We at More Than Lupus are often asked what our favorite #lupus books are. Though each lupus patient is unique, and so our his or her reading preferences, we have compiled a list of our #TopFive favorites that we think are valuable resources for anyone's lupus library.
#1 The Lupus Encyclopedia
By: Dr. Donald E. Thomas, Jr., M.D., FACT, FACR
The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals—all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.
Reviews:
- "People who have lupus and their primary care doctors will find in this book all the information they need." George C. Tsokos, M.D., Harvard Medical School
- "I struck gold when I read this book, far and away the most lucid treatment of the disease I have ever read." - Amazon Customer
#2 Sick and Tired of Feeling Sick and Tired
By: Paul J. Donoghue, S.M., Ph.D.and Mary E. Siegel, Ph.D.
Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI (invisible chronic illnesses). Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs. The authors' understanding makes readers feel they have been heard for the first time.
Reviews:
- "An invaluable source of help and comfort to those who suffer from invisible chronic illness and to their caregivers and friends." -Katharina Dalton, M.D.
- "Just started reading & book has already changed my life!" - Amazon Customer
#3 When Lupus Throws You For A Loop: A Handbook For the Newly Diagnosed, Lupus Veterans, And For Those That Love Them
By: Donna Oram MSW, ACSW When Lupus Throws You for a Loop is a handbook for those newly diagnosed, lupus veterans, and those who love them. It takes you on a journey to acceptance acknowledging the difficulty of incorporating lupus into your life. You learn ways to communicate effectively, live with unpredictability, imperfection, stress, and loss of control. You learn to read your body’s signals, enhance your relationships regarding intimacy, and increase your positivity and resilience.
Reviews:
- "I just read your book and I cried, laughed and wished I had it many years ago." - Amazon Customer
- "I highly recommend this book for those living with Lupus, especially for newly diagnosed individuals and their loved ones." - Amazon Customer
#4 If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration and Hope for Women with Lupus, Scleroderma and Other Autoimmune Illnesses
By: LindaMcNamara and Karen Kemper
"Lupus and scleroderma are our shadows but they do not define us. We may have to wear the ugly dresses of chronic illness but we don't have to be the ugly dresses." -- Linda and Karen
If you are experiencing a long-term illness or disability, this book is for you -- as well as your family and friends. The authors share a collection of deeply personal stories and poetry to describe their journey from illness to health, well-being, and fruitful living. Their creative life management strategies provide a road map to help you:
overcome overwhelming feelings of loss, grief, anger, fear, and powerlessness;
navigate a healthcare system filled with individuals who can be patronizing or dismissive;
field well-intentioned but hurtful remarks such as, "But you look so good!"
walk the tightrope between seeking and accepting help and fiercely guarding your independence.
Reviews:
- "Having recently been diagnosed with lupus and scleroderma my mind and emotions have been racing· This book has offered me hope and inspiration that I can live with my "Ugly Dress" and accessorize it to make me feel better!" - Amazon Customer
#5 My Special Butterfly
"My Special Butterfly" is a book to help children understand a loved one's life with lupus in a way that is easy for them to follow and sensitive to their feelings. It tells the story of two young siblings, Olivia and Jack, and their thought process as they cope with their mommy's sudden lupus symptoms. Written in a way that children will connect with, it breaks down some of the most commonly asked questions about the disease, while focusing on the parent/child connection. Reviews:
- " Finally, someone writes a book that us lupus warriors are able to read to our families to explain to them what we live through daily. The illustrations of the characters look like me. I'm excited to share this book with my support group & their families." - Amazon Customer
-"Invaluable for families with lupus, especially families of color where there are so few characters in books that they can identify with." Dr. Lauren Kim, Rheumatologist
Compiled By:
Kelli Roseta
*description excerpts taken from Amazon.com
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.
June 2020