Main Findings

Please do not read this page if you are newly diagnosed or are feeling vulnerable  

This part of the website describes the results of our recent research in to the needs and experiences of the FND community in Aotearoa. These stories are upsetting. If you are new at this, you have enough to deal with right now. Please focus on your recovery for the mean time and maybe come back here later when you are feeling a bit better. Seriously, my friend. You cannot un-see these things. Turn around. 

 















Dedication 

For Kelly.  Love you. Thank you XXX




Research goals 

Our research employed a grounded action research methodology. Grounded means that we started collecting information and let the results emerge rather than testing a preformed theory. Action research is done for political reasons to drive social change. 

There was a hypothesis of sorts. We saw that there was a problem with the medical system around us. Our goal was to collect as much information as possible to try and inform a system change. We did not have much more of an idea where we were going than that. We thought we might write a report and send it to the papers. We thought the report would probably say that 'we need more doctors'. 


Research methods

We did not go through an ethics committee approval process. We do not need the approval of a University to gather our own stories and tell them to the world. Major decisions, such as inviting a medical school academic into our group, were made as a group. 

We started a fresh Kiwi (New Zealander) only Facebook Group and gradually collected members and built trust as a group. About 6 months in, we launched a mixed method survey via Google Forms. We promoted the survey with refugee services, sexual violence services, and the Returned Servicemen's Association. The survey was closed off in late January 2024. We had 49 respondents. During the analysis period, if the researcher needed to clarify unexpected findings they had the luxury of going back to the group and asking. 

Our group grew bigger. A call was put out to see if any new members had stories to tell. These were included. The lead researcher, also an FND sufferer, snuck in 3 quotes from their own experience. Some of the information discussed in the section called Trigger Warning were drawn from private conversations between members of our support group. 

The survey's quantitative results were pumped out by Google Forms. Incidence rates and population projections were peer reviewed by a retired population health academic. The qualitative results were analysed using QDA Data Miner. This involved the researcher reading a sample of responses, drawing up a coding framework of key concepts (such as stigma and whānau relationships) , and sorting respondents words into the different codes. The qualitative findings were peer reviewed by the members of our support group who felt strong enough to read the report. We sought feedback from a small group of professionals and incorporated their feedback before launch. 



Main Findings 




I just want to know whats happening to me, help, I get suicidal sometimes and I'm scared.




We have already taken what action we can to address our first research finding: 

In addition, we found also that:


These findings are nothing new. Any study of FND will usually start with a list of these long understood facts. Therefore we wont spend time elaborating on most of these claims. We are going to focus on the final two findings, the problems we found with stigma and trauma. 


So whats new? 

Stigma and misinformation in the medical system is far more entrenched and far more damaging than we expected. We found that this leads to long-term significant harm to patients and their whānau. We argue that this has wider serious public health implications. 

Our cohort reported much higher levels of trauma than we anticipated, both in terms of the number of hands raised, and in the severity of experiences reported. Levels reported by our group were significantly higher the other studies we looked at. We think our peer to peer method and period of trust building led to people opening more than they might otherwise. 

These 2 findings lead us to a conclusion that FND presents our nation with a significant public health crisis given:

The evidence we uncovered also tells us we have a significant human rights crisis too. What is happening is inhumane. 

Proposed action:


Stigma 

(I was) laughed at. A lot of jokes made of my movements.....Literal eye rolling from health professionals -sniggering

A&E dismissed me and told me I was faking my seizures. 

The first physio told me ...I'm making my FND condition by being a drama queen.


The stigma against people with FND is a global phenomenon. It is widespread and longstanding. It not unusual for different groups of people to feel stigmatised and discriminated against. However this is no school yard bullying. The perpetrators of our problem are Doctors and Nurses, and Therapists; employees of our State. The sections on Mind + Body and Trigger Warning offer some explanations about how this culture has come about. 

