Conversion disorder: The mysterious condition dogged by doubt and stigma

Lidia

Lidia

Senior Member (Voting Rights)
Concerned that ignorant and arrogant GPs will now feel they can diagnose "conversion disorders" in vulnerable people without having done any tests and without referring to a specialist:

Conversion disorder: The mysterious condition dogged by doubt and stigma
It's been described as the one of the greatest medical mysteries of all time. All of a sudden, a patient is struck down by blindness. Others are paralysed. Some endure violent fits.

But when doctors do all the usual tests, they struggle to find anything physically wrong with them. There is nothing wrong with their eyes. They don't have epilepsy. When they sleep, their paralysis disappears.
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Welcome to the forum @Lidia

That is a truly horrendous article. It's terrible to think of all the people wrongly labelled with conversion disorder.

My son was given this label by a psychologist - the trauma was supposedly a fear of school. This was despite the facts that 1. my son became sick at the same time as my daughter and I, with the same symptoms, and 2. that right up until the week he became ill my son was a happy and successful student, and 3. since he became ill, he has always been very keen to get back to school, to the point of pushing himself too hard to do so.

What's worse, this psychologist never told me or my son of her conclusion. I only found out a couple of years later when we left Melbourne and I asked my GP for a copy of all of our medical records. Our GP never told us of the diagnosis either.
 
Conversion disorder is one of the last vestiges of Freudian psychiatry. We have moved past most of the rest, aside from some holdouts.

There is no credible evidence that conversion disorder even exists. Please see my signature.

Conversion disorder is most probably a fictitious illness, yet another too hard basket. Its not the patient telling the untruth, its the medical professionals and DSM.

Doctors need to be happy to go with "I do not know". Now there is some justification for psychological support to assist people with coping, but that is as far as it goes. Idiopathic disorders are still very common. So are undiagnosed genetic disorders, rare pathogens, nutrient deficiencies etc. It is also the case that we have yet to discover all the genetic disorders. The science has a long way to go.

Conversion disorder has no evidentiary nor scientific basis.

Its abhorrent that this diagnosis is still being used.

For me psychiatry can be broken down into three things ... bodily disorders, brain disorders, and informational disorders. That is my current interpretation. Nowhere is there a need to mention mind, which is another fictitious entity, presumed because there is a long history going back to ancient Greece and probably before. If you write about brain and brain disorders then many of the fallacies found when talking about mind are more easily avoided.

Conversion disorder is simply presumed. There are no tests. At least ME has lots of known pathophysiology. Conversion disorder does not, as far as I am aware.

It is often cited that psychogenic disorders are only rediagnosed about 4% of the time. This is another severe distortion of the research, and can be ignored. Please ask if you want to know more about this.
 
Welcome, @Lidia!

The whole conversion disorder business is so nasty and unpleasant. The article was sickening. The way doctors who promote these concepts use weasel words to avoid saying what they really think.

These choice lines from Dr. Alex Lehn.
He sees about 100 people patients each year and believes it is generally multiple factors (biological, physical, psychological and social) that "push people over the line".
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Translation: we think it is psychological and a bit social (you're doing it to avoid things or gain attention, that's the social bit), but we certainly don't think its 'biological'. We just add that in and say its complex, so that no-one will know what we really think.
He said while childhood abuse is often linked to the disorder, it was not as common as people might think, and that "you don't need secondary gain to get functional disorder".

"In 30 per cent of patients – and you can dig as hard as you like – you won't have previous trauma."
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Translation: the data are not really confirming our firmly held view that this disorder is psychological, but we're not going to give it up so easily.
Dr Lehn said while not everyone had a functional neurological disorder, everyone has probably experienced symptoms of it during their life – like a child who during a school play freezes a soon as they get onto the stage, and can't get a word out.
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Translation: Everyone is a bit fucked up at times, you see. Its just that these people, well they're super fucked up. Really bonkers.
"Functional symptoms are super, super common – and they live in all of us," he said.
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Yea, I find I go temporarily blind often, don't you? Oh and paralysed too, happens to me all the time! And then there's those little seizures I have when I'm really upset, oh we all know those!

