TRIGGER WARNING : This a quite a long post and a tad heavy. It includes themes of mental illness, trauma and abuse.
For as long as I have been writing to you I have never touched on a major part of my life. The reasons are mixed, but lately I feel like the biggest reason is the embarrassment and almost shame I felt for having what can be perceived as quite a bizarre and complex condition. I didn’t ask for it, and in the beginning I didn’t understand it. Doctors and specialists in Canberra couldn’t understand it either, resulting in me and my loved ones living with the condition for the better part of a year without a diagnosis.
But now I’m ready, well not 100% ready but the ‘most ready’ I have ever been to tell you about it. I’m also really motivated by the desire to share in the hope it may help someone out there who is also experiencing the same thing. When I got diagnosed I went straight to Google and couldn’t find too much on the topic. I also didn’t know anyone who had the same condition and to this day have never met someone who has. Perhaps this post will be found by someone suffering and they will feel less alone. That is my greatest hope (amazing Facebook support groups now exist, if only they did a few years back). Finally, I am hoping sharing will be a cathartic experience. I spoke a few weeks ago at the first Invincible She event where I opened up about caring for my terminally ill mother and the grief after her passing. I felt a massive weight lifted off me. I literally felt lighter and was a big step towards healing.
So here goes. This might be long and a bit jumbled, but I’m trying to write this while I’m still in a brave moment. Here’s my story with Conversion Disorder.
I was 23 years old. I had just completed uni which I undertook part-time due to Chronic Fatigue. I’d also started working as a graduate in the Australian Public Service. I was doing reduced hours and was confident I would be able to start working full-time in the not too distant future. Looking back, I think my Chronic Fatigue which started in Year 12 had slowly resolved but morphed into undiagnosed depression and falsely held beliefs about myself and my health. But regardless of all that I was happy to finally be making progress and finally getting a ‘proper job’.
I had just met Nathan, my now Husband, and we had been dating for around two months. Yep, things were looking on the up and it was an exciting time.
Until one night something crazy happened. Lying in bed one side of my body suddenly started to spasm. It wasn’t just a small spasm but rather like a seizure except I was conscious. I had no control over it and no idea what was going on. I was totally freaked out and shit scared. But it eventually stopped and I was able to finally go to sleep. Later that morning I decided to go back to bed for a nap and as I was about to doze off it started again. This time much more violent with such force it hurt. I started throwing my head back, hitting myself in the head with my hand, the spasms were now full body on both sides and so fast. I now know I was suffering from a non-epileptic seizure.
I was rushed to see a neurologist who misdiagnosed me and gave me some drugs to take. I went home with the meds and nothing got better, just A LOT worse. The convulsions were coming on top of each other, I barely had minutes in between them. I was delirious, in agony and beyond exhausted. The next day I was taken back to the neurologist, unable to stand or walk I was placed in a wheelchair. He looked at me and said something along the lines of “this isn’t real, she is faking it, it will stop when she wants it to”. WTF?!?!? How can someone make their body do such things on a whim? Why the fuck would I ‘fake’ such a thing? I should have known this neurologist was a hack – was waay too easy to get an appointment and he jumped to the faking conclusion because he misdiagnosed me the first time. Oh, and he made some misogynist remarks about why there “isn’t enough neurologists because women neurologists go and take too much leave to have babies”. Such.a.wanker.
Not satisfied with this “she is faking it” response I went home. There was no letting up, I had been set up on a mattress on the floor of my family home’s loungeroom with pillows surrounding me to reduce the damage my body was doing to itself. Eventually Mum decided to call the ambulance. I was taken to hospital, but because I had seen that original neurologist a mark was ‘against me’ saying I was faking it. I was admitted into the casualty area to stay the night. Some of the nurses where lovely but others were horrible. The night nurse was unbelievably cruel. I had a cannula in my arm as I needed a drip by this stage to stay hydrated. It had been put in wrong with a bend in the tube that goes into your vein. It was excruciating and I begged for something to be done about it. She said I was a nuisance and should stop wasting their time. I was scared and in soo much pain. Only for the morning nurse to come, take one look at it, pulled it out and said “I can’t believe it was in like that all night, you poor thing”!
I was assessed by the mental health team who determined I totally wasn’t faking it and didn’t need their assistance. The top neurologist at the hospital refused to come and meet me, even when Mum went to his office door with a video of me having a seizure and pleaded with him. He just shut the door on her.
So with nowhere to go and with no answers I was sent back home with no hope, no help and non stop fits. So went the next six months. I would show up at hospital time and time again. They eventually did some more testing with scans and EEG but as nothing showed I was left on my own again. We went to dozens of different doctors, specialists, naturopaths, Chinese Medicine practioners, we tried EVERYTHING and EVERYONE. Nothing helped. Every false hope was quickly dashed as my symptoms remained.
