Books To Help You Learn About Lupus

Leslie Rott Health Guide
  • For me, knowledge is power.  When I first got sick, I started reading as much as I could about lupus and rheumatoid arthritis. 


    Lupus is a very confusing and unpredictable disease, and since I was totally caught off guard by the diagnosis, I decided to arm myself with knowledge so that I could better understand my health situation. 


    Here are some of the books about lupus that I recommend:

    Despite Lupus by Sara Gorman


    “Despite Lupus” is a great book by blogger and pillfold/ pill pouch creator Sara Gorman.  It is written from a patient’s perspective.  And while the book shares Sara’s own experiences with the disease, it also provides some very useful information and good examples of ways that you can organize your life in order to help you manage lupus.  Sara is a great lupus role model.

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    The First Year – Lupus: An Essential Guide for the Newly Diagnosed by Nancy C. Hanger and Andrea Schneebaum


    The “First Year” series is absolutely fabulous.  There is a book on RA, also.  The book is written in easy to understand language.  This is a great book for those newly diagnosed, as the book literally chronicles a year from the time you are diagnosed with the disease.  But even if you are not newly diagnosed, this book is a great reference to have. 


    How Can You NOT Laugh at a Time Like This by Carla Ulbrich


    “How Can You NOT Laugh at a Time Life This” is written by songwriter, and lupus patient, Carla Ulbrich.  This book is written more like blog posts than one continuous narrative.  While the book is funny, Carla talks a lot about ways to “cure” lupus from a natural perspective, and sometimes comes across as the only way to live life with lupus.  If you’re looking for a humorous take, you’ll like this book.  If you’re not looking to be told what to do, this book is not for you.   


    Lupus Q&A: Everything You Need to Know by Robert Lahita and Robert Phillips


    “Lupus Q & A” is not necessarily a book that you need to read cover-to-cover.  It is written in question and answer format, so you can reference it when you have a specific question about lupus.


    Unexpected Blessings by Roxanne Black


    “Unexpected Blessings” is by Roxanne Black, who is the Founder and Executive Director of Friends’ Health Connection.  This book is purely narrative, rather than an advice book, but it is well-written and a must read. 


    The Lupus Book by Daniel J. Wallace


    This book is very clinical.  It is a good reference if you are interested in the medical and physiological aspects of lupus.  For me, it is not a “go to” book, but it is a good thing to have, and I would recommend it to anyone who is trying to build up their lupus library. 




    There are several books I have about lupus that are on my “To Read” list, but that I have not gotten to yet.  They are:


    The Lupus Encyclopedia by Donald E. Thomas Jr.


    This book is about five inches thick, so it is not for the faint of heart or hand.  I have not had a chance to read it yet, but it seems to me like it will be a very comprehensive, if not exhaustive, guide to lupus.  Because of its girth, it is not exactly a book you can carry around with you and /or read on your commute.


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     Lights.  Camera.  Lupus. by Amanda Rupley


    This is a personal narrative about a woman with lupus who used to work in the entertainment industry.  Just based on the description, it sort of reminds me of Christine Schwab’s RA book Take Me Home from the Oscars


    empower: fight like a girl by Jennifer Quintenz, et al.  


    This is a collection of short stories written by women of TV who have united against lupus.  All proceeds from the book will be donated to the Lupus Foundation of America.  There’s nothing like a good, empowering read that also helps support the quest to find a cure for lupus.  




    This list is not exhaustive.  There are plenty of other lupus books out there.  These are simply the ones that I have on my shelf and/or have had the opportunity to read. 


    And to be honest, after a while, since some of the non-narrative, and more scientific books, are written by the same doctors – for example, Robert Lahita, Robert Phillips, and Daniel J. Wallace – they all sort of start to blend together.  So I find books by several of the authors mentioned here to be very similar and almost interchangeable.  If you do an Internet search for lupus books, you will see what I am talking about.        


    Many of the more personal narrative books are self-published or are only available electronically, and lack the rigor that the books I have included here have.  They just aren’t of the same caliber, but it doesn’t mean you shouldn’t read them if they sound interesting to you.  And of course, if you come across other books that I haven’t mentioned here, feel free to read those, as well.    

Published On: November 09, 2014