“Say she rail; why, I’ll tell her plain She sings as sweetly as a nightingale.
Say that she frown; I’ll say she looks as clear As morning roses newly wash’d with dew.
Say she be mute and will not speak a word;
Then I’ll commend her volubility, and say she uttereth piercing eloquence.”
In my mind I often refer to my Endometriosis as a ‘bitch’ – as if it has a personality that is fickle, cantankerous and enjoys inflicting pain on others. Sometimes it seems more like a monster – that thing that compels you to hide under the bed and cry. Endo is a life sentence. Your life is now not your own. It won’t take your life away from you, but it will hold you hostage until something else does.
There is no road map. No stages of progression. No standard treatment plan. No way of seeing it for what it really is without cutting you open and digging it out. There is no cure.
This is all only apparent, of course, once you have figured out what it is you actually have. It takes, on average, about eight years to be diagnosed with Endo. We spend that time with no answers as to why we are lying flat on our back in the kind of agony that makes you uncontrollably whimper out loud.
No answers as to why we have to set an alarm for the middle of the night to avoid waking in a pool of blood.
No answers as to why we feel so emphatically fatigued.
No answers as to why we can’t bear even the thought of sex with our partners.
Some of us have never had a partner, because how do you explain to a person who does not already know and love you that you can’t bear the thought of going through the pain that physical intimacy causes?
Endometriosis has taught me a lot of things. It’s taught me to question easy answers and good news. The sceptic in me grows more and more, day by day – constantly being reinforced by this relentless beast. It has taught me that anything I have could be ripped from me at a moment’s notice entirely without my permission. It has taught me that some people are deeply ignorant and stupid, some just outright nasty. It has shone a light on the inadequacies of the health and welfare systems which treat people with chronic pain with scepticism, impatience and apathy. It has shown me why the world still needs feminism as much as ever. It has tarnished my dreams, rendered vulnerable my financial security and scattered any notions I had of having a stable career.
Sometimes it feels like my whole life is wrapped up in this disease; tangled and constrained. It holds me back from fully being myself. But it also holds me back from living on autopilot. Everything I do – every movement, every breath, every word – is a choice now. Each action is something I choose to do at the expense of something else. If I choose to hang out the washing, I might not be able to cook dinner. If I choose to have sex, I might not be able to do anything else for the next two days. There is always a plan. I no longer over-commit myself to things I don’t truly care about. I no longer join endless committees. I no longer spend time with people who suck on my soul. So in some perverted way, Endo is a gift. It has given me freedom and control to be the simplest, most genuine version of myself.
Endo has shown me that I possess a strength I never knew I had, and love I don’t deserve. It has taught me how to say ‘no’, and how to let go of silly things that cause serious stress. It has brought me new friends – beautiful women who embrace life and face each day with the same tenacity that I am learning to see in me. It has reinvigorated old friendships by creating common ground. It has taught me to be more appreciative of simple things – art, silence, TV, good chocolate, opiates, holding hands, peppermint tea and wheat bags.
My life is rich with colour; with feelings, with moments of clarity amongst the moments of despair. It is filled with birds and cake, flowers and cuddles. It brings gifts I never expected and challenges that make me a better human being.
Like the last slip of sunlight through the window before dusk – that hovering orange glow streaming across the walls – these moments of abundance tell me that there is more light and warmth to come. And there is more to me than Endo.