On a Scale of 1 to 10: Living With Endometriosis

It’s taking all of my energy to write this. As someone who writes a lot on good days, that feels strange to say. But I’m deliberately writing this on a bad day in the midst of a devastating low to capture how I’m feeling.

I’m in the middle of an endometriosis pain flare. What does that look like? It’s 8pm. I’m lying on my bed, clothes on, over the covers, curled up with a heat pack on my pelvis. My eyes are glazed over – I’m staring at a pile of clothes on my ‘chair-drobe’ that have been there for days now. Some are clean, some are dirty and some are in-between. Empty cups of tea and coffee pile up at my bedside. 

I was only on the phone with my GP a few hours earlier. They ask, “On a scale of one to 10, how bad is your pain?” My understanding of pain, and how other people feel it, seems completely broken. I’m always in some kind of pain. It ranges from cyclical to sporadic, uncomfortable to unbearable, inconvenient to debilitating. “About an eight,” I reply nonchalantly. For any other person, an eight might invite panic and escalation to immediate action. My plan? Ride it out, it’s nothing new.

When a wave of pain is coming, I never know how big it will be until it hits. It could splash against my ankles and pull me deeper into the sand below. Here, I can still look up at the sky and breathe in the fresh air. Or, it could wipe me off my feet. Tonight’s pain is a wipeout. I’m drowning in the pulsating rhythm that is my pelvic floor tensing and tightening. I can hardly catch a breath. The pulsing becomes a stabbing, like a dagger twisting my delicate organs. It sends my tummy into turmoil. My lower back tightens to protect my now throbbing abdomen, but this only makes me weaker. The pain radiates into my upper thighs, like wildfire spreading. I couldn’t stand up even if I wanted to. Smoke billows in my chest as my ribs tighten. My vision blurs and a pulsating migraine swallows me whole. I lie rigid, too frightened to move a muscle the wrong way. My cells go into overdrive to fight off the pain, until they have nothing left to give. All the energy I had as little as an hour ago is replaced by a thick brain fog. 

To an outsider, I am resting. My pain is invisible. The thing that shreds at my insides, steals all my drive and tampers with my thoughts, hides in plain sight.

I think about all the coffee dates I’ve had to cancel at the last second, calling from my parked car and waiting for a pain to leave that refused to pass. I have similar memories of waiting to the last possible moment in a paralysed rage, before calling up to apologise for my inevitable absence. All the times I forced myself into work in an opioid-induced haze, too fearful of criticism for taking yet another sick day. I think about the friends who I haven’t seen in months, when my body can only allow me to see a rare and small few. All the hours spent lying on my bed, exhausted from showering, running through all the worst case scenarios of leaving the house in my head. All the times I felt well enough to go out, but refused to let my body deceive me another time. “You’ll have another pain flare. You’ll be exhausted in an hour. You’ll be no fun,” a voice runs in circles.

I think back to before my first period, when my moods and panic attacks could only be blamed on my “nervous disposition” as a child. I remember feeling bruised by tampons after they reached their limit. None of the girls at school carried pads. Again, I was the outsider. I spent aggregate days in sick bay, becoming friendly with the nurse, who always took me in when my pain spiked or a bout of depression struck hard. It was my safe place, where I could switch off the world and keep the peace, resting up enough to walk home at 3 o’clock as if nothing had happened.

“Do you need more painkillers?” my GP asked earlier that day. My mind says, “Always. I can’t live without them now. I don’t have any other options.” I reply, “Sure, just in case.” 

As a cocktail of painkillers and weed take their hold, I can’t escape the burning sensation in and around my vagina. With a light touch of my labia, a burn spreads inside me. I writhe in pain. I remember the agony sex used to bring in my younger years, believing days of stinging afterward to be normal. I was better at hiding my tears back then. I have felt pleasure before, but knowing this only makes the pain more disheartening. I miss soft kisses that put me at ease, allowing my muscles to let their guard down. I miss feeling the afterglow grow on me, as my body and mind slip away to serenity.

I lament how quickly my body was taken from me. Only this morning, I was out for a light walk, as much as I can manage on a particularly bad pain day. Only two years ago, I went under the knife for the first time, hopeful to make a full recovery. I was hopeful that I would control my illness with time and practice, but my patience has worn thin. 

I try to remember what the glow of the last time I had sex felt like, over a year ago. I recall running on the netball court, dancing at gigs and pulling all-nighters. These things don’t seem like a distant memory – they seem like an alternate reality to the one I’m in now. 

Now, my body doesn’t feel like mine. My mind has grown tired of this cyclical warfare between pain and reprieve. I float to a place beyond my control, a place that taunts and ridicules me for having tried to keep up at all. I stop answering messages. A dark cloud hangs overhead. Fighting it feels like struggling against quicksand. Maybe I would be better off dead. I hope that I don’t wake up tomorrow. I fear that I may have already seen the back of my best years.

The world isn’t made for people with an illness like mine. After almost a decade spent living with mental illness, I’ve learned that the world we’re in isn’t safe for a lot of people. The pandemic has opened the public’s eyes to a way of life that was not born out of convenience, but of necessity, for disabled people. There’s a lot of things about the way we’re living now that I’m anxious we’ll lose in a post-COVID world. What happens when gigs return to normal, and bed-bound people are left behind? How does someone with an unpredictable mental or physical illness live up to the expectation that they’ll put their body on the line for a day’s work? 

I think about all the missed meetings, shifts, parties and classes. I couldn’t begin to tally up the hours spent strapped to the couch. I think about the envy I’ve felt as friends got together while I was on self-prescribed bed rest, a hardly-restorative version of rest that includes scrolling Instagram for hours. The fluctuating state of my mental and physical illness has interfered with my enjoyment of life. Until now, I’d never considered that I shouldn’t be to blame for those things.

I grieve all the things I overcommitted to when I was well and couldn’t see through. I’m occasionally angered by friends who can use their bodies so unknowingly, where I live in fear of being seen as a shell of my former self. Or worse, I won’t be believed when my scars don’t show. I’m learning to accept that I can’t be the overly-fictionalised stereotype of conquering illness. I remember my relentless perfectionism wreaking havoc after my diagnosis, when I vowed to become the master of the illness that would continue to ruin me. Now, I am beginning to reconcile with it as a part of me. Not all of me, but a part of me.

I don’t want to give a moment of attention to the mountain of medical receipts stacked up in my drawer, digging a never-ending hole in my savings. I’m fortunate to be in a position of privilege where I can direct any and all of my income to treatment. “Soon, I’ll find something that works. Soon, I’ll get better,” I used to say. Maybe it will always be this way.

I realise that disability is complex and no single lived experience can convey the multitude of ways disabled, mentally ill and chronically ill people make their way through the world. It’s much more complex than we can ever fully understand. My existence is only limited by the barriers presented to me and the expectations I place on myself. I can’t control my body like I once thought I could. 

Now, I have to figure out how to live again.

Cover photo of the author during a flare-up, below picture of the author after.

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