Great new article on the damage done by "psychosomatic" diagnoses

[Woolie]

Some excerpts below. for more, go to: http://www.madinamerica.com/2015/04/turning-patients-numbers/

Turning Patients into Numbers

By Bridget Mildon

Imagine your life turned upside down with chronic symptoms like fatigue, stroke-like symptoms, brain fog, sharp chest pain, coughing up blood … and doctors can’t seem to figure out what is wrong. Then imagine your feelings when one of the doctors decides that this spectrum of symptoms is psychosomatic or “all in your head.”

I felt persecuted from the moment I was given a psychosomatic label. I found myself hostage to a diagnosis that I hadn’t even known existed: “conversion disorder.” Even though the diagnosis was hidden deep within my medical file under piles of negative test results, it seemed to reveal itself at each new doctors appointment or ER visit. This diagnostic code was now part of me as if it were a scarlet letter on my forehead.

I was trapped not only by my pain and debilitating symptoms, but also by physicians who didn’t know how to provide effective care. In my most delicate state of mind and body, I was authoritatively told: I must trust and accept a mental health diagnosis in order to be cured.

I began scrutinizing and searching for skeletons in my closet, looking for a reason, an answer, anything, which I hoped would lead to my cure. I found myself lost in a world of medical uncertainty. I was an average carpooling mom going about my life until a trigger was pulled and entrapment of my body began. And make no mistake: it is an entrapment, which doctors since the 19th Century have attributed to suppressed emotional trauma, despite a lack of medical evidence.

After trying to uncover hidden or suppressed trauma to no avail and after years of illness, why wouldn’t I question this veneer of authority? Yet, patients like me are routinely told it is they themselves who cannot be trusted. Like me, they are said to be caught up in an illusion of fabricated symptoms crafted from unconscious trauma and their own pretense. They have built their illness out of myths, on a foundation of emotional escape or make believe.

I had sought out a doctor with hopes of getting my life back. But I became ever more confused as he confiscated my self-trust — the last fiber of my being that I had tightly held, guarded, and protected because it was all I had left. It was my soul that was afflicted the worst by psychiatric stigma, banished to solitary confinement, a horrible atrocity from which I had no escape.

There are many ways a doctor can deliver a psychosomatic diagnosis. Some physicians delicately pry self-assurance from the patient’s weak finger tips, consoling with a gentle tone and offering a warm smile. Others cavalierly rip it from the patient’s grasp with purpose and supremacy, when the patient least expects it. Some use an element of surprise, sneaking psychosomatic labels into medical records but failing to discuss them with their patient, so as not to be asked to justify their action.

I was damaged after a neurologist pick-pocketed down through my deepest layers of self and rifled through all my emotions, confiscating the last ounce of self-respect I had left. This theft left my mind fearfully exposed in complete nakedness, silently crying out for emotional security and yearning for my doctor to provide me with a definitive care plan. I was then left alone with a “care plan” that amounted to little beyond the reassurance that my cure lay with psychosomatic acceptance.

In order to “accept” a somatoform illness diagnosis, I would be required to abandon my inner self. I must sever all internal ties and deny the opinion of my most insightful observer — the self. After spending my entire life picking through my faults and analyzing my every move, I must now let go of everything I knew to be true about me. I must declare that my mind and what I feel is a lie. Instead, I must trust the authority of someone who knows very little about me, in order to be “cured.”

The professional who proclaims this strange notion of truth now gets to hold my health for ransom. After a psychosomatic diagnosis enters medical records, all further medical investigation and care are compromised.

.... more at http://www.madinamerica.com/2015/04/turning-patients-numbers/

 

[Bob]

..I would be required to abandon my inner self. I must sever all internal ties and deny the opinion of my most insightful observer — the self. After spending my entire life picking through my faults and analyzing my every move, I must now let go of everything I knew to be true about me. I must declare that my mind and what I feel is a lie. Instead, I must trust the authority of someone who knows very little about me, in order to be “cured.”

I was surprised how much this reminded me of the lightning process. I hadn't thought of the lightning process in these terms before. i.e. that it's designed specifically along the lines of false illness beliefs - that the self can't be trusted - and therefore its foundation is one of psychosomatic psychiatry.

 

[Bob]

I believe that Jen Brea was originally diagnosed with conversion disorder.

 

[A.B.]

Joining a cult and accepting a psychosomatic diagnosis seem to have a few things in common.

 

[Cheshire]

..I would be required to abandon my inner self. I must sever all internal ties and deny the opinion of my most insightful observer — the self. After spending my entire life picking through my faults and analyzing my every move, I must now let go of everything I knew to be true about me. I must declare that my mind and what I feel is a lie. Instead, I must trust the authority of someone who knows very little about me, in order to be “cured.”

