Topic Tuesday: Living Successfully with Chronic Illness

Today's topic is about "Living Successfully with Chronic Illness" written by Clinical Health Psychologist, Dr. Marc Oster. To learn more about Dr. Oster and his clinical interests click here.


Introduction

One of my objectives today is to make a case that there is a difference between "coping" with and "living" with a chronic illness.  I believe there is a qualitative difference in experience between someone who copes with, as compared to someone who lives with, a chronic or disabling condition.

Coping vs. Living

I would like to suggest to you that there are several phases people pass through as they move from coping with to living with chronic illness.  These are denial, acceptance, grief and mourning, and integration.

Denial

In general, denial is a process by which the patient does not recognize or accept the reality of their condition. Usually, we see this in the early stages of the condition, such as at the time of diagnosis. That's the obvious time. But we also see it at differing times during the patient's life. That is, at times when the patient experiences different milestones in their life. There are some patients who live indefinitely in denial of the reality of their situation.

Denial is not necessarily bad. A patient with a heart attack comes into the emergency room, those who are in denial that they are having, or have had, a heart attack more often survives the heart attack. Those who are not in denial of this reality, and who recognize or accept they are having a heart attack tend not to survive the acute phase of the episode. However, after the acute phase, patients who remain in denial have poorer long-term survival rates than patients who are in acceptance. So, denial in the crises may be good, but in the long term it can be bad. One of our roles is to help patients develop multiple methods to cope with their situations.

Acceptance

I had a dear friend, Mike, who died of prostate cancer in 1998. He was also a psychologist who worked with patients with cancer and other serious illnesses. One of his transformation concepts was to see his cancer as his teacher. He tried to look at his situation as a learning challenge, "What am I going to learn or get from this horrible experience?" Shortly before he died, I asked him if, for all his understanding of psychology, couldn’t he have made the same changes in his life and his work without having had cancer? Did he have to have cancer to make this transformation? He paused thoughtfully and said, "Yes, I needed to have cancer." Cancer became his tool for effecting change in himself and others. However, he also believed that those with a healing spirit could aid in transformations without first becoming ill. He thought of the spirit not in a religious sense, although that works as well. He also recognized that a person with a healing spirit could be anywhere. He told me of a janitor in his hospital who had a healing spirit; and he told me of doctors who didn't. This kind of care can come from a clergy person, a social worker, a nurse, or the elderly neighbor down the street. 

I was always amazed when I was with Mike because I understood him to be deathly ill and in constant pain, yet he looked so healthy and peaceful. Even when I was with him in the hospital moments before he died, he still looked great. I once asked him if he got depressed.  He told me his CT scans looked like a salt and pepper collage, with the black spots of cancer everywhere throughout his body. He said he was in constant pain every waking moment. "Of course," he said, "that's depressing!" But he was not clinically depressed. He told me that, at times, his situation was depressing, and it would overcome him, especially at 2:00 in the morning when he was awake and all alone. Mike's experience is a natural and understandable response to a serious medical condition or crisis.

As we move down the path from acceptance to integration, we need to first accept another piece of reality. As a cancer patient put it, "Having cancer is like having an uninvited guest in your home." For those who have not had the challenge of having a chronic illness that uninvited guest never leaves. It becomes, and remains, infiltrated in most aspects of the patient's life.  

Grief and Mourning

That second piece of reality has to do with the fourth response or phase, grief and the experience of loss. The experience of grief or loss may come and recur many times over the life of the patient with a chronic illness. Interestingly, upon diagnosis there might be a sense of relief. Relief that you are not crazy and there is a name for these strange symptoms.

Chronically ill patients who have suffered at the hands of dis-believers, including members of my profession, understand the importance and value of a diagnosis. However, with the offering of a diagnosis comes the experience of what the patient has already lost and what might be lost in the future. This is especially true while we are not as able to predict the future course of one's condition. Remember how fearful people can be of the unknown?

The experience of loss, regardless if it's perceived loss or actual loss, is felt by all those affected by the disease the patient, siblings, parents, relatives, friends, and even strangers. Grief over the loss may relate to actual loss or alteration of function, as well as the sense of what the future might have held, but now is uncertain at best. Any chronic illness forever alters the way in which one experiences the world. 

Integration

Integration is, in a way, one's personal resolution of their situation. It is not an end-point, but a process. As with all developmental experiences, the process is a continuing one. Integration means that the person will have found a place in their life, in their identity, for their illness. It has become a part of who they are, but not who they are. This is not to say that there will not be ups and downs, periods where this higher level of acceptance appears to have receded, maybe back into denial.

Like many therapists today, I tend toward short-term, problem-solving therapy. However, when working with a patient whose "problem" is ongoing, is forever, this is a quality of life concern; almost by definition this is not a short-term, problem-solving situation. Since it’s a quality of life, integration or developmental concern, the patient, or more accurately the client, needs someone who can and does listen, feel what he or she feels, participate in the experience, and really hear and appreciate the teller's story.  

Coping vs. Living: Conclusion

People living their life in a productive, psychologically healthy manner and dealing with illness at the same time face a remarkable challenge.  At different times during their journey, they will cope in different ways.  I offer a model of how one might navigate that journey. I am well aware that it is but one model, and not necessarily the best model for everyone. I certainly don't mean to imply that "mere coping" is anything less than outstanding. What's important is that persons with serious or chronic illnesses not live their lives as victims, but as the persons they were before becoming afflicted, as the persons they would like to be.