When I was little I would frequently return home from visiting my father with raging ear infections. I was a water baby, practically living in his pool on school holidays which served the dual purpose of a) giving me the infections in the first place and b) distracting me sufficiently from the pain that my head was about falling off by the time I raised enough of an issue to make it to the doctor. My mother learned early that when I offhandedly mentioned something hurt, only to be distracted by a game of tag five minutes later, that that didn’t mean the pain wasn’t serious. I just had a knack for ignoring my body’s klaxons, right up until either the distractions ran out, or an emergency room visit was in order.
It’s something I never grew out of. Which is probably for the best because two decades later I was diagnosed with endometriosis.
Cliffs notes: Endometriosis is what happens when the inner lining of the uterus—the endometrium—decides it wants to leave home and settle somewhere exotic, like your abdominal cavity. Or your ovaries. Or your bladder. Or your bowel.
Once attached, it grows and spreads until your insides look like Shelob’s cave from Lord of the Rings. In severe cases, your organs can fuse to your abdominal walls, or y’know, your other organs. This is exactly as fun as it sounds.
Pain is one of the most obvious symptoms of endometriosis and is generally what sends people into surgery to be diagnosed. Nothing like throwing up in the shower anytime you have your period to make you beg someone to cut you open.
I was diagnosed in October of last year, after three solid months of chronic pelvic and back pain. Surgery helped, but ongoing medication side effects plus some fun co-morbid issues have ensured that my days completely pain-free since July 2016 can be counted on one hand. I’m now surgery-bound for the second time in six months, because while a rogue ovarian cyst distracted the guards, endometriosis growths snuck back into the venue, gluing my insides together and generally making a nuisance of themselves.
I’ve been in pain so long I’ve honestly forgotten what it’s like to not be. And it’s hard. Fuck me, is it hard. I’ve cried my way through many-a-night, and sometimes it’s the pain but mostly it’s the frustration. Because while I’m a pro at pain management, even a marathon runner is gonna collapse every couple of hundred miles.
“I have good days and bad days,” is the cliche of choice here. This can mean a couple of things though:
“My pain more severe on some days than others,” is the generalised reading and a totally valid one. However, “I’ve been managing my pain for six days now and I’m fucking tired, fuck today, fuck my life, everything is terrible, I haTE THIS,” is an interpretation that speaks more authentically to me.
Some of my worst days have been accompanied by only mild pain. But the severity doesn’t matter. For me, the devil’s in the consistency. There’re only so many times you can say, “I know,” when your body’s telling you something’s wrong before you’re in a screaming match with your own nervous system and your brain slams the door on its way out.
But I survive. I manage. I have good days, and sometimes I get to be somewhat functional.
I try to get out of the house whenever I can which can make for interesting times when my “good” days coincide with more severe pain. I tend to push myself when those crop up though because I’ve found I have to take my good days where I can. While staying in bed all day may sound like a chill time, it’s actually a one-way trip down a depressive rabbit hole that I’ve had faaaaar too much experience with, thank you very much.
If it’s a choice between being in pain and a slow descent into asshole brain hell, I’ll take the pain.
Being out also helps distract me. Being social requires a lot of attention, and that’s attention I’m not paying to how much my back is killing me. It’s not a game of tag, but waxing poetic about Marvel’s Netflix legacy over a pint is just as good.
For obvious reasons, this approach doesn’t always work. Sometimes the pain is too much and I can’t get out of bed however much I want to. Sometimes my bad days coincide with severe pain and those are a barrel of laughs, let me tell you.
It’s a balancing act. A never-ending, super precarious one. With teeth.
But hey, at least I’m getting good at it.