Trying to explain FND, fear, and the need to be believed

One of the hardest parts of living with Functional Neurological Disorder (FND) isn’t always the symptoms themselves, it’s trying to explain them.

FND doesn’t sit neatly inside familiar categories. It doesn’t behave in a consistent way. It doesn’t always show up on scans. And because of that, it often resists the simple explanations people seem to want. I find myself avoiding conversations about it altogether, not because I don’t want understanding, but because the effort of explaining can feel overwhelming, and sometimes frightening.

Recently, during a PIP review, that fear came sharply into focus. I found myself worrying not just about paperwork or questions, but about whether I would be believed at all. That’s a heavy thing to carry, especially when your symptoms can be unpredictable, distressing, and at times genuinely terrifying.

Symptoms that don’t stay still

FND symptoms can shift. They can flare and recede. One day you might manage short walks; another day you might be unable to leave your home. Pain, weakness, tremors, sensory disturbances, cognitive fog, none of these follow a reliable script.

Trying to describe that variability to someone who hasn’t experienced it can feel like trying to explain the weather inside your body. There’s a pressure to make it sound consistent, measurable, provable, when the reality is anything but.

And when you’re already unwell, being asked to translate that experience into tidy sentences can feel like an extra burden layered on top of everything else.

The fear of not being believed

What makes this particularly difficult is the unspoken fear that if you don’t explain it perfectly, your experience will be doubted.

There’s a quiet but persistent anxiety that runs alongside forms, assessments, and conversations:

• What if they think I’m exaggerating?
• What if the symptoms sound too vague?
• What if I’m having a better day when they see me?

Living with FND often means living with that constant background worry, not just about your health, but about credibility.

No one should have to feel like they are on trial for being ill.

Why is awareness still so limited?

Despite affecting many people, FND remains poorly understood outside specialist circles. Awareness is limited for several reasons:

• It challenges outdated ideas about how the brain and body interact.
• It doesn’t always leave visible markers.
• It has historically been misunderstood or minimised.
• Media coverage is still rare and often oversimplified.

I reached out to the BBC recently in the hope of contributing to wider awareness, because visibility matters. When conditions remain unseen, people are left feeling isolated — and systems remain slow to adapt.

Even without a reply, I believe it’s important to keep speaking, gently and truthfully, where we can.

You’re not alone in finding this hard

I know I’m not the only one who finds it difficult to talk about FND. Many people I’ve connected with describe the same things:

• avoiding explanations because it’s exhausting.
• simplifying symptoms to protect themselves.
• feeling guilty for fluctuating abilities.
• staying quiet to avoid disbelief.

If this resonates with you, please know that your experience is valid — even when words feel inadequate.

A quieter form of advocacy

Raising awareness doesn’t always have to be loud. Sometimes it looks like writing carefully. Sometimes it looks like choosing when not to explain. Sometimes it looks like resting, or protecting your energy, or trusting that your experience matters even when it isn’t fully understood.

I’m sharing this not because I have all the answers, but because silence can make people feel alone. If you live with FND — or care for someone who does — I see you. And I hope that, over time, understanding will grow, not through interrogation, but through listening.