The Nature and Complexity of Hope

BY ARLENE HARDER, MA, MFT

Believing a Negative Diagnosis Makes It Harder to Recover

When Thomas van Gerven was given a diagnosis of pleural mesothelioma several years ago, he immediately went downhill. His wife, who has created a website dealing with this rare cancer caused by asbestos, reports that it was the manner in which the diagnosis was given that seemed to take away his joy of life and even his will to live. He accepted the fate handed him. Perhaps he hadn't heard Norman Cousins' admonition: "Don't deny the diagnosis; try to defy the verdict".

Unfortunately, upon hearing the words of the all-knowing doctor, Thomas apparently believed there was nothing to be done but accept his fate. It is true, of course, that perhaps nothing could have changed the course of the disease. After all, this is a very difficult cancer to treat and is frequently fatal. However, from that moment on he seemed to simply wait for the end, like a man on death row when his last appeal has been denied. And in accepting the sentence handed down, Thomas missed out on whatever joy life could have granted him for whatever time he had left.

Deidre van Gerven's report of her husband's reaction is an excellent illustration of what we all know intuitively about the role of hope and healing. We can feel deep in our bones and muscles a strength to carry on when we have hope that things will turn out for the best, if we just keep on keeping on. We also know the dread that pulls us down when we are sure we'll be defeated in trying to reach a goal. "What's the use?" we ask.

Scientists Begin to Explore Hope

Although hope has been a component of healing since time began, science has no language to describe it. Until recently there was no research into why this quality of the human spirit seems so entwined in the process of recovery. Perhaps this is because hope is not a pill the doctor can dispense. Your oncologist can't take an x-ray or read a blood test to see if you have very little hope or a great deal of it. There is not yet a statistically measurable mechanism by which we can know the degree to which hope is essential to healing.

Only in the past few years have researchers begun to examine the role hope (a function of the mind) plays in the course of a disease (a mis-function of the body). One of those who has been interested in the biochemical connections between the brain and the body is Candace Pert, formerly at the National Institutes of Health and now at Georgetown University, who describes this communication system as the "psychosomatic network." In her view, "emotions bridge the gap between mind and matter" and neuropeptides (found throughout the body) provide the information that underlies emotions.

In October 1995 a conference called "A Question of Hope." was held in England. Clive Wood, MSc., DPhil, a British psychologist with a long-term interest in mind-body connections reported on the conference in Advances, The Journal of Mind-Body Health in the Spring, 1996, edition. He writes:

Studies show, she [Candace Pert] explained, that the immune system's natural killer cells lose their function in individuals who are either helpless or hopeless. Conversely, she proposed, hope acts to boost immunity. The physiological and chemical mechanisms are in place to support this proposition, she asserted. The neuronal, hormonal, and immune systems of the body use all the same neuropeptides to communicate. The constant "cross talk" means that any one system readily influences the other. For example, the perception of pain depends on receptors at various levels of the nervous system, including the cortex. This molecular hierarchy allows us to decide how we will interpret a particular pain sensation and where we will set our pain threshold. We can choose to interpret a pain as being beneficial, a "good pain," a "pain of work" rather than a manifestation of disease. And in so doing we can protect ourselves from anxiety of despair. Such a process is at work, she believed, in the ability of hope to boost immunity.

Some Observations About Hope

We may not know as much about the role of hope as we will in the future, but here are some things we do know now.

Hope exists within a realistic context of uncertainty.

When we move ahead with plans for a vacation, we hope to enjoy ourselves, although we are clearly aware that potential obstacles like the weather and airline strikes are beyond our control. A person who has hope in the face of a life-threatening illness likewise moves forward with quiet confidence. For exampe, if the statistics for cancer patients indicate there is only a 10% probability of survival, they will approach life as though those figures can apply to them. Some are able to identify more strongly with the 10% and others will believe themselves part of the 90%.

Hope is a crucial antidote to fear.

The unknown that lies within a diagnosis of cancer and other serious illness.raises many fears and anxieties. Unlike the person who denies the reality of the diagnosis in an effort to avoid having to deal openly with frightening and unsettling emotions, a person with hope realizes that the future may not turn out as he or she would like and, nevertheless, chooses to believe the future is somehow benevolent. Such a person focuses on potential rather than limitation.

The "meaning" and "purpose" of our lives is intertwined with hope.

As Jeanne Achterberg of the Saybrook Institute in San Francisco has suggested, hope is the "enduring feeling that life makes sense." When life makes sense, it can be transcended in the sense that one can rise above it psychologically and not be emotionally defeated by it. It is possible that by taking such a position a person may actually live longer.

