Our Voices - FND Special

FND is real.

Despite what some of us have been told.

Despite how we’ve been treated.

Despite the confusion that still exists in the wider medical field..

FND is real. Our symptoms are real. Our pain, our fatigue, our tremors, our speech loss, our seizures, our paralysis.. it’s all real. It’s not “just stress.” It’s not “in our heads.” It’s in our bodies, in our daily lives, in our every decision.

We are not one-size-fits-all.

FND presents differently in everyone.

What works for one person may do nothing for another. Listen to us.

Learn from us.

Treat us as individuals, not as textbook symptoms.

Please stop the cycle of dismissal.

We’ve been misdiagnosed.

Ignored.

Laughed at.

Sent home with no answers, told to “calm down,” or accused of faking it.

You have the chance to do better.

Be the generation of professionals that changes this.

We don’t want pity.. We want partnership.

We want to work with you, not be talked over.

Let us be part of our care.

Involve us in the conversation.

Respect the fact that we are experts in our own bodies.

Remember: we live this. Every day.

You may see us for an hour.

We carry this 24/7.

That lived experience matters. If you want to understand FND, start by listening to those who live with it.

This message isn’t to guilt you. It’s to guide you. Because we believe change is possible. We believe in better. And we believe that if you’re reading this, you want better too.

So here we are.

Your future patients. Your partners in care.

Our voice. Your chance to hear it.

When I first saw the new government’s plans.. I’ll be honest, I was gobsmacked. On one hand, they’re talking about massive cuts and changes to PIP. On the other, they’ve announced a significant investment into Functional Neurological Disorder.

Do they even hear themselves?

How can you pour money into one area, supposedly to help people like me, while tearing the rug out from under us in another? It’s conflicting. It’s confusing. It’s cruel.

We already fight hard every single day just to be believed, to get support, to navigate a system that was never designed with us in mind. Now, for many of us who can’t work because of FND, our financial lifeline.. our ability to live.. is at risk. Why? What does that achieve? How does cutting vital support align with helping people with FND?

Let’s be real: the funding you’re putting into FND is welcome.. finally. It’s needed. But if you strip away the benefits and support that help us actually live, that progress will mean nothing. It’ll be another box ticked while real lives fall apart.

But even with this investment, there’s a much bigger issue: you still don’t listen to us.

We’re handed websites, leaflets, or vague advice like “you just have to get on with it.” That’s not understanding. That’s dismissal wrapped in polite language.

If you really want to understand FND.. how it works, how it feels, how it changes lives.. you need to listen to the people who live with it. We don’t get breaks. No days off. No time to pause. We are the constant in this condition. You want insight? We have it. You want to make a difference? Start with us.

The professionals who genuinely listen.. who hear beyond the symptoms.. are the ones who get it. They understand that we are not a one-size-fits-all diagnosis. FND looks different in every single person. We don’t all have the same symptoms, or the same triggers, or the same coping strategies. So why should our care look identical?

I once had a specialist tell me, “You will never find two cases of FND the same.” And I believed them. They saw me.. not just the label. They understood that the person before me had different needs, and the one after me would too. That’s the kind of thinking that changes lives.

So to the professionals out there:

Look. Listen. Learn.

And for a little insight, the comments you see threading through out my blog are actually comments from people who live with FND, people who care for people living with FND and parents of children with FND. These are their personal thoughts and views in black and white for you to read.