Key 10: Move Beyond Loss to Build a New Life
By Bruce Campbell
(Note: From the series Ten Keys to Successful Coping: 2005.)
One of the greatest challenges of chronic illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss. ME/CFS and fibromyalgia usually bring many serious losses.
You may be forced to give up your job. You may lose friends and feel abandoned by your family. You may experience loss of control over your body. And you may lose the future you had envisioned for yourself. The pervasiveness of loss presents a double challenge: to grieve the loss of the person you used to be and to create a new life.
Common Responses to Loss
I think it is inevitable that we go through several responses to loss, although which ones 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. Denial may manifest as leading the same life as before, by a frantic search for a cure or by trying special diets or treatments.
Denial serves a positive purpose, helping us to keep hope alive while we adjust to a new situation. Self-management strategies such as pacing and stress reduction can counteract the sense of helplessness with experiences of control.
Anger is another common response, an emotion that expresses our incredulity that life has changed for no apparent reason. Frustration can also be triggered by the experience of uncertainty. Self-management strategies can reduce uncertainty.
We may also feel guilt about our condition, blaming ourselves for becoming sick or being a burden on others. Guilt can be helpful if it motivates you to take better care of yourself, but it can be a trap if you see your illness as a personal failure. The truth is that we are vulnerable, with no control over our genes and subject to many forces we don't understand.
Depression is another emotional accompaniment to loss, a natural sadness. Depression reduces further stress or trauma by shutting down, allowing time to process what has already occurred. Usually it eases over time.
If you can move through those reactions, you may reach a state of acceptance. This complex reaction involves a combination of factors. On the one hand, it involves letting go of your past life and also of the future as you had envisioned it before becoming ill. But at the same time, acceptance means the willingness and even eagerness to build a new life.
This acceptance is not resignation but rather an acceptance of the reality of long-term illness and the need to lead a different kind of life. From this perspective, improvement is possible from the combination of acceptance of the illness and the discipline to live consistently within the limits it imposes.
Moving Through Grief
What can help you move through your time of grief?
Keep structure in your life: Having a routine provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss.
Avoid stress: Having to adjust to the many changes brought by illness is traumatic. In a situation in which you are already overloaded emotionally, it's best to avoid people and situations that add more stress.
Acknowledge loss: Some people report they found it useful to make a public declaration of loss. One person in our program wrote a letter to friends describing his illness and saying it was unlikely he would recover.
Use problem-solving: One way to move through grief is to use its emotions as the impetus to adopt problem-solving self-management strategies, such as those discussed in the previous section.
Creating a New Life
You didn't choose to be sick, but you can choose your response. By deciding how you are going to live with illness, you can make your goal living the best life possible under the circumstances. In doing so, you shift from a focus on what you have lost to a positive one: where you want to go and who you want to be.
Focus on The Future: The first key to building a new life is to shift focus from the past to the future, from what is no longer possible to what can still be achieved. However severe your illness, the losses you have experienced are not total.
Whatever your losses and limits, they still leave you with options and choices. By focusing on what remains under your control, you can maintain a positive spirit and increase the likelihood of improvement.
One person in our program 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."
Another student said acceptance wasn't giving up hope, or giving in to the illness. Rather it was freeing. "It allowed me to let go of my old life and goals and measures of happiness and adopt a whole new one."
Because of this, she has been able to accomplish more. "I have been ...so much more productive with the new dreams I am pursuing, the ones that are built around my disability and illness, than I was ever able to accomplish when I was trying to bend my old life around to accommodate my illness."
Develop 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 CFIDS recover fully or that fibromyalgia is considered chronic, such a recognition may produce a determination to lead "the best life possible."
Nourish Yourself: Between what you feel you have to do and the suffering imposed by illness, it is easy to let positive things slip out of your life. But we all deserve pleasure and enjoyment. If you have things to look forward to, you help yourself in an important way. The enjoyment of positive experiences reduces stress, replacing it with pleasure and building a positive sense of self-esteem.
There are many ways to nurture yourself, many forms of pleasure. It may be physical pleasure that comes from exercise, laughing, taking a bath, listening to or playing music or from intimacy.
Or the enjoyment and satisfaction from keeping a garden, painting a picture or completing a crafts project. Or the mental pleasure that comes from enjoying the beauty of nature or from reading a book. Or the spiritual satisfaction of meditation or prayer.
Cultivate a Sense of Gratitude: Focusing on the positive aspects of life may make sense as a practical response to chronic illness. Some patients even come to see their illness as a gift. Joan Buchman wrote in an article that keeping a gratitude journal helped her to re-orient her life and "to treasure what I have right now."
Create New Meaning: A powerful antidote to loss is to develop new interests. Having a project to commit to or artistic pursuits offer a sense of purpose. Helping others shifts you from preoccupation with your situation and your suffering, and gives a sense of meaning.
Many report finding new meaning in helping others, for example by participating in a support group, by lobbying for their illness or by offering help informally. Others have taken the opportunity to do art or crafts. Taking advantage of newly-available time, they start new hobbies or resume projects they had put aside during their earlier, busier lives.
Others see their illness as a challenge and find their sense of purpose in trying to understand illness and to expand their area of control. In all these different ways, patients created new paths to bringing meaning to life.
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 uncertainty but, even though we may not have control over the ultimate outcome of our illness, there is much we can do to improve our quality of life and to create new meaning in response to loss.
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