“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.
The Women’s Brain Project had the honour and pleasure of interviewing Odette Placido, a WBP supporter, Podcaster, and Nurse living with FND for our WBP Let’s Learn Series. She shared her daily symptoms as well as discussing how this disorder disproportionately affects women.
The interview is available to watch on YouTube or even read below.
What is your name, where are you from, and what is your diagnosis?
Odette Placido: “My name is Detty and I’m from Melbourne Australia. I have FND or Functional Neurological Disorder. I just wanna say, thank you very much for having me— it is a pleasure talking to you.”
What symptoms affect your day-to-day life the most?
Odette Placido: “Because the Central Nervous System, affects a lot of the functions and that is what Functional Neurological Disorder actually affects, there’s a wide range.
At the moment, as you can hear I have Foreign Accent Syndrome, it’s fairly common in Functional Neurological Disorder apparently. One of my friends who has FND, she speaks normally and then ends up talking like a Kiwi. For me, I end up talking like I’m from England or somewhere from there. So it’s quite weird.
Also, I have flare-ups with FND every single day which is quite debilitating. I end up sometimes, not being able to talk, walk, everything all at once and then I’m completely depending on my husband to actually give me high-level care.
As of yesterday, I had lots of seizures as well, blackouts, cognitively I am impaired there as well. It just goes on and on. We could like be talking literally for about half an hour to an hour just listing off all the symptoms— dystonia, tremors, that kind of thing— but we won’t go there, it’s just too long.”
Do you have good access to treatment and services that meet your health needs?
Odette Placido: “Yes, I do. But it’s only because, and it’s common with other people who have Functional Neurological Disorder, that they actually have to source their own especially if they don’t know much about FND at the beginning or are not provided much. So a lot of research has gone on my behalf to actually find and get a good team behind me. And it just so turns out that people who are trying to seek treatment as well it’s just according to their symptoms because again as I said before there’s such a big range of symptoms. So whether it’s physical or cognitive it just goes on and on but according to what your levels are like. For me, I also have chronic pain, and I also have chronic fatigue too. So I went through a chronic fatigue course that was available to me and that was quite handy, learning about pacing.”
Have you experienced sex and gender bias in your healthcare journey?
Odette Placido: “Yes, and I’ve gotta say it’s really unfair. I have noticed that, especially nursing myself, you know, how people are being treated according to their gender as well. I guess we are socially integrated with that very early on, you know, growing up. My generation especially, you know, boys are meant to be rough and tough, and girls are meant to be absolutely dainty and you know, thoughtful and kind, you know. But it’s not quite right, is it? Especially the preference of us trying to look after the boys or after the men more so than women. We’re taught then to be more self-sufficient and be more like— we literally have these attitudes in the medical field. ”
What can we do to support you?
Odette Placido: “What we’re trying to do at this present moment in time, is basically, with people who have got FND, especially globally, we’re trying to raise awareness about FND and you know, make it prominently known, so that especially people with FND, can actually access readily great care from the very get-go and you know, receive appropriate treatments as well. Women are more affected with FND than men, and it would help tremendously to bring this more to the forefront, especially because it just needs to be known so that we don’t— with us who have FND, especially trying to receive treatment, we have to always explain what FND is. We have to always try and advocate for us.
It’s not always widely known so if Women’s Brain Project could also advocate for FND as well, I do believe that they are part of movement forward in regard to neurology and this is a very niche area. But it does need to be recognised because a lot of people are getting diagnosed every single day and it is worldwide as well. So many are affected, especially women. ”
How important do you believe the work of the Women’s Brain Project is?
Odette Placido: “Very important. Very much so. Because women, from the very beginning, have been targeted as these hysterical women who, you know, are just ‘having a moment’. And even now it’s all about being treated equally. You know, all of us are all humans. Even to this day, it’s so strange how men are getting paid extra, men are being cared for more in health areas, and certainly, women deserve that too. We all have to be equal.”
What do you wish more people understood about brain and mental disorders?
Odette Placido: “We’re not all hysterical. You’re having a flare-up, a moment, if you’re depressed, angry, or frustrated. If you’re having an episode with whatever you have, when someone says, “Oh well, is it your time of the month?” or “She must be having her moments.” when it’s not and I think that’s horrible. It’s absolutely horrible.”
If you had one message of hope for those living with a brain or mental disorder, what would it be?
Odette Placido: “You’re not crazy. You’re not going insane. There is a valid reason for what you are going through. Just keep persisting. Keep persisting for all the treatments there, and what you’re going through is very real. Don’t let anyone else, or any comments, or anyone out there actually persuade you otherwise. Stay strong and advocate for yourself. And support Women’s Brain Project.”
Thank you for allowing us to learn about Functional Neurological Disorder through your story.
Odette Placido: “Thank you so much for your time!”
A note from WBP
No one should experience any form of bias when seeking medical care. Everyone should have access to the correct and specific healthcare services that they need when they need them. This is why the Women’s Brain Project is working to establish the first Research Institute for Sex and Gender Precision Medicine for a Precision Medicine approach for all. Please consider donating to our organisation.
About Odette Placido
Odette Placido is from Melbourne Australia. She is a Podcaster and hosts The FND Podcast. She is also a mother and a Nurse.