“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 Jess Clough, a WBP supporter, Australian author and young woman living with FND for our new WBP Let’s Learn Series. She shared her experience from diagnosis and daily symptoms to giving advice on how to help support individuals like her living with this disorder.

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?

Jess Clough: “Hi, my name’s Jess and I’m from Australia. I have Functional Neurological Disorder or FND for short.”

What symptoms affect your day-to-day life the most?

Jess Clough: “My symptoms can vary not in just degree but just in general. Mostly I experience tremors, I experience seizures, functional limb weakness and dizziness. I have issues with mobility and I have chronic fatigue.”

Do you have good access to treatment and services that meet your health needs?

Jess Clough: “While I consider myself lucky because I’m in Australia so it does mean that I have free healthcare or at least some of my specialist visits are reimbursed by Medicare. But when I was first diagnosed it was a little bit of a struggle to seek treatment. Just because who diagnosed me saw FND as a mental health problem. So my treatment was very limited to just seeing a psychologist but lucky enough my psychologist was very versed in FND. It has been getting better now that I’ve seen a better neurologist who has a better understanding in FND. I’m now seeing a neurological physio. So things are getting better but they could be better again.”

Have you experienced bias in your healthcare journey?

Jess Clough: “Absolutely! I think being a woman and experiencing just a debilitating condition that you’re not sure what it is and that is very much impacting on your life and you’re trying to find out what’s wrong with you.

So my experience, I have endometriosis and FND, so I have two very stigmatised conditions. Endometriosis affects people with uteruses and unfortunately, it is quite under-researched. Look— the more negative person inside me wants to say that’s because it is a uterus-only disease— but yes, it took me 15 years to get diagnosed with endometriosis and that was because most doctors that I saw, saw me as a teenage girl that couldn’t handle pain.

With FND it wasn’t as bad, it took me a couple of years, but I think at the time, I was sort of seen as, yeah, a person with anxiety. So I very much had to advocate for myself and find a better doctor that would actually listen to me because I knew that anxiety didn’t cause seizures.

So yeah, I wanna put my sex as the reason as to why both of my diagnoses were stilted. I mean, statistically, we know women aren’t seen as seriously as men. Even down to, I think women have to wait, I think it’s around 56 minutes longer than men when they are presenting in an emergency room seeking pain medication or pain relief. So men get it right away, women statistically wait around 56 minutes longer to actually be taken seriously. So it’s not an anecdotal thing, it’s very much a real issue.”

What do you know about Women’s Brain Project?

Jess Clough: “So what I know about Women’s Brain Project is they centre their research around the experiences that women have in the medical field. In terms of both mental and neurological brain problems or diseases or disorders. So it’s shining a light on what women go through because women are different than men in how they experience these issues and not only that, we know that in a textbook or in studies it’s usually the male anatomy that is always focused on and not the female anatomy. That in itself is ridiculous. So I very much appreciate what Women’s Brain Project is doing.”

What can we do to support you?

Jess Clough: “Me, personally, just as a woman with Functional Neurological Disorder, I would say just shining more light on what FND actually is. FND does statistically affect women more than it does men. So I think that there could very much be something that Women’s Brain Project could do in terms of advocating and spreading awareness.”

How important do you believe the work of the Women’s Brain Project is?

Jess Clough: “Extremely important! So just to go off what I was saying, statistics show us that the medical field does not see women as seriously as men. We are very much seen as emotional and hysterical beings and because of that there is this unconscious bias in the medical field when looking at women and treating their illnesses and I think that because of that, women have it really hard when seeking diagnosis, to the point that some women stay undiagnosed their whole life.”

What do you wish more people understood about brain and mental disorders?

Jess Clough: “I just wish they knew how hard it was and how debilitating these disorders are just in terms of everyday life. So on the inside, I am constantly fighting a battle with my disorder even though I may appear on the outside as doing well. I’ve experience a lot of stigma against just “oh well you were fine yesterday so why aren’t you today?”

It really is such an ignorant frame of mind that it’s almost unbelievable that people think that. So I really wish that healthy people or people without these disorders could actually experience— well I don’t wish that— that they would actually know how difficult living with these conditions are because it is a constant battle and it is a 24/7— basically it’s a job. A job trying to get on top of your symptoms and trying to live as much of a fulfilling life as possible as you can with your illness.”

If you had one message of hope for those living with a brain or mental disorder, what would it be?

Jess Clough: “It’s really, really important just to remember that even though you can really forget, I guess, your purpose in life and the meaning of life, if you want to get philosophical about it because of how heavy and how negative your experience with your condition is. You just have to keep reminding yourself every single day. So it’s really looking at the small beauties that you see in everyday life.

For example, it’s going to sound very soppy, but I was in the car the other day and I happened to look up and I saw a flock of birds flying in unison and they created such a spectacular pattern in the sky and just seeing that really made me sort of shift my perspective to you know, even though the experience that you’re going through right now is really heavy and really dark and you don’t know if you can make it there is always a reason to keep going.

This situation is only temporary because even if you have a diagnosis that is long-lasting, such as FND, it doesn’t matter because it will get better either way because your perspective is always gonna change, you’re always gonna do better mentally and you’re always gonna find something to put your purpose into. So yeah, definitely stay hopeful. It gets worse but then it also always gets better.

Thank you for allowing us to learn about Functional Neurological Disorder through your story.

Jess Clough: “Thanks for having me!”

A note from WBP

No one should experience bias when seeking medical care. Everyone should have access to the correct and specific healthcare services that they need. 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 Jess Clough

Jess Clough is an Australian author living with FND, Endometriosis, Chronic Pain/Fatigue and Dysautonomia. She is regularly on The FND Podcast, on the “JJ segment”  following her journey with FND.

Follow her on Instagram: @jessmcfarlaneauthor or @functionallyjess

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