FND Awareness Day UK | 25th March 2022 | Leefern’s Story

In 2020 my world changed. 

I got diagnosed with FND after my husband googled my symptoms. We then spoke to the hospital who said I have FND, had had it for years and didn’t I know this? We attended an appointment at the hospital and it was confirmed I have FND and nead. 

We were told to go home and Google all the information we needed. We were told we needed to find support groups as not many people knew what FND was. There was so many questions yet so little answers. We got through 2020 in a blur. I was trying to fool myself into thinking I would get back to how I was before I got ill, and I was listening to people telling me there was nothing wrong with me. I was struggling so much to get my head around it all. 

Then last year I started to realise I needed to look for the positives in every day, even if they were tiny positives and some days are harder to face than others. I started to learn my limits. I started to realise just because I have FND doesn’t mean I can’t still be me. 

My illnesses shouldn’t define who I am. My illnesses are just part of the bigger picture. FND affects every part of my life but for me it affects my sleep. It means I either sleep a lot or not at all, it causes pain because my muscles to not do as I want. It causes me to spend a lot of time in bed as I can’t just get out of bed and go downstairs like I used to do and means I have to plan my day . 

The most frustrating thing with having FND is people don’t know what FND is. They either ignore me and speak to my husband if they see him as if I’m not there at times, sometimes and it’s so hard not to shout. They also try to give advice they feel is helpful, like if you go outside or do more exercise it will help. I’ve learnt to listen to the advice and try to change the views. 

I’ve learnt to have my own voice and having FND gave me that voice x

Written by Leefern, Leominster