Praise for Despite Lupus


"An interesting and useful guide that instructs lupus patients in the art of coping and helping themselves with a serious disorder."
Daniel J. Wallace, MD
Rheumatologist
Author, “The Lupus Book: A Guide for Patients and Their Families”


 “I've just discovered your book this weekend. What a great resource! I wish I had your
book when I was diagnosed four years ago and was feeling so completely lost, miserable, scared and angry. I so much identified with many parts of your book - like the part about managing to get breakfast on the table but too tired to eat. Your book is like a support group in print version!”
- J.S.

“In Despite Lupus, Sara Gorman tells it like it is to live well with a chronic illness. Finally, a book about Lupus that has practical, well documented information that anyone with a chronic illness can use to better their lives. Despite Lupus is an easy read, like talking with an understanding friend over a cup of coffee. What the author offers is both inspirational and educational. Of particular interest are her discussions of how to establish a working and trusting relationship with your doctor, how to deal with well-intentioned family and friends, how to set boundaries for yourself and making hard choices in order to live well. Despite Lupus sums up in ordinary language what most "lupites" have been missing in other books on the subject. It's a great read you'll want to share.”
--Barnes and Noble Nook customer review

“I have just finished reading your book and it has made a profound impact on me. I have had systemic lupus erythematosus for 6 years. I see a lot of my own personal experience in your writing. Some specific things that I really loved in "Despite Lupus" are: how to communicate with your doctors better, adding lifestyle factors into my tracking spreadsheet, how it's important to take a nap daily, how to let others help me with household tasks and such, and not beating myself up for not working or not doing everything on my To-Do list. Your book really spoke to me. I've been applying a lot of your suggestions and I do feel a lot better physically and mentally. My husband and mother also read your book and really enjoyed it. I find DespiteLupus.com to be very refreshing and empowering. I just wanted to reach out and let you know how you really have made an impact on me.”
--Alyssa A.

“An invaluable resource for those dealing, not just with lupus, but any chronic illness. Truly moving.”
Sam Rogers
Alliance for Lupus Research


 “I grabbed the book, [Despite Lupus], and almost could not put it down – a very good thing! I loved the idea of the tracking system you came up with, especially because it can be so useful and has been for you. I even promoted this idea (and your book) on my website. I don’t know how many people from Holland are willing to read a book in English, but I definitely think that this is one of the best books I’ve read about dealing with lupus. I like that it’s a combination of useful tips and your personal story, which makes it easy to read. And it had such simple but effective ideas that I had never thought about, like asking if you can check into you’re hotel room earlier, to rest.  I’ve never done that. I’d just tire myself even more by walking around and waiting. It really helped me that you talked about your nap time so freely. Ever since I started taking naps in the afternoon and knowing that I really need them I’m always a little embarrassed. I feel like a 32 year old in an 80 year old’s body! But when you wrote it down, for the first time I thought: this is good, this is really good for me and it is one of the very few things that always helps, even better than most medication I take.” 
--Janet B.

"Suffering through a chronic illness can be one of life's great challenges. Not only do you have to deal with the physical ailment, but you also have to work through the emotional struggle that goes along with it. Then there's the "what if's": "What if we never find a cure?" "What if I never get better?" "What if I'm sick the rest of my life?" And there's also the pressure it can put on relationships. Sara Gorman experienced all of these -- and was able to come through victoriously. Her story is inspiring, challenging, and, most importantly, full of hope for anyone diagnosed with Lupus or any chronic illness."
Steve Kroening
Freelance writer for Success magazine
Publisher of wisdomsedge.com


 “Your book and blog have completely changed the way I live and manage my illness and life. Thank you from the bottom of my heart.”
 – Loyal Despite Lupus reader

“I want to tell you what a profound effect your book has had on me. I really thought I had made the changes I needed to make in my life since I developed lupus six years ago. I reduced my work about fifty per cent and I rest an hour or two each day. But reading your book made me see that I still define normal as how much I can bear. That is not good enough!  I plan to make even more changes after reading your book.
I have read many other books by lupus writers, but yours really spoke to me.”
---Ann U.

“I absolutely love your book. I was diagnosed 4 months ago with SLE and your book is the best, most encouraging that I have read. Thank you for your honesty and solid, practical advice. You are my hero....”
--Marci O.
 
