Forgotten People 

All the lonely people. Where do they all belong? 

Paul McCartney

Is there anybody there? 

FND is a common condition. Most text books say we comprise the biggest group of people with neurological disorders after migraine, yet there has never been any NGO support for us here. We think, since the Covid FND boom, we are likely to have overtaken migraine sufferers to be the biggest group of people with neurological illness. Neurological illness is the world's leading cause of disability. Therefore we think FND is now the leading cause of disability in Aotearoa.

Epilepsy, Parkinson's disease, Alzheimers, Autism, Migraine, MS, Dystonia, Cerebral Palsy, Muscular Dystrophy, ADHD (we could go on) all have established local NGOs (non-governmental organisations) dedicated to the welfare of their loved ones. None of these organisations have the capacity or desire to help us.  

Please do not mistake this website as an organisation. We have no money and we are struggling with our symptoms. We spent $52 on two years rent for a domain name and some grannies went to voluntary work building a resource. After this we will need a strong cuppa and a good long lie down. 

Shamed into the shadows

It is common for us to encounter medical professionals who have never heard of FND. Though interest is currently growing, awareness can politely be described as minimal. This chapter observes that FND is  "associated with a substantive disease burden. Yet, FND has received far less attention than many other disorders of significantly lower prevalence and lower burdens on society".

Despite being so common, the World Health Organisation does not include FND in its list of the top ten neurological disorders, indeed the website contains no mention of FND. Until very recently the Neurological Foundation of New Zealand, which has a role in community education, did not mention FND on its website. It only happened after some prompting from us. Our nation's flash new neurological hospital recently opened to great fanfare, and again no mention of FND.  

We think our absence from public consciousness is because the following things: 

• when we got sick we were often already socially isolated due to post traumatic stress, which is made worse by the illness

• often we are also suffering the other long term affects of trauma - e.g. grinding poverty, pillaged self esteem, stripped-out social capital  

• due to absence of treatment we remain significantly disabled for a long time and therefore have limited capacity to advocate for ourselves 

• our loved ones and communities have been told for many generations that our symptoms are feigned and that our illness is attention seeking behaviour.  

We have been stigmatised and shamed out of public consciousness and out of public life. 

Disinformation in Action

 One of our members found the following information in their own first aid kit. 

While the text quoted above was published in 1958 on the other side of the world, this disinformstion is still playing out within our own health system today. The following text was submitted by a group member with serious comorbidities. It describes their recent experience of their first ever functional seizure in the back of a St Johns Ambulance.

They went on to explain that they longer call for help. Their experience, while particularly heated, is not unusual. As we saw in the section devoted to our research findings, belittlement, anger and accusations of dishonesty towards our people are systemic and more common than not. 

Given this medical context, it is not surprising that a culture of social service and NGO support had not developed around us. If our medics don't deem us worthy, then why would our wider community? 

What happens when we stay away? 

Most of our members realise before too long to stay away from hospitals and not to ask for help. They then get on with the busines of suffering alone or in small groups. It affects everyone involved. One of our members describes their experience of FND arriving in their lives and the following 12 months of adjustment.

One group member recently asked our wider group if assisted dying was available for FND patients. This disorder regularly brings people to the very brink of their tolerance. Another group member told us they "used to lay in bed begging for god to take me".

Do people die from this? 

We asked the New Zealand Coroner for records of deaths associated with FND over the last 20 years. They returned to us six coroner's reports. Only one of these was a suicide. We suspect there there could be more relevant cases but that problems with nomenclature may have clouded their search. 

As far as the Coroner was aware at the time of our request, the most recent person to die of a FND related episode was 25 year old Andre Bradshaw who died of asphyxia by sand  on the 28th of June 2023 while walking on Kapati beach with his 2 year old daughter. We did not know Andre. Our deepest sympathies and love to his whānau if they are reading this. We don't mean to exploit your loss. We hope to prevent this happening again. 

Andre had presented to emergency medical care the night before his death. 

Some specialists actively seek to dismantle our only community supports

Most people who enter FND treatment are told to stop associating with the FND community. They are told their online peers are detrimental to their well-being, to leave all support groups and to remain without this support into the future. They are told that FND symptoms are effectively contagious, even via cyberspace. This feels to us a bit like the old wandering womb theory. 

We have never heard of this happening within our community. We do not catch symptoms off each other. The vast majority of us had never heard of FND when it struck us full force. It can often take a long time before diagnosis. None of us has reported a TicTok Tic type change in symptoms upon entering the group. One member had been suffering 18 years before her diagnosis and eventual membership in our group. There is no way that Facebook caused what has happened to her and it's not us making her sick now. 

From our perspective, suggestion and subsequent psychogenic manifestation is absolutely not how FND works. FND is more like being blindsided by a bus. Each one of us has a different coloured bus. 

