"Strategies for Coping
with Chronic Illness"
by Marie E .MacAllister, M.Ed., LMHC, LMFT
Identifying a Support System
One of the most important predictors of “how
we do” is by the support system network
we create. Identify as many people as you can
to develop your support system. It is important
to remember to include support from outside your
family and closest friends so that you do not
drain your most valuable resources -- people you
love and those that love you. There are a variety
of support groups in most communities as well
as through professional agencies. Don’t
forget to include any alternative therapeutic
resources that may appeal to you such as massage,
acupuncture, counseling, chiropractic, yoga, tai
chi, meditation, hypnosis and prayer.
Choose a Compassionate and Competent Doctor
Physicians know much more about medicine than
lay people, but they are not always good communications.
They may be authoritarian or even patronizing
in their demeanor, also known as “bedside
manner.” Patients should not have to accept
this kind of behavior. Everyone has a right to
be a partner in his/her own care and is entitled
to a clear explanation of the physician’s
findings and proposed treatment.
Alternative Treatment Options
Scleroderma is an extremely variable disease
in its manifestations and consequently treatment
needs to be individualized depending on the specific
problems of each patient. Different things work
for different people -- medications work for some,
but not for all. Some may benefit from massage,
gentle yoga, Tai chi, acupuncture, meeting with
a nutritionist, etc. in conjunction with their
physician’s treatment plan.
Stockpile Fun Distractions
Everyone needs to keep a list handy of the things
that make us happy. It is easier to compile a
list of our favorite activities when we are feeling
optimistic and well. Engaging in an activity can
temporarily interrupt the psychological and physiological
response in our brains. We can only process so
much input at once. When we are engrossed in a
beautiful movie, talking to a good friend on the
phone, listening to our favorite music or focusing
on doing some sort of creative endeavor such as
crafting, we can trick our pain receptors into
leaving us alone! Remember, laughter is good medicine
and improvements in spirit have an added impact
on our entire well-being.
Nurture Your Faith
Your greatest asset is in nurturing your spiritual
life, an often-neglected aspect of our daily lives.
Real attention to your spirit should be as much
a part of your treatment as your medication --
and it doesn’t cost you money. Take time
every day to be silent, to become aware of the
beauty of the natural world, and to discover your
essential self.
Learn to meditate or pray. Find a teacher who
is trained and respected, value and practice the
disciplines you learn, and find your own place
of growth, restoration and healing. If you have
a formal religion, cultivate and nourish it every
day, and do not keep it in a box for one day a
week; make it an integral part of your life. Nurture
your faith and it will nurture you.
The Paradox of Planning
This, for someone who has scleroderma, can pose
problems. You have to be very organized about
everything you do, or you can find yourself in
trouble. Planning and flexibility are the keys
to successful coping. Provide for your particular
needs when you leave home. Always carry spare
medication and something with which to take it.
Ensure that you have medicines for sudden problems
such as a headache, gastric reflux, etc.
Also, you may need to keep a “care”
package in your car that includes spare gloves,
extra socks or stockings, panty liners and/or
incontinence pads with an extra pair of panties
to give you added piece of mind.
Finally, the disappointment of failed plans must
be countered by alternatives, and you have to
cultivate the mental and emotional flexibility
to roll with it and develop the attitude of “Well,
it’s not the end of the world. There will
be another time.” Do not try to override
your symptoms and carry on regardless -- this
runs up an expensive physical account that you
will have to pay, and it isn’t worth it.
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