“Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system and how the brain and body send and receive signals.” –FND Hope International
The many symptoms of FND can cause impairment in quality of life that is similar to and in some aspects worse than other neurological conditions like Parkinson’s Disease or Multiple Sclerosis. FND occupies a grey area between psychiatry and neurology that historically has failed to gain the interest of researchers and clinicians.
Approximately 1/3 of outpatient neurology clinic attendances are patients reporting functional symptoms. Despite the prevalence of Functional Neurological Disorder, the exact cause of FND is unknown.
The Women’s Brain Project had the honour and pleasure of interviewing Tom Plender, a WBP supporter, musician, artist and FND Campaigner living with FND for WBP Let’s Learn Series. He shared not only his own experiences, but also some of the history of this diagnosis and the stigma that still surrounds it even today.
You can read the interview below or watch it on YouTube.
Learn about FND with Tom Plender
What’s your name and where are you from?
Tom Plender: “Hello, my name is Tom Plender and I’m a musician and FND Campaigner from London in the UK.”
What is your diagnosis?
Tom Plender: “My condition is FND or Functional Neurological Disorder.”
Have you ever experienced bias in your health journey?
Tom Plender: Stigma is a huge issue with FND, there are many different aspects to it and certainly in the last 20 years of being in hospitals and consulting rooms I’ve seen a fair bit of it and experienced a fair bit of it. I think that the main stigma that you face as an FND patient is the accusation from medical professionals that it’s all in your head, that you’re making it up, that you’ve got some sort of repressed emotional trauma that you’re in denial about.
The truth about how trauma relates to FND is actually very complex. The old way of looking at it, which is the theory that sort of ends up leaving many FND patients stigmatised, is the Freudian idea. It stems from Freud’s book Studies on Hysteria that he wrote with Breuer and one of the problems with this book is that since the opening up of the Freud archive, there’s been a lot of new research that’s become available, new evidence that shows that Freud actually falsified a lot of the information in this book. Many of his so-called “Hysteria” or “Conversion Disorder” patients didn’t in fact get better as a result of his treatment, in fact, many of them got worse. So the problem with this theory is it’s just too simplistic. Many FND patients do have psychological trauma but many don’t.
In fact, most of the evidence now is showing that FND is a brain network disorder. So say, a disruption of the normal function of brain networks. The other aspects of the stigma that many FND patients face relate again to the theory of hysteria; it’s sort of this idea that women are less rational than men, that they’re more emotional, and the idea of this sort of very 19th-century idea of the Hysterical woman. There is in fact a fair bit of evidence to show that these kinds of biases are still with us. I mean, I was looking at a study from 2021, that said that women with chest pain are much more likely to be diagnosed with anxiety than men. So it’s clear that women who are suffering from serious heart problems are being misdiagnosed or it’s taking longer for them to get the correct diagnosis because of these kinds of biases that are still with us unfortunately and that really need to be addressed.
So it’s a mixture of these sort of very old-fashioned ideas which are quite sexist ideas and also the fact that FND patients have been stigmatised for over a century largely down to Freud propagating his Hysteria or Conversion Disorder theory.
So these issues, do need to be addressed because they’re just not fit for purpose in the 21st century particularly given the latest research using FMRI scans showing not only disruptions to the brain networks but also there may be underlying biology to FND, alterations to the grey and white matter. So it’s a very complex condition and it needs to be looked at from a 21st-century perspective, with a very nuanced view.”
In your opinion how important is the work of the Women’s Brain Project?
Tom Plender: “I think the Women’s Brain Project is important because men and women do have different health needs and I think particularly when you look at a condition like FND because a certain amount of stigma and sexism is kind of hardwired into the history of the condition.
It is very important to look at some of these stereotypes and biases and how they relate to neurological conditions and mental health conditions historically and try to address them as I said before from a modern 21st-century perspective where we’re thinking more clearly and more scientifically about these kinds of issues.
So I’m very glad that I’ve been asked to talk to the Women’s Brain Project about FND and my experience with FND.”
What do you wish more people understood about brain and mental disorders?
Tom Plender: “I think what I’d like more people to understand mental health conditions and neurological disorders is — I think one of the problems we’re facing is that our medical systems aren’t really equipped to deal with the complexity of a lot of these conditions.
One of the problems stems from this splitting of the physical and psychological so this idea really stems from Descartes the 17th Century French philosopher who announced that the mind and body are separate and these kinds of ideas that sprang out of the scientific revolution and the enlightenment which have been with us for several centuries and are kind of the foundation of our medical systems and the way we view things culturally; we tend to split things into either physical or psychological, either neurological or psychiatric.
