Overheads from Florida '03
Sjogren's Syndrome Foundation - January 25, 2003 - Sarasota, Florida
Title of talk: How Can I Help My Family Understand?
View the slides in PowerPoint format.
Introduction: Being Sick in a Healthy World
Overhead #1: 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
Overhead #2: 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.
Overhead #3: 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.
Overhead #4: 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.
Overhead #5: 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.
Overhead #6: 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.
View the slides from the Ohio '99 conference in html format.
