Functional neurological disorder (FND) is often a misdiagnosed and misunderstood condition, and the reality of life with it can be devastating. One person who has experience of this is Nathan Wedge, who was first diagnosed in 2024 and went on to face further debilitating symptoms and a long road to recovery.
In this personal story, Nathan shares the traumatic events that led him to a three-month stay in hospital, the lack of follow-up care for people with FND and the benefits for him to document his journey through vlogs on to his 49,000+ TikTok followers.
Adapting to a diagnosis of FND can be very isolating and confusing, which is exactly how I felt back in August 2024. At the time of my diagnosis, I was advised of a webpage to help me better understand my condition.
Life continued relatively normally from that point, except for left-hand side weakness and the occasional functional seizure, I still managed to work and live my life relatively normally.
The reality of FND and the gaps in awareness
Fast forward to June 2025, and our entire world was turned upside down. Following a day at the spa, celebrating my wife’s 40th birthday, we headed back to the room to wind down for the evening. However, it was here that I had 17 functional seizures within 1 hour and ended up blue-lighted to Blackpool Victoria Hospital.
I have very few recollections until a day later, when I was a little more compassed. What was shocking to hear was that both paramedics, along with the nurse in A&E, had never heard of FND and what the condition was. FND is not uncommon and is high up on the list of reasons an individual would be referred to a neurologist, yet training and understanding of the condition for medical staff seem to be lacking.
A point to note about FND is that it is a ‘software’ problem, if you want a better phrase. It is a miscommunication/misfiring of the signals from brain to body in the absence of damage to the structure, which can be seen in other neurological conditions such as MS however, the symptoms can mimic those of MS or stroke.
So back to the story – As I came round in hospital it was evident that I couldn’t use the left hand side of my body – a terrifying realisation BUT it didn’t stop there I was unable to talk – the words were all in my head and I knew exactly what it was I wanted to say but I was unable to get the words out. I felt like a prisoner in my own body. I’m a chatty person, so it felt like a loss of identity.
I must say that the hospital staff at Blackpool Victoria were exceptional. But 2 weeks later, I was transferred to my local hospital on the premise of finding a rehabilitation centre nearer home.
When we first arrived at our local hospital the doctors came round to do their ward rounds and lets just say he was very dismissive of the condition almost like he didn’t believe the symptoms (like someone would choose to be mute and paralysed) I was dumbfounded by this approach and harrowed that someone who had consciously chosen to work in healthcare completely forgot the care element.
I’m not naïve. I’m medically trained and worked as a dentist full-time before falling ill, so I completely understand that medical professionals can’t know everything, and with a neurological condition so complex, it is obviously going to be misunderstood, BUT what they can do is treat individuals with respect and integrity.
Left without support: my battle for FND care
Whilst at my local hospital, I received physiotherapy almost daily (as staffing allowed) but was denied speech and language therapy due to a lack of funding in our area, as I had a diagnosis of FND. Surely we should be treating the symptoms that present and not denying care based on a previous diagnosis? And yet to this very day, I have regained the ability to speak without the help of the NHS services. I am fortunate enough to have friends in the profession who helped guide me back to speaking, but I just fear how many individuals are being let down by a broken system. CHANGE IS NEEDED.
There were also no neuro-physio rehab inpatient places within my area, and the ones outside our area were unable to take us due to our postcode. It felt like no matter what we did, we hit a brick wall.
My house was unsafe to return to at the time in question, so I ended up moving into an intermediate care ward (IMC), which, in hindsight, was fantastic. The staff were amazing. I was having physio multiple times a day and had an Occupational Therapist who helped arrange all the aids I needed to return home safely.
During my time in hospital, I was catheterised 3 times due to bladder retention, and now I self-catheterise daily, which let’s just say is an experience!
Fast forward to 27th August (3 months following admission), and it was time to come home. In no way had I fully recovered, but I could speak with a severe stammer and a LOT of concentration. I’d been seizure-free for 2 and a half months, and I was able to walk around 50m with a Zimmer frame – It finally felt like I was regaining control of my life.
Sharing my fND journey to help others
Now, if I were feeling frustrated, isolated and not heard, I could only imagine there were so many others feeling the same, so I decided to document my journey on my social media platforms – If the videos reached one person and made them feel more seen, more heard or understood, then they were worth sharing.
I ensured I shared the good, the bad and the ugly of the recovery as it’s not always been easy and it’s not been without ugly tears and stress, but it’s taught me that I am resilient and that no matter what life throws my way with the ones I love by my side, I can conquer anything.
Right now, I am still on the road to recovery, adapting to my new normal, raising awareness where possible and making the most out of a situation I never imagined would happen to me. FND has stolen part of who I am, but I will never give up. So, to anyone out there struggling, however hard it can seem each day, think of one reason to smile and hold onto that. FND is cruel and debilitating, but always remember it is not defining.
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