The Trauma and Shock of a Terminal Diagnosis

Source: Daniel Miller

What metaphor is appropriate in describing the unspeakable devastation of a person approaching annihilation? Words don't readily support the sense of dread and despondency upon learning of and thus coming closer to the prescience of our death. And this is the first wave of our experience with coming to terms with a terminal diagnosis.

In its most basic form, it is a state of cognitive dissonance between the life just prior to, and life with, the terminal diagnosis. When we are confronted with the forecast of the body and mind’s deterioration into a state of dissolution, we are confronted with two separate mental selves. The first chooses to go on like nothing just happened. The second comes, if just for a quiver of a moment, touches the sinew of oblivion, and then recoils. Both states are real and both states are you.

A Look at Terminology

Let’s look at terminology first and introduce the two most common words used by the medical establishment to convey an unsavory state of affairs to a hapless patient: "diagnosis” and “prognosis."

The word “diagnosis” is barren, devoid of something that makes it palatable for human consumption. Even if you’re not in the office or hospital setting when you receive the news, the word itself carries the awful stench of an off-white industrial medical system bereft of personability and sentiment. Diagnosis is itself an inhumane term lacking texture, color, context, artistic expression, and life. It lacks humanity because it’s a stated fact embedding its content like a worker just doing his job who then goes home while we are left with an unimaginable burden. Diagnosis says, “Have a nice day, sir,” as it leaves the building never to see you again.

"Prognosis” unsurprisingly carries with it a similarly compassionless distinction. You literally can’t grasp it. At its core, It is a probability function that is more prone to being explored by a statistician than by a mere mortal. What we want to know is where we stand in relation to our disease but what we are left with is “bad” and “not so good." If you want to know more and ask, "Well, how bad?” you run into analyses of past and present studies of bad, mediocre, or good quality that studied a small, medium, or large number of patients with similar diagnoses to yours and based on these datasets, your survival probability is measured on a penumbra of weeks, months, years, having the certainty of the Heisenberg uncertainty principle of quantum mechanics. It’s an opposite state of certainty wrapped in a sentiment of “badness": “How do you like them apples?”

But you have to take a stand. And that stand will also be uncertain.

And when did we turn from shock into grief? Am I still on the same road?

Psychodynamic Formulation of Shock

The shock is our mind responding to the reality presented to it. It’s the mind’s psychodynamic response to being on the receiving end of "not your way." The concept is “I know what you want but it’s not going to happen that way." Shock is the immune response to the cognitive dissonance between what we want, what we expect, and what we hope for, and the stark contrast to what is presented to us.

Shock is the emotional trauma when we lose that which we hold dear to us; in this particular case, the dismemberment of our expectation to continue to be in this body, to be in this world, to have a life that is woven into the lives of those closest to us, to matter to them as they matter to us, to see those people grow, develop, and mature and to participate in their milestones, to have an impact on this world, to grow into ourselves with age. In essence, to continue to be.

In the beginning, when we are still in shock, it is impossible to coherently grasp all of the psychodynamic processes going on. In addition to anger, we have dread, severe anxiety bordering on or progressing to panic, and the thought of “anything but this” with internal pleading to something to make this experience go away. The mind employs repression in an attempt to cloak reality into the unconscious. Denial is another ubiquitous unconscious process employed both in the short and long term to avoid having to look at reality directly. For some, tears are the natural response but for others, an entry into a dissociative state occurs. Some experience depersonalization, a numbing of senses as the mind buffers against our angst, cutting off the emotional intensity of our emotions. Some minds employ derealization, another buffered state in which our internal world is supplanted by a numb and separate state of aloofness and separateness unhinged from the mind’s grappling with reality.

Coping Styles Matter

As time from diagnosis passes, the reliance on the mind’s need for a defense, and defense mechanisms of repression and denial, typically lessens. A person’s ability to cope comes to the forefront. Styles of coping are numerous, but some salient ones include the ability to accurately appraise a situation and come out with a cognitive/emotional way to extricate oneself from angst. One example of this can be a reframing of one’s goals and finding meaning in what a terminal illness means to them. For some, their reframe becomes a life lived anew with intention in the moment.

This new insight allows some to shed the superficiality and the irrelevancies of their previous life and examine a possibility with personal meaning by living closer to one's authentic self, an opportunity not previously taken given the luxury of time.

This time allows some to gain insight and finally answer their most pressing question, one that has eluded them all these years — “Who am I?” — and to intimately get to know themselves without prejudice, judgment, or condition.

In that reframe, the disease allows some to circumvent the thought that they are the victim and instead embrace the possibility of creating a fulfilling and highly meaningful life despite the outward perspective of tragedy.

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“Each [person] brings a characteristic mode of coping and an array of strengths and vulnerabilities to the experience of a life-threatening illness. Thus, each individual’s psychological experience with a terminal illness will be unique and will be affected by multiple different factors.”¹

Some positive attributes of coping well include a fortification of resilience, and an ability to persevere and thrive in spite of tragedy. Other salient coping strategies include the use of humor, seeking support from your partner, family, friends, and therapist, managing hostile feelings, and mindfulness, especially in times of distress when an ability to avoid identification with one’s mind is vital.

“People who are grieving engage in a process by which they explore the unique meaning of their loss and what the loss means to them in terms of who they are and where they are going. What just happened eventually leads to who am I now…and who am I going to be? People can explore how to rebuild their lives and once again lead lives that make sense to them, even in the shadow of a great loss.”²