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Re: Fw: Here is Heather's Survivors Letter.Print and Pass to
From: Amy (anonymous@obgyn.net)
Fri Jul 21 11:08:43 2000
Thank you so much... I feel understood at last!
Amy D.
On Fri, 21 Jul 2000, Darren Brown wrote:
> Belle,
> Thank you for posting this wonderful letter. As you said is also
> brought me to tears and sent shivers down my spine. It is a very powerful
> statement, that I am sure we are all feeling. Thank you again!
>
> Celena Brown
>
> >From: "Belle" <-tinker-belle-@msn.com.au>
> >Reply-To: endo@obgyn.net
> >To: Multiple recipients of list ENDO <endo@mail.medispecialty.com>
> >Subject: Fw: Here is Heather's Survivors Letter.Print and Pass to
> >Family,Friends, Doctors and Employers
> >Date: Thu, 20 Jul 2000 22:50:21 -0500
> >
> >survlivor letterHi Charmaine,
> >
> >This was read at the Awareness Walk In Washington and its a brilliant tool
> >to help educate friends, families, doctors, nurses,colleges and even
> >employers and bosses.I hope you all enjoy it as much i do still.It still
> >brings tears to my eyes and sends shivers up my spine.Heather is one
> >amazing lady.Thankyou Heather Guidone for your permission to repost this.
> >
> >Survivors Letter
> >--------------------------------------------------------------------------------
> >The following is a letter Heather wrote at a particularly emotional time in
> >--------------------------------------------------------------------------------
> >her life. Heather states that many people have visited her site previously
> >--------------------------------------------------------------------------------
> >or as seen here, mirrored with permission and have
> >expressed how much it touched them and how they would like to send copies
> >off to their families and loved ones - and even their doctors or
> >employers...please feel free to do so if it will help you in making those
> >around you understand what we go through. All she asks is that you drop her
> >an email letting her know your intentions. This letter is for all of us.
> >Please do not change the wording in any way if you utilize it. Thank you.
> >--HCG
> >Contact Heather through Email and/or please visit her website at Heathers
> >Website
> >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.
> >
>
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