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About
the Letter: Originally
authored in 1997, the Letter has been distributed around the world
countless times and has reached nearly a million readers. It has
been translated into other languages; shared extensively in patient
communities; read to the crowd on the steps of the Lincoln Memorial in
Washington, DC at the first annual EndoWalk for Awareness; been given
to families, physicians, caregivers, spouses, friends and government
officials; and it is currently used by patient advocacy organizations
in the US, Europe and Australia to facilitate their efforts at raising
awareness and validating those who live with the disease. The Letter is
provided herein to give you a better understanding of what it is like
to live with a chronic, painful illness that is under-treated,
under-diagnosed and widely misunderstood – and perhaps, even, ignored -
by society at large. More importantly,
this letter is for all the Endosisters around the world who hold their
heads high everyday, in spite of Endometriosis.
Dear Parents,
Partners, Friends, Families, Employers & Doctors: We have spent
the last years of our lives apologizing for being stricken with a
disease we did nothing to contract, and we can do it no longer. We are
asking - again - for your understanding. We are not responsible
for failing to live up to your expectations, the way you think we
should. What you seem to fail to realize, is that you are just as much
a part of the cycle of the disease as we are, because you are not
getting the whole of our person and our capabilities. We are not
"lazy," we are not "whiners," we do not make the pain up "in our heads." We have
Endometriosis. We know that
we look healthy on the outside, and that is sometimes harder to accept
than if we exhibited the disease in our every day appearance. What you
don't see is what our organs look like on the inside, and you don't see
what living with it has done to our emotional well-being. When we call
in sick, it's not because we need a mental health day or to "go
shopping." It's because we can't get out of bed from the pain. Do
you think we like letting our careers suffer? Would it be easier
for you to understand if we said we had cancer and looked the part? When we get
emotional and cry at the seemingly silliest things, or get angry for
even less reason, it's not because we are "flaky women." It is
because we are taking drug therapies to stall this incurable disease,
or perhaps it's because we have come close to the breaking point after
dealing day in and day out with the pain for which there is no defined
cause or absolute cure. When we can't
have intimate relations with our partners, it is not because we don't
love you or want to. It's because we can't. It hurts too much. And we
aren't feeling real attractive right now. When you, our
parents, can't understand that since you are healthy, we should be too,
but aren't - try harder. We don't understand it either. We need your
support more than anyone's. When we can't
go to family gatherings or accept social invitations, it's not because
we don't wish to share in your fun. It's because we feel like pariahs.
You are all having such a nice time with your children and loved ones -
we can't remember the last time we had a nice time, or the last time we
were pain-free. We can't have a nice time with our children (some
of us); because we were robbed of that chance before we were old enough
to even care about having them in the first place. Do you think we need
to be reminded of our battle with infertility by watching you and your
babies? Or for those of us who were blessed enough to be able to
conceive, do you think we want a constant reminder that we never feel
well enough to spend enough quality time with our children, or worse -
that we might have passed this disease down through our genetics onto
our daughters? When you
married us, you didn't know that we meant the "in sickness and in
health" part literally, did you? We bet you were counting on at least a
50/50 split of that combination, rather than the 90/10 ratio you got.
