The Issues and Fears of Illness 

Part of being alive is accepting that things are changing all the time. Being fully alive requires responding flexibly and creatively to the changes. Life’s struggles usually come from reacting rigidly and trying to keep things exactly the same. Some of the changes are given a name — “illness” or “disease.” When long-standing or chronic, we are faced with one of the greatest challenges to our ability to accept change. The threat of physical vulnerability dramatically brings up two issues we all must deal with at some time in our lives: facing who we are when it is not possible to continue in our familiar roles and our own mortality.

Facing illness, regardless of whether it is chronic or temporary in nature, means finding a way to live one’s life so that our life is meaningful to us and to others in spite of the changes. Facing illness also means confronting fears of the unknown and discovering the inner strength to cope with all the “what ifs.”

The source of that inner strength comes ultimately from maintaining perspective, especially after tangling with all the worst fears — leaving one with the grateful feeling that whatever I can do has deep meaning and joy. That sense of appreciation is always there to draw upon, no matter what. Another name for it is faith.

When an illness touches us personally, we feel our own vulnerability as we discover the error in our assumption that things always happen to someone else. Within families and in other close relationships, people often make an unspoken and unconscious agreement with each other to guard against exposing their vulnerability. An illness insists that our common vulnerability be recognized. The integrity of the relationship then requires that the original agreement be replaced by a new one that promises mutual acceptance of each other’s susceptibilities as well as strengths.

Another change that comes with an illness is that the heart opens in a way it perhaps has never opened before to other people’s pain, especially when associated with an illness. This rich connection with others increases even further that perspective that leads one to be so thankful for all there is rather than grieve over what isn’t, used to be, or might have been. Ironically, there wells up a feeling of being more, rather than less, fortunate than those who are in good health, but whose hearts are closed and perspective narrow.

Responses to Illness

Coping with illness clusters around four kinds of responses. These responses are more likely to fluctuate and even be simultaneous than to follow any sequential or timely progression.

1. Give up, experiencing only loss — of certain particulars in life as well as of an enthusiasm for life in general.
2. Make a statement to the world by continuing on with all the same activities and meeting the same standards as before. Act as if nothing has changed, in spite of the added strain that means for the body at a time when it needs extra care.
3. Create a full-time job of curing all physical symptoms, investigating all that traditional and alternative healing methods have to offer, even if it means leaving little time and energy for other things — like focusing on the possible positive aspects that might grow out of a redirection in life or using the increased awareness and sensitivity to develop creative options for leading a full, rich life that doesn’t depend on a particular kind of body.
4. Accept the challenge of the present physical limitations and learn from the lessons it offers about attachment, letting go, control, and vulnerability. They are lessons we all face all the time; they are just more poignant when they come disguised as an illness. In that frame of mind, set priorities. Find the balance, being open to all the possible ways to heal the body as well as to all the present joys and yet undiscovered ways of living a meaningful life should some of the physical symptoms remain, in spite of the best efforts. This last response is what “healing” means in its fullest sense: healing the wound left by the loss of the invulnerable body as well as healing the disease or symptoms. We do have control over the first kind of healing; the second is sometimes less of a certainty or can be a long time in coming.

Responses From Other People

Making the necessary changes required because of illness — giving up familiar roles, reordering priorities, or generally changing patterns — is often as difficult, if not more difficult, for those around someone with an illness as it is for that person.

Frequently others need their loved ones, friends, or co-workers to quickly heal their bodies so they can go back to being exactly as they were before. Exploring new avenues allows a person with an illness to adapt to the circumstances. Others may find confusing and disturbing the adjustments that requires in their relationships with those individuals.

People can imply that not continuing on with usual activities is giving in to the illness, focusing too much on the body: “Perhaps a more positive attitude would help.” They do not realize that a positive attitude comes from discovering those things that are appropriate now, not from clinging to past pursuits, no matter how difficult and frustrating the effort. Perhaps having no idea what an on-going illness feels like, they overestimate what “sheer will” can accomplish. Those who have the energy of a healthy person don’t have to reorder priorities as one does who experiences the indescribable fatigue that accompanies illness, nor do they live with the uncertainties that an on-going illness brings — never being able to count on feeling well enough to easily do what has been planned.

It can create an added strain to find a loving way to respond to seemingly endless suggestions from people who may understand very little about the particular disease process occurring. Few people stop to think that theirs might be just one of the many suggestions offered that day, all of them loving, well-intentioned, and often convinced that theirs is the one right method. Indeed, one would have to be in perfect health to be able to undertake the healing program others have in mind.

Others also seem to get a little nervous if your path (as mine happens to be) is following your intuition, listening to the still small voice within. For it requires structuring some solitude, having discipline, and taking the responsibility for creating in your own environment and on a day-to-day basis the elements of a healing retreat (including a healthy diet, daily exercise, and your own personal spiritual practices). There are no outward signs of a program and no teacher, except ourselves.

There are many people, places and programs that can provide support and can help give us the strength to make the necessary changes, but we are the ones who ultimately are responsible for those changes. No one else can do it for us. No one else can crawl inside us; we know better than anyone else what we are feeling and therefore can judge best what is helpful.

When faced with a physical illness, the most effective therapist is the body, an ever-present provider of immediate feedback more powerful than words, reminding us that only by accepting things as they are will we come to see life as the gift that it is rather than as a struggle.

Connections between people soften the feelings of isolation and discouragement that can erode the will. The willingness to reach out and accept generous offers of help allows people to show their love and concern, just as we would want to do for a friend of ours in a similar situation. Indeed, finding increasing ways to support each other is our most meaningful role in life and on in which everyone can participate.

