What is FND?

“Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals.” – Dr. Jon Stone

In more technical terms, FND is a brain network disorder – a breakdown in the normal communication patterns of the brain. FND can be triggered by a variety of events, including injuries, surgery, or emotional stress, and it creates real and often devastating disability.

Who are you?

I’m a person with FND. I’m also an FND and disability advocate. I keep my name private because this is the internet, and I want to.

Why should I listen to you?

Well, if you’re a person with FND, then we have something in common. I know what it’s like to live with the pain and disability of FND. And how it feels when no one understands.

Because of that, I do my best to contribute to the FND community, where I work to bring together scientific and lived-experience perspectives.

Wait wait wait. So if you’re a person with FND, and not a doctor or researcher, what qualifies you to write about the medical, science-y stuff?

Glad you asked! For me, learning about my symptoms was something of a necessity. It took me the better part of a decade to get an FND diagnosis. Before that, most doctors thought I had a rare, undiagnosed condition. I was often called a “medical zebra” and told I’d likely never recover. I didn’t like that very much, so I tried to understand my situation by studying anatomy, physiology, and neuroscience.

This isn’t the same thing as expertise – I don’t have an MD, or a doctorate in neuroscience – but that background knowledge did prove helpful when I eventually got a diagnosis. In short, I understand the language that brain scientists speak, and the broader neuroscientific context in which FND is situated.

So then, my CV:

I currently hold (or previously held) advisory roles with the American Academy of Neurology, Toronto Western Hospital’s Movement Disorders Clinic, the Katerina Fotopoulou Lab at University College London, the National Hospital for Neurology and Neurosurgery, and the Functional Neurological Disorder Society. I’ve consulted on scientific articles, grant applications, and the development of an FND app. My writing on FND has been called “required reading for all neurology trainees” by expert FND neurologist Jon Stone. I’ve created undergraduate-level neuroscience tutorials that are in use at several universities. I’ve made videos for FND Hope, run a very active FND Twitter account, and advocate for people with FND in many contexts.

What’s the purpose of this page?

I hope this site will be a helpful resource for people who have FND and people who want to learn about it.

On the science side, I’ll do my best to explain what new brain research shows about FND, and what that means for people with the condition … and everyone else too! FND may arise from intrinsic mechanisms of the brain, which is why some scientists think that illuminating FND might be valuable not just to the people that have it, but anyone who wants to understand the human brain.

This is also a space to tackle the social issues of FND. Historically, FND is among the most stigmatized health conditions – it once went by the names of Hysteria and Conversion Disorder – and the way that medical and social authorities have misunderstood it, and mistreated people who suffer from it, is one of medicine’s most dramatic failures. Now, that is beginning to change – but there is still much work to do in understanding what went wrong, and what lessons to take from this shameful legacy that still impacts people today.

Thanks for checking this out! I hope you discover something here you find illuminating, meaningful, or at least thought-provoking. You can find me at @fndportal on Twitter.

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