Updated: Aug 12
The self you leave behind is only a skin you have outgrown.
Don't grieve for it. Look to the wet, raw, unfinished self, the one you are becoming.
— Pat Schneider “Instructions for the Journey”
I am writing this for the thousands of women out there with this chronic debilitating disease.
I see you.
And know that for years you have sat in doctor’s offices and had hundreds of tests. And for a lot of the time, the doctors have said they can’t find anything wrong. When every day, every month you are crippled with pain. That when they finally do find something — because it has always been there — you weep with relief that someone finally believed you. You want them to say, “Yes, it is bad; yes, it is severe; yes, it is a wonder that you have been able to do as much as you have. You are not alone. You are 1 in 9.”
This interior world that is dark and painful, that is unseen to others because you are trying your best to get on in the world and prove that you can beat it. This monster that has literally stuck you together, obliterated, distorted and strangled your reproductive organs. At times you have never seen so much blood. You wonder if you are dying. Where having a period is a major event… and as you black out with the pain you hope to god, you are dying! This inner war, that prevents you from being well, from sharing yourself in the world, having children, being intimate with your partner… and when getting up each day is like walking through concrete.
You see, you have probably had it your whole life. From the moment you were born, it was already there — this chronic inflammation disease. You remember the flooding of your periods when you were young, doubling over with pain and doctors saying it was normal. Where finally it took six and a half hours the first time, they operated to exorcise these lesion-demons from your body.
You were told then that you would not have children naturally, if at all and you felt so ashamed by the disease. That perhaps you deserved it because only two years earlier you had terminated the one and only pregnancy you would ever have. In your adult life, you went on to experience daily: vertigo, dizziness, nausea, bloating, diarrhoea, back pain, leg pain, leg tremors, sciatica, anxiety, panic attacks, joint pain, headaches, anaemia, menorrhagia, fatigue and more fatigue. You lose time, you lose your mind, and you wonder what the **** is happening.
Endo. Sounds sweet right!?
Endometriosis — so insidious… like choke weed — where the endometrium cells in your uterus grow outside their natural home to adhere to the internal pelvic structures and become hard like rock. They grow on your ligaments, bowel, ureter, ovaries and fallopian tubes. These cells that are literally trying to escape from your body can be found in your lungs, liver and even shut down your kidneys.
You are embattled, at war