Trigger Warning 

Into each life some rain must fall

But too much is falling in mine

The Ink Spots 1944

Never rains it pours  

The numbers show us that there is a clear link between trauma and FND, particularly when trauma happens in early life. The scientists don't yet understand how and why this happens, but we do know there is a link. 

Because of this correlation, some doctors believe that FND is a psychiatric disorder which results from suppressed memories of sexual abuse. It is believed that if the patient uncovers the trauma using psychological therapies, they will get better. This became the dominant approach to FND long before it was called FND.

It can be devastating to be told that something terrible that happened long ago can return to result in such violent disruptions to your life today. It wasn't fair then and it certainly isn't fair now. 

The backlash against Conversion Disorder

Sigmund Freud was one of the first people in modern medicine to write about FND. He called it Conversion Disorder. Many doctors still use this term. Conversion Disorder is still listed and described in the Diagnostic Statistical Manual of Mental Disorders (DSM-5), the main text book for mental illness. 

Freud wrote that in patients with Conversion Disorder the subconscious would break through into conscious life. He wrote that subconscious thoughts would be converted into movement and episodes of what he labelled 'hysteria'. These ideas became globally popular, and despite not being taught in medical schools, most of our doctors today have been influenced by these ideas in some way. 

There has been an extensive backlash against this approach, arguing that these ideas were misogynistic, overly simplistic and has led to significant stigma. We are glad this backlash happened. We may well have spent our lives in psychiatric institutions if we had born 100 years earlier. 

In recent years, FND patients that have not experienced trauma have pushed back against the label of Conversion Disorder. Many now argue that the conversion theory is outdated and irrelevant. Most specialists now agree that trauma predisposes you to FND, but that it is not a prerequisite to getting the disorder. 

Conflicting evidence 

In researching this project we observed that articles such as this one argue that: 

The physical symptoms of patients with FND were previously believed to result from psychological distress, but recent studies show that only about one-third of these patients have a history of trauma.

We find this hard to believe. If this was true it would mean rates of trauma among women with FND are lower than in the general populace. Our own government data shows that approximately one third (35%) of adult women in Aotearoa has suffered sexual trauma. Sexual trauma is a subset of trauma, and it doesn't include all of the other things like car crashes, murder and family violence. If the above quote were true, then this would seem to indicate that trauma actually protected women from FND, rather than the other way around. 

Furthermore, the article quoted above referenced this article in support of this claim about FND. When we examined this paper we see that this research refers to all 'medically unexplained symptoms' not specifically FND. We believe that FND could be different from other 'unexplained' illness. 

We believe that, in efforts to convince doctors of the genuine nature of their physical symptoms and to avoid the all pervasive stigma in the medical system, patients may have been under reporting trauma: e.g. "There's nothing wrong with my head. It's my legs that aren't working".

Our own cohort showed higher quantitative higher levels of trauma than the wider public. Our qualitative observations also suggest that the nature of the trauma experienced by our people is particularly acute. We think our findings may have been different than other recent studies because it was conduced among peers in a  trauma sensitive way after an extensive period of building trust as a group.  

Childhood sexual abuse and FND 

Let look at the problem the other way round. What happens when you hurt people badly? 

A group of scientists conduct a meta analysis of the medical literature on childhood sexual abuse. They looked at all the relevant studies all over the world to work out what was common between them. They did some fancy maths to prove the causal connections between things. 

They looked at 559 relevant scientific studies with a total number of over four million research participants. They found that the: 

strongest psychiatric associations with childhood sexual abuse were reported for conversion disorder (OR 3·3 [95% CI 2·2–4·8]), borderline personality disorder (2·9 [2·5–3·3]), anxiety (2·7 [2·5–2·8]), and depression (2·7 [2·4–3·0]). 

So while not all FND patients have experienced childhood sexual assault, FND is the most likely long term psychiatric outcome of childhood sexual abuse. 

Comorbidity

Among our research participants, Post Traumatic Stress Disorder (PTSD) was our most commonly reported comorbidity, followed by PTSD's 'unhappy bed partners' anxiety and depression. We asked our research participants about their other health problems, coded these responses, eliminated the conditions that had only one response, and put the information into a word cloud generator. We ended up with the info-graphic below. The size of the words indicates frequency of response. 

Our people 

Among our research participants, nearly 50% reported sexual trauma in their past. Another 30% reported other forms of trauma. We didn't ask for details: just a simple yes/no/maybe. The respondents who answered NO to the trauma question represented only 16% of our cohort.  It is clear to us that trauma is important to this problem somehow.

We don't talk about our personal trauma openly in our group. Our conversations stick to helping newbies find their feet, and how to manage the disorder and get through the day. Public discussion of trauma is not banned. Our members just seem to understand the need to be careful. But sometimes stories are shared privately. Our people talk about long term intra-familial sexual abuse, violent gang rape, still birth, car crashes, intimate partner violence, suicide and war. The very worst of the worst stuff. For many the trauma was long term. At least among the adult sufferers, its quite rare to find one of us that does not have a really bloody horrible story to tell. 

Most of our people needed lots of tender loving care even before they got sick with FND. Many were at a particularly low point in their lives when symptoms struck.

