Living with FND.. My Brain’s WiFi Signal is Trash

FND is one of those conditions people struggle to understand because it doesn’t show up on standard medical tests. If you break a bone, you get a cast. If you have an infection, you get antibiotics. But when your brain and body miscommunicate? You get blank stares, unsolicited advice, and the occasional, “Have you tried yoga?”

(No, Karen, but have you tried unplugging and re-plugging in your empathy?)

This is why awareness is so important.. not just so people understand FND, but so they stop acting like I can just “mind over matter” my way out of it. If I could simply walk it off, talk it out, or think it better, trust me, I would’ve done it by now.

Since April is FND Awareness Month, I’ll be sharing stories from others who live with this neurological chaos. Because while my experience is one version of FND, it affects everyone differently. Some have seizures, some have paralysis, some deal with tremors, and some get the whole deluxe combo package of symptoms. But the one thing we all have in common? We don’t get to just “snap out of it.”

So, if you’ve ever wondered what it’s like to have a brain that misfires like a dodgy internet connection, stick around. This is just the beginning.

If I’m telling my FND story properly, I have to start at the very beginning.. literally. Seizures have been a part of my life since birth, though back then, no one had the answers for what was going on. Doctors, tests, medical theories.. none of it gave a clear explanation. But what was clear was that something wasn’t quite right.. something that, 37 years later, I’m still experiencing.

But I will be totally and brutally honest now. You will notice chunks or big gaps between my time line. It's not that I don't want to tell you. It's purely because I can't. For either legal reasons I'm not allowed to share, I genuinely can't remember or it triggers me too much and I'd rather not trigger myself if I can help it. What I can't share with you in too many words, I'll share with you through pictures.

As a baby, I had seizures, though the word “FND” wouldn’t come into my life until much later. Growing up, I was that child who had ‘episodes’.. sometimes shaking, sometimes collapsing, sometimes just completely out of it. My family had to navigate a world of uncertainty, watching me go through things no one could fully explain. From just two days old, I was having over 100 seizures a day. I was so poorly that my dad was too scared to hold me.

Growing up is supposed to be carefree.. learning as you go ready for your late teens and adulthood, but mine came with an uninvited guest: unpredictability. One minute, I’d be there; the next, unresponsive. After countless tests, I was diagnosed with epilepsy.. but this was the late 1980s and through the 90s. Medical technology, research, and understanding were nowhere near what they are today. I’d miss days and weeks off school. Seizures weren’t the only issue as I grew up.. anaemia, fatigue, brain fog plus lots more I don’t even know that was kept from me… Some things I knew small bits about, while others I didn’t understand at all or even know why I was living with them. Looking back, I can’t help but wonder if that diagnosis was given simply because it was the closest match at the time. And that’s still the case now.. being misdiagnosed due to the lack of knowledge, tests, and care. Whether it’s the wrong diagnosis because the right one isn’t or wasn’t known, or simply because no one knows the answer. Only now, I’m not being misdiagnosed due to FND.. I’m being dismissed because I’m so complex.

Real issues for me though started not long before my 18th birthday. What doctors diagnosed as panic attacks were actually the start of my long road with FND. Only that wasn't a thing back then and if it was.. I'd never heard of it. 

I didn't hear the letters FND or NEAD until i reached the age of 28. 11 years after my first symptom decided to show itself! September 28th 2017 to be exact. This was after years of tests, hospital admissions, hospital admissions in different towns and counties due to referrals. 

This date is now permanently scribed in my mind due to it being the day I was told I have something called NEAD or as most know Non Epileptic Attack Disorder and it's a part of FND. But I consider myself lucky back then. And not lucky in the sense that "oh I was able bodied and could look after myself" lucky.. but lucky in the sense.. I took it all for granted and I had no idea of what was to come. 

If you've read any of my previous blogs or posts on FND, you'll know once I got my diagnosis.. once those letters were added to my Health records as such and I had labels attached to my name.. I fully buried my head. 

I had a name. I had a label. I had an answer. 

I was just very silly at what I did with that information. 

And it's something that is permantly with me for life. 

But looking back on the day I was diagnosed. I actually remember it well. After a good 11 years of tests, admissions, blank stares and confused faces and looks form the professionals, my consultant sat in front of me with a warm but happy look. Chris sat next to me holding my hand trying not to worry. I was sat there wondering whether this was another I'm sorry all your tests came back normal and we still don't have any answers. Nope. 

All I heard was "Chris is a star, he provided the evidence we needed along with your test results, we caught it all. It was picked up and the video times it perfectly!"
After however many years of these stupid, shitty, nasty seizures. After years of no help or support but trying to record, capture or anything to remotely show these things to the ones who could help me by myself but failing epicly everytime. After years of being told "my tests are normal". After years of just existing. 

What came next was a blur but at the time and many of you who understand what it's like to be told constantly everything is normal and nothing was found or picked up.. to finally be told, what your living is real and it's been seen. I've been seen. It's like your taken to a side room watching yourself. You see it. You hear it. But your watching it play out. 
"I'm referring you to a colleague of mine at another hospital. He's brilliant at his field and he's a specialist. You have something called NEAD, although your brain activity isn't showing signs of epilepsy, your tests showed seizure activity."