You are our caretakers, the ones who drive us to and from our doctors,
countless surgeries, and emergency room visits. You are the ones who
hear us crying in the night and see us break down during the day. You
are the ones who wait on us hand and foot after surgery. You are the
ones that go for months on end without sharing our beds with us. You
are the ones that deal with our infertility right along with us. We
strike out at you when we are hurting and angry, and you take it in
stride. You are perhaps bigger victims of Endometriosis than even we
are. You are appreciated more than words can ever say. Don't give up
on us now. As a medical
professional, we are coming to you for help. We are asking you to do
the job you were trained to do and ease our suffering. We do not need
you to tell us that we are imagining the excruciating pain we live in,
or worse yet, that it is "normal for a woman to hurt." Keep up with
your research, find the cause of this disease and better yet, find a
cure! Stop taking the easy way out and drugging us into oblivion so
that we will quiet down. We want answers and it is your job to
provide them. You were the ones that took the oath to heal - why do we
have to try to do your job? Do you understand what it means when we
tell you that we literally can no longer live a normal life and care
for ourselves and our families? We're not drug seeking; we're
answer seeking. Are you not up
to the challenge to find the answers? To those we
have called friends all our lives, why have you deserted us when we
needed your compassion and understanding the most? Do you see the
selfishness of your actions? When we can't get together with you, it's
not because we don't like you or we don't care - it's because we are no
longer capable of enjoying healthy leisure time. Our minds are consumed
with our next doctor's appointments, what surgery we are going to have
next, and why we feel so sick all the time. This is not about you - it
never was and it never will be. It is about us. Please try to remember
what the term "friend" means. Try to walk
one minute in our shoes. We have fought a war for the better part of
our years. We are faced daily with physical pains we can't understand
and mental anguish we can barely cope with some days. We face a society
daily that doesn't even know the word "Endometriosis," much less the
ramifications of living with the disease. We have to face uneducated
and unsympathetic doctors who tell us "it's all in your head", and
"have a hysterectomy, it will cure you", or "get pregnant, it will cure
you", when we know that it won't and have been dealing with infertility
for the last however many years. Can't you see that? We have to
fight to get medical treatment that insurance companies don't deem
necessary, or worse, we deplete our savings because aren't able to
obtain proper care unless we pay for it ourselves and travel thousands
of miles to the rare specialists that are few and far between. We
have to have surgery after surgery and subject ourselves to horrific
medications just to be able to get out of bed in the morning. This is
not a conscious choice we made, it was the hand we were dealt. It is
enough of a war we wage just to try and live with some modicum of
normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis
is a disease that affects all of us. Take the time
to learn about it and understand. If you can do that, and you can join
us in the battle for a cure, then we can one day return to our old
selves and live a normal, pain-free life. We can have healthy
relationships with our loved ones. We can stop taking the painkillers
that numb our suffering to a degree and become part of the living again. Please don't
judge us and declare that we are all the things we are not - until you
have lived with this disease ravaging your mind and body, you cannot
speak on it. Whatever
doesn't kill us makes us stronger, someone once said. While
Endometriosis may not kill our physical body, it tries like hell to
kill our spirit. It tries to kill every hope and dream we ever had of
doing the things that make us happy. All of us are out here searching
for a cure to put an end to the disease...and we are holding our heads
high in spite of Endometriosis and fighting it every single day.
We are asking you to take part in that battle and work with us beating
it. Wouldn't it be nice to have back the daughter, wife, friend
or loved one you once knew? Think about it. ~The
Sentiments of Millions of Endometriosis Survivors Around the World~ GET INFORMED: Despite the vast
number of women and adolescents in the world suffering from the
reproductive and immunological disease Endometriosis, the illness
remains under-diagnosed, under-researched, under-funded and
under-treated. There is still, as yet, no definitive cure. Stigmatized
largely as simply “painful periods,” Endometriosis is a puzzling and
insidious disease characterized by the migration of aberrant tissue
resembling - but histologically different
from – normal endometrium, which erroneously implants itself outside
the uterus in other areas of the body. The illness, for which there is
