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Any
chronic condition has the potential to take on a ‘life form of its'
own’ and individuals may feel a sense of powerlessness over their life
due to the ravages of the illness. It is imperative that the person
with illness recognizes that there are ways that he/she can regain a
sense of mastery over aspects of their life, in spite of the medical
condition that they are facing every day. With guidance, you can
learn ways to attend to the areas of life that still remain under
your conscious control. Learning ways to take charge of that which
you still have power over creates a sense of well-being that
transcends the grasp that the illness has had on you, your attitudes
and your approach to life.
Coping With a Chronic
Illness
There
are a broad range of chronic medical conditions. Some may be
potentially life-threatening, such as cancer, heart disease and
AIDS. Some chronic conditions are associated with the aging process
and though understood may still have a steady progression.
Conditions, like diabetes or high blood pressure are somewhat
predictable and manageable. Other health conditions that are less
understood, intermittent in their symptomatology and therefore
unpredictable are frustrating to the individual and to the medical
professional. It is with this latter group of illnesses, such as
Chronic Fatigue Syndrome and Fibromyalgia that the bulk of this
section on illness is aimed at addressing. With any chronic
illness, the individual is going to have significant psychological
reactions and be challenged to cope in ways that he/she may not have
the skills for. Psychologists can facilitate the process of
learning to cope with the various stages that a person experiences
throughout their illness. It is expected that there will be
significant challenges and setbacks along the way; therefore,
adaptation to a disease process is an ongoing journey.
Psychological
Impact of Chronic Illness
The way in which an individual is affected
psychologically is dependent on many factors. Some of these include
the nature of the illness itself, its severity and the treatment
involved. Other factors impacting an individuals’ ability to cope
have to do with their personality, circumstances of their life prior
to the illness and the level of social support that they have access
to. Regardless of these factors, all individuals must go through
various stages as they attempt to adjust and cope to the realities
of their chronic condition.
Initially there may be shock, denial and disbelief
that something is even wrong. The persistence of symptoms however
makes it difficult to ignore. Resistance to the real changes
occurring in the body cause a person to push themselves beyond what
their body can do, creating more exhaustion and ‘crashing’ while
they attempt to recover. Feelings of anxiety and fear occur in
response to the uncertainty of the future; and the possible loss of
goals unrealized contributes to sadness, depression and grief.
Further losses come in the form of having to relinquish roles and
responsibilities which lead to feelings of inadequacy and guilt.
One becomes sensitive as well to the potential burden that loved
ones now may feel, leading to more shame and possibly resentment and
anger.
Abandoning a sense of prior independence takes a toll
on one’s self-esteem, self-worth and self-image; a real identity
crisis ensues. As a result of increased feelings of dependency
there are emotions around the loss of status, power and control that
overwhelm a once healthy, capable and functioning individual.
There can be stigma associated with disability and as a result of
others’ reactions, including friends and family; there can be an
increase in withdrawal and isolation. The individual becomes
affected by feelings of abandonment, rejection and loneliness.
Compounding all of these possible reactions is the blame and
self-punishment imposed on the self for having their condition in
the first place. In addition to trying to manage the actual illness
on a daily basis, the profound nature of these emotional
consequences not surprisingly can lead to feelings of helplessness
and hopelessness. Fortunately there are ways that a person can
learn to navigate through all the complex reactions and adjustments
that they are facing as they go through the various stages of the
illness.
Support and
the Impact on Family & Friends
During the various stages and cycles of the illness,
family and friends are profoundly affected and may end up needing
their own support. They too are trying to adjust to the multitude
of changes that have occurred as their loved one became ill. For
some there are significant changes in roles and responsibilities
which can overwhelm the well person and contribute to feelings of
powerless to the one chronically ill. For many, lifestyle and
social functioning is dramatically altered; sometimes creating
sadness and perhaps anger over the loss of the person before they
became ill. Intimacy issues and learning how to maintain
friendships and companionship can be challenging.
There is
often fear and anxiety over the chronicity of the changes and the
drain perhaps to resources; emotional, physical and financial.
