'3 days after my summer holiday, I lost feeling in the right side of my body.'

"Sometimes I wonder if you live here!"

My housemate said this to me one early July morning while making herself a coffee, watching me unpack my backpack in a chaotic spiral while running late for my weekly 1:1 because I couldn't find my laptop charger amid my dirty laundry… again. 

I had just come back from a road trip around the Scottish highlands, and I only had three days in Edinburgh before I'd be taking off again on the train to London for two nights—and then flying to Cyprus for a week-long getaway. 

Unfortunately, I'd already exhausted my annual leave for the year, so I was doing all of this while also working full-time (albeit, on the opposite timezone to my manager). 

It had become a sort of running joke with my manager that each week when I logged on to our Monday morning meeting she would ask "Where are you?" before asking about my weekend.

Sophie likes to travel a lot. Image: Supplied.

And the question was more than validated. My family hardly knew where I was on any given day, let alone my boss who I only saw (virtually) once a week. 

Back in September 2022, I was hired as the Deputy Editor for Forbes Advisor Australia—a completely remote role.

My first week at Forbes correlated with my 25th birthday, which was also the age I had planned to move abroad with, envisioning a life in the UK on a working holiday visa like every other Australian who reaches the age of a quarter-life crisis. 

What better way to change my life than to take on a remote job and take off to Europe?

But only three days after being home in Edinburgh following the Cyprus trip in late June, I was stuck in one place with no end in sight for the first time since the Melbourne lockdowns.

I had COVID-19 (very retro in 2024, I know). It was the worst sickness I have ever experienced—worse than the months in high school I spent battling glandular fever, worse than my trips to the ER with ongoing kidney infections, worse than my many years of battling PCOS.

And once I tested negative, it didn't improve. 

I started hallucinating. I lost control of the right side of my body. I was being woken up by strangers on the sidewalk after collapsing. I was taken to hospital with no recollection of how I got there. I was having seizures in the middle of the night. I was dating someone who I had only met three months prior, and suddenly they were having to bathe me because I couldn't get into the shower myself. I couldn't cook food, I couldn't write, and I certainly couldn't work.

It went on for weeks. The GP said we should check my blood again, despite my blood having all come back normal just a fortnight prior.

I felt trapped: inside my room, inside my body, inside my brain. I knew something wasn't right, but the GP didn't seem concerned. Maybe I was just being dramatic?

When I woke up on my bathroom floor surrounded by my own vomit with no idea of how long I'd been there, I decided I needed a more thorough examination. I'd been to the hospitals in the UK previously, and I knew what was ahead of me if I simply presented to the emergency room (read: hours and hours of waiting, only to be told to go home and talk to my GP about it instead). 

I paid nearly $600 AUD for a 15-minute consultation. Only then was I finally taken seriously. 

Following a lumbar puncture and numerous CT scans, I was told I had post-viral encephalitis—a far cry from "a bad headache" that the GP had insisted on. 

The following weeks were a blur of appointments, testing, being ill, feeling totally fine, wondering if I'd made it all up, attempts to go back to work, cancelled plans, sobbing down the phone to my mum, desperation to go home, and, unfortunately, very clear advice: do not get on a plane.

Due to the inflammation in my brain, high altitudes were not an option. The doctors weren't certain that it wouldn't cause an aneurysm mid-air, and as much as I wanted to be back in Queensland with home-cooked meals from my mum, I was also very, very tired. 

Back in October—coincidentally on Invisible Disability Week—I was approved to fly come next January. The inflammation is gone.

Unfortunately, the Functional Neurological Disorder (FND) I was diagnosed with in August will never be. 

Never heard of it? Neither had I. Freaking Nightmare Disorder would be a better name.

Watch: What is Functional Neurological Disorder (FND)? Post continues after video.

There's limited research on its causes, but the 'cause' is a moot point. What matters is the symptoms, and how I manage them—which is something I'm still learning, day by day.

Unfortunately, there's no 'normal' when it comes to FND. There are no tests to show that I'm "cured". 

But there are medications and neuro-rehabilitation processes that have helped me stop collapsing in the kitchen and waking up surrounded by my own bile, have allowed me to regain control of the right side of my body, and have enabled me to experience an entire month without having a seizure on the sidewalk. 

I can cook my own meals again. I can shower myself. I can live on my own. I feel like myself again—albeit only for a few hours at a time. 

If you saw me in the street or interacted with me for an hour online, you probably wouldn't think twice. My family and friends tell me I seem so much better, and I am. But I also fainted in my living room last week because I tried to unpack a box while also listening to an audiobook, so saying I'm "better" doesn't quite fit the bill for me anymore.

Invisible Disability Week might be over, but it doesn't mean you should stop being kind every single week that follows. You truly never know what someone is going through—even if they don't look, sound or seem sick.

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Feature image: Supplied.