1. How Can I Help My Family Understand? Being Sick in a Healthy World By Susan Milstrey Wells

2. Susan Milstrey Wells  Professional writer and editor for 27 years  Author of A Delicate Balance: Living Successfully with Chronic Illness  Diagnosed with Sjogren’s syndrome and fibromyalgia at age 33  Wife, mother, daughter, sister, niece, aunt, great-aunt, and friend

3. 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 Sjogren’s syndrome.  We have to be creative in discussing our feelings and stating our needs.

4. 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.

5. 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.

6. 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.

7. 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.

8. 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 www.adelicatebalance.com