Learning to Live with Lupus: How Can I Cope and How Can My Family Help Me?

1. Learning to Live with Lupus:How Can I Cope and How Can My Family Help Me? Carol Podgorski, PhD, LMFT Tziporah Rosenberg, PhD, LMFT University of Rochester Department of Psychiatry – Institute for the Family October 27, 2012

2. About Families Coping with Chronic Illness • No one asks for this. • Chronic illness challenges “business as usual” for all of us. • Sometimes these challenges bring out the “worst”, but they can also bring out what we’re most proud of. • Often, how individuals with illness fare depends directly on how the family around them fares. • Families are resilient, and know way more about what they do best than any professional does.

3. Goals of Presentation Discuss how a diagnosis of lupus changes “life as we know it” and sometimes “life as we planned it” Describe how families can “make room” for lupus without having it take over their lives Discuss coping strategies for those with lupus and their families

4. Lupus

5. “The Lupus Bubble”

6. What happens while in The Bubble? Those with the diagnosis and their families often… • Experience shock and disbelief • Consider and grieve losses • Begin to think about how to make sense of the illness • Develop coping strategies • Grapple with how they will live with uncertainties • Have important conversations • Do some preparation for future care

7. Shock, disbelief, and guilt • How could this happen to me/us? • Why me? What did I do to deserve this? • Could I have taken better care of myself/my loved one? • Could the doctors be wrong? • What about a second opinion? • Time spent looking for alternative explanations/finding excuses for behaviors/symptoms

8. Grief • Loss of • Former self – physical self, emotional self, functional self • Previously held roles • Previous relationship qualities • Future as it was planned

9. Some Common Reactions • General feelings: • This must be trying for my family. • I am letting my wife/husband/children down. • My family babies me. • Around the time of the diagnosis: • There are things I am uncomfortable saying to my family. • I am scared and angry.

10. Making sense of the illness A process • For the person with the diagnosis • For family members • For the couple

11. “Will it get worse?” • Grappling with uncertainties • I wonder if this is moving the thing forward or whether it is one of those one-off things. • Finding ways to cope • You come up with all sorts of wrinkles [based on past experience] to make sure things get done efficiently and on time.

12. “I want to be me.” • Personal dilemmas • Wanting to understand more about lupus versus wanting to avoid thinking about it all together • Will I actively fight it or passively accept it? • Interpersonal struggles • Differences in perspectives between person with disease, other family members and professionals • Lupus has changed the way people treat me. • All behaviors are attributed to lupus

14. Escaping “The Bubble”

15. Tools to Help Burst The Bubble • HOPE • Central to the adjustment process • Restoring and maintaining a sense of normalcy • Developing cognitive, social, and behavioral strategies to improve confidence • Maintaining hope, helping others, and living within a supportive social network can positively influence adaptation to daily living and to the preservation of self-concept. • Positive outlook • Made sense of and accepted illness • Received understanding and support from family and friends • Were respected • Felt heard • Social Connections

16. Moving Forward with The Journey: Getting Past the Bubble

17. Coping Styles • Planful problem solving • Self-control • Confrontative • Distancing • Seeking social support • Positive appraisal • Accepting responsibility • Escape/Avoidance Folkman and Lazarus

18. Know What to Expect

19. Become aware of your lupus • Awareness of: • Your particular symptoms • How your illness affects you • What you can do to prevent flares • What to do if you do experience a flare • Any changes in symptoms or physical conditions that could suggest disease activity • The tension and stress that often accompany chronic illness • The best coping strategies and techniques to reduce that stress

20. Be Proactive and Enhance Problem Solving Skills

21. Important Things to Add in to Your Life • Take care of yourself emotionally • Learn to ask for help • Make important decisions early • Watch for treatable changes • Create a lupus-friendly environment • Emphasize joy • Create new rituals

22. Relationship Health

23. Tasks for Couples • Couples who receive a diagnosis of lupus may benefit from: • Creating a common way to think and talk about their situation and what it means • Finding ways of adjusting to the changes experienced in their roles and identities • Managing the fears and losses they face in the diagnosis phase

24. Agree on a common message • What do you want others to know? • Getting permission to tell • Understanding each other’s preference for secrecy or disclosure • Learn about illness experiences and how each other’s family of origin sought support or asked for help

25. Social connections are very important – Good family relationships and support of friends

26. SOCIAL CONNECTIONSare potent determinants of • EMOTIONAL HEALTH • Less depression • Less hopelessness • Subjective well being • Better memory, planning • Lower risk of dementia • PHYSICAL HEALTH • Self-reports of health status • Objective measures of • Diabetes • HTN • Liver disease • Arthritis • Emphysema Cacioppo, J. T., Hawkley, L. C., & Thisted, R. A. (2010); Golden, J., Conroy, R. M., Bruce, I., Denihan, A., Greene, E., Kirby, M. (2009); Hong, S. I., Hasche, L., & Bowland, S. (2009); Krause, N. (2007); Pinquart, M., & Sorensen, S. (2000); Thomas, P. A. (2010); Bassuk, S. S., Glass, T. A., & Berkman, L. F. (1999); Karp, A., Paillard-Borg, S., Wang, H. X., Silverstein, M., Winblad, B., & Fratiglioni, L. (2006); Wang, H. X., Karp, A., Winblad, B., & Fratiglioni, L. (2002); Wilson, R. S., Krueger, K. R., Arnold, S. E., Schneider, J. A., Kelly, J. F., Barnes, L. L. (2007) Moak, Z. B., & Agrawal, A. (2010); Tomaka, J., Thompson, S., & Palacios, R. (2006).

27. What is Family Function? Family dysfunction Family conflict • Communication • Problem solving • Role performance • Family conflict increases: • Caregiver burden • Poorer family functioning • Caregiver depression, anxiety and anger • Poorer health outcomes

28. Preventing Family Conflict • Understand the wishes and needs of the person with lupus. • Be mindful that a lupus diagnosis affects everyone in the family. • Family members may have different life cycle considerations • There are many different coping styles and personalities in families • Sometimes family roles and responsibilities need to shift. • Be open to discussing how others can help • Learn to identify and share feelings • Learn to ask for help • Recognize that everyone is usually motivated by love and concern.

29. Learn to talk to your doctor about lupus

30. Enhance patient-physician interactions • Be prepared • Bring a family member or friend with you • Keep a diary of symptoms, problems, side effects and more • Be honest • Stick to the facts. • Don’t ever be embarrassed or uncomfortable about discussing • sensitive subjects • Ask questions about everything -- a medical term, cost of • treatment etc. • Give your own opinion on treatments • Take notes at your visits so you don`t forget instructions • Make sure your doctor knows of any over the counter medications you use • Lupus Alliance of America

31. The same…only different • Illness is a stressor for all of us, and especially when the exposure to stress is constant/”chronic”, we have to find ways to cope that don’t burn us out. • While our families are each unique in our circumstances, our skills, our histories, our relationships, there are some themes that cut across differences when it comes to handling the demands of a chronic illness like lupus. • These common emotional reactions sometimes feel contradictory, and may change from moment to moment, depending on what the illness calls on us to do. • Even as these themes may be “universal”, what we each need when we’re in the middle of them needs to be tailored, special.