How a diagnosis fundamentally changed my understanding of the world and myself.

This could also be titled "How FND made me feel well and truly crazy for the first time."

I used to not know if I was a Cartesian Dualist or a Monist. I felt my thoughts and my body as separate things, but I believed my thoughts arose from my brain, which also experienced sensations in the body. I have a long history with depression, and I also have chronic back pain from being in chairs or cars too goddamned much. I try to walk, to meditate, to eat more healthily. I thought I was doing well.

Last year, I was at my family's for the holidays. Travel has been stressful, but not more-so than usual, and my partner and I are happy to share some good news with my relatives, we were going to join the park service, I had lost almost 100lbs over the past two years, I felt hopeful for the first time in...ever? At dinner, my hand won't grip my fork. I have to awkwardly eat with my other hand. Appallingly, my mom notices. I have some other minor issues, everyone is worried, but it doesn't seem like an emergency so I promise to book an appointment as soon as I get home.

At home I begin having times where my limbs become frozen in place, occasionally painfully contorting, sometimes I can’t talk. The earliest I can get an appointment with a primary care physician is 6 months away. I have constant fatigue, and the smallest physical exertion can put me in bed for hours. We decide to put our plan on hold until I have a diagnosis. Over weeks the symptoms fade. We're still worried, but maybe they are over. Trump guts the park service.

Feeling better finally, I decide to try and go back to school instead. I begin the application process for grad school, reaching out to references and starting my essay. I’m having more migraines, but I’m spending a lot of time at the computer, that’s probably normal. I get everything submitted just as an even worse wave of symptoms hit. This time I’m having limbs flail about, my dominant hand seems like it is controlled by a dickhead older brother that likes holding things just out of reach, I’m tired all the time. I lose my spring to this, but nothing seems like an emergency.

I finally get the appointment, my blood work is good. My doctor listens, seems to care. I get a neurology recommendation. Neurology calls to schedule. The earliest appointment is 11 months away. I freak out, feel hopeless and angry. Some family members make noises about reaching out to neurologists they know, nothing comes of it. Whatever, I guess I have no choice to wait. I’m depressed, I don’t get out of bed some days, but I have no neurological symptoms.

My partner gets our first in-person job since COVID, they’re very happy. The night before they start I have a seizure, my first. I was walking down the hallway when my legs began to feel heavy and my head swimmy, I barely make it to the bed before crashing onto it. I immediately begin uncontrollably trashing for over a minute. Afterwards I can barely speak, I’m confused as well. They make me go to an ER, insisting that this is an emergency. Walking to the car is like moving in a bad nightmare, my body won’t move right and the world is moving around me. We make it, symptoms are fading by the time I’m admitted. Tests are run: EKG, Head CT, more blood work. There’s nothing immediately killing me, but they want me to see neurology so I’m sent to another hospital. 14 long hours after getting to the hospital we get to talk to a neurology resident. I’m so exhausted I barely remember the conversation, but she’s able to get my appointment moved up and schedules more tests.

Another month of horrible, debilitating symptoms. I’m not always sure I should be driving, but my partner doesn’t and they have to get to work. I get 3 MRIs, covering my whole CNS. I get an EEG. I get the results of all the tests. Nothing. I get my appointment with Neurology just before Thanksgiving, more questions are asked. Everything physical is ruled out. I’m diagnosed with Functional Neurologic Disorder (FND). It isn’t my hardware causing the problem, but a glitch in my software. She says someone will reach out to find any in-network psychologists or psychiatrists who do FND-focused CBT. [Side-note: This terrifies me. For one, most people don’t have positive experiences with this CBT for FND. But also, CBT isn’t as effective for autistics as it is for allistic people.]

I’ve had therapy, a lot of it. I’m currently in therapy again, working to understand my gender-identity and how my self-realized autism affects me. I know what depression is, I feel my mood. I’m used to having my mind disable me. I know what that feels like, I thought I knew how to manage it. I was sure something was wrong with my body, I feel this in my body. But apparently I wasn’t successfully dealing with my depression, or autistic burnout, or w/e. I was making no strides at all, because instead of feeling depressed now my body is shutting down. But I can still feel depression, because not knowing how capable my body will be tomorrow makes me fucking depressed. I feel fucking hopeless, because my brain is now an unreliable narrator. And the worst thing is I don’t even feel stressed when the symptoms come on most of the time, its fucking random.

Now I know I’m not a Cartesian Dualist, or a Monist, because there is some third thing at play. Something I can’t interrogate directly. In my mind thoughts exist, negative self talk, mood, etc. I can recognize it, I have tools to help deal with it. I have to meditate, I have to not beat myself up when I struggle, I just need to make sure to do one productive thing a day, etc. In my body pain exists, I have to stretch, to walk, to not spend too much time in chairs or my body works less well. But now there is a thing that is turning stress at the prospect of trying to get a job, or of imagining a career, not into thoughts but into physical symptoms that yet don’t exist in the body? I’m doing this to myself, but I don’t want to. It feels far outside my control. My mind and body are both at the mercy to this other thing, this thing I can’t interrogate or feel. I can’t predict my capabilities, I don’t know if I’ll be more or less disabled in the future than I am now. How do I plan a life around this?