July 15, 2016

The Sensational Psychosomatic Witchcraft Trials: Evaluating Somatic Symptoms and Initially Unexplained Pain


It has been a considerably long hiatus since I have posted material on this blog site. My apologies to anyone who follows this collection of art and essays. The reason for my long delay has been because I found that my work on factors leading to diagnostic delays in rare disease patients had required so much research that much of my time had been devoted to that. And what started as a catalogue of drawings relating to my own journey through the health care system eventually became more like a heavily diagramed forty -five page tome. The catalogue turned book project is entitled "You Look Great! Making Invisible Disease Visible: Drawing Out Ehlers-Danlos. What spurred on this escalation of drawings and writing was the incorporation of data and details submitted by fellow Ehlers-Danlos patients as well as a recent survey on patients by the Ehlers-Danlos Awareness group.

This dovetailed nicely with the chapter I began to write on over psychologizing medical illness as a factor in diagnostic delays. What testimonies revealed was shocking, as this has proven to be the most lethal of all factors in causing patients preventable harm and has probably been the most significant factor in causing diagnostic delays. My work on this has led to a conversation with Diane O’Leary, former director of the Coalition for Diagnostic Rights, who, in tandem with The Ehlers Danlos Awareness Group, produced an informative webinar on misdiagnosis of somatoform disorders in patients with medical illness, with particular emphasis on Ehlers-Danlos. http://www.chronicpainpartners.com/?s=&presenter_name=oleary-diane-phd&presenter_topic=all&presenter_location=all&speciality=all&submit=Search&post_type=webinar This was particularly pertinent for this patient sub group as the most recent survey by Ehlers-Danlos Awareness discovered that fully 97% of patients had their pain initially attributed to psychogenic factors, costing them years or even decades of untreated pain. And in a cruel irony, according to Team Inspire ( a patient advocacy group) and a recent publication in the Boston Globe, the current epidemic of addiction to illegally acquired pain medications has had a negative impact upon obtaining legally prescribed adequate relief for those patients whose pain has finally been identified. https://www.bostonglobe.com/metro/2016/06/18/the-other-side-america-war-opioids/i9YYLR0bGWFdP9z1T1pwjI/story.html This will be more fully addressed in a subsequent essay as the dual epidemics of chronic pain and drug addiction is a complex conversation fraught with misunderstanding and misinformation due to highly emotional rhetoric and political posturing.

I gave my chapter on over psychologizing illness a darkly satirical title: The Sensational Psychosomatic Witchcraft Trials. My experience and research on the subject opened up dark and scarey avenues so the title seemed apt. My drawing for this chapter, posted above, is one of my more detailed entries. I have excerpted my chapter from this book below: 

"In the days of the Malleus, if the physician could find no evidence of natural illness he was expected to find evidence of witchcraft: today if he cannot diagnose organic illness, he is expected to diagnose mental illness."
-Dr. Thomas Szasz


Throughout history, humankind has attributed misunderstood physical phenomena, especially manifestations of peculiar physical symptoms in a person, to metaphysical causes. When superstition ruled the day, people with misunderstood diseases were most likely burned as witches or thought to be possessed by the devil. While medical science has slowly chipped away at superstition, physical illness that cannot readily be explained through routine medical tests is treated with suspicion that often results in accusations of hypochondriasis, psycho-somatic, or "functional" disorders. Many of these are considered "a diagnosis of exclusion." Considering the fact that there are over 6000 rare disorders, 25,000 genes in the human genome with only a fraction of these understood, and millions of viruses, a "diagnosis of exclusion" is somewhat specious. Indeed it is more often used a diagnosis of convenience for the uninterested or suspicious and a diagnosis of a feeling of exhausted possibilities in those who are. It is convenient because it saves time, saves money, and requires the least amount of effort. It is convenient for getting rid of patients with difficult to diagnose conditions and those a practitioner might find annoying or troublesome. Much of the current literature devoted to explaining the so-called somatoform conditions is controversial as there is no hard scientific evidence that somatoform conditions even exist. Compounding the problem is that the recently revised (2013) Diagnostic and Statistical Manual of Mental Disorders V relaxed the criteria for diagnosis to such an extent (a person can receive a psychiatric diagnosis merely for being physically ill for more than six months and being concerned about it) that critics such as psychiatrist Dr. Allen Frances described this trend as "a mindless and irresponsible course."
 
