Tuesday 14 February 2023

Guest post by Rebecca writing about FND

“About 1 month ago I was diagnosed with FND, Functional Neurological Disorder. My initial reaction was relief and empowerment, finally, after 2 years of unexplained symptoms I was given a name for thief that had stolen my life away. However, I soon discovered that the letters ‘FND’ are accompanied by contradictions, at times prejudice and frequent misunderstandings. In short, the diagnosis felt somewhat like being thrown a fantastic gift, grasping it for just a brief moment before watching it slip through my fingers and smash on the floor. 

Certainly, the same emotional cycle of optimism, hesitation, disappointment and embarrassment followed. Optimism that a diagnosis would lead to answers, being heard and understood. Hesitation followed, caused by confused and contradictory explanations. I felt disappointment in the reaction of health professionals and lack of support provision and finally embarrassed by the assumptions, invasive questions and shocking stigma attached to the diagnosis. 

Both a blessing and a curse, FND was a common disorder that no one had heard of, an enigma of disability, real, but “not real”. I quickly discovered, my journey hereafter was going to be an unusual struggle, finding health, respect and rationality again. 

Thankfully, I also discovered I wasn’t completely alone! A few super strong and brave people were not only battling life with FND, but also battling the misinformation out there. Sharing knowledge and cultivating respect for people with FND. These voices, although few, provided clarity and confidence. Pulling others, like me, out of the ambiguity and creating a place of solidarity for them.

My hope, arriving in this strange new place, is that more people with FND will be empowered to voice their experiences, to shake off the offensive outdated language used around FND, and to deepen empathy within their communities based on knowledge and understanding. It’s time for FND and those suffering, to be understood, accepted without bias and listened to! Fighting Negative Discrimination!”

What is FND?

FND is a problem to do with the brain’s messaging system. It’s a bit like when you’re in a car an you go to press the break pedal but insteadc the indicators come on. This is what happens in our brain; it tries to do one thing but the messages get tangled up and misfire resulting in a wide range of different symptoms.

  • For more information about what is FND and links to further resources visit my page on FND here