First Steps Toward Healing

The challenge in designing a healing program is to find a balance, remembering that the goal is to restore a healthy outlook (which requires acceptance, then creative change) as well as a healthy body. Be open to anything that might improve or cure the physical symptoms; at the same time, be selective. Since there is precious little time in life (true for all of us), why make the sense of self and satisfaction in life contingent on getting the body back to its previous state. Welcome the perhaps long-overdue task of examining whether present life style and day-to-day priorities are congruent with personal values and rhythms.

For example, I always loved my work and continued to love the idea of doing that work, but refused to acknowledge that it was no longer a positive experience because physical limitations were getting in the way. I simply didn’t feel well enough, enough of the time, to do it with ease or to meet my own standards. It left me feeling defeated and too drained to do anything else I enjoy.

When I could no longer continue, I gave up my job and entered what seems to be a necessary “transitional” stage, where previous roles and, to some extent, sources of self-esteem are not yet replaced by new ones.

The Transitional Stage

Changes are not linear; we rarely can go directly from A to B. This is the time to just “be” — adjusting activities and pace according to the body’s requirements rather than to other people’s agendas or expectations. It’s the time to explore which of the usual activities are still comfortable or to consider what adjustments might be made to continue some, if not all of them. It’s the time to make a priority of doing things that are nurturing and absorbing, that leave one feeling focused, whole, and productive. Perhaps these are on-going pursuits that may have been put aside, especially since health problems began. It might mean replacing past interests with new ones that are more appropriate now. There are so many ways to enjoy life without making the body an enemy.

Living in that transitional stage requires faith, but I found it also provided me with the opportunity to return to those things that have always been sources of my faith — gardening and music. By being totally able to lose myself in the process of caring for plants or making music, I wind up with the perspective that my own personal drama is just part of the natural rhythms of something much larger.

In the garden I recognized that I am rather like a plant that has been pruned. Now dormant, the plant looks bare and empty; but energy is circulating in new buds that will emerge with fuller and more balanced growth. And who knows in what directions it will branch out?

At the piano I appreciated that just as the plant needs to be pruned, one note has to be released before one can fully experience the sound of the next. Holding down the previous key while subsequent notes are played can create a beautiful harmony, but there are times when clarity is necessary; the pure sound of each progressive tone is a reminder that each small step one takes has its own reward.

Each of us can find our own path to building our source of inner strength; knowledge that is useful for a lifetime, illness or not.

A Time for Reassessment

Becoming better acquainted with the vitality of the person inside is what ultimately releases us from some long-standing, automatic, and unexamined attitudes and expectations. Self-imposed or externally-imposed, we come to accept certain criteria as positive and then judge ourselves according to our fit with the mold we’ve chosen. Some of the “growing pains” of an illness come from the effort it takes to extract ourselves from that mold. But, the rewards for the effort are an extended sense of self and increased flexibility, a more solid self-image that is less reliant on external standards.

People often perceive and judge themselves and others as “healthy” or “sick.” When first presented with a diagnosis, we find the news startling: “I’ve always been so healthy!” But by definition, every person is physically healthy until she/he develops symptoms or an illness. This awareness can act as a buffer to those feelings of defeat and inferiority that arrive with the symptoms and chip away at self-esteem. We are each an individual with a fully developed life and rich personal history before we get an illness. A diagnosis cannot change any of us suddenly into a different person.

One of the major frustrations that accompanies an illness is that the ability to be efficient and adhere to busy schedules is compromised. One can’t move as quickly or sustain energy for as long. The familiar “second wind” now may be replaced by a less dependable “second breeze.”

However, efficiency and schedules are only tools, means to an end. Sadly, in our culture they have become ends in themselves and can interfere with the quality of life, with our ability to connect with the moment, with a sense of inner peace.

Appreciating this fact makes it easier to feel comfortable about taking a slower pace and longer transition times. In the early stages of my own illness, I expressed my frustration with the statement, “I feel like a Type-A personality trapped in a Type-B body” — seeing my slow-moving body as the obstacle. After some time had passed, my attitudes and habits changed: “Perhaps I’ve been a Type-B body trapped in a Type-A personality.” Now my mind, with its strict agenda, appeared as the culprit.

An uncluttered mind that can embrace the pure and simple is, in fact, opening to the grace that many of us seek in places so remote from ourselves. Savoring the moment doesn’t mean indulging in only short-term pleasures at the expense of long-term commitments or enduring values. It means focusing our attention on where we are now.

A Panoramic Perspective

There is an invisible thread that weaves together the lives of all of us, regardless of physical condition, age, or life style. We share a common desire to touch that nameless source that gives our lives meaning. When we find ourselves in a crisis, it tests our courage and will to engage creatively with the unknown. We are asked to greet the challenges of life with the same intensity as we greet our passions. In the process, we discover the strength of our convictions — our integrity — and hopefully emerge declaring, “In spite of everything, I wouldn’t trade my life for anyone else’s, no matter how perfect the body living it.”

Author: Gayle Heiss (February, 1999)

Editor’s Note: Gayle Heiss has been leading weekly support groups for those with illnesses or physical problems and their families and friends since 1988. Gayle’s perspective also stems from her personal experience with Sjogren’s syndrome, an autoimmune connective tissue disease. The material in this article is condensed from Gayle’s booklet entitled “Living Well With Chronic Illness” (copyright 1988). An expansion of this material can be found in her book which can be ordered through your local bookstore or directly from the publisher: Finding the Way Home: A Compassionate Approach to Illness, QED Press, 800- 773-7782, ISBN 0-936609-35-4 , 1997