There may be resentment and the caregiver may feel alone and
isolated as most of the attention goes to meeting the needs of the
chronically ill person. The ability of family and friends to
support is affected by their ability to deal with ongoing stress,
their flexibility in the face of uncertainty and being able to
effectively communicate. It is as important for primary caregivers
to seek the support and guidance they need to assist them in their
own journey with the chronically ill.
Coping
Strategies for Transcending Illness
At some point in
the cycle of your illness you come to recognize the ‘chronicity’ of
your symptoms and the realization that you must learn to cope long
term with the effects and changes to your self and life overall. A
significant objective in the management of your condition is to
regain a sense of personal control over your self and your life.
The following areas can assist in the achievement of this goal.
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Educate yourself:
Information is power and educating yourself during this time is an
important way to take charge of your situation. This is a time to
take full responsibility for the management of your health and it
means knowing your choices and making decisions for your care.
-
Environmental changes:
Learning ways to organize your home and work setting to make the
tasks of daily living easier is a practical way to feel in charge.
-
Access resources:
Review financial issues, home care, insurance and disability
claims, support groups, educational seminars, books, audiotapes.
-
Symptom management:
Follow through on recommended treatment, investigate additional or
alternate forms of treatment, be informed about medication, and
decrease overuse of narcotics and self-medicating (alcohol or
substance abuse), proper nutrition, recommended exercise program.
-
Body Awareness:
Become familiar with activities that ‘trigger’ symptoms, learn the
art of ‘pacing’; that is, discovering what your body tells you
about where its limits are. Be willing to gently challenge your
perceived limitations because there is also a tendency to
‘protect’ in an attempt to avoid flare-ups. You will need to
regularly ‘test’ your own limits to assess where you are at.
-
Communication:
It is important for self-management to have the skills that
effectively communicate your needs to others. These people may be
health care professionals, insurance representatives, friends,
family and significant others.
-
Re-examine roles and responsibilities:
The need to be able to ‘assert’ oneself is necessary in order to
successfully redefine boundaries and limits on what you need and
what you can do.
-
Value clarification:
Evaluate what is important to you in this moment and feel good
about honoring that. Recognize where and how you use your
‘energy’; emotionally and physically and decide if how you are
doing so supports your well-being.
-
Goal-setting: Providing
structure to your day through some basic planning and setting
realistic goals contributes to a greater sense of purpose.
-
Rebuild confidence: As
you find ways to empower yourself ensure that you acknowledge and
validate all your successes; big and small. Reinforce the ways
that you are still “able” versus emphasizing how you feel “dis-abled”.
-
Challenge Negative Thought Patterns and Reframing:
“We are what we think”. This is perhaps one of the most important
coping skills to learn in order to successfully manage and
transcend the impact of chronic illness. Changing your
perspective has profound consequences to your emotional
well-being, which in turn affects your body in a positive way as
well.
-
Attention-Control:
This is a self-management technique that teaches you to
deliberately shift attention from one thing to another. It
includes distraction away from your symptoms by engaging in
alternate and positive activities. Learning to distract yourself
‘internally’ is also a successful way to lead your mind away from
pain and other symptoms
-
Identify
Stressors and Relax:
Stress worsens
the experience of symptoms and leads to increased tension which
negatively impacts the body. Learning deep breathing methods,
full body relaxation, meditation, yoga, tai chi and other ways to
relax the body are good for your overall state of well-being.
-
Discover new interests:
Finding new
activities through which you can experience pleasure is important
to successful coping. Find ways to make yourself laugh; since
humor is healing.
-
Identify
and Resolve Emotions: Emotions
from the past and present may wash over you daily. Getting
professional assistance to work through these complex reactions is
imperative to your state of wellness. Since the mind and body are
interconnected, internalizing emotions has a negative impact on
the body. We do not come into this life prepared to handle the
challenges of an illness and yet we are extremely harsh on
ourselves for the emotions that we naturally feel as a result. It
is important to learn to let go of blame, self-punishment and have
compassion for yourself and your body.
- Letting
Go: The
capacity to truly transcend your illness and empower you toward a
feeling of inner peace requires the difficult task of
‘letting-go’. Recognizing where your attitudes and behaviors may
be fostering dependence, resistance and self-sabotage is important
to being able to let go. Acceptance that one must relinquish the
old definition of self and life prior to becoming ill allows an
opening to redefine and create new meaning and purpose beyond your
illness.
