What it’s like to live with FND - Liams Story

I’m Liam, and this is my FND story, which I’m pleased to be sharing with Ask Us Nottinghamshire.

What is FND?

Functional Neurological Disorder (FND) is a real medical condition where there is a problem with how the brain receives and sends information to the rest of the body.

You can think of FND like a computer: the hardware (the physical structure and brain tissue) is completely intact and normal, but the software (the signalling and network communication) is malfunctioning. Scans like MRIs or CT scans do not show physical damage or disease, making FND a disorder of brain function rather than structural damage.

Common Symptoms

FND can affect movement, senses, and awareness.
Common signs include:
1. Motor symptoms: Limb weakness or paralysis, functional tremors, muscle spasms (dystonia), tics, and walking/gait difficulties.
2. Functional seizures: Episodes where a person loses awareness or control, resembling epilepsy or fainting, though without abnormal electrical brain activity.
3. Sensory issues: Numbness, loss of touch, visual disturbances, or hearing problems.
4. Cognitive and speech problems: Memory lapses, brain fog, difficulty concentrating, or sudden stuttering and speech loss.

Causes and Triggers
1. Not "made up": FND is involuntary and not consciously produced or controlled by the patient.
2. Triggers: It can be triggered by physical injuries, infections, surgeries, migraines, or severe emotional and psychological stress. However, not every patient has a clear psychological trigger.
3. Brain networks: Research shows disruptions in how brain regions communicate, particularly areas responsible for self-agency (feeling in control of one's movements) and emotional processing.

Diagnosis and Treatment
1. Diagnosis: Neurologists diagnose FND through positive clinical signs (such as Hoover’s sign for limb weakness) and a detailed medical history, rather than just ruling out other conditions. Guidance and clinical services can be explored through resources online.
2. Recovery: Because the brain hardware is not damaged, recovery and symptom improvement are possible. Treatment typically involves a multidisciplinary team—including specialised physiotherapy, occupational therapy, speech and language therapy, and psychological support to help retrain the brain's pathways.

My FND Story

In 2016, when I was 13 years old, I experienced severe physical and cognitive deterioration. My brain and body completely shut down on me. I had to leave school, as it wasn’t safe for me because of my sudden deterioration. For six months, my mind switched off and I didn’t know who or what anything was. I don’t remember the early days of my illness, and life before it is a blur.

I then suddenly lost the ability to walk and talk, and was rushed to hospital, where I spent many months on a children’s neurological ward. I was left suddenly disabled, having all my abilities taken away from me. I had so many scans, tests, and medical procedures, but everything came back normal. The doctors were baffled and filmed my case for medical research for universities around the world. At times, my illness was mislabelled as other conditions, such as Autism and Psychosis. The professionals said I had an unknown disorder.

Eventually, after months of unanswered questions, I was diagnosed with severe Functional Neurological Disorder. I was discharged from the hospital not long after, as there was no cure and nothing more could be done. I left the hospital in a wheelchair and was given some equipment and information about the condition. My parents were my full-time carers, as I needed 24-hour care. We had at least 20 different professionals involved from across many different services. I was put on loads of different medications, but nothing really helped.

The Realities of Living with Severe FND

FND struck again when it caused me to lose the ability to sit up. Different wheelchairs were provided, but because of my deteriorating posture, they didn’t last long. It got to the stage where my body couldn’t tolerate sitting in any form of equipment. Every time I was transferred to different wheelchairs or equipment, I would heavily collapse and lean forwards with my head on my knees. The wheelchair services said no wheelchair was suitable for my needs. Because it wasn't safe for me to use any equipment, I became housebound and, eventually, bedridden.
I was bedbound and felt trapped inside my own body. The only place my body felt comfortable was on my hospital bed. During this difficult time, I was also diagnosed with Catatonia and Dystonia. Because of the severity of my symptoms, I was also seen by a specialist team from Great Ormond Street Hospital. I couldn’t do anything for myself. I also had sleep difficulties as a result of my condition; I would just lie awake at night and was put on sleep medication. My body was stiff, my hands were clenched, and my feet were locked inwards. I couldn’t tolerate wearing shoes or certain types of clothing. I was locked inside my own body.

Progress and Improvements with FND

After a year of being unable to talk, my speech slowly started to come back. At first, it was just a few words, then eventually my voice returned. Because I was still severely physically disabled at the time my voice came back, I could only just about string a few sentences together. When I could speak again, I could finally say how I felt. When I couldn’t talk, it was very difficult not being able to say what I needed or express how I was feeling about the life-altering situation that FND had caused.

During this life-changing time, I had a goal, and my biggest goal was to visit London. However, because of FND, I wasn’t well enough to go. My different support teams made me London-themed progress charts, maps, and timelines to help motivate me to achieve my goal.
Eventually, after three years, my physical health started to improve. I woke up one morning to find my body didn’t feel so locked or stiff like it normally did. I was learning how to move my hands and arms again. A few months later, I was transferred to a specialist tilt-in-space chair that reclined all the way back. For the first time in years, my head was slightly off my knees—only by a little bit, but this was a huge achievement.

Then, after months of emotional and physical rehabilitation, I was finally well enough and able to tolerate sitting again. My first outing in years was to collect my new wheelchair from the hospital. It felt amazing to be back in the outside world again after being housebound with severe FND. This was the start of my new life learning to live with FND.

Life Now with FND

I made it to London, and I’ve been back many times since to my favourite place! When I was well enough, I also achieved other goals, such as meeting my favourite celebrities and visiting 120 different towns and cities across the UK. Another milestone in my journey was standing up for the first time after four years of being paralysed.

Over the years, I’ve had relapses with my rehabilitation, but I’m determined to never give up. I’m now learning to walk again and pushing to raise awareness about the illness that changed my life when I was 13. My next goal is to go abroad to Cyprus, as I have Cypriot roots.
It’s been a long, hard battle with FND since 2016—painful and very isolating, relearning how to do things my body used to take for granted. I’m now learning to live with my new normal and adjusting to life post-severe FND. I now live with moderate FND symptoms. I still have ongoing physical and mental health challenges caused by the condition, but I now know that I’m no longer trapped by FND. I’m finding my way out, one day at a time.

At 13, I lost all my abilities, speech, mobility, and freedom to FND, but 10 years on, I’m now more determined than ever to not let my disability hold me back from anything. I know if I can get through severe FND, I can get through anything!