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Functional Neurological Disorder (FND) Myths, Stigma & Recovery with Carolyn Sullins, PhD

The Conditions for Recovery Podcast

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“You can’t focus exclusively on one part of your body or mind and neglect the rest.”

In this episode of The Conditions for Recovery Podcast Carolyn Sullins, PhD shares her journey from decades of medical gaslighting and misdiagnosis to feeling back in control of her symptoms and her life.

Carolyn now has a diagnosis of Functional Neurological Disorder but it took a long time to reach that outcome. Along the way she faced a huge amount of dismissal, stigma and self doubt.

Carolyn brings her expertise as a researcher to the table to help to increase understanding and support for others living with FND.

Even though Carolyn does not live with persistent pain her insights and experiences will be recognisable to many people with long term conditions and I know that this episode will be exceptionally valuable to many more people than just those with FND.

In this episode, we discuss:

Carolyn’s long journey to an FND diagnosis: The stigma and self doubt that came with being misunderstood.

Why symptoms can be real, life altering and vary significantly without showing up on standard scans or tests.

How collaborative, individualised physical rehabilitation helped Carolyn regain confidence and function.

Why Stress, Trauma and Mental Health Matter: Without being used to dismiss someone’s physical experience.

The Need to Move Beyond One Size Fits All Healthcare: Listening to people as whole individuals.

Chapters:

00:00 Intro
01:10 First symptoms & early confusion
02:46 The frustration of misdiagnosis
04:36 The impact of medical stigma
08:43 COVID-19 & the breaking point
10:49 Discovering FND: A sense making moment
13:37 Starting the treatment journey
19:25 Why whole person care is essential
30:35 Research, advocacy & systemic bias
50:53 FND: Moving beyond just trauma

Connect with Carolyn:

LinkedIn: LinkedIn: carolyn-sullins-phd-3b89582a

Substack: https://drsullins.substack.com/

Connect with the Show:

Links: www.paincoaching.co.uk/links
Follow: @SpecialistPainPhysio

Other resources:

Neuro Symptoms: https://neurosymptoms.org/en/

FND Hope: https://fndhope.org/

BOOK YOUR FREE 30-MIN CONSULTATION WITH GEORGE:

https://www.paincoaching.co.uk/consul...

#FND #functionalneurologicaldisorder #gaslighting #livedexperience #conditionsforrecovery

Disclaimer: This podcast is for informational and educational purposes only and does not constitute medical advice, diagnosis or treatment. Always consult your qualified healthcare professional or personal clinician before making any decisions about your medication, treatment or approach to your health.

9 Comments

@Real_won 3 weeks ago

Omg i get weirded out in grocery stores too...the lighting and looking around while moving makes me dizzy and nauseous 😮

@med77m26 1 month ago

I was recently diagnosed with this after 5 years of having a TBI due to a gun shot wound. I was told that the TBI and trauma and or years of trauma and history of health problems. I have the pain, physical conditions, eye issues including tunnel vision, pain, migraines, memory issues so bad that I thought I was getting vascular or frontal
Lobe dementia .I do have simple aware seizures and have had clonic and tonic seizures. Vestibular issues, fatigue and weakness. The brain becomes cross wired and so it is not structural damage but does change the brain and the signals are being misfired. I live in America as well and of course the UK has much more research and treatments for this condition. Yes, the stress is huge! I am the same as this great and brave woman that has been highly educated and years working in the health field. So disgusting how these clinicians are treating patients like this! I do think the functional name needs to be changed because your average person think as functional as you are able to function in fact you cannot function with this! Everyone is different and know their own body and need to be believed and lustened too . Why in the world would someone with an education or experience fake or want to not be functional .. how could anyone think that you would be lying or faking this is absolutely ridiculous because it’s absolutely miserable and those that have this would rather be working and out there having fun and living life!

@Real_won 3 weeks ago (edited)

Something very similar happened to me in 2018 for 6 months.... I had my colonic jerks I had tremors and I couldn't walk very well..... I had severe pain in my face head and neck. I couldn't eat and I lost 50 lb in 3 months. Dizziness, light headed, shortness of breathe etc..thought I was going to die and I got no answers. I saw 14 different Specialists that did not know what in the hell was wrong with me. I had to do my own research and realize that I may have occipital neuralgia trigeminal neuralgia and something going on with my central nervous system that was causing the jerks and the spasms. I am so grateful I came across this video I think I have more answers now. Thank you🙏🏼

@CarolynS192 1 month ago

I'm grateful for this opportunity to share. If you have any general questions, feel free to ask me in the comments. Please be aware I can't diagnose anyone or offer direct medical advice.

@ChrisBrandsma 1 month ago

I got FND from Covid, did not have it before. Similar situation, took 4 months to see a neurologist, told me it was FND and it was because of childhood trauma, and that was it.

I’ve had to put things together myself. But physical therapy has been very helpful.

@johnphillips2721 3 weeks ago (edited)

good stuff thanks for sharing!! enlightening I especially like the way you deal with the inner strugle those of us living with FND and interactrions with medical providers. I had one neurologist who told me there is nothng to do except pt to keep it from getting worse. Based on what im learning he was so wrong. Im enouraged working with a PT experienced with FND. and wating to get into the Hopkins fnd program. what i find annoying s others who have neurologica disorders (different ones) try to relat to us. I know they are trying to identify, but its frustrating when they equate it as the same. I voluteered to facilate a parkinson group. I dont have parkinsons but nobody else woul dlead it. one of the first things i learned was when youve met one person with parkinsons you've met one person with parkinson.. then nobody is the same. Im learning FND is also similar, in that in my experience not the same in everyon'es body. thanks again for being vulnerable and steping right out there!!!

@med77m26 1 month ago

Just like everything else in the medical field everyone is different and needs to be treated on an individual level so tired of this cookie cutter treatments. It needs to stop period! I completely agree with you both on treatment and how to change the treatments. I laughed when I heard functional in this name because I do not believe it is accurate… I said it’s anything but functional. It’s real and they know this now that it is a very real neurological disorder. It’s physical but we cannot see what the damage to the brain that is non structural, especially if you cannot have an MRI due to shrapnel, but even TBI is diagnosed with symptoms and the cause or physical damage to the brain. This condition like TBI damages the neurons and chemical structure of the brain. If you have had several concussions throughout your life that can cause this as well.

@lindasmith8771 10 days ago

With Conversion disorder the patient was thought to subconsciously convert psychological distress, trauma, worry, concern, anxieties into physical symptoms. Thus the physical symptoms were not fake symptoms they were a subconscious response to something.