I think this is a core issue in a psychosomatic diagnosis, Bridget Mildon's wording is particularly powerfull. You can't rely on your thoughts, you can't believe your body, your whole self is untrustworthy. This whole process is a denial of your existence, it's completely destructive.

Reminds me of a video I posted some time ago. It was made by the coalition again paediatric pain featuring psychiatrist Richard barnum about the diagnosis of conversion disorder or somatoform disorder in children experiencing "unexplained" pain. http://forums.phoenixrising.me/index.php?threads/another-medical-kidnapping.26797/page-3#post-433086

12 40 There are incredibly profound problems with how this diagnosis gets used. Obviously in the first place, it leaves the actual medical problem unreckognised and untreated. The essential accusation of dishonesty that this diagnosis represents is compelingly distressing for patients. It undermines the patients own genuine subjective reality of what’s going on with them, it undermines the trust between doctor and patient. Espacially for children it’s explicitly powerfully traumatic to be accused essentially by a doctor who you trust and revere of being a lyer, dishonest. This is how patients experience being diagnosed with conversion disorder.

 

[Sean]

You can't rely on your thoughts, you can't believe your body,

Except if you are reporting any 'recovery', then it is hard evidence.

The essential accusation of dishonesty that this diagnosis represents is compelingly distressing for patients. It undermines the patients own genuine subjective reality of what’s going on with them, it undermines the trust between doctor and patient. Especially for children it’s explicitly powerfully traumatic to be accused essentially by a doctor who you trust and revere of being a lyer, dishonest. This is how patients experience being diagnosed with conversion disorder.

Which, to conversion disorder loving doctors, is just a problem with the sales pitch, not with the diagnosis itself nor the way they use and impose it.

 

[taniaaust1]

Dangerous diagnoses in which many psychs will give someone and once there you probably will never get it off of your medical records, each new doctor will look at you with suspicion. I've got some crap on my medical records at the hospital due to a bad psych who didn't believe in ME and got given a wrong psych diagnoses in the past by disbelieving in ME/CFS psych.

Last time while I was at the hospital after a collapse in which they had to give me an IV, Im sure I heard some discussion going on over removing the false stuff the bad psych had written about me the time before when I was there but another person there felt uncomfortable removing what another doctor said, ...so the crap remains.. polluting views on me to any one who doesn't know me and my health issues well. Causing me at times to have to fight hard to get the treatment I need and causing me hence much anxiety which then can also play into the views of "mental health issue".

If you have never checked out somatization disorder and its symptoms, you should do so http://en.wikipedia.org/wiki/Somatization_disorder .

I feel sorry for anyone who doesn't fit the new SEID mold as they are nearly bound to be now end up being given a somatization disorder diagnoses rather then a "we don't know what is wrong with you" diagnoses.

and then what every you do don't get upset and become suicidal at times over the terrible way you are being treated while trying to deal with severe symptoms or you may well then just find a borderline personality disorder label slapped on you to at which point you will then be accused of lying about your symptoms and will be thrown out of hospital even when you are feeling suicidal and told "you are not depressed"

The bad hospital psych told me that when I was suicidal and there after an attempt and obviously having issues with depression.. as all your symptoms even the depression then may be ignored. I still cant believe that I had a psych tell me after a suicide attempt that I wasn't depressed when I feeling very depressed and still having issues with this feeling and then started bullying me over my ME symptoms cause he didn't believe in this illness.

I think from the moment he say ME/CFS on my hospital notes, he had made up his mind about me and that being FAKE.

How many people with ME/CFS are being falsely diagnosed with mental health issues? cause testing in this disorder of ME/CFS abnormalities aren't being encouraged and even when one has many of those abnormalities showing on tests, they are often ignored that the person has them. (Even with me having to have a drip at the hospital quite often and many other health issues being shown on my hospital issues, the psych wouldn't believe I was sick "90% of your health issues are in your head" .

No wonder I hate psychriastrists so very much.

 

[Woolie]

Which, to conversion disorder loving doctors, is just a problem with the sales pitch, not with the diagnosis itself nor the way they use and impose it.

Yes, absolutely, @Sean, I've been reviewing the literature, and there's loads of articles on how to "present" the diagnosis to patients in the "right way".

Generally, the people writing in this area seem perplexed as to why patients are so negative about a psychogenic diagnosis. Usually, they conclude its because people have negative attitudes to psychiatry in general and don't want to see themselves as mentally unwell.

 

[Woolie]

Reminds me of a video I posted some time ago. It was made by the coalition again paediatric pain featuring psychiatrist Richard barnum about the diagnosis of conversion disorder or somatoform disorder in children experiencing "unexplained" pain. http://forums.phoenixrising.me/index.php?threads/another-medical-kidnapping.26797/page-3#post-433086

Thanks for reposting this, Cheshire, I must have missed it. Really useful.

