An observation from today.
After being forced to fast for over 24 hours ,lay in a hospital bed completely dehydrated, I was finally rolled into the surgery room . I lay looking at the ceiling, freezing cold with over 20 people in the room preparing me for surgery. I noticed I had completely normalized this situation, being strapped to a bed , multiple cannulas and oxygen masks. Then boom I’m asleep.
Waking up in a daze of pain shaking as I always do , with nurses holding my hands while I fight to take a breath , I can’t feel my legs again and my vision is hazy. This begs the question if I require a minimum of 2 surgical interventions a year with multiple hospital stays.
This disease grows like cancer, it destroys lives , it takes lives and steals time.
Endometriosis , EDS , MCAS and adnomyosis are reliant on non for profit organizations to ” advocate ” funding into research , multidisciplinary care not to mention access and treatment equality. There is no doubt that social and medical attitudes have shifted from dismissive and heavily gender biased ,to an awareness and acceptance of our existence. But for many of us it’s too little too late , we have been locked in hospital rooms all our lives told we are suffering anxiety to now being offered basic medical care.
Normalizing this is absolutely a coping mechanism, it’s protective for us old Endo soldiers. We now need our so-called advocate platforms to get back into the trenches of public policy get their hands dirty and fight for our rights as citizens, we deserve to be recognized and supported from the hospital bed to our day to day lives that can feel impossible some days . We need a top down policy shift .
