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 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 "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, painfree 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~
THIS LETTER IS FOR ALL THE ENDOWOMEN WHO HOLD THEIR HEADS HIGH EVERY DAY,
IN SPITE OF ENDOMETRIOSIS.