The patient with invisible disease, such as Ehlers-Danlos, is particularly vulnerable to having his or her symptoms attributed to psychological causes. In the most recent Ehlers-Danlos Awareness World Wide survey, 97% of patients, prior to their diagnosis, reported that medical professionals attributed their symptoms as emanating from psychological rather than organic causes. This is unfortunate, for it delays diagnosis and treatment, prolongs pain and disability, and in some cases may even be instrumental in causing, through negligence, preventable death. Another unfortunate consequence of this particularly troublesome type of mis-diagnosis is that there is a legitimate place for some forms of behavioral therapy in medicine and psychological support in chronic pain diseases that is undermined by a patient’s being "burned" by previously inappropriately applied labels.
Many years ago, I had the unfortunate but very informative experience of witnessing a parade of criminals towards their public execution. The event took place in northern China, what used to be known as Manchuria. I was out shopping downtown and walking back home when I saw a mob of people coming towards me. As I was swallowed up by this mass of humanity I saw two trucks that they were crowding around. The first truck carried the criminals, the truck behind them a firing squad. I still recall vividly the man with the shotgun who had dark sunglasses on.
The mob continued to push forward, skipping gleefully and smiling in cheerful anticipation of seeing criminals shot to death. I was desperately pushing in the opposite direction, so as not to be physically present when this event would take place. Fortunately, my persistent bodily pressure against this tide of humanity eventually met with success. I managed to press my way clear to an opening on the road home. I had never been happier to see a clearing on a street.
Before getting to this clearing, however, I had to pass close by the pick up truck that carried the criminals. There were three of them slated for execution that day. The criminals were made to wear heavy placards over their heads, which hung down half the length of their bodies. Their names were scrawled at the top of these placards. An "x" was painted over each name. Beneath their crossed out names their crimes were painted in bold black ink. Number one: Murderer. Number Two: Rapist. Number Three: Thief.
In the truck immediately behind the prisoners the People’s Liberation Army men in their green uniforms squatted with their rifles held upright. It was a compelling scene. I looked in to the face of the thief destined to die shortly. It was a face of utter exhaustion, bereft of his humanity, his spark of life already psychically crossed out with his name.
I thought of this execution parade I had witnessed so many years ago as I wrote about the plight of patients labeled with conversion, or somatoform diagnoses on the road to seeking help for their very real and very painfully debilitating diseases. For this kind of labeling is like an execution. It can mean an end to the life of finding a diagnosis. The death of a possible treatment.
Indeed, much of the writing in this regard from health care professionals encourages the use of such labels to discourage a patient from continuing to seek help and contrives to end the possibility of health care institutions and future practitioners from providing it. It is appears to disproportionally affect women and invoked as a convenient way of cutting costs.
In my illustration, "The Somatizer Witchcraft Trials," the three central figures parallel the three convicted criminals from my Manchurian tale. The figures personify the underworld nature that is felt by navigating the healthcare system in pursuit of a diagnosis. To this end I have placed names on the placards they wear to allude to characters in literature and myth who have traveled to the underworld; Beatrice from Dante’s Divine Comedy, Persephone from Greek myth, and Inama from Mesopotamia. Like the criminals from my Manchurian tale, their names are crossed out and their crimes are printed below, effectively replacing their humanity with a negative label.
The theme of a triad permeates the composition. In Dante, as well as in pictural scenes of The Last Judgement, there is a division into the three spheres of Paradisio (heaven), Purgatorio (purgatory), and Inferno (Hell). The three figures stand in the central panel, purgatorio, awaiting judgement. They stand precariously on a trap door during their trial, which their accusers can open to the gates of Hell. The accusers are represented by pointing, authoritative hands emanating from Paradisio, or the heavenly strata. The iconography of the pointing hands was influenced by the semantics used in medical literature describing somatoform conditions as diagnoses that are almost never wrong and generally irrefutable. In faith-based, rather than science-based reasoning, patients are sometimes told that they can make this kind of diagnosis real and get well as a consequence simply by believing in it strongly enough.
In a genuine health diagnosis, a patient is told that he or she "has" a certain condition. But a common preface to somatoform disorder is "You are," as in "You are a somatizer," or "Your are a hypochondriac." That is not the language of rational medicine. That is the language of accusation. The totalitarian tone of such accusations is further emphasized by the hands in the drawing being large and overpowering - god like in their assertions.

At the lower strata of my drawing rests Hell, to which non-believers are relegated. Hell, here, is not without its notes of irony. The commonly parsed medical reassurance, "Its all just stress," floats menacingly in the smoke above the flames.
The condemned go through the fire and are turned into little blackened cookies that are then eaten by a satanic monster in the corner of Hell. The creature’s visage was adapted by my observations of tomb figurines and relief sculptures from Tang Dynasty tombs in China.
As a final caveat to this little sojourn through witchcraft trials and purgatories I should like to note that in my experience thus far, the doctors who subscribed to "conversion disorder" theories of initially unexplained symptoms were, thankfully, in the minority. But a strident and powerful minority they were, which may not bode well for the future of health care if this evolves in to a systemic problem. When, or if they do gain the upper hand, it is my hope that reason will eventually prevail, and that there will be enough practitioners of rational science who also listen to the better angels of conscience. A willing few to push against the gleeful mob of those who would accuse instead of admitting that they don’t have all the answers.

The Somatizer Witchcraft Trial 24" x 18" Pencil On Paper
We have determined by how our judgement sits
That you are guilty of being a somatizer witch
You have hexed your body to believe in its pain
by the poisonous spells from your wicked brain
You claim that an allergy caused your rash
Confess that its witchcraft or you’ll get the lash
You say that you hurt from a swollen aorta
We know that it is goblin conversion disorder
You have no proof that you have migraine
You are a hyper vigilant succubus, its very plain
There is no such thing as collagen defects
only spells and a hypochondriasis hex
You are sentenced to mental retraining devotional
To learn that your pain is only emotional
Believe in your guilt and you will get well
Deny it and you will burn in Hell
 
 
 
 


 
 

 
Bibliography

Barnum, Richard., M.D. "Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms." Adolesc Health Med Ther. 2014; 5: 67-71. Apr 17, 2014.

Ferman, J., Ham, D., " EDS World-Wide Survey: Presentation of Detailed Results." Webinar, EDS Awareness Survey, Cincinnati, May 17, 2016.

Frances, Allen J. M.D. Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder: Medical illness will be mislabeled as a News:mental disorder www.psychologytoday.com/blog Jan 16, 2013.

Pocinki, Alan G., M.D., "Pseudopsychiatric symptoms in EDS." Paper presented at the Ehlers-Danlos National Foundation Learning Conference, Providence, August 2 - 3, 2013.

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