“Sara [Gorman] has written a gem of a book for lupus patients struggling with a new, frightening and unpredictable illness. Her advice is also applicable to all of us: lead a healthier, happier life. Discover the inner self and what is really important to you. Change is the cornerstone of life. Sometimes when we are feeling awful, we fear that "I will feel like this forever". That feeling is understandable but completely false. Things always change. Knowing that we will not feel the same the next day or the next week is comforting. Our ability to change and put our happiness and the happiness of our loved ones as the core of our existence makes us happier and healthier people with our chronic disease, whatever that disease may be. Sara's book helps us learn these and other truths to help us live with lupus and lead happier lives.”
Neil I. Stahl, MD
Rheumatologist


“Great Job!!  A very sensitive, compassionate, common sense approach to what can be a chronic, debilitating and perhaps fatal disease.  Your efforts are an inspiration to those dealing with the disease...your observations and suggestions in dealing with disease are helpful to not only those who suffer with Lupus but probably other diseases, as well.  The thing I noticed with many of the women that I have spoken with is that there is a certain sense of loneliness - perhaps that's true with anyone who suffers from a debilitating disease with a constant fatigue that hangs over you like a heavy wet canvas, the financial costs, the inability to participate in their jobs or families like they did previously, and the disappointment with the medical profession that seems to know so little about this "mysterious disease".  Your book speaks directly to these people by suggesting how to get organized and set about getting back into "living" life.  I think your book and your efforts [provide] a real sense of hope, that sense that "why maybe I could do this too." Quite Inspirational!!”
---Bob M.

“Lupus is a life-altering disease. What Sara [Gorman] learned is that she could let lupus alter her life or she could take charge and alter her own life to achieve better control of her lupus. During the struggle that she shares with her readers, she acquired the wisdom to accept that she would live the rest of her life with lupus. She also developed the courage to rebuild her life with lupus by taking charge of what she could control, and she shares that story. Those elements of wisdom, acceptance and taking control underlie many if not most of the stories that I hear of successfully living with lupus, and that is why I hope many will read Sara’s story and learn from its message of hope.“
Penny Fletcher, President and CEO
Lupus Foundation of America
District of Columbia, Maryland, Virginia


“Despite Lupus is one of three critical legs supporting my positive new outlook on life!  I’d read a lot of other books on lupus before yours.  In fact I discovered your blog before your book came out, and waited anxiously for it.  I sensed you had a different approach, and I was hungry for more.  There were lots of good lupus books already on my shelf--sympathetic ones, clinical ones, ones about just “living with” or “coping with” chronic illness.  But, compared to yours, they’re frankly all downers.  Your title says it all—despite lupus.  And that’s the way I wanted to live...without your motivating story and well-organized, concrete steps toward achieving wellness, I wouldn’t have had the courage. Reading you is like walking arm-in-arm with a good, understanding friend—one with an energizing, upbeat, can-do attitude! I still rely on the regular shot-in-the-arm I get from reading your blog.  And I still keep your book [where] I see it every day, and it serves as a reminder to ‘think positive’, and to be proud of the changes I’ve made.  It also keeps me humble, and grateful for your insights, especially for your ability to distill them into those wonderful, one-sitting sized chapters!  I am truly living wellDespite Lupus!” 
--Wendy B.

“Thanks for your beautiful book! Your words of inspiration helped me so much and I will forever be grateful to you! Your strength is so amazing to me.”
--Sharon C.

“Your work is truly inspirational.  This is the first book I have read in the ten years I have known about lupus, and certainly in the last year since being diagnosed that has given me hope, validation and a direction to turn (road map and spreadsheets included!)  Not to say that all of the “other” books (Wallace, Coping with Lupus, etc.) don’t have their place because knowledge about the disease is essential, but I have felt like an infant (ok maybe a toddler) thrown into a choppy sea, bobbing up and down with no idea where to turn or even how to keep my head above water at times. Your book is the next step for us.  There is a huge piece missing in western medicine and our minds, bodies and spirits are connected in an amazing way.  Anyway, even though our stories are different, I felt as if you had opened up my journal and read any of the pages from the last year.  I don’t think you are going to come across many critics only praise.”
---Jaime G.

“I just finished your excellent book. It’s nice to know that there is someone else over the age of five who takes naps! I’m a 54y/o Nurse Practitioner with SLE, so I deal with it both personally and professionally, though I’ve chosen to work part time now. I think that yours is the best book on lupus that I have ever read, and I’ve read plenty! Through trial and error, I have reached many of the same conclusions you discuss in your book. Thanks for giving me some new tips, and for making me feel less guilty about doing what I have to do to survive lupus. I’d still rather be in “Italy”, but “Holland” has its moments too.”
---Nancy K.

“I just finished your book last night.  I loved every minute of it.  I felt like I was reading many of my own thoughts from a few years back.  This is EXACTLY the kind of book that has been missing for Lupus and really, any chronic disease sufferer.  It really made me feel like we are not alone and there is hope even when things are very bleak.”
---Karen K.

