So they think you’ve got conversion disorder?

 the informed patient’s perspective - PART 1

Please be sure to read PART 2 - here.

Overview

Opinions

The fish doc and you!

How accurate is diagnosis today?

Who gets diagnosed with conversion disorder?

Choosing and managing your healthcare and your doctor

Research and learning

Overview

In the Diagnostic and Statistical Manual IV (DSM IV), conversion disorder is one of the somatoform disorders. In the International Classification of Diseases 10 (ICD 10), it is called ‘dissociative disorder’.

 These terms mean that doctors consider the patient’s mind (not brain) is creating physical symptoms whilst there is no obvious organic cause or disease. In dissociative or conversion disorder the symptoms appear as neurological (e.g. blindness and vision difficulties, numbed and tingling limbs and head, limb weakness, speech difficulties, limb pains, seizures etc).

There are many other names that are sometimes used interchangeably: functional neurological disorder, psychogenic disorder, idiopathic symptoms, functional symptoms, hysteria, pseudo-neurological symptoms, repressed trauma, stress, factitious disorder, medically unexplained symptoms, psychosomatic problems, symptoms exacerbated by depression/anxiety, somatoform symptoms and so on.

The history of this diagnostic category is very useful in understanding the practice of today’s GPs, neurologists and psychiatrists, and in how you can manage your healthcare so that you get the most accurate diagnosis and the most appropriate treatment. (For a fuller version of the history of conversion disorder and the problems with this diagnosis, please click here. http://docs.google.com/View?id=dfs7vbfx_100q43b8c4d )

Opinions

Today, doctors and researchers say:

  “Well, I don’t really know ... I can’t  say ... I suppose it's ... well I suppose it's maybe their way of dealing with problems they can’t solve ...” - London neurologist #1 on patients with conversion disorder

 “…conversion disorder is largely a 'delusion and a snare' since many of the people said to have it eventually go on to develop a neurological disease that in hindsight could explain their original symptoms…”  - Dr Eliot Slater, in paraphrase

 "Dissociation is the perfect psychoanalytic-style vehicle for creation of a pseudoscience, since there is no way to disprove its existence…”  - Prof. Frederick Crews

 “It is clear that generations of physicians have passed on the doctrine of hysteria to the medical students they are training rather in the same way that doctrines or creeds are passed on by priests, without critically interrogating them or inquiring into the historical conditions under which they emerged.” – Richard Webster

 “... the person who just keeps coming back to see you because they’ve got this symptom and that symptom ... I put them in a different category because they are not ... well, I suppose you have to use the word ‘troublesome’... It's all about how they make me feel…”   - London neurologist #2 on patients with conversion disorder [emphasis added]

Patients say:

“My GP offered me medications for the possible depression I might be experiencing...I reminded her that I am not depressed. I also reminded her that stress does not cause tingling, buzzing and numbness or hands to fall asleep or shooting burning pains down legs.  Stress did NOT cause my xyz - so WHAT did??”  – Patient #1

 "Good for you for reminding your doctor that depression doesn't cause your symptoms.  I am so damn sick and tired of how many of us have the big "D" slapped on us just because the doctors are too lame to figure out what is at the source of our illnesses.” – Patient #2

The fish doc and you!

Women in ancient Egypt and Greece were diagnosed with ‘hysteria’, a condition in which the womb withered and wandered around the body seeking moisture. On its travels, the peripatetic womb played havoc with the organs it bumped into, causing pain and many other discomforts. This daft notional condition, rooted in primitive ignorance and sexism, survived for millennia under barely concealed guises.

Victorian doctors revived this diagnosis of ‘hysteria’. They did away with the daft ‘wandering womb’ theory and replaced it with the hypothesis that the mind – a wandery, diseased psychology – converted emotional anguish into abnormal physical sensations. Sigmund Freud was a leader in relabeling hysteria as ‘conversion disorder’.

 Freud, a cocaine addict with dubious professional integrity, had been engaged in studying the spinal cords of lower fish species until his interest in ‘hysteria’. His previous foray into human neurology resulted in his theory that cerebral palsy was caused by the baby’s rage at being born to their particular family.

 His nephew, Edward Bernays, used his uncle’s theories on resistance, sublimation, fantasy, persuasion, projection, repression, desire, transference, counter-transference, seduction etc. in his spectacular career as the Madison Avenue guru who revolutionised public relations and advertising. Thus, Freud has been supremely influential in the evolution of our current spin-doctor, sound-bite world.

How accurate is diagnosis today?

People with a diagnosis of conversion disorder sometimes ask, very reasonably, ‘Well, where in my brain is producing these symptoms?’.  21^st century medicine still cannot answer this simple question. Here’s a sample of what medical researchers and doctors say in recently published medical papers:

"The…assumption [that psychological distress can be transformed or ''converted'' into physical symptoms] is questionable in that it is difficult to conceive of a satisfactory explanation as to how the process of conversion might operate.”

“Despite recent advances in our understanding of the epidemiology, etiology, and treatment of common psychiatric disorders, our understanding of conversion disorder remains limited….There is a clear need for further systematic research in this area.”