Among our survey respondents, almost 75% said that they had been treated badly in the Aotearoa medical system due to this stigma. Another 12% said they were not quite sure. We think its quite likely that these unsure people had experienced stigma, but that they had just could not believe what they were hearing. Less than 15% reported being consistently treated well. 

We aren't just talking about grumpy burnt out Doctors. The stigma is targeted specifically towards FND patients. Most often our people are accused of feigning, lying, malingering, drug seeking and attention seeking. Other times our people are yelled at, laughed at and belittled. 

FND symptoms are often equated with tantrums by medics. To illustrate, here is one of the the most disturbing incidents that we became aware of during our research. This is an account of an incident in an Accident & Emergency in 2023.  


They kept [my wife] waiting out in the reception area, the main nurse manager telling them that she wasn't allowed in. She told me that I could see her once I stopped throwing tantrums. And then left me in the room closing it behind me. They had put a mattress down on the floor and covered it in plastic for me, but had locked me in. During one of my fits I had fallen and knocked out the IV and had powerchucked bile everywhere and I was fitting in it. My wife had fought her way in, stating that I had a human right to a support person and came in to me laying unconscious in a puddle of bile and blood and they had led her in, saw me and walked right back out. She filmed me, ...and herself crying, talking about how she didn't understand why this was happening. She posted it on TikTok and when we came in next we were confronted by nurses saying that we couldn't keep our phones and that we had to take down the video or they would ask me to leave, denying me care. So we took it down and they took our phones before they would treat us.


We have this video and photographic evidence of this incident but we are not going to show it here. You can trust that these words are an accurate account of events. While this story is harrowing, most of us have experienced this to some degree. 

When asked if stigma had impacted on them, only 56% or our cohort said yes. Another 23% said maybe. We then asked specifically if they had been "dismissed/disrespected/growled at/not believed" responses were much higher when asked in this way. Only 15% of or respondents said no. 

The most commonly reported sources of stigma were Accident and Emergency staff (54%), Nurses (46%), friends and family (44%), GPs (43%) PT/OTs (41%), Neurologists (33%), wider community (33%) and ACC (31%). Most respondents ticked multiple boxes. 


The FND Stigma Spectrum 

We map FND stigma over a 5 stage spectrum: 

Miscommunication: Lazily communicating valid medical information - example "Think happy thoughts"

Misinformation: Employing outdated and incorrect medical information- example "It's a behavioural problem not a medical one"

Belittlement: Invalidation and dehumanisation - example "Being told that...I should shut up, I'm not qualified to say anything". "Stop throwing tantrums" when one is having seizures.

Disdain: Open expression of stigma directed towards the patient - example "The specialists called me a liar", "He told me I will never have a loving family if I don't stop acting like this".

Stigma driven neglect: When stigma results in medical danger to the patient - example "GP said my problem was stress related and it turned out to be cancer".  


A widespread culture of harm 

Most of us will understand that the expressions of FND stigma described above are not OK. Our research participants also explained what long term impacts this was having on them and their whānau. We have found that the stigma results in what we call the four horses of the FND apocalypse:


Harm to a patient's sense of self 

I have been made to feel judged, not listened to & to question myself.

It's like you don't exist. ....what makes me so worthless that nobody will help me?

I feel nothing but gaslighting and not believed within the medical system, and now it is starting to impact my mental health. My panic attacks have returned. 


Gas-lighting is the act of manipulating another person into doubting their own perceptions, experiences or understanding of events. It's the perfect term to describe one of two effects this stigma has on individual patients.

It's well understood that rates of mental wellbeing tend to be low in FND patients prior to onset of neurological symptoms. When you shine this lazer beam of gas light on this vulnerability, it can and does result in painful existential crises for our people. If we cannot believe our own bodies, what can we believe? Even if a person has no mental health vulnerabilities, this gas light is certainly not a good light to be shining on your new disability. 

FND stigma often also results in a loss in self esteem. Being treated like this makes you feel worthless. Many of us, due to traumatic histories, had precious little self esteem to begin with. 