One of the problems is that the brain doesn’t really work like that if you look at for example, an area of the brain called the insular cortex, it has multiple roles; one of the things it does is it is responsible for emotional processing, it’s also responsible for pain processing, it also plays a role in managing movement and motor function, it may also play a role in consciousness and creating our sense of self.
So that’s one brain area that’s doing multiple different things and I think what a lot of the research into FND is showing is that essentially areas of the brain that control pain, movement and emotion are so deeply intertwined that it’s very hard to sort of split the brain into the physical versus the psychological so I think there’s an extent to which there will have to be a kind of big paradigm shift in our thinking and I think this would be really helpful for many conditions.
It’s possible that we will see greater collaboration between neurology and psychiatry and in the 21st century I hope we might even see a sort of collapsing of the two disciplines into each other as time goes on and perhaps looking at things more as brain disorders rather than this kind of false split between what is physical and what is psychological.”
If you had one message of hope for those living with a brain and mental disorder what would it be?
Tom Plender: “In terms of giving hope, I think there’s no doubt that having a very severe illness is one of the toughest challenges that you can go through in life. Particularly when it stops your life in its tracks, it affects your ability to work and earn a living or even affects your ability just to enjoy life. I think that it is enormously challenging.
One of the things that helped me was a quote that I read, in fact, a friend told me about, and it’s from Winston Churchhill, and the quote is, “If you’re going through hell keep going.” I ended up writing it down and pinning it to my fridge and it kind of got me through a lot of tough times and I think that is one of the important things is just to keep going, keep hanging onto hope. I think when you’ve had hope dashed multiple times as I did, and many FND patients will probably relate to this in fact patients with many different conditions will relate to this — when your hope has been dashed many times you can end up in a situation where you start thinking maybe there’s no point in having hope anymore because it all seems so desperate.
But I think one of the things that helped me a lot was actually something my dad said when it was about 6 years into my illness and I was extremely unwell and none of the doctors seemed to know what was wrong with me. I was talking to my dad, I was in a really desperate state, and he said well, “Look, I know things are really bad and obviously you’ve seen a lot of doctors and it looks like they haven’t got a clue really what is wrong with you and at the moment it looks hopeless,” he said, “But medical science does move on very quickly and even though we haven’t got an answer now, the chances are at some point in the future we’re going to find a solution. What we’ve got to do is we’ve got to keep going, we’ve got to keep looking and there will be an answer out there and even if it’s not here now, you know, we’re going to find it.”
I think, in fact, my dad turned out to be right, I mean it took another six years but eventually I met Professor Edwards, who had been researching FND and was looking at the condition from a different perspective, more as a kind of movement disorder rather than this very outdated Freudian idea, and had in fact developed with a physiotherapist, who treated me, Glenn Nielsen a different way of approaching FND, this kind of movement retraining approach based on ideas about the brain making predictive errors relating to movement and motor control.
So in fact, my dad was right, medical science did move on and it did provide the answers so I think the important thing is just to keep going, to keep hanging on in there, and keep that faith that even though you haven’t found a solution, there is one out there and you will find it. And that’s the best advice I can give really is don’t give up you know, keep plugging on.
A note from WBP
Research on neurological disorders like FND needs to be prioritised. The Women’s Brain Project commissioned the Economist Impact White Paper titled Sex, Gender and the Brain: Towards an Inclusive Research Agenda to examine the economic rationale for investing in sex-and-gender-specific brain research. This is one of the many things the Women’s Brain Project is doing thanks to the generosity of our supporters, members and sponsors; please consider donating to our organisation today.
About Tom Plender
Tom Plender is a musician, artist and FND campaigner from London UK. He had music lessons from an early age and went on to study drums, percussion and piano at the Guildhall School of Music. Throughout his late teens and early 20’s he worked as a professional musician performing with many of the leading jazz musicians in the UK. At the end of the 1990’s, he developed the condition FND [Functional Neurological Disorder] which left him profoundly disabled and unable to continue his music career.
It took over a decade to find a diagnosis for this poorly understood condition, but in 2012 he met the neurologist Professor Mark Edwards, now recognised as a leading researcher in the field, and was part of the first wave of patients to receive a groundbreaking new treatment approach, mostly comprised of neuro- physiotherapy movement retraining. Tom is committed to campaigning and creating greater awareness for FND, he advocates for the charities FND action and FND Hope, and has been the subject of several television and newspaper articles discussing his experience of the condition.
His website: tomplender.com