[ambient music fades in] Endometriosis crept up on me so fast, before I was even 6 months into “becoming a woman”, I was bedridden. I could barely move, because my body was in nonstop agony & I had a period that gushed out of me like a flood for months on end, nonstop. I wasn’t ready for puberty, let alone this mysterious monster growing inside me like the worst horror movie I could imagine.
“It blighted my whole life. It used to feel like I had a pelvis full of razor blades.” “The pain is deep and heavy, almost as though I’m being pulled down by gravity. It’s a soreness, sometimes a pinch or a twinge or even a stab — but nearly always it is just deep and full, almost like a moan that stays always in a low octave.” “It feels like someone is grabbing your insides and twisting them as tightly as they can…Like recurring, nonstop, appendicitis…Like a dull knife making quick jabs into your abdomen repetitively for days…It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Your muscles are tight.
You're nauseous, dizzy, and there is an uncontrollable, sharp, pain in your stomach… Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there's a lingering pain from the burn… [melancholy piano music begins to play] We are born into a world that views pain and suffering for women as normal. We’ve been so conditioned as a society to dismiss the cry of women; with such conditioning comes dark consequence. Historically viewed as hysteria and demon possession, to this day endometriosis is still not recognised by a lot of medical professionals, leaving patients being treated as “crazy” hypochondriacs. People whose bodies are affected by endometriosis are constantly refused help. 12 year old Victoria was told by doctors, she was “too young” to be this sick and have the condition. If I didn’t have such a boss of a mum - who pushed for me to get tested - I would have been ignored & cast aside for so many years with no diagnosis like so many others.
Spending years misdiagnosed, if diagnosed at all. I’m so sick of the ignorance and lack of awareness surrounding endo. It is a disability still not officially sanctioned as a disability, a serious issue left so far in the dark even in today’s advanced world, that many are still not aware of its name or impact, despite the 176+ million people worldwide who live with endometriosis.
Endometriosis is a very real disability; so damaging it drives many to suicide. Does this seem to be the kind of issue we can just continue to sweep under the rug? Have I got your attention now?? [slow uplifting piano music fades in] Hiding my illness was my most shameful secret I had to keep locked up. I resented and hate my body; I rejected femininity and everything that made me a woman, because it represented to me my deepest pain, my biggest weakness my vulnerability. Being told my illness wasn’t real over and over slowly made me begin to wonder, ‘am I a hypochondriac?’ From the invalidation and dismissal of others, I learnt to shut my mouth and I choked back the tears that ached behind my forced smile I wore as a mask for ‘normality.’ Those I looked to for a safe space of acceptance turned on me, they blamed and judged me for what was happening to my body, because of their preconceived ideas of what a sick person looks like. Doctors spoke over me, over my pleas for help and they told me 'Wait!', they could fix me; they could give me back to normal. Everyone expected so much from my body. [moody atmospheric music fades in with piano] After years of battling the uterus from hell, I’m here.
I’m battered, bruised, weary from fighting and in worse health than ever before. I’m 21, now a veteran of pain, and though my health should be improved , from all the treatments through the years, it’s not. It’s becoming more and more clear that other illnesses, both mental and physical, have developed, illnesses I am currently hunting down the diagnoses for. Everyday for me means 24/7 severe chronic pain and fatigue that flares up at any given time; always being nauseous and dizzy. It means being eternally bloated and strategically wearing clothes that hide my stomach because I look like I’m about to give birth. It means being a part-time wheelchair user and using a cane to help me live life outside of my house.
It means knowing that time is precious, because I don’t know what’s going to happen from this minute to the next. And those are only some of the many. This is my normal. [hopeful piano music fades in] I’m not saying this for anyone to feel sorry for me; I don’t want your pity. I want you to listen, to know, understand and acknowledge that this is real and it’s serious. I want to live in a world where women in pain are not dismissed, where trans & intersex people’s experiences are not erased, a world where my body isn’t just worth something when validated and accepted by cis men. It’s time people with endometriosis were given the stage. I am here to join the revolution.
End the silence! This is my normal; this is my story. What’s yours? That’s the "endo" the video [laughs] I’m so funny.
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