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Article: Tool Kit for Families Living with Chronic
Medical Illness
Before Chronic Illness moved into your world, how did
you and your family deal with crisis? Typically one member goes into
Fix-It-Mode, and others take roles that feel most comfortable to them.
The ideal, yet least common approach to problems is honest problem solving
that includes talking about emotions and feelings. Families that have
worked through the more difficult aspects of having an ill member may
invite the help of a trained professional such as a psychotherapist,
pastoral counselor, priest or rabbi. Other families schedule regular
family meetings to help "clear the air" and make sure that
there are as few misunderstandings as possible. The more coping techniques
the better.
There are several common areas that are challenges
for families with chronic illness: Comfort, trust, and respect are basic
ingredients that strengthen connections. Other relationship issues that
must be negotiated are: dealing with emotions: denial, depression and
disappointments; planning, preparation, concerns and fears about the
future; teamwork, fighting for your rights, dealing with doctors and
medical systems; care and support for care-partner, sharing of information
about the illness when "protecting"
the ill person and others; what amounts of information are most helpful
and when; and reducing the burden on the children and family members.
At the core of any strong relationship
is good communication.
Communication is one of the biggest challenges
for families with chronic illness. The big question is how to find
ways to let your partner, family or friends know how you feel without
feeling like you are being a burden. Learning to do this takes time,
patience and compassion for yourself and others. (Yes, this goes both
ways - the ill person AND the care partners.) Healthy communication
depends on several factors:
- Your comfort knowing and sharing your emotions
and needs with others
- Your comfort level dealing with conflict, can
you agree to disagree?
- The severity of the disease and
- How well you worked as a team before the diagnosis.
If you can work out disagreements about where to eat
when you go out, you are likely to have fewer problems talking about
more difficult topics, such as changes in levels of independence. Being
able to talk openly about loss, changes in what each of you are able
to do, are all skills. These are skills that most people never learned.
Knowing how to discuss and make your needs known can make it easier to
cope with the ups and downs of chronic illness. These same tools will
enrich other aspects of your relationships.
What is most important in your relationships
and life in general?
Most of us want to feel close to those we love,
to be heard, valued and understood, to be able to communicate, work
as a team, be able to be friends, and handle the ups and downs that
come with illness. A tall order for any couple, and even taller when
illness is stirred into the mix. One exercise you might want to try
is having each person jot down their thoughts about what is most important
in their relationships and life in general and then read them aloud
to each other. You may be surprised what you learn about your priorities
and your loved ones. (Who knows, you might learn that your loved one
has a secret desire to go to Legoland.)
How you cope as a family depends on many
factors
Tension, unresolved anger, financial stresses
and being stuck in "survival mode" can aggravate or cause problems.
For example, when was the last time you planned something Fun? Is there
room for playfulness in your relationship?
When was the last time you spent time doing something just for relaxation
or pleasure? If your answer is: "Too long ago!" talk with
your family or close friends about scheduling a short get-away within
the next month. Or at least schedule a time to do something outside of
your normal routine that you can enjoy, like going out to see a movie
or making a picnic in the living room.
During times of crisis or exacerbations, your focus
may be on survival. This is normal. Nevertheless, it is important to
find ways to inject comfort and joy, even in small doses. These are times
when each Team Member needs an extra dose of compassion, for everyone,
especially themselves. The challenge is to balance the arts of Patience,
Creativity and Flexibility.
In short, making room for support from others
is a gift that helps everyone. One of the many gifts that illness foundations
such as the Arthritis Foundation, Diabetes Foundation, Cystic Fibrosis
Research Inc., Aplasic Anemia and MDS Foundation, Inc. and the Lyme
Disease Association, offer their members is the variety of ways they
connect members to each other throughout the year. The richness of
the support I have seen with members of these organizations is one
of the greatest gifts I have witnessed.
About the Author
Ann Steiner, Ph.D., M.F.T., CGP, is a licensed
marriage family therapist, professional speaker and author who specializes
in work with the medically ill and relationship issues. She is in private
practice 45 minutes from San Francisco, CA, is an Associate Clinical
Professor, Department of Psychiatry, University of California Medical
School, San Francisco, and has been leading psychotherapy groups for
26 years. You can download
a free copy of her Medical Information Form, a way to keep a current
list of your medications and emergency contact information.
This article is based on sections
of her forthcoming self-help book.
Please do not use this material without the author's written consent.
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