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Important
Notice: This original work of authorship is protected under the
Copyright
Laws of the About the Letter: Originally
authored in 1997,
the “Survivor Letter”, as it has come to be called over the years, has
been
distributed around the world and reached over million unique readers as
of this
writing. It has been translated into other languages; reprinted
in books;
shared extensively across global patient communities; read to the crowd
on the
steps of the Lincoln Memorial in Washington, DC at the first annual
EndoWalk
for Awareness; given to families, physicians, caregivers, spouses,
friends and
government officials; and 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 here to give those around 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: 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? 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~  NOTICE:
Absolutely
no duplication in any form permitted without express
permission. All “Survivor Letter” material
and this entire website are copyright
protected. © Copyright by
HCGuidone. All rights reserved. See the Letter in Swedish,
Compliments
of Endosister Karin. Word document in Hebrew and Spanish
translation is also
available (email for your copy).
REPRINTS/PERMISSIONS:
Many members of the endometriosis
community have expressed how much this Letter has touched you and how
you would
like to send copies off to your families, loved ones, doctors,
employers,
etc. Please feel free to do so. All I ask is that you A) keep
the
Letter intact and B) include the copyright information.
Please also
drop me a courtesy email letting me know how you've
shared
it. A PDF VERSION IS ALSO AVAILABLE UPON REQUEST FOR THOSE WHO
WISH TO
PRINT AND DISTRIBUTE IT. This Letter is for all those with
endometriosis, and I
hope it will help you in making those around you understand what we go
through. IMPORTANT
NOTICE CONCERNING THE USE OF THIS MATERIAL IN THE REFLEX SYMPATHETIC
DYSTROPHY SYNDROME (RSD) COMMUNITY:CLICK HERE
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