I wrote this for FNDaction as an awareness story for Functional Neurological Disorder (FND) Awareness (but wanted to share it here too 🙂
March 25th marked Functional Neurological Disorder Awareness day, so I wanted to share my story to help with awareness! FND can manifest as a variety of cognitive and sensory symptoms and is often difficult to diagnose due to the lack of understanding in the area. For me, I first experienced FND age 17, when I began experiencing seizures and moments of weakness.
The Fight for Diagnosis
I didn’t have any history of seizures so I was pretty scared when I first started having them. The doctors thought it might be my heart at first, and then epilepsy or diabetes, but I wasn’t getting a diagnosis. One doctor said to me I was ‘just susceptible to fainting’ and i’d ‘grow out of it’! It took three years and not until I was mid way through university to finally be diagnosed with Non Epileptic Seizures also known as Functional seizures. I was basically told I could try some therapy but otherwise there was no fix!
I was crushed, I still didn’t really understand why this was happening to me and I was having to deal with my university who were telling me they thought I was too unwell to be studying and suggesting I leave. I’d struggled to get my A-levels due to missing so much class (due to FND) and was so scared I wouldn’t get my degree. Luckily I had a disability mentor at uni who was very supportive and a GP who took me seriously.
FND and Me
My seizures manifest as mild fitting and a loss of consciousness. Sometimes I get a bit of warning, other times I drop crossing the road or mid sentence- it’s pretty scary. I’ve tried multiple medications, and epilepsy medication has reduced how bad my seizures are, though sadly not stopped them happening. These seizures leave me groggy an feeling like i’ve been electrocuted. I often get physically injured as I hit the ground like a sack of potatoes when they happen. On one occasion, I hit my head so hard I actually lost my whole memory! The physical stress of having FND has been a gateway for other health conditions and you learn to be very self aware of new symptoms. You pretty much need to be your own health advocate.
I’ve now had my FND and my seizures for ten years and don’t think they’re going anywhere. Although they’ve caused me a lot of issues, i’ve always fought to work around them and have been able to complete my degree, a graduate scheme, enjoy hobbies (like costume making) and still work – albeit from home.
I’ve been fortunate enough to have many understanding friends and also to meet a loving, patient partner who supports me with the ups and (literal )downs of my disability! I can’t travel by myself as public transport is a real issue for me and i’ll never be able to drive but i’m very grateful for all the good I have in life.
FND is real. It’s not a lot of fun, and there’s a real lack of knowledge in the area- but it doesn’t make you any less of a person. The area needs more research, more time and more people talking about it, just like today! #Wecare4FND
More information about FND at FNDaction
The FND Awareness image and FND Action Logo belong to the charity.
Laters,
Ruthy xo
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