You are not a statistic
Ironically, the surgeon who repaired her heart also left her heartbroken. While he and the neurologists may have considered it their obligation to present what they envisioned as the truth, they assumed too much. Statistical medical probabilities based on aggregate data don’t necessarily apply to an individual, who is unique and has her own potentially miraculous capacities. Statistics can’t take into account one patient’s willpower, another’s deep faith, and another’s reliance on non-conventional healing. They also don’t take into account the enormous value of a loving partner. Yet these factors, along with many others, can sometimes overturn the sentence of even a severe diagnosis.
With the initial shock of diagnosis, the injured person and the partner are extremely vulnerable. They feel as if they have been deposited on an alien planet where the laws of familiar physics no longer apply and the air is toxic. The suddenness of the change means there is a lag time between the new reality and their ability to function within it. All their normal coping skills remain on planet Earth even as they have to immediately learn to breathe in this new atmosphere. In this unhinged state, they naturally seek a powerful guide, and typically grant omniscient status to the doctor.
The doctor becomes the orientation point in this new and frightening universe. Her words signify more than educated opinion; they become oracular. It is as if she can foresee their future and has the potential to return them to safe ground. Linda’s heart surgeon’s parting words were, “Sorry you stroked, but heart-wise you’re fine.” He was satisfied that he had done his job. Anything outside the surgical realm was not his responsibility.
“I felt that he had dismissed me as a whole person,” said Linda. “I was just another surgical case to him.” Had Linda not possessed some abiding source of internal steel, the surgeon’s words might have become her living epitaph.
It is not unusual, in the aftershock of diagnosis, for patients and their partners to either submit silently to the sentence or pummel the doctor with questions as they desperately seek loopholes through which they can squeeze their fading hopes. The doctor remains the focal point. Her words at this delicate moment — where the mind is ricocheting from fear to fear, and the body and soul’s natural healing abilities need encouragement — can have fateful impact.
In the initial shock of a serious diagnosis, patients have four fears: death, disability, pain, and abandonment. These fears are a mobius strip of moving, intertwined, recurring emotions and assumptions, which offer the doctor many opportunities to counsel and comfort. Gene Lindsey, M.D., president and CEO of Atrius Health/Harvard Vanguard Medical Associates, said, “There are ways in which doctors can present the patient’s situation that are accurate without being callous, and can even be nourishing.” He described his role as a “travel agent,” guiding patients from where they are to where they need to be, making resources available to them along the way.
Doctor as healer
During the initial crisis period, a time of panicked vulnerability and dependency, when your investment in your doctor’s heroism is at its peak, it can be very hard to acknowledge the signs of a broken doctor-patient connection — or even to know what a healing, and not merely a medical, relationship looks like. In a healing context, your doctor can simply and repeatedly reassure you that he cares about you and will do his best to help you. He can inform you that there are many options for managing pain and disability, and that he will keep working to make you comfortable and help you improve.
A healing doctor can call on his own humility and acknowledge that while death or disability are possible, he can’t write your next chapters or know the exact trajectory of your illness. Healing is being present and promoting hope while presenting the medical perspective, and, at the same time, acknowledging the patient’s fears with compassion.
A doctor who understands healing will also acknowledge the well partner and recognize that person’s pain. A couple can rejuvenate or injure one another, and when one is sick, both need help. If the well person falls apart or shuts down, both may wind up stranded.
One day, Frank allowed his eyes to well up with tears in the hallway outside Linda’s hospital room, where he could be sure that his wife would not see him. One of Linda’s doctors noticed him and said, “Oh, no! You need to be strong for her.” Frank was surprised and frustrated that a physician would not recognize the validity of his emotions. He had spent the past three days sitting in a chair by Linda’s bed, watching her paralysis and panic, and experiencing his own fear. He did not need to be told to be strong. He was being Herculean.
Frank said, “If only the doctor had said, ‘I know this must be hard for you, too.’ That would have helped me feel less alone.” Instead, this doctor provided no support and left him carrying his wife’s desperation and his own misery in silence.
A doctor who is a true healer becomes a guardian of hope for both partners. He understands that even when the body is failing and despair is rising, hope can still be found. A psychologist who suffers from a neurological disorder and has been at the doorstep of health crises herself explains the persistence of hope in this way:
There is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.
If you and your partner ever feel that your doctor is not providing you with the support and guidance you need, it is time to either transform the relationship with your existing doctor or, if that is not possible, to look for another doctor. Luckily, Linda’s primary care doctor, who became her companion throughout her ordeal, never abandoned her or hope for her recovery. He kept reminding her, “The body can heal. That is what it is programmed to do.”
Barbara Kivowitz is a psychotherapist and Roanne Weisman is a medical writer. They are the authors of In Sickness as in Health: Helping Couples Cope with the Complexities of Illness.