Turning Patients into Numbers

Bridget Mildon
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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.

This debacle echoes an idea from The Ascent of Man.  Writing about the Holocaust, Jacob Bronowski profoundly articulated how people are turned into numbers:

“It is said that science will dehumanize people and turn them into numbers:  that is false, tragically false. It was done by arrogance. It was done by dogma. It was done by ignorance. When people believe they have absolute knowledge with no test in reality, this is how they behave … Every judgment in science stands on the edge of error and is personal.”

Even medical judgment is subject to the fallibility of man. But many doctors refuse to embrace this understanding. Humility is instead overcome by hubris and impatience. The thick-file chronically ill become “problem patients” when their doctors feel inadequate and are faced with medical uncertainty.

I continually questioned my now vacant inner self: Who could I trust if I couldn’t trust me? In my journey to find the truth, am I avoiding it? As part of trying to answer such questions, I founded FND Hope, a non-profit organisation for patients diagnosed with Functional Neurological Disorder (an inclusion term for Conversion Disorder). FND is theorized by some physicians as deriving from the brain’s inability to send and receive signals properly due to physical and/or psychological precipitating factors. Again, in theory, symptoms are believed to perpetuate due to the neuroplasticity of the brain. However, research is needed to fully validate this model and define effective interventions.

FND Hope began as part of my personal journey to look for answers. During this journey, I discovered that we are all, patients and doctors, avoiding a glaring truth. It is time we acknowledge the awkward and uncomfortable “pink elephant” in the exam room, which leaves patients and doctors engaging in often-silent battles over trust and authority.

Over the course of 3 years I have conversed with thousands of patients and many researchers on the subject of functional symptoms. I have gained a unique perspective in general of psychosomatic diagnoses.

While psychosomatic labels and mechanisms aren’t backed by medical science, we cannot deny the reality of mind-body connections either. Who hasn’t experienced the sudden sour stomach when they become nervous and upset? How else do we explain the many people who experience the physical impact of a panic attack? That being said, at the end of the day it is still unethical and dangerous to deny symptomatic treatment to patients on the grounds that the doctor doesn’t understand what they are seeing.

Imagine a world where we allow for medical uncertainty. We allow medically unexplained symptoms to be part of our medical puzzles without patient apology and without doctor frustration.

I believe patients have a right to seek medical care from medical or psychological professionals of their choice, for as long as they are symptomatic. This care should be free from biases and delivered in an open and mutually respectful collaboration where they can expect their doctor’s care plan will protect them medically first and foremost. Patients deserve complete transparency, and to be able to trust that they will not be harmed physically or psychologically in the process of diagnoses or treatments. At present state of knowledge and mental health practice, patient trust is often compromised.

All illness is integral to the human experience. Each patient’s narrative of what they are experiencing – whether or not understood or agreed upon — is still their experience. There is most often no reason for a physician to not trust a patient or to dismiss their account of what and how they are experiencing illness.  When that dismissal occurs, the most ethically sound observation is that the doctor has an issue of perception, not the patient.

Researchers and practitioners will not find answers to questions they fail to ask. They cannot find medical cures when they refuse to acknowledge symptoms of illness, or when they dismiss their patients for failing to fit medical stereotypes.

In my case, symptoms dramatically subsided once a doctor finally looked past my psychosomatic label and treated me for an autoimmune related neurovascular condition. I am often asked if I ever had FND. 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.

Knowing what I know, I have still on several occasions put my life in danger by not seeking medical attention for my very real and dangerous illness. I still fear being labeled psychosomatic. Not because I am conflicted by medically unexplained symptoms but because medical professionals are.

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Bridget Mildon
Bridget Mildon is President and Founder of FND Hope, spending most of her time helping patients and doctors understand Functional Neurological Disorder. She has submitted commentary to the pertinent work groups connected with DSM and ICD coding changes, and a response in the British Medical Journal advocating for those with medically unexplained symptoms.

21 COMMENTS

  1. I was (and still am) suffering from the side effects of several psych drugs, because my doctor refused to believe that my meds had anything to with my condition she labelled my illnesses psychosomatic. Now I can no longer receive any treatment or testing regarding any “physical” ailments I may have. A few doctors have even openly laughed at me when I describe a physical problem.

    I told one doctor that I had psoriasis on my scalp she laughed and said “No you don’t!” but she did not even bother to check. So I was forced to treat it myself with OTC products but the psoriasis has still spread. This is only one minor example of the prejudice I am now exposed to, things get more serious from there.

    Doctors seem determined now to force me to an early grave and I am afraid they will succeed.

