• Tue. Jul 23rd, 2024

My experience with FND: Learning to walk again as a 21-year-old student

ByLucy Jackson

Nov 12, 2022

November is Disability Awareness Month. At The Student we must take advantage of our platform when it comes to talking about the barriers that students with disabilities face, as well as celebrating and uplifting disabled voices in all aspects of our society.

Being your Editor-in-Chief is an absolute privilege; I couldn’t have imagined I’d be doing this even six months ago. This is because I’ve faced many difficulties to get to where I am today (side note: past Lucy would laugh in your face if you told her she’d be taking up a whole entire page!)

To put it simply, I wouldn’t be doing myself justice if I didn’t use this space to talk about my own experiences. I have Functional Neurological Disorder (FND), a condition that has been life-changing for me. It’s taken me a long time to feel able to talk about this openly, but there has never been a better opportunity for me to speak than now.

FND is a very complex neurological condition: it can happen to anyone regardless of age or gender, and symptoms differ greatly between people, making it more stigmatised and much harder to diagnose.

It’s essentially when the brain doesn’t send the right signals to the rest of your body. There’s no physical damage to the brain, meaning it can’t be picked up on a scan like a broken leg; it’s helpful to think of FND as a software issue rather than a hardware issue. But the symptoms are very much real.

I first experienced symptoms in September 2021, as I was going into my third year here at Edinburgh. Out of nowhere, I gradually lost the ability to walk, until I no longer could. I can’t even begin to describe what this felt like. I was your typical 20-year-old student, working at a bar part-time, going to the gym – and then I couldn’t walk at all.

I also experience pain, fatigue, a functional tremor in my right leg, loss of sensation, numbness, tingling, and dissociative seizures (which are different to epileptic seizures).

It took less than a month for me to get a diagnosis, which is extremely lucky – for most people with FND, this can take years. After many humiliating trips to my GP, Out of Hours, and A&E – you wouldn’t believe some of the things I was told by fully qualified doctors! – I was admitted to hospital in Edinburgh, where I stayed for six weeks.

I knew there was no way I could continue at university, and so I decided to take the semester out. Until this point I’d been desperately trying to do my reading whilst being wired on painkillers – I even did my interview for News Editor at The Student from a hospital bed!

Staying in hospital is traumatic in itself; thankfully, I was surrounded by a brilliant neurology team, and I had access to physiotherapy every day, which kickstarted the process of learning how to walk again.
I had to relearn the automatic movements most people don’t think about doing when they walk; this meant distracting my brain by first learning to walk backwards, dribbling a ball, moving around cones, and even using a trampoline.

My mental health obviously took a huge hit during this period, and I also became dependent on oxycodone – it was prescribed to me in one of my earlier visits to hospital, and it took me seven months to come off it completely.

I was discharged from hospital in December 2021; I moved back home and my dad – the most wonderful person on the planet – became my sole carer. It was clear I was going to have to take the whole year out. I couldn’t walk properly; I couldn’t live independently.

The beginning of 2022 was genuinely the most horrific period of my life; I didn’t feel like a human being anymore, I had lost all hope that I was ever going to be the person I used to be, that I would be independent and living in Edinburgh again, let alone studying.

I spent 6 months in rehabilitation in County Durham, where I’m from. My local council organised for a carer to visit every day to look after my basic needs – I couldn’t shower, dress, or feed myself. Gradually, I managed to go from being wheelchair-bound, to using a walking stick, to walking independently.

I’m massively oversimplifying this, of course. I don’t have the words to explain how tough this process was; it took months, left me crying most nights, and was made even more testing by the shambolic state of the DWP.

My hard work would pay off – in June, I was well enough to move back to Edinburgh, living independently for the first time in almost a year.
Since being back here, I have achieved so much: from going on walks alone, to cooking for myself, to being a part of the Fringe as Deputy Editor-in-Chief, and now being able to take part in my studies again.

A huge part of my recovery has been to do with the friends I’ve made here at The Student. I still get symptoms, but they’re more manageable than they were when they first started, and I’m surrounded by a community of wonderful people who have been so understanding of my condition.

Unfortunately, it’s not like this across the university. I hope this edition brings to light some of the issues that students still face here at Edinburgh.

FND is not widely known, despite being the most common neurological condition, yet it can happen to anyone. I feel proud to have this space to talk about it; I’m incredibly lucky to be where I am now, but I owe it to myself to acknowledge how I got here.

Image courtesy of Lucy Jackson.

By Lucy Jackson

President of The Student.