Integrate Illness Experience into a new Meaningful Life
You have the opportunity to gain considerable insight
into yourself and your life as you move through and cope with the
emotional and physical aspects of your illness. Having a chronic
condition means that you will have setbacks and move back and forth
into times where you cope better than at other times. Part of the
goal of coping well, is to regain compassion and respect for your
self and your life as you redefine, reexamine and reconstruct aspect
of the ‘new you’. You will still want to hold on to aspects of your
‘pre-illness’ self that you still value, however, will accept that
certain attachments to the past in fact hold you back rather than
move you forward. Clinging to old expectations of your self expends
energy that is much better spent on living in the moment perhaps
engaged in positive activities or simply spending time with people
that you care about.
Transcending your illness means that you acknowledge
that you are more than your body and its symptoms; life can have
purpose and meaning beyond the limitations that your body has
imposed. There are many aspects of life and living well that do not
involve the body. Exploring these areas expands your learning and
creativity which in turn helps to reinforce self-esteem and
self-respect. Successful integration requires a level of acceptance
of the realities of your illness. It does not require the adoption
of a passive ‘sick role’; that is, relinquishing responsibility or
giving in. Our beliefs reinforce our reality. Rather than seeing
yourself free of illness, challenge yourself to see that there is
more to your life than your dis-ease. Perhaps it is time to revisit
and have gratitude for those things and people that you may have
unintentionally taken for granted. Living in the moment allows one
to pay attention to simple joys and find value out of everyday
experiences.
The nature of a chronic illness is that it is a
process. Arriving at a place of strength psychologically doesn’t
mean that it is easy to stay there. You will constantly be
challenged to revisit and incorporate the coping strategies that
assist you in working through particular emotions and issues as they
appear. You will find that you ‘recycle’ many of the emotions that
you thought you had previously dealt with. The constant adjustments
required and the grieving of losses along the way is part of a
journey requiring ongoing attention. Having strategies to cope
however, allow you to return to the place again where you are
committed to living your best life, in spite of your limitations.
Transcending your illness means that it doesn’t define you; rather,
you decide how you want to create a life of meaning and purpose that
brings you pride in spite of being ill. It is empowering to create
goals and be self-directed when most aspects of an illness attempt
to disempower you. Establishing a sense of purpose can inspire and
move you forward with passion even while enduring the challenges of
an illness. Just think of Christopher Reeve or people that you know
who seem to paradoxically be living a more meaningful life since
having a diagnosis of an illness.
It takes tremendous courage,
persistence, perseverance, determination and strength to maintain a
fighting spirit in the face of so many challenges. It is important
to acknowledge yourself for these qualities. It is equally
important to have compassion and forgiveness toward yourself when
you hit a rough spot. Your personal worth and value extends beyond
what you may feel you can handle during times of incredible
struggle. In fact, the quality of your life is comprised of not
only what you ‘do’ and how you ‘feel’, but strongly by what you
‘think’. Recognize that healthy living depends on your attitude and
choices whether you have an illness or not. Creating an intention
to live as meaningful and satisfying a life as you possibly can
awards you a personal sense of self-efficacy and a belief in
yourself that you can get through another day.
Spirituality & Chronic
Illness
No one can ever be prepared for the tremendous
impact, disruption and despair that are brought about by a chronic
medical condition. For some people, it creates an inner struggle
around beliefs and faith. You may feel abandoned, angry and
confused as you try to search for answers to the “why” questions.
For others, turning to spiritual practice, meditation or prayer can
offer solace and considerable comfort during times when nothing else
makes sense. Some believe that there is a larger purpose and
meaning behind the illness and look for ways to find gratitude for
their life still. Whatever your beliefs may be it is helpful to
know that you are not alone in the challenges that you face.
Please contact
SoulSpring Counselling for information on how you can receive
guidance and support as you move through the various stages of your
health challenge toward a place of inner peace and meaning.
Click here to contact SoulSpring Counselling on how to enhance your
skills in living a purposeful life while managing the challenges of
illness.
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