This Is What It's Like to Have a Rare Mental Illness

In November of 2015, I was nearly 21 and in my junior year of college. I now know what the trigger was, but at the time, neither I nor my parents had heard of conversion disorder/functional neurological disorder.

My mom and dad, an ER nurse, and an ICU nurse of 20 years were all at a loss. A 20-year-old with sudden-onset neurological symptoms and no prior history. The only family history of non-trauma related neurological disorders was my paternal great-grandfather’s fatal aneurysm at 60-years-old.

The symptoms developed rapidly over the course of 12 hours.

Things were scary, at least for my parents. I was unknowingly (however, noticing and verbalizing the behavior) exhibiting the la belle indifference, a phenomenon in CD/FND that describes the patient’s lack of concern with would-be symptoms of life-threatening illness. This is found in patients with episodes triggered by psychological triggers (not all episodes are triggered psychologically; some are physiologically triggered). My first symptoms included right (dominant) side dysfunction and weakness, a drop in the right leg, a severe stutter (with no prior history of stuttering), tremors (though particularly severe in the right hand), localized headaches to the right side, and severe cognitive deficit. The MRI, CT and chest X-Ray all came out normal, and the episode only lasted about 10 days. Between the first and second episodes, there were some lingering, less intrusive symptoms, but it was manageable.

Fast forward to June 23rd, 2016: I’d been tachycardic since January of 2016. They put me on 60 mg Propranolol extended release as a non-cardiac patient to treat idiopathic tachycardia, presumed to be anxiety related. It dropped my heart rate from 120 beats per minute to 74 beats per minute in the span of about nine hours. Here’s where the physiological episode began. My body was like, “What? No. What did you do? Stop. No. No. I didn’t sign up for this.”

The second episode included worsening symptoms from the first, extreme weakness in the right arm, the feeling of crawling on my legs, random pin-like sensations on different parts of my body, intensification of symptoms with heat exposure, severe weakness in my back, moderate back pain, and an “on-off” neurological phenomena (a speaking stutter but clear singing). When I’d sit up straight to maintain posture, my whole torso would shake violently. My head would bob, but the tremors in my hands would stop. I’d lost the biological survival signals that said, “Don’t forget to eat,” and “You haven’t had any water in six hours — you might want to grab a drink.” I had to set reminders and Post-it notes to remind myself. I was dizzy. My right foot started to turn inward when I walked. The bottoms of my feet would tingle to the point of burning, and it didn’t take a whole lot for my legs or hands to fall asleep or get that “pin” feeling. My muscles would twitch intermittently, my balance was awful, and my legs gave out on me without warning. I was “losing” chunks of time, had blank spots in my memory, as if someone had ripped the page from a book.

I had seizures, but not tonic/clonic seizures. Dissociative seizures. I’d go partially catatonic. I’d stop in the middle of what I was doing. I couldn’t move. I’d recognize someone was speaking to me, but I couldn’t respond. I had trouble processing what they were saying to me. It lasted anywhere from 30 seconds to six minutes. I had trouble understanding what people were saying to me — piecing together their words to form the sentences was a challenge.

The episode lasted from June 23rd, 2016 to August 26th, 2016. I marked the end with the dissipation of the stutter. However, I had problems eating and staying hydrated for the better part of the following year. I still stumble over words. My memory is still terrible.

Here’s my advice to anyone with CD: Be your own advocate, especially if you have co-morbid mental health conditions like I do. When I saw doctors, they looked at my medication list and health history, and dismissed my symptoms. They just said “conversion disorder” and walked out. The first neurologist ordered a cervical MRI, noting “You don’t have to do this, but…” He cut me off, spoke over me, and didn’t listen. As a result, he missed the spondylolisthesis, found in a CT scan looking for kidney stones.

Don’t let doctors side-eye you because you have a history of mental illness, or for any other reason. Make your needs as a patient clear. Don’t let yourself become a statistic. Not all doctors have this attitude, but some do. It’s something we as CD/FND patients, patients of any kind, need to be aware of.

I was out of work for nine months. These episodes will knock you down hard, but don’t let them keep you down. I’m back in school, working again. There is hope. Psychotherapy, medication, any sort of physical therapy needed for physical movement disorders associated with the CD, and speech therapy are available. Get it done. It’s going to kick you while you’re down, but stand up and shove it right back, because you’re the one in control.

You are not your CD.

You are not you mental health disorder.

You are not your physical health disorders.

You are who you want to be.

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Getty Images photo via maroznc