GIFTS COME IN STRANGE FORMS. OUR TASK IS TO LOOK FOR THEM, RECOGNIZE THEM AND MAKE THEM OUR OWN.
 The disabled often say that those who are able-bodied
are just temporarily so, that most of us at some point
in our lives will suffer from some form of physical disability. Many of us believe in the old adage that states
that if you've got your health, you've got everything.
However, unexpected health changes can happen to any
of us. Even without the health we may have formerly
had, our lives can continue to be rich and full - although different.
Our lifespans have increased enormously over the past century. Most of us will live into our seventies, eighties or longer. However, the rise in longevity
that most of us can expect brings with it the increased
probability that we will suffer from one or more physical diseases during our lifetimes. The incidence of heart
disease, stroke and cancer is high in Western societies.
There is currently a diabetes epidemic that is associated
with obesity due to diet and lack of exercise. Adults are
more prone to developing diabetes, but an alarming
number of children now experience type II diabetes.
Many people develop immune-deficiency diseases such
as lupus. These diseases are often an outcome of
lifestyle choices. However, given the length of our
lifespans, there is a high probability that a health crisis
will come into our lives at some point.
A chronic illness is one that persists over time without
an easily definable beginning, middle and end (see
the examples on the back page). While the suffering that
accompanies a chronic illness can usually be alleviated
to some extent, the illness itself is usually not curable.
Our society, and the medical establishment in particular, feels more comfortable in dealing with acute illnesses - those diseases that can be treated and cured.
This is easy to understand when we consider that society tends to value achievement and action. We prefer
to deal with diseases that have a distinct cause, treat
them with medication or other interventions, and then
wait for the healing to begin. Chronic illnesses are not
amenable to such quick fixes. They are conditions that
we have to learn to live with - and lacking social support, the task of adapting to a chronic illness can be a
major challenge.
Living with a chronic illness brings many issues to
the fore. One of the primary experiences of those
with chronic illness is the trauma of realizing that their
lives have changed, often permanently. Not only do
they have to deal with the many changes that the illness will bring to their lifestyle and future plans, but
they have to deal with the trauma the illness presents
to their loved ones, friends and work associates. Other
people fail to understand the disease and suddenly treat
the sufferer in a different way - often through avoidance or superficial and uncomfortable support. The
person with a chronic illness is sometimes seen as
failing to contribute his or her fair share in a work
setting. The disruption to families can cause severe
conflict because it upsets the normal balance in family
dynamics.
Phases of Adjustment to Chronic Illness
Once patients are given the unwelcome news that they have a chronic physical illness, they must
begin their individual adaptations to this new stage of
their lives. Some struggle through each phase of their
adjustment, and, in a way, compound their suffering.
Others move through their adaptation more easily and
go on to find a sense of wisdom and integrity - a
fruitfulness of life experience that they may not have
known prior to becoming ill. It is helpful to think of
the following experiences as "phases" rather than
"stages" since some features of the adjustment journey
appear and reappear repeatedly for some people. These
phases do not necessarily follow a linear path.
Remember that the goal of a person's adjustment is
to create a life that is as full and rich, although
different, than he or she knew prior to becoming ill.
Although this may seem at times to be an impossible
goal, many have attained this objective. The person is
in control of the illness rather than the illness being in
control of the person.
The Crisis Phase
Learning that you have a new illness presents a
situation of crisis and chaos. The most immediate
response is to seek physical relief through a medical
intervention. Some people may seek a spiritual resolution to the crisis. Others may turn to alcohol or drugs,
unfortunately. Learning that the crisis will continue in a
chronic mode brings up feelings of anxiety about the
future and the impact the illness will have on you from
now on. You may have questions about your mortality
and the meaning of your life - and because you may
have never confronted these issues in the past, you may
feel anxious as these issues are brought up.
With the onset of an illness comes an urgency to
find out as quickly as possible what the illness
will mean to you. You may feel that you are being punished somehow or that you are to blame. You may have
negative thoughts that race through your mind all the
time and distract you from work and other activities in
your daily life. You may even feel that you are going
crazy. You might have physical symptoms associated
with your illness which frighten you, but, in addition,
you may feel confused and not know what to do next.
The goal of the crisis phase is to bring it under
control. Your physical crisis needs to be stabilized,
and for this you need the help of health care professionals, both for your physical and for your emotional
needs. You have a decreased ability to respond to others at this point, so your energy should go into focusing
inward on your physical needs. You also need to work
on containing your anxiety. Work on staying relaxed
and letting your energy go into healing. Turn your negative thinking into positive and calming thoughts. Trust
that things will get better - because they probably will.
This is not the end of the world, but only the beginning
of a new and different future with all sorts of exciting
possibilities. Learn to use the supportive help from
other people that is available to you. Find strategies for
dealing with the negative behavior that might come
from your friends and family.
