Trigger warning for suicide, medical procedures, infertility, and a whole bunch of other stuff.
February 2017 was not a good time for me. I had been off work for a month and was essentially bedridden. I was on a whole bucket-load of drugs and really struggling with side-effects. My gynaecologist had no more suggestions and no idea what was wrong. I did not know if I was every going to get better. Right now, I’m experiencing similar anxiety as I’m having a flare up that is going on a long time. If it doesn’t get better soon, it could seriously impact my ability to work. I’m already on reduced hours and light duties, and it’s still causing exhaustion and pain. If this is going to be the cost of working for the foreseeable future, my body can’t pay it.
Going back to February 2017. At the same time as I was lying on a couch feeling sorry for myself, a lot of women I knew from my local facebook endo group were also struggling. One woman was in so much pain that dangerously high amounts of drugs were no longer helping. Another had just had a full hysterectomy and suffered painful and dangerous complications. I was learning fun new facts through my interactions with the medical profession. For example, did you know that they tend to stick you in the maternity ward when you go in for endo? The irony seems lost on hospitals.
This is what leads me to my most embarrassing post yet (yes, way more embarrassing that discussing UTIs and thrush). It’s a poem I wrote during that time. It’s not my experiences alone but a combination of many of the stories I read at that time, expressing a collective frustration with hospitals that don’t want us and medicine that can’t fix us.
Yes, yes, sharing poetry is very year 8 unless you’re a professional poet, which I’m not. I don’t care. Please share your poems in the comments below. Let’s had a sad poem-fest.
Sometimes it is very hard to hope.
“It will be ok,” they say,
But when they ask, “How are you?”
You hear, “You’d better be better…or else.”
“Take this,” they say, “and lie down til it passes.”
Another week in bed.
“But doctor,” you say
(Not unreasonably, you think)
“I’ve tried that.”
“Well, there’s nothing we can do,” they snap.
“There’s nothing visibly wrong.”
And you look down at your distended bellly
At the clothes that don’t fit you
At the packaging for 30 endone
At the blood in your underwear
At the bruise where the tramadol made you so dizzy you fell.
“We can’t keep you here,” they say.
“We need that bed.”
You want to hug your knees and cry,
Because you know how hard you fought to get there,
How much strength it took to avoid being palmed off with a painkiller;
But you can’t reach your knees.
Your stomach is too big, and the effort makes your ovaries scream.
So you leave the ward,
The cries of the children you may never have ringing in your ears.
To beg for another week of leave.
Praying they won’t just fire you.
To buy more medicine you can’t afford.
To where acquaintances ask after your health
And are uncomfortable when it is still bad;
To the family to whom you have become a burden,
To where the dust piles up because you can’t clean
And the bin overflows with takeaway containers because you can’t cook
But at least your untouched wardrobe of pretty clothes requires no maintenance.
So you return to your gynaecologist
Who will understand
Who has your back
Who will know what to do.
“I’m sorry,” they say, “We’ve tried it all.
There’s nothing else we can do.”
Sometimes it is very hard to hope.