How belittling to these patients who are experiencing severe and incapacitating symptoms - to say they're just everyday sensations that they're misreading as illness.

Richard Kanaan is one of the darkest players in this murky field. Get a load of this:
Professor Kanaan said research he's been involved in found many patients fall sick when the sickness can provide escape from stress – what's described as a "secondary benefit".
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This means they're doing it to get attention or to get out of doing stuff. A nasty accusation to make of any sick person. There is a fascinating case study by Solvason, that documents how these accusations were levelled against one particular woman... who died shortly after of a neurological degenerative disease called Creuzfeldt-Jakob disease. There's a summary of this study in the Science library and a link to the article: https://www.s4me.info/index.php?threads/critiques-of-psychosocial-illness-explanations.213/
 
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I find the notion of ‘secondary benefit’ to be particularly unpleasant. It shows a remarkable lack of insight on the behalf of the researchers/doctors I think. I’d love these people to experience symptoms for a week or two and then argue their position again.

Sure, there are probably a number of people who are disinclined to want to go to work and who think that they can work the system, but to diagnose people who are suffering with debilitating and frightening symptoms with conversion disorder, and suggest that their brains are creating the symptoms because they must need to escape from something unpleasant or that they get benefit from the symptoms is cruel beyond belief.

It works to keep the people suffering away from the doctors though.
 
Hutan said:
My son was given this label by a psychologist - the trauma was supposedly a fear of school. This was despite the facts that 1. my son became sick at the same time as my daughter and I, with the same symptoms, and 2. that right up until the week he became ill my son was a happy and successful student, and 3. since he became ill, he has always been very keen to get back to school, to the point of pushing himself too hard to do so.

What's worse, this psychologist never told me or my son of her conclusion. I only found out a couple of years later when we left Melbourne and I asked my GP for a copy of all of our medical records. Our GP never told us of the diagnosis either.
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Similar to our journey Hutan. My eldest daughter started having strange episodes around age 14 that then went on to become seizures around age 15. Our GP at first ruled out a few things and then turned to psychological explanations. He asked her if she was happy at school, if she had friends, etc.

Thankfully one of the specialists he referred her to told us that our GP had written that it was probably a psychological issue, but he said that he'd rather investigate her properly. When we got our medical records to transfer to another doctor we discovered that he had written in all the referrals he made for her that she and I claimed that she was having seizures, but that there was probably a large psychogenic component. This had been our GP for 10 years, who I'd stayed with just for the general medical stuff in spite of his ignorance around ME/CFS. I didn't realise until we got those notes how warped his view of us was.
 
sea said:
Similar to our journey Hutan. My eldest daughter started having strange episodes around age 14 that then went on to become seizures around age 15. Our GP at first ruled out a few things and then turned to psychological explanations. He asked her if she was happy at school, if she had friends, etc.

Thankfully one of the specialists he referred her to told us that our GP had written that it was probably a psychological issue, but he said that he'd rather investigate her properly. When we got our medical records to transfer to another doctor we discovered that he had written in all the referrals he made for her that she and I claimed that she was having seizures, but that there was probably a large psychogenic component. This had been our GP for 10 years, who I'd stayed with just for the general medical stuff in spite of his ignorance around ME/CFS. I didn't realise until we got those notes how warped his view of us was.
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@sea
I can't tell you how similar your description of your daughter's GP is to my own situation. GULP!
 
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This is all so deeply worrying. I'm so sorry to hear people are still being treated like this. Remember Jen Brea talking about a neurologist telling her she had conversion disorder, so she tested it by walking the 2 miles home, collapsed and couldn't leave the house for a couple of years. These idiots have no idea of what harm they cause.

"Functional symptoms are super, super common – and they live in all of us," he said.

This has painful echoes for all of us. How many times have we heard doctors who should know better describing ME/CFS as part of the continuum of normal tiredness etc.
 