    Darcy

    • Darcy,
      I am trying to reply to this without placing blame on the profession but I believe that health care providers own fear of diagnosis has created a situation in which, those of us receiving a mental health diagnosis, medical care may be seen as ineffective at best and abusive at worse. I have experienced what I have come to refer to as the condescending office visit. Where the patient talks and no one listens. In the last few years I have found a health care provider that is listening but it has taken time and I know he will retire before I die. Your reply to this article and the article itself spotlights the prejudice that the holder of a mental health diagnosis experience. This prejudice like all prejudices is based of lack of knowledge and fear. How do we run from this diagnosis — we don’t — and although we may be free or cured from a condition that has no testing to prove that it exists — that same lack of testing keeps the condition/illness/disease on our charts because it can not be proven that we do not have the condition. At this time in history we are placed in a false dilemma until a third option is available and that may be the condition never existed. Just like us the mental health practitioners bought a bill of goods and some are fighting their way out with truth and others have a large student debt or something else that keeps them vested in the lie. Until we all come out of the darkness that is the lie and are all vested in the truth the game will still be played. As a patient with a now non-existent mental health condition I work on empathy for the profession that has placed me in a position that has robbed me of my career, effectiveness, and unless things change will follow me to my grave. Yes the health care workers can be condescending like you I try to take care of my own health issues. However, I found an old doc with good skills and a young specialist with a positive outlook so I am here to tell you there is hope. Look for a doctor when you need a medical professional and remember we are all in this together. Something else I have learned is never state a medical condition to a Doctor give them the symptoms their responses are less condescending and generally they come to the same conclusion as the patient may have come to but the conclusion is their conclusion. In a state of frustration a doctor asked me “where did you get your medical degree from” I replied “box of cracker jacks how about you.”

  2. “Imagine a world where we allow for medical uncertainty. We allow medically unexplained symptoms to be part of our medical puzzles without patient apology and without doctor frustration.”

    This reminds me of one of the basic principles of Finnish “Open Dialogue”, something that i see as sadly lacking in conventional psychiatry: “tolerating uncertainty”. It is one of the seven basic principles of Open Dialogue and one of the key elements of Dialogic Practice.

    “Tolerating uncertainty is at the heart of dialogue. It is thus a specific element and an element that defines the other elements. In Open Dialogue, there is the fundamental orientation of creating an organic understanding of the crisis with everyone’s input (polyphony). This stance is based on the assumption, as well as our experience, that every crisis has unique features. Hasty decisions and rapid conclusions about the nature of the crisis, diagnosis, medication, and the organization of the therapy are avoided. Further, we do not give ready-made solutions such as specific, preplanned therapeutic interventions to the family or the single person in crisis.”

    http://umassmed.edu/psychiatry/globalinitiatives/opendialogue/

  3. Anyone remember Justina Pelletier? It was this kind of “junk science” diagnosis and “treatment”, coupled with draconian police state tactics, that kept her incarcerated at a locked psych ward at Boston Children’s Hospital and separated from her loving family for over a year. I was proud to be one of the protesters at the “Occupy the APA”/Free Justina rally in NYC last spring, and I’m glad to say justice (finally) prevailed…although it will not be complete until those responsible for this travesty are appropriately disciplined.

  4. 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.

    I basically agree that once this happens it seems like you can basically forget about seeing a doctor unless you can point to something that is obviously wrong with you. e.g if you have a giant rash then it will be hard for the doctor to blame that on depression.

    However, there’s also the thing… if an illness “is in your head”, or not an illness but just mental distress etc and doctors don’t really know anything except to charge outrageous amounts of money for damaging drugs or nothing then avoiding that can only be beneficial.

  5. Great article!

    This problem does not come solely from psychiatrists and other conventional medical professionals, it comes from psychotherapists and counsellors who share this arrogant, marginalizing and dehumanizing attitude!

    Ask a real estate agent about the most important consideration in buying a home: “Location, location, location.”

    Ask a psychotherapist about what causes somatic symptoms in someone who’s been diagnosed with a severe mental illness: “Truma, trauma, trauma.”

    It’s a given, in their opinion. And it’ arrogant, dismissive, dangerous. And far too often, wrong!

    Duane Sherry, MS
    Retired Counselor
    http://discoverandrecover.wordpress.com

  6. 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.

  7. I’m glad you finally got a correct diagnosis. And it strikes me that all the DSM stigmatizations basically function as a message to the medical community to NOT provide appropriate medical care to those so slandered. According to my family’s medical records, many of my physicians were incapable of even performing proper physicals on me … and even on my children. I ended up having to avoid doctors for a while and research medicine myself in order to find the right diagnosis.

    And it wasn’t until I could personally medically prove that I’d had the common symptoms of antidepressant withdrawal syndrome (given for smoking cessation, not depression) misdiagnosed as bipolar, and then dealt with a sick neurologist who created the symptoms of bipolar via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome, that I was able to get that psychiatric defamation of character off my medical records. And my children were not actually properly immunized until they were 15 and 18.

    Definitely our society has problems with medical incompetence, lack of ethics, and arrogance, toxic drugs, and what I now understand is the “dirty little secret of the two original educated professions.” According to an ethical pastor of mine, historically and still today, one of the functions of the psychiatric industry is covering up child abuse for the religions and easily recognized medical mistakes for the incompetent doctors. I was misdiagnosed and drugged, according to my medical records, based upon lies from some child abusers and because my PCP’s husband was the “attending physician” at a “bad fix” on a broken bone of mine, and she was paranoid of a potential malpractice suit. The medical community has been given way too much power resulting, it seems, in absolute corruption.