The Stabilization Phase
Gradually the effects of the illness become apparent.
The acute phase of the illness will abate. There is
then an awareness on everyone's part that the illness is
a chronic one and the symptoms will become more
easily defined. You learn to live with the symptoms
day by day. Family members may retreat into themselves more because this has been an exhausting experience for everyone and they realize that life may never
be quite the same again. They need time to regroup.
The friends who may have been so available at first
may not have the same degree of contact any longer -
but this is not because they care less. Friends may simply not know how to react or their emotional resources
have been exhausted - and this might cause them to
avoid the situation. You may feel isolated at this point
and upset that the support you had before is no longer
available. You may want desperately to find a cure
because you don't want this to be a permanent condition.
The goal of the stabilization phase is to focus on
restructuring your life. You need to make a conscious decision to lead a very structured daily life in
which you are aware of what you need to do. You start
by paying attention to small tasks - getting up, getting
dressed, taking care of business. You force yourself to
get out of bed and to stop thinking negatively. You
learn more clearly what your physical abilities are and
make best use of them. It is preferable not to overexert
yourself at this point, but instead to test the limits of
what you are able to do. You reflect on where you have
been in life and what you need to do now in order to
live a more productive life. You learn who your true
friends are and where to find nurturing support. At this
point it may be helpful to learn to express your needs
assertively, but not demandingly, to those who are
there for you.
The Reconstruction Phase
This phase involves finally coming to terms with the
permanence of your illness. You begin to realize
what your abilities and limitations are. You understand
that you are no longer able to live the way you did
before the illness came upon you. During this phase
you may push yourself too hard because of your confidence that you are getting better. This may precipitate
a relapse and a feeling of discouragement. But you
pick yourself up once more and test the limits of your
abilities, perhaps again and again, until you finally
develop a sharp awareness of what you are able to do.
This phase brings about a heightened sense of self-control. While you may still depend on your doctor or
therapist, you become aware that it is your own decisions and actions that determine how successful you
will be in dealing with life's issues. You begin to
understand that your illness is not the focus of everything in your life. You had life problems before your
illness and you will have similar problems during your
illness -just like everybody else. You forgive those
who were not there for you when you needed them,
understanding that your illness was difficult for them
to accept. Your self-esteem heightens as you begin to
feel pride in the challenges you have faced and overcome.
The goal of the reconstruction phase is to build a new sense of meaning in your life and a renewed
sense of self. You become aware that there is hope
after all. You come to terms with how to care for your
physical needs, how far to push yourself, and what you
are able to do in the world. You know that you are
firmly in control of your life. You begin to develop a
meaningful way of explaining your illness and other
important questions about your life. You have accepted
the fact that your life has changed permanently, and
you help others - your partner, friends, family, work
associates - to come to this acceptance.
The Integration Phase
The final phase is the culmination of the struggle that
your chronic illness has brought into your life. You
understand what you have been through and how you
have grown from the experience. You know now that
you are a much wiser and more able person than you
were before your illness. You understand that you may
backslide, especially when the symptoms flare up, but
you have the tools now to get yourself back on course
again. You have integrated your pre-crisis self into
your current sense of self so that your life can be seen
as a whole - and from that you have a good sense of
what your life means.
Little did you know when the chronic illness began that you were presented with a gift - a gift which
could make your life enormously rich.
Some Examples of Chronic Illness (A Partial Listing)
- AIDS
- ALLERGIES TO ENVIRONMENTAL IRRITANTS AND
FOOD
- AMPUTATION
- AMYOTROPHIC LATERAL SCLEROSIS (ALS)
- ARTHRITIS (AND RHEUMATOID ARTHRITIS)
- ASTHMA
- CANCER
- CARPAL TUNNEL SYNDROME
- CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME (CFIDS)
- COLITIS
- CROHN'S DISEASE
- CYSTIC FIBROSIS
- DEGENERATIVE DISK DISEASE
- DEMYELINATING DISORDERS
- DIABETES
- EMPHYSEMA (COPD - CHRONIC OBSTRUCTIVE PULMONARY DISEASE)
- ENDOMETRIOSIS
- FIBROMYALGIA
- GULF WAR SYNDROME
- HEADACHES (AND MIGRAINE HEADACHES)
- HEARING LOSS
- HEART DISEASE
- HEPATITIS
- ILEITIS / COLITIS
- IRRITABLE BOWEL SYNDROME
- KIDNEY DISEASE
- LUNG DISORDERS
- LUPUS (SYSTEMIC LUPUS ERYTHEMATOSUS)
- LYME DISEASE
- MULTIPLE SCLEROSIS
- MUSCULAR DYSTROPHY
- PARKINSON'S DISEASE
- SCLERODOMA
- SPINAL CORD INJURY AND PAIN
- STROKE
- VISUAL DEFICIENCY OR BLINDNESS
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