What's on the menu? 

Start with a base of pureed complex trauma and bring to a rapid boil with a crisis fueled blowtorch. Toss in your flash roasted spicy neuro-symptoms. Season with freshly ground medical abuse and rejection, sprinkled from a height. 

Let simmer. 

Well before you are ready, add a generous dollop of stigma induced social isolation and one full cup of financial ruin. 

Traditionally served ice cold in a large heirloom cast iron roasting pan. 

No spoon. 

ACC 

Many types of trauma are covered by ACC, including sexual trauma. If ACC was to review its internal policy on FND and approve claims more readily, we estimate that 60-70% of the burden of this disorder could be taken off the public health system. This could be achieved quickly and within existing legislation. ACC are currently approving very few claims. Most are declined and absorb significant money in protracted assessments that offer no therapeutic assistance to the patient. Indeed, these protracted assessments are triggering, invasive and disruptive.  

We have not yet worked out the pattern of which claims are declined and which are approved. We know that ACC have approved claims for FND for both mental and physical injuries. We have not yet heard of an approval taking less than two years.  

ACC are happy to approve claims for PTSD and depression as a result of sexual assault. As the meta study quoted above shows, both conditions have less scientific evidence to connect them to sexual assault than FND does. While 30% of respondents had approved ACC sensitive claims, less than 5% had approved ACC cover for their FND.

Patients are barred from public health services while their ACC claims are being assessed. They are not warned of this when they submit their claims. This practice is contrary to the written policies of all of the agencies involved. This practice is also contrary to the bill of patient rights embedded in the Health and Disability Commissioner (HDC) Act. However, the HDC does not have the power to force any agency to act. This results in concerning rights violations for many of our people. 

We argue that all FND patients should have the right to access waiting lists for public services while their ACC claims are being processed. Patients cannot access therapists until they have had a neurological assessment. While wait times for public services currently undesirable, these wait times  are certainly a fraction of the time that people spend waiting on ACC to process clams. 

Members of our group have had their ACC entitlements for other claims, for things such as sexual assault and concussion, cut off when they received their FND diagnosis. We have heard that some GPs advise their patients not to seek help for FND because it could disrupt their other entitlements. We have heard that this goes further than just discouraging ACC claims, and that goes as far as GPs choosing not to record functional neurological symptoms in patient notes. 

If some of the $47 billion now being held by ACC on behalf of our nation could be released to treat FND, a major burden could be taken off the public system and hundreds could be treated and return to their normal economically productive lives. We believe such action is in the spirit of the ACC act and that most citizens would support this move.

Time is of the essence

FND can be more easily treated if diagnosis is made promptly and treatment is sensitive, informed and quick. Harm is done in delay. English Neuro Psychiatrist Dr Chris Symeon explains in this video that:

“The fact that people have to wait a year for a diagnosis, then two years for treatment, means that often by the time they come to specialist centres like mine, we’ve seen sometimes irreversible changes to the muscles and joints.” 

Many of our research participants have been waiting much longer than three years for access to diagnosis, let alone treatment. Indeed our own group member who wrote in their letters published on the next page on this website, 'One Story', describes their FND as being like a seeding, a sapling, a small tree and later a mighty Kauri, growing over time as paper-pushers and medics tossed him about like a hot potato. 

He was recently able to 'stand' for the first time in 5 years with the physical support of 6 physiotherapists and a walking frame, but only for a few seconds. His initial injury was a bang to the head. 

We believe this should not have happened and that this man should be back with his family, playing tickles with his children and working for an honest wage. Instead, he's in full time care in a rest home, separated from those he loves. He tell us that, 

"Basically ACC dropped the ball on this one, then continued to work against us, as I started to unravel. They continued to be more focused on getting us off the books rather than actually treating what was by then, obviously going wrong."

When we checked back with him to see if he was happy with the way this section was written, he replied back with this. 

"FND has slowly unpeeled me layer by layer as you would an onion. Then as each layer gets removed, without correct treatment to halt the process, it gets closer and closer to the centre of the issue till there’s nothing left to give. You have been dragged from normal human functionality, you have become another ACC created FND ghost."

You can read his full story in the next page. 

Our hope for science

All those working with our people should be trauma sensitive. This should be the default approach. If physicians want to work FND patients in a productive way, they need to learn how to do this without causing further harm to their patients. There are some clues on the section on
Tips for Medics. If the contents of this website are not enough, we welcome you to come talk with us. Maybe speak to a clinical psychologist. 

We believe it unlikely that our medical workforce routinely abuse sexual assault victims that are fresh from their assaults. There are strict victim-centric protocols in place in these situations. We expect that professionals understand the need for compassion and sensitivity if the trauma is fresh. We would ask our medics to employ the same sensitivity when FND strikes later in life. 

Conversely, if a patient tells their physician that they have not had trauma in their lives, they should be believed. The approach to recovery remains the the same. 

We hope that science does not forget trauma as a relevant factor when researching FND. We suspect this issue could provide clues to the physical mechanisms at play. We fear that the backlash against Conversion Disorder may have taken us a little off course. We think that it would be a mistake to leave this clue behind, simply because it not not appear relevant to what we believe is a minority of patients.