Meeting the Challenges of
Long-Term Illness
Grieving Your
Losses
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. And chronic illness
brings with it many serious losses. We may be forced to give up our job,
which provides income, companionship and challenge. We may lose friends
and feel abandoned by family. We may have to give up cherished
activities and groups. We may experience loss of control over our
bodies. And we may have to let go of some of our goals, losing the
future we had envisioned for ourselves. 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:
bringing meaning to life when so much has been taken away. Dealing
successfully with loss is crucial to dealing positively with chronic
illness. Working through our grief can produce a double benefit. Not
only are we resolving a key psychological issue in chronic illness, 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.
We
will look at this topic from two perspectives. This article discusses
how to work through loss. The next one will describe how to move beyond
loss to build a new life.
Responses to Loss
There are several
common responses to the losses brought by chronic illness. Sometimes
these reactions are discussed in terms of the well-known stages of death
described by Elizabeth Kubler-Ross in her book On Death and Dying.
For most people, however, there is not a neat, orderly progression.
Rather grief is a more individual process in which a person may
experience some but not necessarily all of the emotions described below.
Also, a person may experience some emotions more than once, or may feel
two or more at the same time.
Denial and
Disbelief
Receiving a
diagnosis of CFIDS or fibromyalgia may produce relief, because finally
you have a name for your suffering, but this initial reaction may be
accompanied by shock and disbelief. Getting a diagnosis of CFIDS or
fibromyalgia means being told you have a condition for which there are
no consistently effective medical treatments and no cure. Common
reactions include ignoring the disease by continuing to lead a busy life
or seeking a cure by going from doctor to doctor or by trying special
diets or treatments.
Denial
can be an adaptive response, allowing you to adjust gradually to all
that is different and to the uncertainty brought by the illness. Denial
is a way to keep hope alive during a time in which your life has been
turned upside down. But if you get stuck in this reaction, you won’t
be able to face your situation realistically. The repeated unsuccessful
attempts at a “miracle cure” may reinforce a sense of helplessness
and despair. Self-management strategies such as pacing and stress
reduction can counteract the sense of helplessness with experiences of
control.
Anger
Frustration, rage,
and envy are common reactions to loss and the experience of having your
life changed by something over which you had no control. They are honest
emotions that honor the recognition that life changed for no apparent
reason, becoming much more difficult. Frustration can also be triggered
by the experience of uncertainty. Symptoms wax and wane, making it
difficult to plan.
Self-management
strategies can reduce uncertainty. Taking regular rests, for example,
can help make your life more predictable by reducing the swings between
high symptoms and times of remission. Resting ahead of an event can make
it more likely you can attend. A health log can enable you see patterns
in your symptoms, showing you what makes your symptoms worse.
Feeling
angry is normal and can have positive effects if it motivates you to
work to feel better or moves you to channel your energy to help others.
But anger can be destructive if it is expressed in a way that drives
away people who want to help and on whom you may be dependent.
Blowing-up, expressing anger by shouting or by being cruel is hurtful.
Guilt
Some people blame
themselves becoming sick. You might tell yourself things like: “If
only I had taken better care of myself” or “If only I managed stress
better” or “If only I had paid better attention to my body.” The
truth is that no one yet knows the cause of either CFIDS or
fibromyalgia. It is probable that factors over which we have no control,
such as genetically susceptibility, will be found to play a major role
in both.
It
may be helpful to remember that we live in a society that sometimes
blames people for becoming sick. There is a common idea that if we eat
right, exercise and have the right thoughts, we will avoid illness. But
the truth is that we are vulnerable, with no control over our genes and
subject to many forces we don’t understand.
Guilt can be helpful
if it motivates you to take better care of yourself from here forward,
but it can be a trap if you see your illness as a personal failure.
Whatever happened before, you can exercise control only from here on
through such strategies as getting adequate rest, relaxing to reduce
stress, developing supportive relationships, accepting a reasonable load
of responsibilities but not more, keeping pleasure in your life, and
developing new interests.
Sadness and
Depression
Depression and
feelings of sadness are common in chronic illness, natural responses to
loss, uncertainty, limits and the discomfort of ongoing symptoms.
Depression is a response which lessens further stress or trauma by
shutting down, allowing time to process what has already occurred.
Depression may also be triggered by a long period of suffering before
receiving a diagnosis. Years of inappropriate or insensitive treatment
may engender a sense of hopelessness.
Usually
depression eases over time. If it lasts, you will have a sense of
despair and inertia. Several strategies may be helpful. First, using
self-help techniques such as those discussed elsewhere in the first
article on emotions
can help you move forward, refuting the belief that all is hopeless.
Second, you can work to change your thinking so that it is more
realistic and helpful. See the discussion of Cognitive Behavioral
Therapy (CBT) in the second article on emotions.
Third, since a considerable number of CFIDS and fibromyalgia
patients suffer from clinical depression, you may be helped by
professional guidance and medications.
Acceptance
This complex
reaction involves a combination of factors. On the one hand, it involves
recognizing that life has changed, perhaps permanently and certainly for
an extended period of time. Acceptance means 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 involves the willingness and even
eagerness to build a new life. I call this combination acceptance
with a fighting spirit.
This
two-fold attitude was summarized by former CFIDS patient Dean Anderson,
whose account of recovery is posted
elsewhere on this site. He says that the key to his recovery was a
certain kind of acceptance. He describes it not as resignation, but
rather “an acceptance of the reality of the illness and of the need to
lead a different kind of life, perhaps for the rest of my life.”
Fibromyalgia
patient Joan Buchman describes a similar approach in another article
posted here. She writes that while she did not choose to have
fibromyalgia, she did have a choice about how to live with it. She
reduced her symptoms through making lifestyle changes and developed a
fulfilling life by “focusing on my many blessings.”
Both
Dean and Joan came to an acceptance of the reality of their illness and
the need to lead a different kind of life. They found the key to
improvement lay in the combination of accepting the illness and
disciplining themselves to live with hope within the limits it
imposed.
Strategies for
Moving Through Grief
Illness brings loss,
which takes some time to process. What can help you move through your
time of grief?
