I found these books quite useful.

• The Lupus Book - A Guide for Patients and Their Families

• Sick and Tired of Feeling Sick and Tired - Living with Invisible Chronic Illness
  Being sick makes us vulnerable. When we are sick, we need understanding and tender loving care. Being ill with invisible chronic illness not only makes us particularly vulnerable, but also threatens the understanding and sympathy we need from family, friends, and doctors.

  We doubt ourselves--"Are all these symptoms real or am I going crazy?" Spouses and family members often regard us with suspicion and impatience. Physicians misdiagnose our physical ailments and are ready to attribute the complaints to a mental problem.

  For millions of people who suffer from invisible chronic illnesses, like lupus, this book offers hope and the means to cope with their ailments. It teaches them how to become aware of the attitude they have toward the illness and the way they talk to themselves about it and about themselves. It shows how, with awareness and practice, they can change their illness narrative, and how they can communicate with loved ones and doctors in a way that meets their needs.

  This book addresses issues facing the patient, family, doctors, employers, and fellow employees.

The books can be obtained from The Lupus Foundation of America, Inc. Store or your local LFA Chapter.

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