The following outline and suggested reading list was written and compiled by Vanessa Malcarne, PhD., Associate Professor SDSU/USCD Joint Doctoral Program in Clinical Psychology.

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Suggestions for Patients, Spouses, Children,
Health Professionals, and Organizations

An Outline for Emotional Health Patients Keep yourself as healthy as possible Seek specialists Follow instructions of health professionals Be an active participant in your own health care Ask questions Learn about your condition Provide complete information Observe reactions to medications, etc. Be assertive and cooperative Exercise Keep things as normal as possible Do the things you like to do Be problem-focused in your coping Count your blessings Don't avoid the problem Do avoid the "sick role" Ask for and use support Get professional assistance pace yourself Love yourself Find a friend you can confide in Spouses Listen Sympathize Count your blessings Don't avoid the topic Attend to your own special needs Seek social support Seek proffessional assistance Children (Adults should. . .) Talk with children Answer their questions Get them involved Seek outside support The significant adult Support groups Get them involved Seek proffessional experience Health Professionals Treat the scleroderma patient as a whole person Check for medication interactions and side effects that might affect mood, mental state, etc. Observe compliance Assess directly for emotional difficulties Suggest possible remedies Refer to appropriate services Always use the term "patient" or "person," never "victim." We are survivors who are living with our disease. Follow up emotional prescriptions Organizations Provide information and referrals (both physical and mental health) Assess for emotional distress Provide support Educate Hold regular meetings Organize support groups Keep in regular contact Home visits By telephone "Buddy System" e-mail Send cards

A Suggested Reading List of Mental Health Reference Books We Are Not Alone: Learning to Live with Chronic Illness by Sefra Kobrin Pitzle Thompson & Company, Inc., 1986 This is an excellent and very practical book written by a woman with SLE (lupus). It contains sections on coping with a diagnosis, talking with others about your illness, telling children about the illness, maintaining friendships, working with your health care team, the role of stress, depression, caregivers, sexuality, and adaptive living strategies. it also has a helpful bibliography, and is enhanced by the author's excellent drawings and poems. Be Sick Well: A Healthy Approach to Chronic Illness by Jeff Kane, M.D. New Harbinger Publications, Inc., 1991 This book fucuses on the role of attitudes, beliefs and choices in managing chronic illness. As the author states, "The idea of this book is for you to affect your illness through creative rather than passive participation." The book has as its underlying principle the importance of the mind-body connection. chapters focus on attitudes, relationships with other people, relationships with your doctor, social support, personal responsibility, and life transitions Living with Chronic Illness: Days of Patience and Passion by Cheri Register The Free Press (a division of Macmillan, Incl). 1987 The author of this excellent book has Caroli's disease, a congenital defect of the liver. The book is filled with the personal stories fo individuals with a variety of chronic illnesses, as well as many practical suggestions. chapters focus on silf-image, social support, maintaining roles and feeling useful, marriage, parenting, the patient role, and facing the future. Building a New Dream: A Family Guide to Coping with Chronic Illness & Disability by Janet R. Maurer, M.D., & Patricia D. Strasberg, Ed.D. Addison-Wesley Publishing Company, Inc., 1989 The special focus of this book is on the family,m although it also addresses individual adjustment. Section 1 focuses on working with health professionals in the community, and has chapters on learning about your illness, medication, consultations and second opinions, medical crises, and finding and using community resources. Section 2 discusses emotional stresses on the individual and faimily, including depression, developing new roles, personality changes, exhaustion, sexuality, and fears of death. Section 3 addresses the social consequences of illness, including changes at work and social isolation. Return to top of page Return to the Alamo Support Group Home Page

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