Sometimes Denial Is a Useful Tool

Credit: David Peckham via Flickr

Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle ~ Elisabeth Kubler-Ross

Learning that you have a serious and possibly fatal illness is a terrible blow. After the initial shock wears off, most people take some time to digest the news, discuss it with loved ones, and decide where to go from there. Typically, they have a million questions. “What will my treatment look like?” “What will the side effects be?” “Will I be able to continue working?” “How much will it cost?” And on and on.

Knowledge is power. Knowing what to expect gives us a sense of control, which seems particularly important when life has just demonstrated that we have no control at all. Some of us are more hungry for knowledge than others. But almost everyone wants to have some idea of what’s going to happen next.

And then, there are those of us who don’t.

John was just shy of 50 years old when he developed a persistent sore throat. He wasn’t a smoker, and he hadn’t been sick. But his voice was becoming more and more raspy and his throat hurt when he spoke. He worked as a consultant, and talking on the phone was literally his bread and butter. So eventually, reluctantly, he went to the doctor to find out what was wrong.

Over the next several months John visited an ear, nose and throat doctor several times. And each time he was told there was nothing wrong. The doctor looked in his throat and saw “nothing suspicious,” he said. But he offered no further explanation of what was going on. Meanwhile, John’s symptoms were getting worse.

After the third visit to the specialist, John’s wife, Alicia, demanded he go to a specialty clinic at a nearby medical center to get a second opinion. There, he learned that he had a large mass in his throat that was almost certainly cancer. A PET scan showed it had spread to his lymph nodes. What probably started as a small, localized lesion was now Stage III throat cancer. John would need to undergo intensive chemo and radiation therapy if he was going to survive.

John’s wife reacted as one might expect — with outrage and shock. “How could this have happened?” she wanted to know. “How could a so-called specialist have missed this?” She wanted to speak to a lawyer. She wanted to sue. But mostly, she wanted to know what was going to happen next.

As Alicia grilled the doctors about John’s prognosis, treatment protocol and possible side effects, John was unusually quiet. He just sat silently, almost as if he was in another world. And while this wasn’t an unusual reaction for someone who had just heard devastating news, what John did and said next certainly was. Much to the dismay of both his wife and the oncology team, he stood up and announced, “I don’t want to hear any of this. Just tell me what to do, and I’ll do it.” And with that, he walked out of the room.

Denial is not unusual when a person hears the news that they are seriously ill. In fact, it’s a very effective defense mechanism that can give someone who would otherwise be overwhelmed; a psychological “time out’ from a reality that’s too much take in all at once. But even when they are in significant denial, most people with cancer and other life-limiting illnesses have a strong need to know what to expect. Even as their emotional mind blocks out the enormity of the situation, they will almost always take an active role in their care.

For that reason, John’s doctors and the rest of the healthcare team assumed John would, sooner or later, come around. Eventually he would want to learn about the damaging effects of radiation and what he needed to do to minimize them. He would need to learn how to protect himself from infection when the chemotherapy knocked out his immune system for several weeks each month. He would need to “get with the program” if he was going to survive.

But John had other ideas.

Throughout the next six months, John maintained his stoic refusal to participate in discussions about his care. As promised, he did what he was told to do. He showed up for his radiation therapy every day, lying in the back of the family SUV while his wife drove the 40 miles to the medical center where he was receiving care. He sat through his infusions, and took his anti-nausea medicines as prescribed. He used the soaks and ointments the doctor’s prescribed for his badly burned skin.

But that was it. Whenever the doctors or social workers tried to engage him in discussions about his treatment, his answer was the same. “I don’t want to know.”

In fact, John seemed determined to be anything but sick. He continued his 3-mile daily walks with the family dog. He continued working. And, against the advice of his doctors, he attended baseball games and regularly got together with his friends, even when his blood counts were low.

A big man and a former football player, John seemed determined to face down his illness like he would face down an opponent on the playing field. His wife and friends worried that he was playing fast and loose with his health. But he quite obviously didn’t care what they thought. He was going to handle his illness the way he had handled everything else in his life — just making his way from Point A to Point B without being distracted by anyone or anything.

John’s strategy was frustrating for everyone around him. His wife barely spoke to him for days at a time. His children ignored him. His doctors, stymied by his apparent indifference, eventually circumvented him entirely and spoke only to his wife. Yet, all the while, John’s treatment was progressing remarkably well. In fact, he completed his six months of induction therapy without a single hospitalization….an almost unheard of feat.

And at his first follow up visit to look for residual tumor, a PET scan showed that there was nothing left. The tumor was gone, and the surgery that his doctors thought would be necessary wasn’t needed after all.

Today, John is three years “off therapy” and continues to do well. He still has some health challenges. But he is, thus far, cancer free. And as far as he’s concerned, that is exactly how things will stay.

“I beat it,” he says

And, at least in John’s mind, that is 100 percent true. Sure, the doctors did a lot, and he’s grateful for that. But what got him through his therapy, he believes, was his single-minded determination to carry on with his life as if the cancer didn’t exist. 

Who am I to say he was wrong?  

It’s not denial. I’m just selective about the reality I accept ~ Bill Watterson

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.