Praise for the Book
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!”
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.
--Alyssa A.
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.
--Janet B.
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.”
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.
--Marci O.
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.
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 well—Despite
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.
Comments
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