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COPING WITH THE DIAGNOSIS OF SDS


"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 he 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:

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Your comfort knowing and sharing your emotions and needs with others
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Your comfort level dealing with conflict, can you agree to disagree?
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The severity of the disease and
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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 Lego land.)

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 Shwachman Diamond Syndrome Foundation offers 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 this organization 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 24 years. Her Medical Information Form, a free downloadable way to keep a current list of your medications and emergency contact information is available at www.DrSteiner.com