“Having read the first couple chapters of your book this past week, it made me realize I didn't need to come home from work every night and try to get everything organized immediately.  You gave me permission to feel accomplished just emptying one box, or getting one load of laundry done, instead of the dozen boxes left and all of the wedding presents that are still scattered around the living room!!  I'm trying to slow down, but it's hard.  I know I'll get there.  I know what my priorities are, and I know where I want to be in the next couple years with slowing down and eliminating the non-essential pressures, but it’s definitely a step-by-step process.  I'm just so grateful I stumbled across you and your book as I was coming to these realizations.”
---Heidi A.

“I just finished the book last night…I think it is THE best book I've read about the emotional issues and concerns of lupus. Your book is the place to start after you get all of your fact finding out of the way (if you choose to do any). I think Despite Lupus can really assist the lupus patient who NEEDS a plan. Your book is direction, action, and support.  Thank you, Sara, for a very supportive and informative book…your story is a gift that is meant to be shared!”
---Kristin J.
“… I am drawn into your story and your writing is incredible. Early on in the book, it's clear that this book could be a life saver for anyone with a chronic illness. When I was at the beach, my sister-in-law, who has Rheumatoid Arthritis, read the first chapter and felt that she was reading about herself. Very powerful stuff. [She] also said that she wanted her husband to read it because it's so hard for her to explain what she goes through and thought your first chapter could really help him understand, not just the pain, but the emotion behind it.”
---Kathy H.

“Just finished Sara's book! It was so beautifully written!!!! She is so talented. Her book moved me to tears... I love her!”
---Sharon C.
“I love it!! I'm so impressed with everything about it - the writing, the layout, the design. Yours is quite personal too, it is very practical advice for anyone suffering through a chronic illness or other.”
 ---Deborah L.

“My friend [with lupus said] after reading your excerpt that you have mirrored her life EXACTLY.”
---Anonymous

“We're especially impressed with her ability to "get on with life" and not let her illness become the sole focus of her life.”
---Bob W.

“I really enjoyed reading Sara’s book, it was great and I learned so much about lupus.  She is an excellent writer and tells an incredibly inspiring story.  I am not surprised at the positive reviews she is receiving, she really deserves them.”
---Melissa K.

“Thank you for writing this book and giving hope for all who have a chronic illness.“
---Janice F.

“I’ve been reading your book and it is so compelling.  It’s hard to put down.  I just can’t believe all that you’ve gone through.  You are such a survivor and so brave.”
--Laura B.

“A breath of fresh air for lupus patients to have…especially those newly diagnosed. 
I truly believe you are one the best new voices out there.  There is so much old information on lupus in books and online and I relish your very good new voice with great tips and plain information.  Some of the older articles and books you find write about a doomsday for most of us, and it just ain't true!”
---Carolyn Glein,
My Lupus/Fibro Support Group, www.lupusfibro.com

“I have read the first couple chapters of the book, and it is remarkably applicable to so many things I have/am going through in my life.  While I am getting to learn about lupus, and your personal struggles, I am also taking a good bit of inspiration from it.”
---Mary C.

"I’ve been reading Despite Lupus. It’s well written, informative and upbeat. I’m struck by the universality of your story. Much—what you’ve faced, your tips for dealing with the day-to-day and doctors—applies to other illnesses and life challenges as well.”
---Beth Rubin, www.onthewritepage.com.

“I must tell you what a wonderful, inspiring book you have written – your complete honesty about every period and every aspect of your experience with lupus makes it a valuable guide to all of us in whatever we struggle with.”
---Nancy T.

“This is one of the best written and most important books I have ever read. It is clearly the best and the most important book I have read in a long time. I am humbled by your ability to so effortlessly and gracefully draw from your background and so eloquently and effectively make your point. After reading D.L., I feel like a close friend who has known you during your whole painful ordeal. This is a book about lupus, about loss and disability, and most of all about life and live it to the fullest.”
---Jack D.

“The book is really good and will immensely help thousands. Can’t wait until #2!”
---Angela C.

“Your book has been and will be incredibly helpful for me in my daily life. I am going to apply to my own self, your learned advice. Thank you for all of your wisdom and heroism.”
 ---Yanna L.







1 comment:

Anonymous said...

Dear Sara,
Your book has instantly changed my outlook on my life with Lupus. I was diagnosed 6 years ago at the age of 25, just 2 weeks before my wedding. Obviously there are many parallels in our lives. About 6 months ago, I began experiencing all kinds of symptoms that I had never had before and have been in a terrible depression since. It has been difficult to care for my 2 year old daughter and the drs appointments have been endless.
I just finished reading your book and had many "Ah ha" moments...I have been in denial and fighting the disease, not accepting it and making healthy changes to my lifestyle that might improve my condition. All throughout the book I saw myself...and several times I cried because until reading your book I felt so alone...as if no one could possibly understand the emotional toll this disease has been taking....I cannot thank you enough for writing this book. I know I will reread it several times to reaffirm all the positive suggestions you made and to help me remember that "a life with lupus is worth living". Laura