  8. Bridget,
    I went for years not having any physician listen to my increasing physical issues. One leg was dragging with the foot sideways, balance issues, my hands would freeze in mid-movement, obvious symptoms something was very wrong. My psychiatrist had put in my open medical files I was psychotic so any doctors in the same hospital system angrily dismissed me from their offices without an exam. To be told, “You need to go back to your psychiatrist” before I could finish a sentence was inhumane. This went on for years till one day I saw an independent neurologist who immediately could tell I have a progressive neuro disease. He asked how I could be in his office so ill and why no other doctor had helped me? I just shook my head because I was too ashamed to admit I had a psychiatric diagnosis that had proven to be wrong and had followed me relentlessly. This is by far not an isolated incident. We have been judged to be crazy and there fore have no right to medical help for anything other than psychiatry.

    I have tried my best to hide the psych diagnoses which other doctors later said I did not have but it’s still in my medical records. How can one psychiatrist’s assumptions of diagnosing my poly drug-induced behavior as mental illness and there is no way to get this erroneous diagnosis removed? That is an on-going question on MIA.

  9. Your story reminds me of a young man that came into my care while I was doing my clinical hospital training as a chaplain.

    He was 21 years old when I met him. He was a very angry young man and had every right to be so. Two years before he began having difficulty with his right hip, pain and soreness. He went to his doctor and the doctor declared that there was nothing wrong. Over the next two years his hip condition continued to deteriorate to the point that he was using crutches. He kept going from one doctor to the next, always getting the same diagnosis that there was nothing wrong. Then, one doctor told him that it was all in his head and that he needed to go and see a psychiatrist. Mind you, his hip was swollen!

    The psychiatrist immediately told him that he was mentally ill because he was trying to manipulate people so that they’d feel sorry for him. He was supposedly making up his “hip problem” to get attention! Mind you, his hip was swollen by this time but according to everyone his problem was obviously psychiatric in nature and not anything physical.

    Eventually it came to the point that he could no longer walk at all and was reduced to using a wheelchair. He eventually made his way to the hospital where I was in training. This hospital is a large medical center with a large reputation. The doctor who took his case at this hospital couldn’t believe his eyes when he examined the young man. He took one look at his hip and all he could say was, “Oh my God, you’ve got a tumor of the hip joint and it’s as plain as day to see! Why hasn’t anyone done anything to help you before now????”

    Thankfully, the tumor was benign and the doctor operated and removed it. The young man faced months of rehab due to the fact that his problem was all in his head!!!!! Talk about being angry! From that day forward I began questioning what doctors say and do and realized that I had to look out for my own health because too many of the so-called “specialists” have very idea of what they’re truly doing. This was 27 years ago and I’ve become only more adamant about who I allow to treat my health because this stupidity has gotten worse and not better.

      • I look back at how the psychiatrist said I would always be profoundly mentally ill and how his erroneous diagnosis crippled my credibility. I’ve learned so much by psychiatric manipulation and how I became trapped by psychiatry. To be denied medical help because I’m “mentally ill” is ridiculous. Seeing the neurologist that day saved my life. I was given help with my very real neuro-muscular disease.

  10. Bridget, you may not be aware of my book on this very subject “Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses”, published in 2012. There is an amazon link to it with a ‘look inside’ facility. In it I discuss the problems with the term ‘functional’ as well as many other issues you raise in your article above. Mine is a sociological critique which also details the various fallacies in reasoning when a doctor makes a psychogenic explanation. I believe, given the points you’ve raised here, that you will find it very interesting.

  11. I’m here tonight because I’m lifeless and bored.

    It took killing myself to earn my way into the hospital where I belonged and needed to be (and wanted to be).

    But they only saw the suicider. They failed to see the sufferer, who is isolated and alone, and tired of suffering such dire ill health. I was right there – omg, right there – in the cardiac unit but I was strapped to the bed at ankles and wrists, and they decided to pass on doing the echocardiogram I so desperately needed (WTF!). They only saw the suicider, not the reason for the lethal dose I took.

    I killed myself for too many, too difficult reasons but some of the primary reasons were my dire ill health, and, the impossibility of getting authentic support and medical attention. I had been driven and forced into a state of existential torture and after too long of it suicide was inescapable and mandatory.

    It’s been 5 months since I killed myself as a means to get the attention and care I so severely, extremely, desperately needed but it just did not work at all. All it managed to do was scar me deeper and land me in a psych ward. Again.

    Through the entire ordeal I got to watch people do their jobs — and not do them at all — both, at the same time.

    How very absolutely horrifying and maddening.

    Turning people into numbers, or numbing people from the pulse of life to the point of their reduced-to-nothing value and worth? mmhmm.