no absolute cure, can only be diagnosed for certain surgically. Researchers still don’t even know the real
cause of Endometriosis; the outdated myth of “backflow menstruation”
(Sampson’s Theory) has been repeatedly disproven and is as outdated as
the old wives’ tales that menopause, pregnancy or hysterectomy are
cures (they aren’t). Current research
indicates genetics, immune system dysfunction and/or exposure to
environmental toxicants as contributing factors to disease development. A painful
reproductive and immunological disease afflicting over 7 million women
and teens in the United States alone (twice the number of Alzheimer's
patients and seven times those with Parkinson's), with an estimated 70
million more worldwide, Endometriosis is a leading cause of female
infertility, chronic pelvic pain and gynecologic surgery, and accounts
for nearly half of the 600,000 hysterectomies performed annually. It is more prevalent than breast cancer, yet
continues to be treated as an insignificant, obscure ailment. Worse, Endometriosis is linked to other
distressing autoimmune, endocrine, chronic pain, and fatigue disorders
including thyroid disease, interstitial cystitis, rheumatoid arthritis,
Lupus, migraines, fibromyalgia, allergies and even asthma, to name a
few; additionally, recent data also shows that Endometriosis patients
are at an elevated risk of certain cancers and malignant shifts in the
disease itself. More than just
“killer cramps” from which “all women suffer,” symptoms include painful
periods (which are not normal!), pelvic pain at any point in a
woman or girl's cycle, infertility, pain with sexual activity,
gastrointestinal and urinary tract difficulties and more. The disease
can implant anywhere in the body; in areas like lungs, diaphragm, in
some cases, even the brain, and beyond. The economic
impact is staggering: indeed, researchers estimate that menstrual pain
is responsible for nearly 600 million lost work hours and a staggering
$2 billion in lost productivity each year. Yet,
even today, women and girls from around the world continue to suffer in
silence with a disease that can be potentially devastating to every
aspect of their lives. Endometriosis
knows no racial or socioeconomic barriers, and affects women of all
ages from adolescence to post-menopause. Despite hallmark symptoms, the
average delay in diagnosis remains an astounding 9 years, and a patient
will seek the counsel of 5+ physicians before her pain is adequately
addressed and diagnosed. Once diagnosed, it is not unusual for her to
undergo repeat surgeries and embark on many different medical therapies
in an attempt to treat symptoms. Many such therapies carry
significantly negative and long-lasting side effects, and *none* offer
long-term relief. Studies have
also shown that Endometriosis has an even bigger impact on younger
patients: in fact, in one study, in patients under 22 years of age, the
rate of disease recurrence was double that of older women (35% vs.
19%). That study also revealed that Endometriosis behaves differently
in younger women, and may in fact be a different form of disease
altogether. Other researchers feel that
symptomatic, adolescent-onset Endometriosis is most often a lifelong
problem that will progress to severe fibrotic disease. Yet surgery,
requisite to accurately diagnose and effectively treat the disease, is
often injudiciously withheld from younger patients, preventing
necessary early intervention, diagnosis and treatment needed to
effectively manage the disease. Though
Endometriosis is one of the most prevalent illnesses affecting society,
awareness is sorely lacking and research continues to remain
significantly under-funded. For instance, in fiscal year 2000, the
National Institutes of Health planned to spend $16.5 billion on
research. Of that funding, only $2.7 million was earmarked for
Endometriosis: approximately 40 cents per patient. This is in stark
contrast to other illnesses like Alzheimer's and Lupus, which received
approximately $105 and $30 per patient, respectively. Worse, the focus
of research continues to be aimed largely at the infertility aspect of
the disease, and treatment efforts continue to be drug directed rather
than towards curative efforts; a trend that must shift to include all
research directives, not just those addressing fertility and drug
companies, if we are to see real progress in the coming years. In short,
Endometriosis is a disease that affects EVERYONE. The
time has come to promote significant advances in Endometriosis
awareness, thereby facilitating subsequent progress in research and
treatment. We must strive to make lawmakers, researchers, physicians
and the general population aware of the impact of this disease, in
order to improve patient care - and ultimately, one day, a cure. See also: http://www.CenterForEndo.com | http://www.EndoCenter.org See the Letter in Swedish, Compliments
of Endosister Karin. Word document in Hebrew translation is also
available (email for your copy). REPRINTS/PERMISSIONS: IMPORTANT
NOTICE CONCERNING THE USE OF THIS MATERIAL IN THE REFLEX SYMPATHETIC
DYSTROPHY SYNDROME (RSD) COMMUNITY:
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