One respondent reported being sexually assaulted by a health care worker while paralysed in their hospital bed unable to talk or move. When they regained their ability to speak they laid a complaint to the hospital but nothing was done and the complaint was dropped. This person had been a highly respected career School Principal and Senior Government Adviser. They explained that they felt FND stigma caused the hospital to disregard their complaint, "its just another way the medical system has shown me they don't believe in what I am saying or what I have been through.". This person asked me to specify their profession. They wanted people to see this can happen to anybody. 


Harm to our doctor/patient relationships

I don't think I will ever willingly go back to hospital after waking up from a nap & the nurse telling me to stop being so stupid.  
I wasn't, I couldn't move, speak or communicate.
I get gaslit and treated like a I am a malingerer. I am now scared to go to get help.


It is apparent to our community that Doctors don't like treating us and would prefer that we didn't darken their doors. At the hospital it is communicated pretty clearly. "You are not welcome here. Do not come back". This is often communicated with raised voices. It's a hard message to mistake. With our General Practitioners it's a bit more complicated. They are obliged to treat us to a certain extent. They can also resit this obligation through many small acts of deflection that make the patient feel unheard and invisible. 

One member of our group talked about deferring investigation for bleeding bowels for years because she feared her doctor's dismissal. Another member had not checked her thyroid levels for many years, despite loosing her thyroid through surgery, because she fears the scorn of impatient phlebotomists who do not understand movement disorders. People with movement disorders really struggle with mammograms and pap spears and require sensitive sympathetic treatment. Dentistry becomes very difficult too. This starts to affect all parts of health care. 

We also found that family members were occasionally withdrawing from their Doctors. The hurt and betrayal had spilled over on to them and they were also choosing not seeking help with their problems either. We suspect that this problem could be hurting children living in these households. If FND affected parents are scared of Doctors this is likely to be impacting the healthcare of their children. 


Harm to our whānau relationships

Doctor told my mum it was behavioural, go home. 

It has cost me a lot I lost my husband. We had been together 41 years. He was not tolerant when I was loosing my cognitive ability, neither were several of our children. 

Partner gets impatient with my low energy and inability to contribute equally in a physical way to home and garden maintenance and upkeep.


We think it is unnatural to assume that your loved ones pain is feigned attention seeking. We think most of us love and care for our family members with openhearted empathy. This is the default. 

However, these family ties are damaged when Doctors tell family members that FND patients are feigning their symptoms. This misinformation creates mayhem within households when they leave the hospital/surgery. 43% of our research respondents reported experiencing stigma in the home. Whānau learn this behaviour from our medics. 

Despite what some parents seem to be told, FND symptoms cannot be corrected through discipline. Indeed, this approach would make things much worse. Such attempts are deeply damaging to entire families. We would liken the damage of this practice to that of freshly banned conversion therapy. 

Many of our people lost their partners. Who knows if these marriages would have lasted if they had experienced better medical care. We do know that equating FND symptoms with tantrums has a devastating impact on relationships. This is especially so when FND removes a wage from the household.  

The children in these homes have triple-whammy of trauma. Mum really sick, dad gone, and everybody living in freshly minted poverty. The kids 'learn' that their mum is faking and that's why she won't take them to sports on Saturday. 

And yes, the misinformation seeps out to the extended family and friends too, further isolating our people. 


Harms to our community relationships

People laughing or making comments about my movements. A person said I had a demon in me.

Employers don't say your faking but you can see their attitude that that's what they think.

He looked at me in a very concerned way and told me his parents were doctors. We ended our meeting, shook hands, he left and I never heard from him again. 


Stigma generated in the medical system has leaked out into popular culture and causes us problems as we recover and try to resume our normal lives. Many of our people report their previously supportive community retreating from them when they got sick. One member was asked not to attend her local somatic yoga class as the teacher was concerned that her movements would upset the other class members. It is in society's best interest that our people are socially and economically active. The stigma that we encounter makes our very real physical handicaps much more isolating and financially damaging. Financial harm to our households becomes, in turn, financial harm to our nation. 