Hutan said:
What's worse, this psychologist never told me or my son of her conclusion. I only found out a couple of years later when we left Melbourne and I asked my GP for a copy of all of our medical records. Our GP never told us of the diagnosis either.
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Does that mean that for any treatment offered by the GP, after being informed of the diagnosis, informed consent was not obtained?
 
chrisb said:
Does that mean that for any treatment offered by the GP, after being informed of the diagnosis, informed consent was not obtained?
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Our GP did want to send us off to Nathan Butler's exercise clinic that works with people with ME and fibromyalgia. I did some research and found out that he had been a therapist on the PACE trial. And I rang up the clinic and they had never heard of CPET/ VO2Max testing. Fortunately by that time, I knew what that said about their knowledge of ME, and tried to educate our GP. And certainly we did not go.

We were never offered medication for psychological issues.

I think, certainly by the end, and a bit before, our GP did think there might be something biological going on, and she continued to refer me to specialists to rule out biological causes like heart problems. My son just gave up on doctors; he didn't think seeing them was a good use of his energy.

After seeing the psychologist, who encouraged my son to return to school, he returned full-time. And became very much sicker over the year, with a month spent sleeping 20 hours a day. I think this possibly helped our GP to understand.

However, my daughter essentially recovered over the two years following becoming ill. And my GP told me how proud she was of my daughter for recovering. Which made me go home and cry.

I have thought about making a formal complaint about the psychologist. I don't know how I'd do that. I guess I should look in to it.
 
@Hutan - do you think your GP has any idea of how incredibly insensitive she has been? I can’t believe she would use those words... would a letter to her explaining how that made you feel have any impact?

I recently wrote a thank you card to my GP and her colleague when I had a breast lump - everything was dealt with at speed and very efficiently - which was a first for me. The doctors were very touched to have been thanked. Maybe they don’t get enough feedback of either kind?
 
Daisybell said:
do you think your GP has any idea of how incredibly insensitive she has been? I can’t believe she would use those words... would a letter to her explaining how that made you feel have any impact?
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She is a caring doctor; I guess it was just a moment when her prejudices leaked through. I nodded politely and said something about being proud of both my children for coping well in difficult situations. I don't think she noticed the point I was making. The conversation moved on.

Just getting to the clinic and waiting in the waiting room saps energy and makes it harder to think what should be said. And it took me by surprise. I'd be better at responding now.

I did send emails to her with information about PACE and so on, and copies of letters I wrote to specialists I saw who said worse things than what she said. I sent her a nice letter of thanks when we left, because she was, on the whole, kind.

After getting the medical records after moving away, I have thought about sending her an email to ask why she didn't let me or my son know about his conversion disorder diagnosis. Seems that I think about doing quite a lot and end up doing a lot less.
 
Hutan said:
We were never offered medication for psychological issues.

I think, certainly by the end, and a bit before, our GP did think there might be something biological going on, and she continued to refer me to specialists to rule out biological causes like heart problems. My son just gave up on doctors; he didn't think seeing them was a good use of his energy.

After seeing the psychologist, who encouraged my son to return to school, he returned full-time. And became very much sicker over the year, with a month spent sleeping 20 hours a day. I think this possibly helped our GP to understand.
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@Hutan
I think it's unprofessional for a clinician to attribute symptoms to a psychological cause but then not to attempt psychological treatment.

For years I thought my GP was racking his brains to identify the underlying conditions giving me my problems but in reality he had settled into doing as little as possible for many years. However he had given the contrary impression of keeping an open mind and continually looking for some cause. He was behaving as if I was too mentally fragile to be told his diagnosis.

Like your son's doc, this was a caring doc and I had stuck with him as I thought he was one of the best I had come across. Little did I realise I was being hoodwinked.

All was revealed when, after many years, I identified some physical causes but I then discovered he was surprisingly reluctant to investigate them. At that point I belatedly realised that he had been dragging his heels all along. Worse still, when I saw my medical notes they were remarkably absent of any useful observations of symptoms I had displayed - which now makes it harder for a second opinion to be based on my long and useful history.
 
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