Thread by @lucy__jacksonx

🧵: So this month is #FNDAwarenessMonth! And most people have never heard of #FND, so I thought I’d explain in an obnoxiously long thread how it’s affected me:

Functional Neurological Disorder is a very complex condition, but put simply it’s when the brain doesn’t send the right signals to the rest of your body. There’s no physical damage to the brain, but for whatever reason the signals aren’t sending correctly.

A good analogy for this is to think of FND as a software issue rather than a hardware issue, which we would use to describe a broken leg, for example.

This can display itself in many different ways and symptoms are vastly different for different people, making it harder to recognise and diagnose quickly.

For me, I gradually lost the ability to walk, until I physically couldn’t anymore. I can’t even describe what its like to go from being a very active person spending 12 hours on their feet at a time bartending, going to the gym etc to suddenly not knowing how to walk at all.

I also have other symptoms like severe pain and fatigue, a functional tremor in my right leg, loss of sensation, numbness, tingling and dissociative seizures. My symptoms change in frequency and severity all the time.

Thankfully, I’m in a brilliant rehabilitation programme back home that I’m very lucky to be in, but it wasn’t always like that. I first experienced symptoms last September, and it took a while for a medical professional to diagnose me.

This is typical for most people with FND; we experience barriers often in the form of medical professionals who either do not know about the condition, or who do not find it plausible, which is why #FNDAwarenessMonth is so important!

I was back and forth between my GP, out of hours, and A&E for a month. On one visit, a (male) doctor dismissed my symptoms as my period (which wasn’t due for 2 weeks). He said I was making ‘a big deal out of nothing’.

On another visit, a doctor genuinely told me that my symptoms were ‘all in my head’. She confiscated all of the pain medication I had previously been prescribed, told me that she would get me someone else to talk to, and then discharged me whilst I still had a cannula in my arm.

At this point I could barely walk. I was crying because I was in pain and frustrated, I wasn’t being heard and my genuine symptoms were being dismissed. She told me that I was crying because nothing was wrong with me, and that I needed psychiatric help.

Finally about 2 weeks later, I was admitted to hospital, where I stayed for almost 2 months. I was initially in the gynaecology ward for 2 weeks due to pelvic pain, but no one could find anything wrong. I was carted back and forth to the toilet from my bed in this monstrosity.

Finally someone from general medicine, and then neurology, came to assess me. I was diagnosed with FND and moved to the neurology ward, where I stayed for about a month. Here I had physio every single day, and the things I learned there have been invaluable in my recovery.

It was a really difficult and lonely time in hospital; I was only allowed 2 named visitors, and I had to take the year out of Uni too. I also became dependent on oxycodone through no fault of my own. Opioids make functional symptoms worse and do not help long-term.

(Side note, I should be completely off it this time next month, so go me!)

I finally got out of hospital on December 1 and travelled back home. We navigated a couple of horrific months without access to physio and in-person care, but finally I had my referral to a local service and I was able to have carers come every morning to help me get dressed.

Since I started rehab back home I have made insane progress, I can stand for much longer periods of time, my leg barely shakes anymore and I no longer need to use a walking stick, let alone a wheelchair. I can see myself being back at uni this year!

It took a lot of hard work and many many sacrifices to get here. But yesterday was the last time I had a carer come and look after me, and today I took a walk by myself for the first time in seven months.

It is so so important that people are aware of FND and understand how life changing it can be. There is lots of stigma around it, but it is a very real condition that inflicts very real pain.

I am a 20 year old student, I lost everything despite being healthy and active. I became wheelchair-bound, could not look after myself, and am now further separated from my friends and my life at university.

I understand why my symptoms were misunderstood; I had xrays, ultrasounds, blood tests which all came back negative. FND doesn’t show up on scans. I don’t blame these doctors for not knowing about every medical condition, FND isn’t widely taught, but it’s clear there is stigma.

But it should be widely taught. I made myself extremely vulnerable trying to access help, and for a while all I got in return was a brick wall. I was made to feel like I was a stupid, naive twenty something who did not understand the real world.

I’m in a place now where I can talk about how FND has affected me. But a couple of months ago I wasn’t in that position, and I know that there are many people affected now but unable to talk about it.

Please please please, read what you can about this condition. Listen to people who have it, fight against the stigma that surrounds it. This condition ultimately needs to be taught more; just because you don’t understand something doesn’t mean it isn’t real.

I’m very lucky in that I can see my life returning to the way it was, and that it’s only been seven months and not seven years. Please share this, read other tweets about #FNDAwarenessMonth, ask about things you don’t understand, and don’t dismiss it.

Here is the most comprehensive resource to help understand FND:
neurosymptoms.org/en_GB/

And if you have any questions at all or would like someone to talk to, I’m always here 🧡💙