Clair’s Story | FND Awareness Day UK 2026

My FND journey so far

Over 2 years ago my life and that of my families literally changed overnight and we didn’t see it coming! I had a viral infection and pain in my back. 10 days in I collapsed in the middle of the night and was rushed into hospital by ambulance. Initially everyone feared the worse and ‘all the nasties’ were suspected and one by one ruled out! Then, in swooped neurology and after more scans and tests I was diagnosed with FND (Functional Neurological Disorder) before being discharged to the community neurophysio team. 

I was unable to even do sit to stand, I couldn’t take or collect my children from school and slept for many hours a day. I was dependent on my wife and a few close friends to help, support, encourage and take me anywhere and everywhere. 

For someone used to operating at 100 miles an hour, working on multiple tasks/projects simultaneously and where nothing but perfection was acceptable as well as being unable to say ‘no’, being a people pleaser and wanting to help everyone this sudden inability to function and need to rely on others did not sit comfortably with me.

I was fortunate to have access to therapies quickly.I have had extensive neurophysio and neurooccupational therapy, interventions from the pain team as well as FND education and ongoing care from the Rosa Burden Centre.

Slowly (too slowly for me) I started to improve. My movements relearnt, new ways to manage tasks and a slower pace adopted. Meditation and mindfulness became two of my strategies to help regulate my nervous system! 

A year later and I was back to school and the work I love, following a slow, arduous phased return but I got there albeit on less hours a day. I am lucky to be surrounded by colleagues and friends looking out for me. 

Now, 2 and a half years on I can drive short distances, walk a little further and socialise again ensuring a balance of activity and rest (Lynn has to remind of this often!). I am not there yet and continue to work on improving areas still affected by this debilitating, hidden disability. Literally every decision I make to do something physically or mentally has a price and it has taken a long time and a lot of support and training to learn how to ‘Pace’, how to avoid ‘Boom and Bust’ and to be ‘kind to myself’ showing a great deal of self compassion (this is a work in progress).

FND does not define me, it will not beat me but it is a significant part of my life! I even hope one day to be able to part with Tigger, my beloved mobility scooter and maybe just maybe find a way back to running 🏃‍♀️.

It is a journey of self- discovery and not all bad. I live much more for the moment. I try to be present and not distracted thinking of future plans, missing the present! I feel I am able to be a better role model for my beautiful children and I am slowly learning not to put others before my health and wellbeing. I do not have to be everything to everybody! I look for joy and happiness in life and am trying to learn to be better at self-compassion. Believe it or not there are many positives from this situation 🫶🏻.

~ By Clair