Ten Keys to Successful Coping
Key 10: Move Beyond Loss to Build a New Life
By Bruce Campbell
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. CFIDS 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. For
strategies to help you with depression, see the previous
article.
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 student 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 posted
on this site that 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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