Yes we understand that content posted in the group can be distressing and triggering. People come and go from the group. They come see us when they need support. We do not share videos of our symptoms. We care for each other dutifully as we understand that we are all fragile. For many of us, it's our only support. Our project clearly demonstrates that social media can provide a good vehicle for the distribution and socialisation of scientific information.

Our community has been pushed to the shadows. Our families have been taught to doubt us. People need people, even if its only via cyberspace.

"Talking with people who understand ...has stopped me from having my full FND seizure turn."

Back of Another Envelope .....

Earlier on in this website we estimated that somewhere between 2,100 and 66,000 Kiwis could be being diagnosed with FND each year.  If this population of new FND patients mirrored our research cohort, our annual FND community toll might look a bit like this: 

• between 270 and 8,370 people may be destined for wheelchairs this year 

• between 1,050 and 32, 50 may become reliant on mobility aids such as walkers and crutches this year 

• between 630 and 19,530 people might loose the ability to drive this year 

• between 1050 and 32,550 household incomes may drop by 50% or more this year 

• between 525 and 16,275 household incomes may drop by more than 70% this year.

Let's look at the last bullet point. A 70% drop in household income indicates to us that these households are becoming reliant on government income support. Let's assume that there is only one patient per household. Let's conceptually group those houses together for scale and let's compare them to geographical features we know.  

The lower estimate in the last bullet point indicates that FND could be causing a town the size of Takaka to go on the benefit this year. If we assume the higher number (16,275), it is a bit more tricky to name a comparison town because of the way that data is normally grouped. There are 19,000 occupied dwellings in the Marlborough region, so imagine a region slightly less populous than Marlborough going on the benefit this year. It appears that a substantial slice if our population, and therefore our nation as a whole,  is being economically crippled by this. Every year. Most do not recover.  

Vulnerable people

Our research also suggests that most FND newbies will have such negative experiences in the medical system that they will withdraw from their doctors- permanently. Its well understood that, due to the vulnerable nature of traumatised populations, these people are also likely to experience above average rates of diseases such as heart disease, obesity, cancer and diabetes. Stigma is driving this community away from the protection of preventative medicine and early intervention. 

We understand that the numerical exercise above is not scientific. This is simply a back of the envelope sketch of the community that we have come to know. We have a lot of work to do on understanding the long term outcomes of FND diagnosis and the resulting implications for families, communities and our economy. One paper points out that:

The prognosis of FND is poorer than most clinicians expect. In one study, 40% of patients were unchanged or worse after a mean of 7 years. Only 20% achieved remission.

If our people do not recover, where are they? The numbers above suggest a hidden community of many thousands. There were only 187 members in our support group when this website was launched. 

Other pockets of pain? 

We began on Facebook and that particular waka only roams so far. We suspect there may be significant unmet needs within our prisons, psychiatric hospitals, supported living facilities and  rest homes. We suspect clusters of need in our gang, refugee, military and homeless communities. 

Each of these situations would require targeted skilled support. People working in these areas could benefit from training on how to recognise FND symptoms.

Lengthy sentences 

We are often told that FND is a fleeting thing. " You CAN get better". However, the way that FND is managed in Aotearoa it ends up being a life sentence for many. We acknowledge that people who recover do not hang around in the support groups and we have not counted them. But lets look at the people we that we do know. 

ACC uses the time frame of 2 years to determine whether an injury is considered permanent. Nearly 70% of our survey respondents had been living with their illness for over two years. For the remainder, it was a newer part of their lives. We really hope that these newbies do not become chronic sufferers too. We hope that with the newly built supports of this website, that our new friends will stand better chances of recovery than our community elders have done.

Ten percent of respondents had been living with FND for more than 15 years. A further twenty percent had been unwell between 5 and 10 years. We have recently had a flood of long term sufferers into our group. Some had, on the advice of clinicians, been keeping away from our community. When they arrive their grief and pain is palpable.

Suffering alone, in chronic pain, significantly disabled, 

Family and friends poisoned against them

No treatment, no funding , 

Doctors and nurses laugh at them

Community convinced that they are malingering. 

They get a great big cyber hug. Everybody who joins our group gets a warm personal welcome from several members. This is an important part of our culture. We do not think that people should be living under such conditions in this day and age. Indeed, we can think of no other group of people who are consistently treated with such disdain and ridicule by our public servants. 

Round these parts, its traditional to finish with a song. 

You are not alone

Mavis Staples  2010

You are not alone, I'm with you, I'm lonely too

What's that song? Can it be sung by two?

A broken home, A broken heart

Isolated and afraid, Open up this is a raid

I wanna get it through to you, You're not alone

You're not alone, Every night I stand in your place

Every tear on every face tastes the same

A broken dream, A broken heart

Isolated and afraid, Open up this is a raid

I'm gonna get it through to you, You're not alone

An open hand. An open heart

There's no need to be afraid. Open up this is a raid

I wanna get it through to you, You're not alone