Re: A Letter From Survivors (By Heather)
From: anonymous@obgyn.net
Sat Nov 27 04:00:14 1999
Lisa,
No matter how many times i read it,
it is always as great, as the last time
i read it.Thankyou ..
Hugs,
Belle.
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> Here you go, Kris...and thank you, Heather for writing this letter that
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> says it so very well!
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>
> 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 one last time for your understanding. We are not responsible for
not
> living 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 a 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 everyday appearances. 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 mental state.
>
> 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 pass us by? 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 females. It is because
we
> are taking experimental drug therapies to combat the disease, or perhaps
> because we have come close to the breaking point after dealing day in and
day
> out with the pain for which there is no known cause or cure.
>
> When we can't have 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 as our parents can't understand that since you are healthy, we
> should be 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 blood 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
are
> not going to 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?
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 "hang out" and 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. We have to face a society which
> 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 things like, "it's all in your head", and "have a
hysterectomy,
> it will cure you", and "get pregnant, it will also cure you", when we know
> that it won't and have been dealing with infertility for the last however
> many years. We in our 20's and 30's do not wish to give up our organs just
> yet. That would be like giving in to the endo. 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. 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 why we are the way we are. 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, productive life. We can have a healthy
> relationship with our loved ones, we can contribute meaningfully to our
work
> environments. 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 kills our spirit. It
kills
> 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...we
are
> asking you to take part in that battle and work with us on doing so.
Wouldn't
> it be nice to have back the daughter, wife, friend or family member you
once
> knew? Think about it.
> ~The Sentiments of Millions of Endometriosis Survivors Around the World~
>
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