How Can I Help My Family Understand?

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How Can I Help My Family Understand?

• Being Sick in a Healthy World
• By Susan Milstrey Wells

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Susan Milstrey Wells

• Professional writer and editor for 27 years
• Author of A Delicate Balance Living Successfully
  with Chronic Illness
• Diagnosed with Sjogrens syndrome and
  fibromyalgia at age 33
• Wife, mother, daughter, sister, niece, aunt,
  great-aunt, and friend

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Our Relationships

• Chronic illness throws a monkey wrench into our
  relationships.
• Our family and friends want the old us back.
• They will never know what it feels like to have
  Sjogrens syndrome.
• We have to be creative in discussing our feelings
  and stating our needs.

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Our Spouses/Significant Others

• Our partners have the same feelings. We must
  grieve our losses.
• List the advantages/disadvantages of being sick.
• Develop a 10-point scale to explain how you feel.
• Try the speaker/listener technique developed by
  PREP.
• Have fun! Be spontaneous.

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Our Children

• Encourage your children to ask questions.
• Have young children draw or act out their
  feelings.
• Let your children take responsibility for
  themselves.
• Seek professional help if needed.
• Have fun! Be creative.

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Our Friends

• Be willing to let them go.
• Educate them about how your disease will affect
  the relationship.
• Adjust your expectations about the kind of
  support they can provide.
• Accept with gratitude the suggestions they make.

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Setting Limits

• Communicate your limits gently but firmly.
• Expect your family and friends not to like it
  when you assert yourself.
• Learn to say no.
• Remember you are a human being, not a human
  doing.
• Strike a delicate balance.

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Resources

• S. Wells. A Delicate Balance Living Successfully
  with Chronic Illness (Perseus Books, 2002).
• J. Kane. Be Sick Well A Healthy Approach to
  Chronic Illness (New Harbinger, 1991).
• L. Welsh and M. Betancourt. Chronic Illness and
  the Family A Guide for Living Every Day (Adams
  Media, 1996).
• www.adelicatebalance.com