OBGYN.net: The Universe of Women's Health

Heather Guidone, OBGYN.net delivered the following speech at the Endometriosis Walk For Awareness held in Washington, DC in March, 2000

I am honored to be here today and would to thank the Walk Committee for organizing such a monumentally important event. I would also like to thank the expert speakers for taking the time to join us and show their support of our cause, and most importantly, thank each of you for being here. You are an inspiration to the millions of other women with this disease all over the world.

This event shows the dedication each of us in the Endo community has to raising awareness, providing support to one another and ultimately, shows that we are all committed to finding a cure. Though each of us has a different story to tell, our paths all lead down the same road and we are joined by our common bond, Endometriosis. Our perseverance, unity and dedication is going to get us the answers we need and deserve. Do not lose sight of our cause or the hopes of achieving our goals.

Many of you met on the internet and are meeting in person today for the first time. I know that the friendships forged in support groups all over the web will continue to grow for years to come. We have won half the battle by being here today together. One of the most important things a woman with Endometriosis and her loved ones can do is seek and offer support; knowing that we are not alone through this vast support network helps comfort us, educate us and empower us over this disease.

I am reminded of the importance of support by a story relayed to me by Michelle Marvel, the Executive Director of the Endometriosis Research Center. The story was originally told by Bob Barnt, an inspirational speaker. In this story, a young woman is rendered blind by an accident. Rather than just give up, she is encouraged by her husband to get back to living her life as she had become accustomed. Without her sight, she was afraid to go to work as she had been for years prior. But everyday her husband would ride with her on the bus and help her re-learn the steps. Finally the day came when he told her it was time to do it on her own. So she started doing it by herself everyday, in spite of her fears. One day the bus driver said to her, "you're so lucky, everyday to and from work, you have someone to get on the bus with you who rides all the way just to make sure you get there and back ok." Because she had been riding alone, she had no idea what the driver was talking about. But as he explained the situation, she realized that she was never alone; her husband was always one step behind her everyday making sure she was ok, but doing it without her knowledge so she could have the courage to stand on her own again.

The story reminds me that each of us is never alone in the Endometriosis community - we always have an Endoangel supporting us every step of our way.

Many of you are familiar with the "Letter from Survivors" which has been circulated around the internet for the past couple years. I have received so many letters thanking me for saying what so many of us feel but cannot put into words, and I have been asked to read it here today to help spread our message.

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 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 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 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 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 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 people 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 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 we 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.

Signed,
The Millions of Endometriosis Survivors Around the World"

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