And what had happened to my life in the meantime? It became small, scared and alone. I never went back to work, my desk packed up by someone else and a box given to a friend. My hopes of finally being ‘normal’ after years of poor health were ripped away from me. People who I thought had my back disappeared. Driving was out of the question and my world became of two locations – my home and Nathan’s flat. Thank God for Nath and Mum. They never abandoned me. They took shifts to care for me. As night terrors and hallucinations had me so scared I wouldn’t even open the bedroom door to use the toilet. I remember one night I asked for a bucket to wee in, because of the terrors I was convinced of in the hallway. I heard voices telling me I was nothing and much worse. I had literally became a shell. But Hubby never left me. I once tried to break us off, I said ‘I don’t want you to leave me, so just leave me now’. His response was ‘don’t ever say that again, I want to marry you one day’. I knew then and there we were in for life together forever and ever. Only dating for a few months, then this nightmare, this man had my back and I will always have his.
I also survived thanks to the support of the soul sisters. Loyal girlfriends who never gave up on me. Who would come and visit and sit with me, who didn’t make me feel like a freak and who could handle seeing my shakes and just be present. I’m getting teary just thinking how much these women mean to me. You will never know how much of a lifeline you were and still are.
We finally found ourselves in a specialist office in Westmead Sydney. I can’t exactly remember what words he used to explain what was going on with me. I do remember my mum being super angry with the diagnosis and Nathan being accepting. All that night I had seizures and barely slept. I remember it being super hot and Mum stayed on the computer all night trying to find what was wrong with me. There had to be a physical-based problem causing this debilitation, not a mental one. Nath said to me “we have tried everything, we need to trust this expert and give it a go”. I was beyond exhausted, barely hanging on and agreed. By morning Mum had as well, we went back to the Specialist to find out more about “Conversion Disorder”.
What is Conversion Disorder
It is hard to give a simple answer to what Conversion Disorder is as there a some different schools of thought, but I will attempt my best to explain remembering I’m not a medical professional and this is an evolving space in psychological and physical care.
Conversion Disorder is now contained under the umbrella term Functional Neurological Disorder (FND). This was never known to me at my time of suffering which proves how far understanding has come along in the last ten years or so. Wikipedia actually explains it quite well:
“FND is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts.The brain of a patient with functional neurological symptom disorder is structurally normal, but functions incorrectly. According to consensus from the literature and from physicians and psychologists practicing in the field, “functional symptoms, also called ‘medically unexplained,’ ‘psychogenic,’ or [in outdated terminology] ‘hysterical,’ are symptoms that are clinically recognisable as not being caused by a definable organic disease.”
In my case I experienced seizures, blackouts, speech issues, weakness and sometimes paralysis of a limb. Others have been known to go blind.
The difference between other FND disorders and Conversion Disorder is there is a psychological stressor that sets off the condition. Often, but not always, someone suffering from Conversion Disorder has involuntarily suppressed trauma as a means of survival. This processes is connected to dissociation and Conversion Disorder is considered by many as a Dissociative Disorder.
This was the case with me. My childhood was filled with quite a lot of trauma due to having a father that inflicted psychological, verbal, emotional and physical abuse. It was a typical case of damaged people damage others. I don’t really feel the need to go into details but this is the reality of the situation. Growing up with this trauma caused my brain to suppress and triggered my Conversion Disorder in my early twenties.
Why it triggered then I’m not entirely sure. One theory I have is it could have been meeting Nath, so my unconscious mind felt secure and I was in a ‘safe space’ to let the trauma finally out.
Discovering what was actually happening to me brought relief but also a whole lot more pain, because in order to heal I needed to dig deep, uncover all that buried trauma, examine and work against falsely held beliefs that I was worthless. I had to push and keep on pushing for a better day. This included intense therapy, a hospital stint, medication to get the depression under control and physiotherapy. It took resilience and an unwavering determination to get better, no matter how shit it was having seizures in public such as a Pub in Albury for a friend’s farewell, or in the work toilets when I finally went back part-time. All the while trying to navigate the feelings of shame when people queried what was going on. I felt confused, lost and was dabbling in self harm with suicidal thoughts creeping in.
But I made it through. Mainly to an incredible neuropsychologist I traveled to Sydney to see weekly, fortnightly and then monthly over several years. His expertise and methods truly saved me. I can confidently say I’m generally symptom free these days. Sometimes I will get some tremors or a feeling of ‘blacking out’. When this happens I try to figure out what is going on in my life and what I need to acknowledge and change, so I can process things properly.
If you are still reading this, thank you for listening. Thank you for taking this time because sharing with you is massively healing for me, but I’m still kinda scared to be so vulnerable and open. Hopefully by doing so, someone else will not feel so alone, and know there is always hope for a brighter day.