“THE LETTER FROM SURVIVORS” LIVING WITH ENDOMETRIOSIS

*original letter by Heather Guidone*

THIS LETTER IS FOR ALL OF US

Dear Parents, Partners, Friends, Families, Co-Workers, 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 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 capabilities.

We are not anti-social, dramatic, pessimistic, lazy, too tired, too crazy and 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 exhibit the disease in our every day 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 excrutiating pelvic pain, extreme fatigue, nausea, low grade fever, sharp intestinal pains and splitting headaches. 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?

Most, if not all women with Endometriosis (accompanied with the debilitating pain) also suffer from Chronic Fatigue Syndrome, severe digestive problems, infertility, allergies, a hormone imbalance, anxiety and depression. Did you know Endo is also believed to be an Autoimmune Deficiency Disease? Makes since now since we are easily susceptible to colds, flu’s, viruses. Some of these symptoms can be cyclical, meaning we can feel great for a few weeks out of the month but then are in agony the rest of the month. Some of these symptoms can be continuous

And to top all that off we have a special dairy-free, sugar-free, gluten-free, soy-free, caffeine-free, alcohol-free, red meat-free, pork-free diet we must adhere to. This surely makes us the life of the party! Imagine such a strict diet...we can never just grab something quick to eat, eat at the latest restaurants, or even take road trips and eat along the way…

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 Endo is a hormone imbalance. It’s because we are taking drug/hormone 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 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 not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very 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 did that, or at least the last time pain-free. We can’t have a nice time with our children because most of us can’t have them. Maybe 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 of passed this disease down through our blood into 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 we ever are. You are appreciated more than words can ever say.

DON’T GIVE UP ON US NOW.

To medical professionals, 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’s “normal for women 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 to 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 appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not about us. Please try to remember what the term “friend” means. Please remember that friendship is a two-way street. If we don’t keep calling or reaching out to you ,we probably wouldn’t be friends anymore. Why don’t you reach out to us?

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 pain 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 we have been dealing with infertility for the last however many years). We in our 20s and 30s 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 the 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 reason why.

ENDOMETRIOSIS IS A SERIOUS CHRONIC 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 pain killers that numb our suffering to a degree and become part of the living again.

Help us get rid of the xenoestrogens in our make up, lotion and beauty products!! Xenoestrogen feeds our disease.

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. We will not hide this any longer! This is nothing to be embarrassed about. We will shout this to all that will listen! This affects us all!

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, sister, friend, or family member you once knew?

THINK ABOUT IT.

______________

I added more of my own personal words so my family and friends could better relate but the original Letter was authored in 1997 by Heather Guidone<--- MY MENTOR This letter has been distributed around the world countless times and has reached nearly a million unique readers. It has been translated into other languages; shared extensively in patient communities; read to the crowd on the steps of the Lincoln Memorial in Washington, DC at the first annual EndoWalk for Awareness; been given to families, physicians, caregivers, spouses, friends and government officials; and it is currently used by advocacy organizations in the US, Europe and Australia to facilitate their efforts at raising awareness and validating those who live with the disease. The Letter is intended to give insight and understanding as to what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large. More importantly, this Letter is for all the Endosisters around the world who hold their heads high every day, *in spite of* Endometriosis.