I was referred to the specialist centre about an hour from me. And that was that. The appointments started coming through. I finally met my specialist doctor and team. Now for me this is where it starts to get a bit blurry as whilst I was going through my diagnosis and was adjusting to what I was told, I also found out I was pregnant with my youngest. 

So I literally just accepted what my doctors said and got on with it. Only.. I should have noticed the signs then.. instead of waiting for life to flip again!

See with my previous pregnancies, I was monitored by a consultant, but I wasn't properly monitored due to no one knowing what I was living it or being able to understand what was happening to me. From 2006 to 2017 it was just constant test after test, hospital appointments back and forth. Hospital admissions. But never any answers. 

This pregnancy however was different. I was monitored closely. My seizures were kept an eye on. And No, midwife's, nurses and other health professionals involved didn't understand my diagnosis but they understood me and my baby were important. I left it as that. I didn't question it. Some of you may ask why considering my other children's pregnancies, but for me, I just saw it as because I now had a label or a name. It was almost there way of saying ok we acknowledge it now... because it was in black and white on my maternity notes. 

But I won't lie.. looking back through pictures, talking to Chris about it all, I had a rough pregnancy but it wasn't down to my health issues. It wasn't down to FND or the seizures. My son decided he wanted to make a good grand entrance and be extra! Haha. I ended up having to have a c section a week early due to the way my boy and the placenta was in my belly after a 3 week stay in hospital. But even with a rough pregnancy and a sunroof exit as everyone says, bar my seizures and fatigue which I put down to pregnancy and then having a new born and 3 other beauties under 6 to look after. Nothing that I kind of wasn't used to... I felt at my best. I felt like I was actually living and living happily and freely. 

Little did I know 2 years later life would fully flip and change.. and what I was feeling and living then would soon become memories and heart ache. 

You see, my specialist consultant for FND/NEAD explained something to me during my appointments. He actually dug quite deep into my life and things I'd been through and experienced. The good. And the bad.

He said FND isn't just physical trauma related. It's psychological too. The things that I'd gone through and the bad stuff that had happened to me in my past had caught up with me. The trauma it caused was having a reaction with my brain. 

What I didn't listen to is what he explained to me next. That part for me is completely blank. The leaflets and websites he gave me to read and look at. I skimmed over them. I read parts. Only I only read the parts I thought was relevant. Like I said before, I got my label and buried everything else. 

2020 came. Lockdown too. Life was stressful and scary for everyone. It was hard. It was heartbreaking. It was total chaos. Everyone's lives was thrown into limbo.. for me.. life started changing slowly and I didn't even notice. 

Looking back, I think I knew my mobility was going down hill but I always used to blame the pain and stiffness on the seizures. 

2021 came.. It was one of my worst years. Multiple injuries. Bruised and battered legs. A black eye and fractured eye socket. I ended the year on crutches, unable to walk properly, talk properly, tics started, seizures intensified, fatigue took over and brain fog became a permanent resident. 
My life completely flipped several 360s. 

2022 arrived. Life felt like i was doing rolly pollys down a awkwardly bumpy hill. Thrown in the oh for fuck sake, oh shit, ouch, bollox and other lovely curse words too for entertainment! 

Fast forward to now. Here we are in 2025. 

The last 3 years have been an absolute rollercoaster of pure Wtaf moments. Good, bad, heartbreaking, fist clenching, belly laughing, teeth grinding and absolutely thank fuck for that moments. 
Over the last 3 years, I've had 6 referrals, to 3 different hospitals in 2 differnt counties reject me for help and support for my FND. All of which I've had no reasons as to why they rejected me other then "I'm too complex"! 
That doesn't help. 
I've had nasty, unneeded, shitty comments thrown at me online and face to face. I've been left out and dismissed by so called friends and actual family. My mental health completely went to shit and still has moments now. I can no longer do things I love or have a passion for due to my  FND. I need care 24/7 just in case I have a seizure. 

The good bits.. the friends I made, my chosen family I've gained, the absolutely amazing community I'm a part of, reigniting the love and passions I had as a child and using them to help me through my bad times, being an advocate and having a voice for the disabled community, my writing, this website.. the list goes on but I really don't wana bore you with my nitty gritty bits haha! 

Life right now is hard.. anxiety had recently decided to move in, but I'm taking steps to get those walls broken down and gone. For me.. I have the joys of paralysis, tics, seizures, limb weakness, fatigue, brain fog, speech issues, tremors and pain. im currently on my 7th referral for FND. I've not seen or spoken to anyone about it professionally since my diagnosis back in 2017. And although I'm not holding my breath.. I am hoping that I'm not rejected again. 

But something I truely have learnt over the years.. 

We may all have the same label.

We may all have the same symptoms.

Bht we are all so different that we all experience everything differently! Nothings a one size fits all!

I can't say what the future holds for me with FND.. and I can't say what the future holds for FND.. In the medical world or our worlds. Living with this absolute brain frazzling disorder. But I do know I will live as fully as possible. I'll achieve my dreams and goals where possible.. and I certainly won't stop advocating for the FND community. 

I've got a voice and I'm guna use it!!