 

[Sean]

Generally, the people writing in this area seem perplexed as to why patients are so negative about a psychogenic diagnosis. Usually, they conclude its because people have negative attitudes to psychiatry in general and don't want to see themselves as mentally unwell.

The profession will come around to reality – after a round of science advancing retirements.

Soon would be nice.

 

[Sidereal]

Good comment under the article:

Well said, Bridget. As I’ve written elsewhere on Mad in America, “It’s NOT ‘all in your head'”.

We can all acknowledge that when we are stressed, anxious, or emotionally down, we do experience measurable physical effects. There is also some evidence for neuro-elastic processes in the brain, by which stress or pain can become chronic beyond the initial external stimulus. But beyond that, we need to be profoundly cautious of over-generalizing a psychiatric delusional system. I am personally convinced that the entire field of so-called psycho-somatic medicine is better characterized as psychiatric malpractice and mythology practiced by arrogant and financially self-interested professionals “against” patients, not on their behalf. I am also concerned by the medical surmise and outright unsupported hype that have been loaded onto very modest results obtained with rational behavior therapy.

When a patient presents to a medical doctor with symptoms that the doctor doesn’t understand, the most ethically sound assumption is that there is an as-yet undetermined medical issue — not a case of malingering, “conversion disorder” or psychogenic ANYTHING. Psychosomatic diagnoses say more about the doctor than about the incompetence of the doctor than about the difficulty of their patients.

Keep up your good work.

Sincerely, Richard A. Lawhern, Ph.D.

 

[eafw]

I've been reviewing the literature, and there's loads of articles on how to "present" the diagnosis to patients in the "right way".

Woolie, do you have access to this ?

"Doing things with illness: the micropolitics of the CFS clinic"

"clinical consultations can often take on the form of a political contest between physician and patient to define the true and real nature of the patient's disorder--a micro political struggle in which neurological symptoms can be re-framed as psychiatric symptoms, and psychiatric symptoms as neurological."
http://www.ncbi.nlm.nih.gov/pubmed/11144910
http://www.ncbi.nlm.nih.gov/pubmed/11144910

I can only see the abstract but would be interested in any further quotes from the article itself if you or anyone can see it.

 

[SDSue]

I think this is a core issue in a psychosomatic diagnosis, Bridget Mildon's wording is particularly powerfull. You can't rely on your thoughts, you can't believe your body, your whole self is untrustworthy. This whole process is a denial of your existence, it's completely destructive.

Reminds me of a video I posted some time ago. It was made by the coalition again paediatric pain featuring psychiatrist Richard barnum about the diagnosis of conversion disorder or somatoform disorder in children experiencing "unexplained" pain. http://forums.phoenixrising.me/index.php?threads/another-medical-kidnapping.26797/page-3#post-433086

Here's your man, @alex3619. He even drops an F-bomb for effect!

 

[PennyIA]

I'll be honest? If there was an actual real and true cure? I'd love to get diagnosed with a mental disorder that I could get a treatment for and recover. BUT, the issue is that the only way their treatments cure you is because if you stop reporting symptoms - you must be cured. But, it doesn't cause the symptoms to stop happening... and I'm sorry - convincing me to just ignore my symptoms isn't a cure in anyone's book... except the delusional.

 

[Dolphin]

I thought this was a very good article.

My current doctor, not a neurologist, can account for all my symptoms. However, I know enough to understand that I may have had some form of functional overlay. Had my original doctors not been "afraid" of medicalizing my possible functional symptoms then they would likely have been able to unravel my medical mystery many years prior.

I don't know this woman but don't like wording like "functional overlay" and not sure it is of much benefit.

I recall reading a story of somebody who had initially got a functional diagnosis but who eventually got a hard neurological diagnosis (something very serious, possibly CJD - can't remember) and the psychiatrists then tried to claim she had this neurological diagnosis and a functional disorder.

 

[Woolie]

I thought this was a very good article.


I don't know this woman but don't like wording like "functional overlay" and not sure it is of much benefit.

I recall reading a story of somebody who had initially got a functional diagnosis but who eventually got a hard neurological diagnosis (something very serious, possibly CJD - can't remember) and the psychiatrists then tried to claim she had this neurological diagnosis and a functional disorder.

I agree, @Dolphin, the idea of "functional overlay" is even more dodgy than the functional diagnosis itself. It means that even once a medical diagnosis is given, any symptoms the person shows that are not considered to be typical of that diagnosis can still be attributed to psychiatric problems. So you are not safe from a psychogenic diagnosis even if you have a medical diagnosis.

The idea that a person can have one set of symptoms caused by two separate sets of casual factors - one organic and the other psychogenic - just seems to be highly improbable.

 

[alex3619]

Here's your man, @alex3619. He even drops an F-bomb for effect!

