Key 10: Find New Meaning
(From the series Ten Keys to Successful Coping: 2001)
By Bruce Campbell
One of the greatest challenges of chronic illness is coming to terms with grief. While grief is usually associated with the death of a loved one, it can occur after any loss. And chronic illness brings with it many serious losses.
We may be forced to give up our job, may lose friends and feel abandoned by family, and may experience loss of control over our bodies and our lives. In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us.
Working through our grief can produce a double benefit. Not only are we resolving a psychological issue in chronic illness by facing our losses, we may be helping ourselves physically as well. Grieving is associated with the flare-up of symptoms, so resolving feelings of loss can help control symptoms.
It may produce even more dramatic effects as well. A recent study of HIV-positive men who had lost a close friend to AIDS found that those men who were able to find meaning in the loss had a significantly lower risk of dying of AIDS themselves in the following several years.
Common Grief Responses
I think it is inevitable that we go through several responses to loss, although which responses each of us experiences and the sequence in which we go through them may vary for each person. One reaction is denial, the refusal to believe that life may have changed permanently. This response is a way to keep hope alive while adjusting to a new situation.
Anger is another common response, an emotion that expresses our incredulity that life has changed for no apparent reason. We may also feel guilt about our condition, blaming ourselves for becoming sick or being a burden on others. Depression is another emotional accompaniment to loss, a natural sadness.
If we can move through those reactions, we may reach a state of acceptance. This complex reaction involves a combination of factors. On the one hand, there is the recognition that life has changed, perhaps permanently and certainly for an extended period of time. Acceptance means letting go of the past, of the person you used to be.
On the other hand, acceptance involves the willingness and even eagerness to build a new life. This attitude was summarized by former ME/CFS patient Dean Anderson, who said that for him the key to recovery was an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of his life.
How to Respond Positively to Loss
People in our groups have reported using a number of strategies to respond positively to the losses brought by chronic illness.
Acknowledge Loss: When someone dies, we have a ritual, a ceremony in which we publicly acknowledge the loss. Some people in our groups report they found it useful to have a ritual or to make a public declaration of the losses brought by the illness.
One woman reported that she had a funeral for her old self, saying "my former life has died and I needed to acknowledge that in a definite way."
One man wrote a Christmas letter to friends to explain why they hadn't heard from him. The letter said: "I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before."
He reports writing the letter helped him accept his limits and, paradoxically, increased his resolve to improve.
Reframe Experience to Focus on New Options: Some people have found it helpful to look at their illness in a way that draws their attention away from loss toward positive elements in their lives: what they have gained through being ill (for example: compassion), what remains, what they can do in the future.
One student said she prayed for acceptance of her new life and insight as to what it was. "With this I began to get excited about the new things coming to me as I gave up the old goals and activities."
Other students report that they focus on what they are still able to do, rather than on what they can no longer achieve. The limits we experience are not total. Whatever our losses, they still leave us with options and choices. By focusing on what remains under our control, we can maintain a positive spirit and increase the likelihood of improvement.
Determination: We may have received many blows, but the choice of response to our circumstances is ours. Some people report that having a determination to live a good life in spite of current limits has been helpful, both to their spirits and in practical ways as well.
Realistic Expectations: Acknowledgment of losses can lead to a more realistic assessment of chances for improvement. Sobering as it may be to realize that only some people with CFS recover fully or that fibromyalgia is considered chronic, such a recognition may produce a determination to lead "the best life possible."
Finding Lessons: Some people find it helpful to ask "what can I learn from this experience?" By focusing on this question, they find lessons in the illness. This is another way to bring something positive to the experience of loss.
New Interests and Helping Others: Two ways to create a sense of purpose that have been reported by people in our groups are to develop new interests and to help others. Students have reported developing new hobbies, taking advantage of newly-available time to start projects they had put aside during their earlier, busier lives.
Also, many report finding new meaning in helping others, through participating in a support group or offering help more informally.
A Sense of Gratitude: Focusing on the positive aspects of life may make sense as a practical response to chronic illness. In the words of one of our group members:
"I can make myself very unhappy by thinking about all that I've lost, about the activities I can no longer do, about the relationships and experiences and possessions I can't have, about the contributions I can't make, and about the help I can't give. But I don't want to be unhappy! So I work at letting all that go, not letting it hang around to make me blue."
In Summary
Chronic illness has profound effects, changing every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. Illness means living with a great amount of uncertainty, from the unpredictability of everyday life to wondering whether we will improve.
Even though we may not have control over the ultimate outcome of the illness, there is much we can do to improve our quality of life, if we accept responsibility for taking care of ourselves. It is possible to lead a meaningful life in spite of chronic illness.
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