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Re: A Letter From Survivors (By Heather)
From: Michele (anonymous@obgyn.net)
Sat Nov 27 08:24:33 1999
That letter says exactly what I feel. Thanks Heather, for writing that and
Lisa for posting it again.
Michele
>From: anonymous@obgyn.net
>Reply-To: anonymous@obgyn.net
>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>Subject: A Letter From Survivors (By Heather)
>Date: Fri, 26 Nov 1999 21:53:12 -0600
>
>Here you go, Kris...and thank you, Heather for writing this letter that
>says it so very well!
>
>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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