"True etiology is unknown. Most clinicians presume conversion reactions are caused by previous severe stress, emotional conflict, or an associated psychiatric disorder.”

“Despite a rich medical history, conversion disorders remain an elusive clinical phenomenon. Theoretical formulations have often taken precedence over empiric data.”

“With a patient suspected of conversion disorder, the physician faces a dilemma: on one hand, avoidance of inappropriate investigations is considered important in the management of the somatizing patient; on the other hand, the risk of missing organic disease is real, the positive evidence for a psychological cause for the symptom is often weak, and a diagnosis of "hysteria" is mainly a matter of faith.”

A glance at the DSM IV’s wide-ranging diagnostic criteria shows this same vagueness:

Diagnostic criteria for conversion disorder as defined in the DSM IV:

• One or more symptoms or deficits are present that affect voluntary motor or sensory function that suggest a neurologic or other general medical condition.
• Psychologic factors are judged to be associated with the symptom or deficit because conflicts or other stressors precede the initiation or exacerbation of the symptom or deficit.
• The symptom or deficit is not intentionally produced or feigned (as in factitious disorder or malingering).
• The symptom or deficit, after appropriate investigation, cannot be explained fully by a general medical condition, the direct effects of a substance, or as a culturally sanctioned behavior or experience.
• The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.
• The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of somatization disorder, and is not better accounted for by another mental disorder.

It's important to know that this diagnosis is based on statistics that are related to the historical viewpoint of many doctors who've just accepted conversion disorder as fact. Diagnosis is entirely dependent on limited scientific knowledge of physical neurological pathology, psychology and the history of a disorder that has been used as a convenient explanation for millennia. There is very little, if any, science involved.

Although we certainly wouldn't want to unsettle people who have faith that their own doctors have given them the right diagnosis, it's hard to think of any other long-established diagnosis whose experts are so fundamentally unsure.

Who gets diagnosed with conversion disorder?
Diagnosis of women outnumbers men by more than 2:1. People who are judged as not too smart and those who come from rural backgrounds are considered most prone to converting presumed psychological anguish into physical symptoms. The doctors believe that, when these patients' repressed fantasies and sublimations are pointed out, their ‘conversion' clears up within a month or so. Those whose symptoms don't melt away are often considered resistant.  

Much is made of the ‘primary and secondary gains' that Freud and doctors today imagine that their psychosomatic patients enjoy. The thinking is that patients somehow gain comfort, support and even financial benefits by being ill.

Before MRI and other hi-tech diagnostic tests clearly showed physical causes, many, many people were considered to be ‘converting' their emotions into physical symptoms. Even now many people are still misdiagnosed for years until the physical illness they've been struggling with - untreated - for years becomes extremely disabling or even fatal. This is because tests are deliberately withheld in order to stop presumed conversion disorder sufferers focusing on their symptoms and signs.
 

Choosing and managing your healthcare and your doctor
In these circumstances, it's vital that we educate ourselves about our signs and symptoms and how this diagnosis works. It's also crucial to take a very pro-active part in managing your healthcare. Here are some suggestions, all learned through long and hard patient experience:

You - the most important person in the equation!
§       Remember that you know your body better than anyone. Trust it, your mind and your intuition. If you can find no conflicting anxieties that you've ‘repressed' (which is unlikely according to the doctors' own statistics), then never let anyone tell you vaguely or otherwise that ‘it's all in your mind'. Keep pressing for proper tests.

§       Never forget, no matter how much the healthcare system implies otherwise, you're worth it!

Learning about your signs and symptoms
§       Keep a journal of your activities, diet, stresses, signs and symptoms. ‘Stress' can be over-estimated - it's necessary to have a balance of relaxation and moderate ‘stress' to function properly. Humans were designed to deal with most stresses!

§       Understand the medical difference between signs and symptoms. Doctors use signs to make definitive diagnoses. Conventionally, signs of disease are what can be physically measured by scientific method which give repeatable results: e.g. blood pressure readings, MRIs and X-Rays show physical anomalies, blood tests give measurable results against known scales, neurologists use knowledge of physical effects like Horners', L'Hermitte's, and Babinski's Signs to assess physical disorder. Symptoms are what you experience; headaches, tingling hands, loss of breath etc. These are subjective and are commonly thought by doctors to be made worse or even created by your anxiety, depression or distress.

 §       Educate yourself thoroughly on your signs and symptoms and those of others with similar problems. Some doctors will label you a hypochondriac for being so interested. You are not. You are responsible for your own health and are reasonably applying yourself to that responsibility.

§       There are many ways of saying ‘It's all in your mind'. Educate yourself equally thoroughly about them and how they are applied (see above sections as a starting point). Be confident that true conversion disorder is actually very rare, and often preceded or accompanied by other serious mental illness and very extreme emotional trauma in earlier life.

§       Never be frightened by what you learn. Most written descriptions of symptoms and case histories are worrying and/or shocking. Most medical students go through a phase of being sure that they have almost every disease they read about. The vast majority of conditions and diseases are manageable and treatable - and bearable with accurate knowledge, interventions and medications.

Please be sure to read PART 2 - here.