Voices for FND. Which voice do I want to be heard? The voice of frustration that we have to fight for diagnosis and treatment? The voice of sorrow that so many suffer so greatly from this condition? Or the voice of hope that it’s possible to live a good life even amongst these challenges? 

Two years ago, I was placed on a waiting list for a world-class neuro-rehabilitation programme for treatment of my FND. I felt daunted; the programme lasted three months and would be my longest hospital admission yet. I also felt grateful; compared to many, I have already received a lot of specialist treatment, the best that’s out there, and here I was being offered another chance of help and the hope that brings. But something didn’t feel quite right.

As my place finally drew nearer, a mutual decision was made that the programme was unlikely to offer the help I’d hoped for. Like similar programmes I’ve already done, it focuses on developing coping skills and a toolbox of symptom management techniques, as well as deepening understanding of the condition, and identifying any factors that drive symptoms and form barriers to recovery. That approach can take you a long way, it certainly changed my life, but then what? What happens when specialists admit that you yourself have the best understanding of your condition? What happens when you’re continuing to personalise and develop management strategies as your condition, and life, unfolds, but you no longer need someone to hold your hand and guide you through? Is it a time to fight for more, or a time to accept what is?

When the admission became a reality, my whispering doubts became louder assertions. I felt relieved that the right decision had been made and supported in this by the rehab team who gave me the space to explore it, but I also felt frustrated and let down. My feelings were echoed in the disappointment of my neurologist’s voice; to her, it’s unacceptable to leave me as I am, but the reality is there are few treatment options out there.

Right now, I feel empowered that I’ve gained the confidence and understanding to know what’s best for me. I’ve proved to myself that, however challenging, I can use my toolbox to help myself through really difficult times. I will explore treatment options that come my way, whilst continuing to live the best life I can, balancing an acceptance of what is with a hope for more. But on this FND Awareness Day, I want to highlight the lack of understanding and treatment that surrounds the condition. The situation has improved, and I feel privileged to be treated by professionals leading the way, but it is still frustratingly limited. It’s difficult to access treatment because services are so sparse, and for those of us who have engaged with what’s available, but who continue to live with severe and complex conditions, there is very little indeed. Is management the best we can hope for, and we have to fight hard to access that? Can management itself become cure?

My voice for FND is ultimately one of hope. With understanding of the condition and being my own therapist comes the very real possibility of living a good life.

FND Action – What is FND?

FND Dimensions

FND Hope

For this year’s FND Awareness Day #VOICES4FND, people affected by the condition were asked to create a short video to be shared across social media. This is mine. It includes a poem I wrote several years ago when I was very unwell, exploring the internal landscape of my body and mind in my journal, with images of the fulfilling life I have since been creating for myself alongside the challenges of my condition.