I was diagnosed with lupus almost five years ago, however I’ve
experienced severe illness almost all of my life. From the time
I was a youngster, I battled pneumonia, asthma, bronchitis, colitis,
Grave’s disease…you name it, I had it! My sensitivities
to medications, especially antibiotics, made it difficult to treat
the infections I had, and I sometimes felt that our family doctor’s
office was a “home away from home.” I almost flunked
first grade because I missed so much school due to illness!
Despite these problems, however, I found ways to “have a
life.” I kept up with my junior high and high school classes,
turning my big double bed into a makeshift study hall, and graduated
on time. Afterwards, I earned a Bachelor’s degree from a prestigious
East Coast university and a Master’s degree from UCLA, studying
in France and Spain, and holding high-profile jobs. I won writing
awards, published magazine and newspaper articles…
Then, I was diagnosed with lupus.
My “life” skills – all of them and then some
– have been tested by the fire of coping with the ultimate
unpredictable, frustrating, debilitating, confounding illness. In
many ways, my activities have been derailed, put on hold or scrapped
because of the new constraints placed upon me due to sun sensitivity,
medications, fatigue and pain.
The goals I’d set for myself five short years ago have been
altered, too. Setting achievable benchmarks is doubly, triply, difficult
when lupus might flare up at any moment. Even in “mid-stream,”
goals sometimes have to be modified when new symptoms crop up.
Relationships are colored with the specter of lupus, too. Social
plans must be more fluid than ever before, always footnoted with
the possibility of having to be changed because of a flare or a
Basic life issues, such as death, faith, and aging, take on more
urgency. At a time when many friends and relatives are in their
“prime,” I often feel, once again, the kind of isolation
I did in my early life, when my “school” was the four
walls of my bedroom, or an oxygen tent in the hospital.
Has all of this been frustrating?
Have I been discouraged, at times, that my life might not be as
productive, as exciting as it has been?
Do I fear, sometimes, that I’ll be left behind by my healthier,
more hale peers?
Then, is there any silver lining here? Any hope? Any positive in
all this negative?
From the day I was diagnosed with lupus, I sought out as much
information as I could find. Books, web sites, support groups, even
Flannery O’Conner’s memoires…I devoured information.
Because lupus is so individual – each patient has a different
set of symptoms, treatment protocols, wants and needs – I
carefully sifted through what has worked for others. I made lists
of questions for my doctors and listened carefully to their answers.
And from all that data, I gleaned the things that would help me
cope, in fact thrive, in spite of the constraints and pain of living
This took much trial and some error. It also took complete determination
and something more.
It took faith that it was possible, even in the face of lupus, to
have a life.
A painful life? A difficult life?
But a good life? A peaceful life?
Clinging to this faith and determination, through prayer and study
and introspection, I started to look for ways to turn the diagnosis
of lupus into a positive.
Well, yes. As much as possible.
And from this searching, I found the basis for the, “Taking
Charge of Lupus: How to Manage the Disease and Make the Most of
Doors opened almost immediately. My agent confided that her sister-in-law
had died of lupus and she (my agent) was anxious to take on a lupus
project. My doctor, Daniel Wallace, M.D., was completely supportive,
offering to write the foreword and recommending a superb co-author,
David Hallegua, M.D. The right publisher came along. The writing
And the book was born!
A Book for All Patients
From the start, the book was not intended to be the “view
from the mountaintop,” but rather a practical, spirit-filled
support for all lupus patients and their loved ones who are struggling
to have productive, meaningful lives. Many patients, spouses of
patients, parents, and children stepped forward and offered to be
interviewed. Healthcare and other professionals, too, gave their
expertise in areas as widely varied as the emotional impact of lupus
and the essential role of prayer in coping with chronic illness.
Throughout, Dr. Hallegua offered his insight as a rheumatologist
concerned for the welfare of the whole patient, and I was able to
add my own experiences to the text.
With these insights and experience, the breadth of information
we included became full, covering medical, emotional, financial,
personal, relationship, faith, and productive areas of a life with
lupus. Underlying all these areas is the premise that there are
things lupus patients and their loved ones can do to take charge
of the presence of the disease in their lives.
In short, it is possible to have a life with lupus.
A good life.
A peaceful life.
A full life.
From Dream to Reality
“Taking Charge of Lupus” (New American Library/Penguin
Putnam, ISBN: 0-451-20699-1) is available in our online bookstore.
Dr. Hallegua and I will be promoting the book as much as possible
(watch newspapers and this newsletter for information on signings
and appearances!). Besides getting the information included in our
book into the hands of patients and their loved one, it is our hope
that awareness of lupus and the challenges it poses will also be
We need more information about the disease out in the public!
And, above all, we need a cure!
Your Walk with Lupus
Through faith, determination, and trial and error, I’ve
become very comfortable, even peaceful, about my life with lupus.
It’s not that I don’t detest the pain, unpredictability,
and symptoms of the disease. It’s not that I don’t experience
restrictions and frustrations each day. It’s not that I don’t
still get scared or angry.
But I have found ways to turn my disease into something positive,
if not for me, then I hope for others.
Am I some kind of “superwoman?”
Not at all!
I believe that everyone with lupus can achieve a satisfying quality
of life in spite of the disease.
In spite of pain.
In spite of the troubles and setbacks and anguish.
In my support groups, in the interviews I conducted with lupus patients,
I have met one of the most remarkable group of women and men. Each
has so much strength, so much intelligence and compassion!
Each person, in his or her own way, can make a tremendous difference
in his or her life, in the lupus community, in the world.
It starts with determination.
It starts with faith.
It starts with taking charge of lupus,
And comes full circle
To having a life.
© 2002 Maureen A. Pratt. All rights reserved.
CONTACT INFORMATION: Email: email@example.com. Website: www.maureenpratt.com
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