Stigma increases isolation 


I don't have a social life now. My son and I just sit at home and do nothing each weekend, each holidays. There's no living a life now. 

It just feels safer and more manageable staying home, although at times I'm even starting to feel anxious at home as I live alone. 

The people in my circle are very few, count on one hand. I expect it will remain this way unless I get better



The four horses of the FND apocalypse leave us feeling socially isolated long term. We try to manage our challenging and disabling symptoms as best we can. When the stigma is overlaid on this, concerning levels of social isolation occurs for entire households, not just the patients. Our people shrink their worlds to meet their physical capacities. Many reported not going outside. It was common for our people to report their social circle dropping off one by one until only a skeleton crew remained. 


Stigma blinds doctors to other illness


I sat for 14 hours in ED last year having a severe allergic reaction and was ignored as somatic - I have a history of
anaphylaxis and been in ICU for it. They didn't even check on me

They don't say it but it's like they won't examine a symptom properly because they have made up their mind.


This problem impacts most of our members in some way. Many members felt that it was not worth talking to their doctors about their health as they felt the stigma they were facing made them unlikely to be heard. Several people told us that seeking medical care a waste of money and that they did not do it any more. Therefore we suspect that there may be a lot of undiagnosed illness out there. 

We spoke to several people during this study who were misdiagnosed with FND and spent years having their problems put down to malingering. When they finally got their true diagnosis, such as MS or Ehlers-Danlos Syndrome, there were mixed emotions. 

We do know that the problem of somatic/functional/psychogenic illness is creating problems in health care. The boundaries and mechanisms of functional illness are blurred and poorly understood. We do know that serious treatable diseases are not being found because doctors sometimes assume the wrong cause. One concerned mum was reported to Oranga Tamariki by her Hospital Board for alledged 'medical abuse' when she challenged her daughters diagnosis and found her life saving surgery overseas. We assume that this case is related to our subject as the daughter had been accused of attention seeking behaviour. 

"As a mother, I know my daughter so incredibly well, and when they're trying to tell me that she's too anxious, or she's doing this for attention, or she's having teenage girl problems... they don't know her like I do and that's not who she is."

There has been more than one death lately. To us there appears to be a connections between FND and Ehlers-Danlos Syndrome, a seemingly common comorbidity among recent members. This matter is a particular concern to a noteworthy number of our members. 

One person in our study had their cancer dismissed as a psychogenic symptom and ended up requiring extensive surgery. 


Stigma invalidates our need for support and treatment


I heard the nurses talking behind the curtain that I was faking my symptoms. Once I had care arranged to support at home I discharged myself.

My doctor received a letter from St Johns asking "permission" to not support me any longer. My GP said "absolutely not" and was furious at them.

What is it now? 3 years, maybe 4 and no Neurologist has seen me. No specialist will accept any of my Drs referrals.



Relevant specialists are few and far between. As they have so few tools to assist FND patients, most choose not to see FND patients. They appear to prefer to spend their time with patients with more attractive problems. This, combined with ACC's tendency to keep the nations specialists tied up in report writing activities, means that many of our people never get the chance to talk to a specialist about their recovery. While some get an appointment,  only a small percentage get to talk to a specialist who understands FND and can communicate well. As far as we understand, our people cannot be referred on for further help, such as speech therapy and physiotherapy, until they have seen a Neurologist. If they are unable to access a neurologist for diagnosis they are unable to access any help at all, leaving them without the care and information that they have a right to under the laws of our nation. Currently our system does not acknowledge our ongoing need for support. 


We believe that this had been allowed to continue because of the widely present and widely accepted stigma in the medical system. It's much easier for Doctors to assume that we are ok, that our physical problems are not real, and that we do not deserve help. 

     The following page presents some of our quantitative findings.