But our suffering is. The implants and scar tissue that cover our organs are. The pain is. And those things that are visual, we try to hide. We grimace and try to hide our cramps at work, among friends, from our loved ones, in order not to complain, or seem weak, or give in to the disease. When we bleed through our clothes we grab for the jacket or run to the toilet to pass a clot, hoping no one can see what our bodies have made manifest. When we have sex we try to put a brave face on the pain we experience, because we want so much to love and be loved, just like everyone else, to experience the pleasure that comes with physical connection. We close our mouths instead of screaming out in agony when we feel our body responding to its own tissue out of place, outside of our uterus, on our bowels, on our bladders, kidneys, lungs and even spinal cord. We don’t share our complete story when asked about why we don’t have children yet, or why our children are IVF, or why we have adopted. We call in sick citing other reasons-a sinus infection, strep throat, a stomach bug. Our partners and families give myriad reasons why they must leave work, when they are coming home to help us out of bed, to pick the kids up from school, to make dinner for the family, or to meet us at the emergency room.
I’m tired of being invisible. I’m tired of accepting this disease as part of my narrative without being able to tell my story–no, to share my life. Because endometriosis is more than just a “story”, it’s our life, every day. It would seem every aspect of our lives is affected by this disease–from the more serious aspects of infertility and chronic pain, serious bowel complications and depression, to keeping one’s employers satisfied when the sick days seem to pile up to trying to maintain friendships when cancellations become the norm. For the past twenty years I have kept my head down and my chin up, and just gotten on with the getting on of life, through infertility, severe depression and chronic pain, with the attitude that endometriosis is just something I have to deal with. Influenced by the literature that does exist, and the fact that endometriosis is so misunderstood, I have let the existing language about it shape how I look at endo: a syndrome, a disorder, an issue. But let’s be clear, here and now–endometriosis is a disease. And the sooner we put serious language to this disease, the better our chances are of the health community and the general population taking this disease seriously.
Please join us as we construct a community where we can find support in each other, locate competent and knowledgeable physicians, discover possible treatments through diet and alternative therapies, find resources for our family and friends to understand us, and where we can remove the cloak of invisibility that surrounds this disease. Let us make this invisible disease very, very visible.