He does talk about risks of diagnosis, and uncertainty, and advocates saying "I don't know" which is the appropriate response for many of these conditions. I am not sure he has fully considered the range of possibilities of harm from psychogenic labels, or fully appreciated just how little evidence there is for their existence, though he does imply things or indirectly address these issues. What I find interesting is he notes the distress caused from these labels, the loss of trust, the failure of treatments for them, and even post traumatic stress disorder from these labels.

 

[alex3619]

So you are not safe from a psychogenic diagnosis even if you have a medical diagnosis.

In any patient cohort there will be a range of symptoms. Arbitrarily or subjectively selecting a subset with psychogenic overlay is extremely problematic. If you are at the wrong end of a statistical bell curve on symptoms you might get inappropriately labelled. I suspect this could happen to both severe and moderate ME patients, and probably many mild patients.

 

[Woolie]

Some other quotes from the talk by Richard Barnum that @Cheshire posted above (thanks, Cheshire):

... This is something that I, I just really wasn’t aware of until I spent the last two days interviewing children and their parents for a documentary that TCAPP is working on constructing and learned how seriously kids are traumatized by this accusation of conversion disorder, and what a compelling impact it has over time, both in terms of continuing anxiety symptoms, and especially in terms of suspicion and aversion to any further kind of either medical or psychiatric intervention. It just, just makes it really impossible to carry on from there. And obviously, PTSD is a secondary mental disorder and includes the PTSD that can stem form multiple medical procedures, and workups and surgeries and so forth, many of which end up being painful and not particularly satisfying.

... The requirement that conversion disorder be the result of an unconscious process not only makes the whole concept sort of impossible to validate, but it also contributes to the, the terrible interaction that happens between doctors and patients when the conversion disorder diagnosis is made because what the doctor says in diagnosing conversion disorder is “you don't really have a problem, you don't have a medical problem, its actually all in your head and this is something that is coming from an unconscious process”. In other words, “you don't really understand what’s going on, you don’t, you don't know what it is that you’re doing. I know what you’re doing because I’m a doctor and I sort of recognize this process going on, and I understand that you’re, you don't know this because you’re in the throes of some kind of strange unconscious psychological process that is outside of your control”. This is something that patients love to hear. It bolsters their confidence in the doctor because the doctor can always say "you don’t know, you don't actually know what’s going on in the back of your head because its all unconscious". And this is, this is one of the aspects of the process that makes it so terrible in terms of how it works.

... I don’t think, I truly don’t think that most doctors understand how traumatic it actually is, how bad it is for kids to be labelled this way. I think that most doctors, once they make the diagnosis of conversion disorder… um when you think about how this actually works its probably pretty uncommon that the doctor who makes the diagnosis of CD then carries on a further long interaction with the patient that’s helpful and understands what the patient’s experience has been. I think in fact what happens is that the doctor is then able to feel relief that they have solved the problem, its you know, its probably just some kind of emotional problem, I don't really understand it, whatever, and someone else will take care of it. You know that, the problems that that process causes for patients are profound. But I, I genuinely believe that the doctors who sort of take part in the process don't understand what they’re doing they don't have the opportunity to understand what they’re doing, because they don't follow up with the patients, they don't know whether the conversion disorder diagnosis has in fact led to helpfulness or not, and you know the feeling that goes along with making this diagnosis is usually one of pretty significant personal frustration and you know, externalization, the sort of effort to sort of lay the blame on the patient and really not really think about it. That pretty terrible, but its, but I, as I said I don’t think people really understanding how bad it is, what the sort of powerful traumatic impact it has.

... The right response, when you don't know what’s going on to do is to say “I don’t know what’s going on, and I understand what a terrible problem it is for for you, and I will do whatever I can to help you find someone who can help you figure this out.”

 

[Woolie]

@eafw, here are some links to articles that talk about how to "present" a psychogenic diagnosis. Most of the literature focuses on psychogenic seizures (one type of psychogenic diagnosis that's scarily prevalent). But I dug out a few other examples.

There's also a lot of work exmaining what words to use to best conceal the true nature of the diagnosis (functional, psychogenic, etc.) - I've included an example in the third link.

http://pmj.bmj.com/content/81/958/498.full.pdf+html
http://www.sciencedirect.com/science/article/pii/S1059131197800726
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC139034/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073765/
http://www.ncbi.nlm.nih.gov/m/pubmed/7604763/
http://archneur.jamanetwork.com/article.aspx?articleid=800272
http://www.neurology.org/content/79/3/282.short main article and commentaries

(sorry, the last three links are to abstracts only - let me know if important, I might be able to interloan)

Here is a link to the other article you mentioned:

https://www.dropbox.com/s/r7cfz1vubw1o5x1/Banks and Prior 2001.pdf?dl=0