What is hoped for changes during the course of illness.

The National Coalition for Cancer Survivorship calls this "the changing mosaic of hope." When symptoms force us to see the doctor for an examination, as we wait for the results we hope there won't be anything seriously wrong. After a diagnosis of serious illness, generally the first thing for which we hope is a complete cure. Later, after treatment, we may hope for an extended period of remission before the disease recures or for control of symptoms for a long time. When the disease is in the advanced stage, there is still much to hope for: living to see a daughter graduate, energy to take a trip to some place we've always wanted to visit, a slow rate of deterioration, lessening of pain, having a peaceful, dignified death.

Action requires hope.

In order to plan for the future, to research the latest medical advances and to take part in decisions concerning treatment options, a person needs the ability to imagine that his or her efforts may be at least potentially successful.

Hope permeates all dimensions of a person's life.

People with hope have a greater sense of energy. Most of the time their mood is more likely to be up than down, despite obstacles. Because they feel more confident, they ask more questions. They are also more persistent and a busy, impatient doctor may not view them as "good" patients, while more passive, and less hopeful, patients may be.

There are many sources of hope.

For some, hope comes from a belief that God cares for them. For others, hope arises from a belief that research can discover a cure. Others may believe their doctor knows best and put themselves in the hands of their medical team.

Hope expects - and needs - reinforcement and external support.

While hope can exist in the absence of uniform agreement that a goal will be reached (in which case success may not need much hope because the probability of achieving it may almost be assured), maintaining hope in the face of total opposition is extremely difficult. That is why hopeful people are connected with other people and with the things they care about. They are thus able to draw strength from their families, their beliefs, their participation in what needs to be done toward reaching their goals, and in the medical procedure they choose. This is why it is important that family and friends understand their role in supporting the patient who wants to hope for the best.

© Copyright 1995, Revised 2002, Arlene Harder, MA, MFT

JUST HOW MUCH CONTROL DOES THE MIND REALLY HAVE?

The conclusions we can easily extrapolate from studies on the mind-body connection is that our thoughts, attitudes, beliefs, and emotions influence our state of general health and even our survival. Notice, however, that I used the word "influence" and not "control."

For example, it is one thing to refer to yourself as a "survivor" rather than a "victim" and talk about chemotherapy as "powerful medicine" rather than "toxic chemicals." It is another thing altogether to make no provisions for the future because you believe you can simply "will" your cancer away. It's also a great burden to be overwhelmed by guilt because you blame yourself for getting a disease in the first place "because you weren't positive enough." And it is even more disturbing if you are so sure your mind can control your body that you ignore prudent care.

Unfortunately, that was the position of a very dear friend of mine. She was absolutely committed to the idea that one could prevent cancer by not thinking about it. Once, when I asked casually if she had had a doctor check out a mole that seemed strangely shaped, she jumped on me and said, "You can believe that cancer is possible in other people, but don't put those thoughts into me. I won't entertain them." A few years later, she died of cancer, not from melanoma, but from lung cancer from earlier years of smoking that had metastasized to the bladder. The saddest part for me was seeing her spend the last months of her life in pain because she firmly believed bloody urine was her body's way of dealing with "long-suppressed sexual abuse," although she had no evidence that it had happened.

The best approach would seem to be that of Elaine Ferguson, M.D., author of Healing, Health and Transformation: New Frontiers in Medicine, when she says she encourages her patients "to find a happy medium between the you create your own reality mind-set and disease just falls from the sky belief." When you take responsibility for your health in a balanced way, then your emotional patterns and your choices of lifestyle, diet and work will affect your susceptibility to disease and will facilitate health.

The path to this balanced approach can actually be found in an unexpected consequence of having to deal with disease, which I refered to in the introduction to this section. When people have to focus on their disease and step back from the "distraction" of work and normal activities (though one could say that the "activity" of going to treatment is distraction enough), they've had to spend more time by and with themselves. Consequently, they've had the opportunity to reach inside and do some exploration of their lives.

Perhaps they have decided to use this crisis as a catalyst for growth and have made changes in their general outlook on life. Or they may have taken classes on imagery for hope, peace and healing and learned how to reduce stress — so they now experience greater calm and quiet, a genuine peace of mind they had previously thought unattainable. In being reminded of the uncertainty of life, they may have decided to live more fully with joy and passion and, in the process, have become as physically well as they possibly could.

© Copyright 1998, Revised 2002, Arlene Harder, MA, MFT