrated at his obvious skepticism. I wasn't faking it. Why would anyone fake this?

Months later I found a new doctor, because I was having pain in my ribs. Turns out I had a few dislocated ribs, but that's neither here nor there. 

When we went over everything that had happened in 2018 and all the little problems I've had with anxiety wearing me out, he said, "It sounds a lot like conversion disorder." I had never heard of that, but as he explained it and we discussed medicines to help treat anxiety, I felt hopeful.

Over the next year I tried to take it easy, being careful not to overtax myself, failing at times, succeeding other times. I do feel the anxiety medicine helped me get back on my feet a lot faster though.

In the early fall of this year I felt stronger out of nowhere. More excited and energetic. It felt like a hypomanic episode, but who was I to deny the gifted surge of energy. And I did a LOT. I worked on several art projects and challenges, wrote stories, moderated twitch streams like a champion. I was supermom, supermod, and I was finally accomplishing personal goals. I felt unstoppable.

Then came Thanksgiving. Our home had suffered in cleanliness during 2020. We agreed to invite my nephew over, and we cleaned like crazy. I had a fool's hope that because I had already been doing so much that I would be okay.

I was not okay. Within a couple weeks I developed a tremor in my left hand, stuttering, began to lose strength at random moments, and I had to intensely focus to walk straight. And all night and through the day it feels like electric coils are buzzing under my skin. I'm upset with myself for not being more careful. Upset that a little stress triggers it so badly that it takes 3 times as long to type a text message because of my shaking hands.

I know this is neurological and that learning to manage stress is the key to keep myself from relapsing. I want to be like John Nash, who with the medicine and sheer force of will was able to manage and rise above his Schizophrenia. I want to be able to utilize my mental acuity to be able to will myself back to normalcy.

But until then, my hands shake every day, my speech is slow, my skin feels electrified, and walking is difficult. All I can do is wait and plan for the future. 

Thanks for listening.