Falling through the gaps in the system between neurology and psychiatry – The disconnect between Mind and Body
Like many people with functional [also known as conversion or psychogenic] symptoms it has been a difficult road to travel. My symptoms began suddenly. 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. Sometime later the neurologists determined it was not a stroke, but because it was ‘presenting as a stroke they would treat it as a stroke’. It took several years before I found out the correct diagnosis, of FND.
Like people paralysed with a stroke, learning to walk again was challenging. 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 did take 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 baskets, and there was no way to progress forward.
When the health profession seemed to give up on me, I took on the challenge of learning to walk by myself. 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 patterning 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 symptoms would re-emerge. When they 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 wrong 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. The doctors still didn’t seem to know what was going on with me, but I seemed to be able to work out how to manage it and recover my walking on my own.
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. I began to research the disorder. I saw that it was also known as conversion disorder [CD], historically thought to be associated with trauma. The current understanding of FND/CD is that a combination of physical, psychological and social factors may contribute towards a person’s vulnerability to developing FND. I learned that functional disorders often present similarly to neurological diseases such as a stroke, Multiple Sclerosis, Parkinson’s and Epilepsy, and 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 system1 . fMRI studies showed that the brain fails to send and receive messages correctly, impacting on how the body responds to different tasks such as, movement control, and that emotional triggers can impact on the motor pathways in the brain.
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.
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.
There is a huge amount of stigma and discrimination with this illness in health and society. Because the illness has a mental health association, the physical health sector doesn’t want to deal with it, and because of the significant disabling physical symptoms, mental health can’t deal with the problems. 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.
In society I think 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. When symptoms flare up, I need to stay calm and grounded to help regulate the nervous symptom, but if others are panicking and overreacting, it exacerbates the problem.
I regard myself as lucky. 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, and because I had the resources to be able to research and understand the disorder, so I could understand how to help myself. I see others with FND/CD suffering severe physical symptoms, completely unable to engage in life, and desperately trying and failing to get answers from the medical profession.
I am currently working with FNDHope International fndhope.org 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.
Dr. Katherine H. Gill
Reference to Websites for Further Information