Charlotte Croft was a fully functioning 26-year-old English Lecturer from Suffolk who loved reading, working and being busy, but her life changed overnight when she was diagnosed with Functional Neurological Disorder (FND), resulting in her having limited mobility and being mostly housebound.
In this personal story, Charlotte shares how she was diagnosed with this complex health condition, how she is navigating being a newly disabled person and raising awareness of FND.
Being diagnosed with FND
Life for me has always been ‘normal’. I grew up in a household with three sisters and spent my childhood on the stage performing for several amateur dramatic companies and dance shows. I went off to university, lived in Spain for a year and achieved a master’s degree in English Language and Linguistics, all whilst living an independent, fully functioning lifestyle. Now, at just 26 years of age, I now face the devastating issue of learning to walk again, thanks to FND.
The most frustrating thing about my story is there was no catalyst. No big car accident, or horrific ordeal that led me to the situation I faced. One night, I simply went to bed as a typical 26-year-old and woke up a completely different person. This is common with the diagnosis of FND, which leaves many sufferers like me wondering why their lives have been changed so drastically.
One night in March, I was awoken by horrific chest pains. It felt like I was having a heart attack. I couldn’t breathe. Thankfully, after a long-winded stint in A&E, and five, yes five, ECGs later, the doctors confirmed that my heart was fine.
However, they could not account for the pain, which was still taking my breath away. I was referred to the GP the next day, who diagnosed me, (incorrectly I now know) with Costochondritis, aka inflammation of the ribs. I was fobbed off with Naproxen and told it would clear up in a week or so. After a few days, taking the doctor’s advice of pain relief and rest, I thought I felt slightly better.
However, again, after what I thought would be a blissful sleep, during the early hours of Friday morning, 22nd March 2024, I was awoken, this time with a horrific stabbing pain running down my spine. This escalated to pain in my entire back, which also ran down my legs.
I returned to the GP through an emergency appointment, and several tests were taken. By this point, I could barely walk and was crying with pain. Again, my heart was fine, my blood pressure was okay and even blood tests did not reveal anything. The doctors were at a loss as to what was causing this pain, so had no choice but to direct me to the hospital, where I was told I would need further testing.
I spent the next week in hospital. Still crying in pain, high on oral morphine, the doctors were still none the wiser about my condition. Over the weekend, my health deteriorated. I couldn’t walk without help and felt lifeless and weak. My body felt like it was shutting down and there was no rhyme or reason as to why this was happening.
On the Tuesday, I had an MRI scan, which revealed some anomalies in my chest and neck area. However, the good old NHS decided to only conduct half a scan, meaning neither doctors nor neurologists could clearly tell me what these anomalies were and if they were the cause of my situation. I was told I would have a repeat MRI scan, this time on my entire spine and brain, to ensure they could get a proper look at what was happening in my body.
Eventually, I was told the second MRI scan revealed that the anomalies were fine, and there was no indication of any unusual activity on my brain or my spine. It was then at this point I learnt I had FND.
What is FND?
FND stands for Functional Neurological Disorder. It is often described by neurologists, (or I should say those who even know about this disorder as it seems many medical professionals don’t), as a disability, which affects the way the brain sends signals to the muscles around your body.
Professionals often use the anecdote that your body is like a computer. You have the hardware, the outside of your body and the bits we can see, and the software, which is the parts we cannot. FND is described whereby all your hardware is in working order, just like a computer, however, there is an issue with the software, which is not connecting correctly, much like when your computer decides to reboot or stop working for no apparent reason, which is exactly what was happening to my body.
Specialists believe that FND can be caused by high levels of stress, anxiety or trauma, but have little understanding of triggers, and therefore back the requirement of further research into the disorder and its causes.
FND is not fixable. No operation or specialist can wave a magic wand and make it go away. This is evident so much so that several ‘specialists’ in hospital resorted to giving me leaflets and referring me to websites to get further information, that they just didn’t have or understand enough to help. Neurologists themselves have admitted that further research into this disorder is required immediately, to be able to understand and support sufferers like me.
How does Functional Neurological Disorder affect me?
Like all disabilities, FND varies in intensity and it can affect so many different areas in the body, that everyone with FND suffers in different ways.
For me, my condition went from bad to worse, when I started having spasms in my leg muscles. These were so severe that I lost mobility in one leg, after already experiencing mobility issues previously when the condition first started.
For a few days, I couldn’t even wiggle my toes, and I completely lost movement in my right leg. However, I was one of the lucky sufferers of FND who was able to receive good support from specialists at Ipswich Hospital, I was able to walk with crutches and able to go home. I have been put on a waiting list for physio and rehabilitation and given medication, which helps specifically to target the muscle pain.
However, even this still isn’t enough to fix or take away my FND. My limited mobility means I still require crutches or a wheelchair daily, as well as carers to help me navigate everyday routines. I also experience extreme fatigue and chronic pain daily. My life has completely been turned upside down by this disorder and I have lost my independence.
Nevertheless, I am hopeful that I can use my experience with functional neurological disorder to educate others and to positively overcome the issues not only I, but many others, face from this disability.
We need to push for further research into the condition as well as further training to better understand how we move forward with this. If anything, my story has taught me just how short and cruel life can be. So, I plead with everyone to just make the most of what you have and live every day not knowing what tomorrow holds. So many people face difficulties in life, but it’s how you overcome them that shapes your story.
You can find out more about Charlotte’s experiences of living with a disability by following her on Instagram and TikTok.
Do you, or someone you know, also live with FND or a similar neurological condition and can relate to Charlotte’s experiences? Have you recently been diagnosed or acquired a disability? Let us know in the comments box, on social media or contact us to share your personal story.