Lived Experience Forum

[Elenor]

Life does not prepare you for the most aggressive disorder i have been faced with, the second most common reason for Neurology visits, yet it is quiet. Why is it so quiet? Functional Neurological Disorder sits on the blurred lines of Neurology and Physchology. FND sits under mental health on the government lists of disorders. Previous names were Conversion Disorder and later it was known as Hysteria. We know about anxiety, depression, bpd, bi polar yet FND is quiet. 

Onset happened 3 years ago, I was working the bread winner, I was a disability support worker whom loved her job. It gave me a sense of community and a space within society that I had never felt, I live with a limb difference and obtaining work was so hard so I fell into disability. The most beautiful thing happened my clients looked at me as human. 

I was on shift on a Friday and kept collapsing at the shopping centre, I waited for my clients taxi, and went home, I went to hospital knowing something was very wrong. I wasn't prepared for the level of gaslighting and torment being thrown out of emergency for a month, but i persisted. I knew something wasn't right. They finally suggested it was FND and I felt relief having a diagnosis. Yet the treatment was please go to your gp and get on meds for your mental health you will be fine. 

I couldn't walk, talk, think. I had periods of loss of conciousness, words sounded weird, I had seizures, tics, tremour, walking and gait issues, drop attacks, Void outs, dystonia in my limbs, speech and swallowing issues, functional stroke symptoms, vision loss, aphasia I had every symptom FND could offer. 

I went back to hospital as my gp didn't know what to do, I demanded some outpatient therapy as I knew the hospital had one from my previous work with clients. 

I was put on a wait list and declined in bed, my partner had to shower me, dress me, take me to the toilet as I was a lifeless shaky shell. I couldn't fathom how my past history of sexual abuse, physical abuse, bullying over my arm, domestic violence had anything to do with how my body was declining, it made no sense to me. Just get on meds and you'll be fine they said. 

I finally got into rehab to relearn to move, which was intense and hard. They greeted me with such kindness and a great understanding of FND I was treated with respect and dignity. They told me it was a brain network Disorder a software issue rather than hardware, I slowly learnt about FND and the predisposition for myself. Many others don't have trauma as a cause, however my experiences within life gave me the predisposition for FND later in life.

The causes for FND are unknown however some have trauma that changed the brains pathways. 

I cut off my family and old trauma bonds after understanding those who hurt me aren't healthy to be in my life. I did the self work myself, revisiting old trauma and understanding them alone as psychology isn't available to me due to financial issues, I slowly learnt to walk to the toilet, chat for a while, noticing my triggers and management. However life has changed immensely, I feel I have no space in society, I feel judged around drs and fear emergency, around peers, "oh its psychosomatic so your faking it putting it on?" Those words hurt. Along side the physical effects of FND your back yard becomes your outing. 

Some drs are very cruel with lack of understanding the complexities of this disorder. 

My life has become smaller, and is suffocating at times. It feeds into my agoraphobia, anxiety. How is one to feel safe in the world and within society when your body glitches at any time it chooses.

FND has immense impacts on the individual and family, yet we aren't recognised as disabled in the eyes of ndis as apparently its not permanent  however it's classed as permanent after 6 months. I've been rejected from dsp because I'm not disabled enough. 

There needs to be more awareness, more care plans, smooth pathways into rehab, Neurology, and acceptance within the community and even within the disabled community, they dont like the words FND and believe it themselves to be a fake disorder so even within disabled groups we still feel unsafe. 

I felt immense grief that my childhood abuse, young adult abuse has contributed to such a harsh disorder and have worked on that acceptance. I want to bring awareness about it and fight for us, however I feel faceless and uncomfortable talking to others and don't even know how to raise awareness. 

My brain has changed forever and I'm trying my hardest to retrain my brain every day, if someone had warned me being in a state of flight, fight, fawn, freeze all the time  would end up having a neurological disorder I may have tried harder to access help of some kind, yet my financial position has always made it hard, so in reality I was always going to develop it. 

I want to reiterate, ctpsd is just a predisposition to fnd, we would like the conversion narrative changed as it has severe consequences. Some people have strokes then fnd, an illness then fnd, a fall then fnd. But there is a portion of us that have had it due to trauma. 

I'm getting used to living in a more disabled body, I do floor yin yoga, Meditate, go for little walks, self acceptance and love every day, yet it is heavy and soul destroying to grieve who you were while still living. And it's still heavy having symptoms that prevent even family time.

Thank you for reading. Hold onto hope. 

[NatureLover]

OMG, @Elenor ! 😮 I am so sorry to hear about your suffering and the FND 😢

[8ppleTree]

@Elenor 

I hear you! 💜

So sorry you have had to endure medical gaslighting from a system that is meant to heal. That your diagnosis is not understood, so others can't relate. You deserve the empathy and understanding, no matter the name of the condition. 

NDIS is supposed to be related to functional capacity. Sometimes, it's not the diagnosis, it's the symptom, ie fatigue, psychosocial effects due to the illness... but it's not fair. It's a system meant to help those in need, instead it leaves a narrow window in which to frame your experience.

Fluctuating conditions have only lately become a 'thing' in the mind of the public, due to activism for those with invisible and dynamic disabilities. 

I admire your willingness to speak about your experience. You deserve to be heard. FND is not an easy diagnosis, and has been up there with Lyme, me/cfs and the like, in terms of drs and public misunderstanding. I have hope that the dots will eventually be joined for patients. Look at MS, once wildly misunderstood! Now they can look for lesions. Now they understand it's caused by a particular virus. Back in the day, that was also suspected to be 'Hysteria'. 

It must be so lonely. Please know that you're not alone. Many of us are in the community, somehow, standing with you. You didn't deserve your trauma. There was nothing more you could have done. You have done the best you could, with all that you have had. And you are a light 🌸 

[Elenor]

Thank you so much for your response, I'm hopeful that one day FND will be accepted and recognised in society and we have safe spaces and are included in society. 😊 @8ppleTree