Emma's FND Story

I have been living with Functional Neurological Disorder since 2021.

Before it all began, there was already a lot happening in my life. I had Covid and became really unwell. My Grandad passed away, and I was living in a long-term domestic violence marriage.

My body and mind had been through a lot.

Then, one day, I was rushed into hospital with stroke-like symptoms.

The doctors believed I might be having a stroke, so I was thrombolysed and admitted to a stroke unit. I think I was there for around a week.

While I was in hospital, I had multiple seizures. During some of them, my heart rate dropped as low as 40 beats per minute. I was given anti-epileptic medication, which did stop the seizures at the time.

I had also lost the ability to walk properly. Physiotherapists had to help me learn to walk again before I could eventually return home.

Then I was told that I had FND.

There was no real explanation of what that would mean for my life. There was no aftercare plan and no proper support system waiting for me.

I was diagnosed and left.

That is honestly how it felt.

Around a month later, I went back to hospital with the same frightening symptoms. This time, because FND was already written in my records, the response felt completely different.

I was sent home and told, “That’s FND.”

The symptoms were still just as real. They were still frightening, disabling and difficult to understand, but it felt as though the diagnosis had changed how seriously I was being taken.

What I needed was support, reassurance and a plan.

Instead, I was given a label.

How my symptoms have changed

My seizures and symptoms have progressed over time.

Alongside the seizures, I experience tremors, tics, memory loss and periods where I lose my voice. I also feel permanently exhausted.

The exhaustion is difficult to explain. It is not just feeling a bit tired or needing an early night. It can feel as though my whole body has run out of power.

I have also noticed a pattern whenever I become physically unwell.

Every time I catch an illness, it feels as though my FND symptoms escalate. Once the illness has passed, the symptoms do not always return to where they were before. It feels as though they settle at a new, more difficult baseline.

Then another illness comes along, everything worsens again, and that becomes the next baseline.

That is my personal experience of FND, and it has made every illness feel more worrying because I never know what I might lose afterwards.

Losing my independence

I can no longer drive.

I cannot just get up and decide what I want to do. I cannot simply pop into town, make spontaneous plans or decide that I am going to have a bath or shower without considering whether my body will cope.

Everything has to be thought through.

How tired am I?

How bad are my symptoms?

Is somebody nearby?

What happens if I have a seizure?

Will doing this now mean I cannot do anything else later?

FND has taken away so much of my independence.

It has also affected my children.

FND made them grow up much faster than they should have had to. They worry that I might have a seizure or become seriously unwell and randomly die one day.

That is a horrible fear for children to carry.

I cannot do the school runs. I cannot always take my daughters out for the musical drives they used to love going on with me.

Their favourite song was “Narcissist” by Lauren Spencer Smith.

I am fairly sure one of them was trying to sing the problems to me, if I am honest.

Those drives might sound like such a small thing, but they were ours. We would listen to music, sing together and enjoy being out in the car.

I miss being able to do that without having to think about what my body might suddenly do.

Sometimes, I feel as though I cannot be there for my children in the way I want to be. When Matthew is not here, it is often my children who are watching over me rather than me looking after them.

That is one of the hardest parts.

More than one condition

Alongside FND, I also live with fibromyalgia, endometriosis, POTS, anxiety, depression and panic disorder.

It is a bit of a cocktail, and definitely not an ideal one.

Pain, exhaustion, anxiety, changes in my heart rate and the stress of trying to manage everyday life can all contribute to my symptoms and triggers.

Sometimes it is difficult to know where one condition ends and another begins.

I can look completely fine from the outside while my body is fighting several different battles at once.

That is one of the things I wish more people understood about invisible illness.

Matthew

The person who brings me the most joy, even on the difficult days, is Matthew.

From the moment I met him, it was obvious that he accepted me and everything that came with me.

There was not one dramatic moment where he suddenly proved himself. It was there from the beginning.

But I think it was reinforced most strongly when I lost control of my bladder and he helped me without hesitation or judgement.

There was no disgust. No embarrassment. No making me feel ashamed.

He just helped me.

FND can put you in situations where you feel completely vulnerable and stripped of your dignity. Having someone respond with kindness in those moments means more than I can explain.

Matthew helps me every day and tries to make sure that I pace myself, although I am still struggling to master that one.

On a better day, I want to do everything. I want to catch up, clean, go out, make plans and feel normal.

Then my body reminds me that there is usually a price to pay afterwards.

Matthew helps me recognise when I need to slow down, rest or ask for help.

Nothing is ever too much trouble for him. Through every seizure, every symptom and every setback, he has never made me feel like I am his patient rather than his partner.

He still sees me as Emma.

That matters.

Escaping and starting again

One of the things I am most proud of is escaping 17 years of domestic violence.

For a long time, I lived in a situation where I was frightened, controlled and made to feel small.

Leaving was not easy, but I did it.

I escaped that life and stepped into my dream life with Matthew.

My health may not be what I imagined it would be. FND has changed so much and taken so much away from me.

But I am safe.

I am loved.

I have a partner who supports me without judgement and reminds me that I am still a whole person, even when my body is at its most difficult.

That is something I will never take for granted.

Finding people who understand

Finding the FND community has made a huge difference.

Through FND Connect, I have met some amazing people and made some great connections.

There is something incredibly comforting about speaking to people who understand.

Some understand because they live with FND themselves. Others understand because they care for someone who does.

You do not have to explain every symptom from the beginning. You do not have to convince people that what is happening is real.

They already know.

Having that community makes the fun days more fun and the hard days more bearable.

It reminds me that I am not alone.

What I wish had happened after diagnosis

When I was first diagnosed, I wish somebody had explained what FND actually was and what it could mean for me.

I wish there had been aftercare.

I wish there had been an actual support system that cared.

I needed somebody to tell me what to expect, how to manage my symptoms, where to go for help and what treatment or rehabilitation might be available.

I needed support for my family too.

Instead, I was literally diagnosed and left.

A diagnosis should be the beginning of support, not the end of the conversation.

People with FND need more than a label written in their medical records.

What I want people to understand

I want doctors, healthcare professionals and the wider public to understand that we are not crazy.

Our symptoms are real.

The seizures are real. The tremors are real. The tics, memory loss, loss of speech, exhaustion and loss of mobility are real.

They affect our independence, our relationships, our children and every part of our daily lives.

We need more support than a label.

Being told that a symptom is caused by FND should not mean the conversation is over. It should not mean that somebody is sent home without help because “that’s FND.”

It should lead to proper information, treatment, rehabilitation and support.

My advice to somebody newly diagnosed

My biggest piece of advice to anyone who has recently been diagnosed is to fight the urge to isolate yourself.

It can be terrifying trying to navigate a new life that you no longer feel in control of.

FND is also incredibly difficult to explain. When you do not fully understand what your own body is doing, trying to explain it to somebody else can feel impossible.

That can make you want to hide away.

You might worry that people will not believe you. You might feel like a burden or think that nobody could possibly understand.

But please let people in.

Let your family help you. Speak to your friends. Find people who understand what you are going through.

Communities like FND Connect can remind you that you are not facing this alone.

Life with FND is not the life I expected.

It has taken away parts of my independence and changed the way my whole family lives.

But I have also survived things I once thought I would never escape.

I survived 17 years of domestic violence. I rebuilt my life. I found love, safety and a community that understands me.

I am still here.

I am still Emma.

I am still a mum, a partner and a person with things to say, memories to make and a life worth living.

FND is a huge part of my story, but it is not the whole of who I am.