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.
