How I Learned to Live Beyond the Challenges of Conversion Disorder

“Conversion disorder is a mental condition in which a person has blindness, paralysis, or other nervous system (neurologic) symptoms that cannot be explained by medical evaluation,” according to Medline Plus.

I have been diagnosed with conversion disorder (CD) for three or four years now, but I can trace my symptoms all the way back to age 16 when I suffered a traumatic brain injury. I was also going through a lot of trauma between the ages of 10 and 19, specifically around age 16 as well.

My symptoms started psychologically. I suffered from visual, auditory and tactile hallucinations, as well as uncontrollable behavioral impulses and unstable thoughts. I was misdiagnosed many times; I was treated for schizophrenia with medication and even electroconvulsive therapy (ECT) until I started having residual issues from it.

They treated me for every “common” psychiatric illness, and nothing seemed to fit. I was only getting worse, both mentally and physically. Every treatment that failed made me more depressed, hopeless and suicidal. I honestly felt like I was going insane. I was trying to explain something was wrong, but I couldn’t express it properly and the people around me didn’t seem to understand that something other than just psychosis was happening.

I lived in the hospital pretty much year-round as my suicidality became overwhelming with each failed treatment. I had to be supervised 24/7 and lost all quality of life. I mostly went to the hospital’s high school and even graduated there in an empty office with my nurses, teacher and two other patients/students who were just there for the cake.

When I turned 19, I went back to school and tried to do a few classes at my local college. I was halfway through my classes when I started having seizures. Everywhere and anywhere. I’d have grand mals, petite mals, absence seizures, etc. I just barely made it to exams before I was so sick I was bed ridden. I quickly started having other issues. Verbal ticks, constant shaking and mobility challenges resulted in me requiring a walker.

I went through the next year undergoing tests and protocols and more tests, until a nursing student mentioned conversion disorder. I ended up finding a specialist eight hours away, traveling there and back each week for months until I had to move to this far-away city alone so I could do daily treatment.

Over the years my symptoms grew and grew. To this day my symptoms include: seizures, verbal and physical ticks, selective mutism, hallucinations, periods of blindness, periods of hearing loss, periods of partial or full paralysis, disassociating, mobility issues and more.

Even more concerning, I was getting very injured. I suffered concussions on a weekly basis from falls, and I often had cuts and bruises on my face. I hadn’t worked in years, couldn’t live independently and honestly didn’t see a point in living if my quality of life didn’t change.

I worked with my doctor for two years. We did psychodynamic talk therapy, dialectical behavior therapy (DBT), medications, physical rehab and anything else he could think of. My entire life revolved around getting better. And then my doctor told me the most painful thing I’ve ever heard:” I don’t think this is working, and I think we should stop trying.” I was told that symptom remission wasn’t possible in my case as my CD was operating outside the normal realms that he was used to, and until medical science caught up I would need to figure out how to survive with my condition (something I had rejected during the entire process of treatment).

I never thought that I would have to just be “OK” with this level of life quality; I had always thought we were going to get to a point of symptom remission. I’d be lying if I said I took that news easy and was graceful about it. I struggled with it and rejected it, trying everything in my power to avoid what I perceived as “disabled things.” I didn’t want to use elevators or avoid concerts because of the flashing lights triggering seizures. But at some point, I realized the only person I was screwing over was me.

I’m not saying it happened over night, but somehow (over the last year and a half), I managed to figure out how to do things despite my CD, and surrounded myself with people who reminded me it was not weakness or failure to accept help or utilize disability resources. If using a wheelchair allows me to go to the concert I want to see, I’m no longer going to allow my pride and self-pity to convince me to not utilize my resources. I got tired of sacrificing experiences for conversion disorder — I have already sacrificed so much.

It’s weird for me to say, but at this point in time I’m living with my partner, going back to school and am honestly happier than I’ve actually ever been. And I still have symptoms every day. I learned that life quality and symptoms don’t need to correlate, and my symptoms don’t need to dictate what kind of life I live.

Conversion disorder has made me a better person in some weird way, and as I work towards my goal to be a registered art therapist and CD advocate, I know that my experiences have made me the perfect person for the job.

I hope this encourages anyone in even the slightest, or comforts someone who is in a similar situation. It gets better. I didn’t think it did until recently, but man does it ever…you just might have to change what “better” means to you.