There are many links between physical health and mental wellbeing which are not fully understood, leading to gaps in healthcare and a lack of awareness about some diagnoses and treatments. Kate has experienced Functional Neurological Disorder (FND), which is caused by emotional or physical trauma.
Kate’s symptoms of FND, also known as Conversion Disorder, began suddenly at a time when she was highly involved in physical activities.
“At the time, I was very active, regularly going to the gym and enjoying competitive dancing. I remember lying down one afternoon while not feeling well, and when I went to get up, a short time later, I realised I could not move my left side, I could not ‘remember’ how to walk, and I could not even lift my left foot off the ground. It was a frightening and bizarre experience. I was rushed to Emergency and subsequently spent several weeks in a neurology ward. Initially the neurologists diagnosed me with a stroke. It took several years before I found out the correct diagnosis, of FND.”
Like people who have become paralysed as a result of a stroke, learning to walk again was challenging for Kate, she says.
“I can remember watching my baby nephews learning to walk, and they seemed to be doing better than me. I was determined I would walk again. For a while I was in a wheelchair, and eventually on mobility aids. I told the physio I wanted to walk independently and she reminded me that I needed to ‘set a realistic goal’. I was placed in a ward where the average age of people on the unit was 89 years. I was in my 30’s. I didn’t want to be treated like the older people. I wanted to push forward, to take risks, so I could walk normally, and return to my active lifestyle and get back to work.”
It took Kate a long time to be able to walk independently again.
“I left the hospital on crutches, and I struggled to find appropriate support services to help my walking. When it was eventually determined that I hadn’t had a stroke everyone seemed to be at a loss with what to do with me. I had severely disabling symptoms, I was totally unable to walk and stand independently, yet despite extensive testing there appeared to be no cause for the symptoms. I began to wonder if I had some dreadful, perhaps life threatening disease that the medical profession had not yet identified. It was a scary place to be in. After all the testing showed there was no organic disease or illness, I was placed in the too hard basket, and there was no way to progress forward.”
Kate says that when she came to a roadblock with the health system, she took on the challenge of learning to walk by herself.
“I started using the stair railing at home to support my walking, and eventually I put down all the mobility aids and let my two dogs assist me with walking. The dogs helped to carry my weight and pull me forward, helping me to get the walking pattern happening. Slowly I got there, I had many falls, but I got back up and kept going, and about 18 months later I was walking reasonably normally.”
Over time, Kate’s symptoms would re-emerge.
“When my symptoms first re-appeared I was scared at what was happening to my body and I would be rushed back to neurology, and again there would be nothing structurally wrong with my brain and I would have to go through the challenges of learning to walk again. But each time, my walking came back much quicker. I started to see a pattern for when the symptoms would flare up. Knowing I could teach myself to walk again, I decided not to go back to the hospital or doctors when the symptoms came on; it was quicker, easier and less frustrating for me to manage on my own.
When Kate finally uncovered her diagnosis, her pattern of symptoms began to make more sense.
“Many years later, I was collecting a copy of my medical records from my GP, and found that on one occasion the hospital had noted the cause of my symptoms as ‘functional neurological disorder’, although it had not been discussed with me at the time. My GP did not know what this was, and couldn’t tell me anything about it. “
Kate began to research the disorder. She found that the current understanding of the disorder is that a combination of physical, psychological and social factors may contribute towards a person’s vulnerability to developing FND. Functional disorders often present similarly to neurological diseases such as a stroke, Multiple Sclerosis, Parkinson’s and Epilepsy. They can be just as debilitating and distressing, yet they are not caused by structural disease of the nervous system, but a problem with the ‘functioning’ of the nervous system.
“I started to trace the pattern of symptoms, when they occurred and how I seemed to manage to keep the symptoms at bay. It all began to fit into place. At the time no one had explained the diagnosis to me, what it was, what it meant, and how to manage it. Once I knew what I was dealing with, I was able to get a good grasp on how to manage the symptoms, to prevent reoccurrence.”
“I found dealing with the health system frustrating. After I got a good understanding of the diagnosis, I found none of the doctors or other health practitioners seemed to have an understanding of the illness. I was educating all the practitioners I was seeing. Following BAHA cochlear implant surgery, I had a relapse of my condition and this time I was worried I would be back in a wheelchair for life. But, a few months later I was back on my feet, walking dogs, doing aerobics and ready to get back into life.”
Kate says that there is an urgent need to increase awareness of the disorder across health and across community.
“Had I known what I was dealing with earlier on, I think my journey to recovery would have been easier. I was able to learn about the illness, and work out ways to self-manage the illness, as I could research and understand academic papers. Other people may not have access to those resources.”
As both physical and mental health symptoms are often intricately linked in cases of FND, there is a lack of clarity about how both sectors collaborate to treat patients with the disorder.
"There needs to be a multi-disciplinary approach that addresses both the physical and mental health aspects of the illness. At the moment people are falling in the black hole between neurology and psychiatry.”
Kate thinks that the stigma and discrimination she has experienced due to her FND is because people are scared of what they don’t understand.
“When people experience significant physical flare-ups of the illness, whether it is paralysis, seizures or movement disorders, it can look frightening and serious to others. Observers don’t understand what is happening and become worried and perhaps over-react or misinterpret what is going on. When this happens, those who suffer from the illness then get excluded from society, they lose employment and other opportunities to engage and participate in the community.”
On the whole, Kate regards herself as lucky with how she has been able to identify and treat her FND.
“While it has been hard work, I know I could have spent the rest of my life in a wheelchair. It is only through hard work, determination and fight that I am able to walk. Because I have the resources I am able to research and understand the disorder. I see others with FND suffering severe physical symptoms, completely unable to engage in life, and desperately trying and failing to get answers from the medical profession.
Kate has become an advocate for FND awareness, and is currently working with FNDHope International to set up an Australian arm.
“I hope in the future to be able to offer peer support, information and advocacy to help others with this condition. I am looking to do a consumer-led research project on this disorder, to help the system understand the urgent need to address the problem, and also to capture stories of recovery, resilience and hope. Currently there are no treatment programs for the disorder in NSW, no organisations or support groups addressing this problem and little research happening in Australia. Hopefully FNDHope Australia can help to increase understanding and awareness of the illness, improve pathways to care, and outcomes for consumers to participate fully in life.”