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Living with Functional Neurological Disorder (FND): My Story

After so many guest posts for my What It’s Like Living With series, I thought I’d contribute myself and share what it’s like living with Functional Neurological Disorder (FND).

It’s been over three years but I finally know what’s wrong with me (part of it, at least) and why it happened. I’m living with a chronic illness called Functional Neurological Disorder (FND) which I developed after trauma. There are many different types of FND, but the five I have are dissociative seizures (Non-Epileptic Attack Disorder), persistent posturo-perceptual dizziness, functional limb weakness, functional tremors and functional myoclonus. This link has information on living with FND and the different presentations of it. You can also check my YouTube video on how I explain Functional Neurological Disorder for more information.

How Functional Neurological Disorder Affects My Life

FND affects every aspect of my life, from whether or not I can get out of bed to the clothes I can wear. I have to use a wheelchair when I go out because I can’t walk far at all. I’ve had my driving license suspended due to seizures. I can’t do anything by myself.

The Invisibility of Living with FND

On the outside, and even the inside, I look like a normal 18-year-old but I’m far from that. You wouldn’t know about the countless blood tests and IV lines I’ve had. You wouldn’t know about all the tablets I’m on and have tried in the past. You wouldn’t know I’ve had X-rays, ultrasounds, an endoscopy, a CT scan and an MRI. You wouldn’t know that all of those came back clear.

You wouldn’t know that I’ve seen four teams of paramedics, been in three ambulances and had three hospital admissions, and consequently have nurses and doctors recognise me. You wouldn’t know that I’ve had countless A&E trips and helped take my own blood. You wouldn’t know I’ve had times I’ve had to be on oxygen.

You wouldn’t know about all the specialists I see. You wouldn’t know that doctors don’t believe me, have blamed everything on anxiety and have accused me of having an eating disorder.

You wouldn’t know that I’ve had days when I couldn’t eat or drink. You wouldn’t know that there were times I thought I was going to die.

You wouldn’t know that my brain isn’t functioning properly.

The Impact of FND on Friendships

One of the hardest things I’ve had to deal with since getting sick in 2017 was losing friends. I can’t even count the number of friends I’ve lost to chronic illness. The only good thing about this is I now know who my true friends are. Yes, I only have a few friends who have stuck by my side, but they’re amazing and try to understand everything that’s wrong with me and my limits.

What I Wish I Knew Before Being Diagnosed with FND

I wish I knew how much people blamed me for being sick. I’m not in control of my body or my brain. People say that my brain is ‘just playing tricks’, but that’s not right. When you have Functional Neurological Disorder, the signals to parts of your body are impaired, meaning they get sent to the wrong place or don’t get sent at all. I don’t control these signals and it’s not my brain purposely sending the wrong signals.

Doctors used to use the term ‘psychosomatic’ instead of ‘functional’. This makes understanding FND more difficult because it implies that FND is under the patient’s control. IT IS NOT. 

Yet somehow, living with FND is possibly the best and worst thing that has ever happened to me. It’s hard to explain. If I wasn’t going through all this, I wouldn’t be who I am today, and I’m thankful for that.

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