Some days – most days, in fact – I do this thing where I imagine my life in two, five, sometimes ten years’ time. I think about the person I’ll be. Will I laugh more, or less? Will I be hardened, or gentler? Will the world have been kind to me, or will it have dealt its blows? I think about the people who will be around me and the ones who might fall away. I think about my career and my hobbies and my happiness, and wonder how they will intersect with each other. I think about my purpose. Will work continue to drive me so intensely, or will I have settled on that front? I think about my identity. I think about the kinds of things that will change and how deeply I might be shaken by a new reality.
And I wonder, often, whether I’ll have kids by a certain point. I consider all the different points along my personal timeline at which I could become a mother, and the forces in my life – be it work, finances or love – that would help or hinder that pursuit. Will it be Then? And if not Exactly Then, will it be Around Then, anyway? What about a point that comes after both Exactly Then and Around Then? What about Now? What about Ever?
As my mind meanders, twisting and strolling and looking around, as it concocts hypotheticals and just as quickly shoots them down, I also wonder if being a mum is actually in my destiny at all. And then I wonder why I’ve never felt like I’ve had permission to say that aloud.
For such a common affliction, affecting up to ten per cent of Australian women, an endometriosis diagnosis can be surprisingly hard to receive. In my case, it came after a bunch of pain rendered me absolutely useless at a similar time every month. (I say similar, because my period was never particularly kind in its consistency.) Every three or five weeks – or every two if it felt like it – my period would come and bring with it a band of cronies who would squash me with pain and fatigue.
It was the fatigue that would arrive first, smacking me on landing. It was never subtle and it never gave much warning. It would come, say hi and make itself at home just like an over-familiar neighbour, thrashing my energy levels until perhaps the fatigue itself fatigued, dissipating until it was time to return again next month. Or next week.
The pain was careless, consistent and powerful in its ability to keep me horizontal for multiple days at a time. It came in waves, like pain often does, both flirty and erratic, never staying long enough for my weeks to be totally invaded, but long enough for each pain-filled punch to land.
I always noted the distinct sense of discomfort that came with my period’s arrival. The discomfort was part pain, part sentiment. My body felt heavier; movement took more thought and certainly more energy. I was slow, sluggish and lethargic. For a fleeting moment every month, I didn’t recognise myself or my own form.
I was about nineteen by the time I received formal diagnoses of endometriosis and vaginismus within months of each other. The endometriosis diagnosis came post-surgery, as it only can, after it was confirmed that yes, smatterings of endometrial tissue had wedged their way into nooks and crannies beyond my uterus and settled into their cyclical rhythm of painful reminders that they weren’t where they should be.
I wonder now if one of the reasons it didn’t interrupt my mind or my foray into early adulthood was because I didn’t let it. My relationships with endometriosis and vaginismus followed occasionally overlapping paths, each characterised by denial and my firm belief that neither condition could rattle me if I did not want it to. Perhaps it helped, too, that my gynaecologist was undemonstrative in a way I didn’t mind, with a no-nonsense decisiveness that I grew to appreciate. She wasn’t one to indulge airs and graces; she was matter-of-fact in her delivery of news but thoroughly kind, once I found a way to crack her.
What’s funny is that at first, the endometriosis diagnosis gave me no cause for concern, no late-night worry or bubbling angst – until a year after that initial surgery, when I began to understand how its hold on my body could go far beyond fleeting flashes of frenzied pain. That was when I began to understand my fertility was now part of this conversation, but I wasn’t.
‘And babies?’ I asked, with no conviction at all really, as an incidental ‘Oh yes!’ sort of thing. I had the inflection of someone trying so hard to convey composure, it came out as a kind of squeak.
Considering my words, my gynaecologist kept her eyes fixed to her screen, brushed her hand through the air and told me not to worry. I don’t remember her exact reply – it was six years ago now – but I remember the message, and the unintended flippancy with which it was delivered.
We will cross that bridge when we come to it.
With a shrug of the shoulders and a quick smile, she had just given me her prognosis – and all I took from it was an infinite stretch of limbo.
I was twenty at the time, and it had been a year since I had hobbled out of surgery. I found it peculiar that my future – my health – was now being projected in clichés that made little sense. How would I cross that bridge when I came to it when I didn’t even know when I would be able to do the crossing? What if, by the time I got there, I had missed my window and there was no bridge to cross? Why couldn’t anyone just give me a tangible answer to sit with now, so I didn’t fixate on nonsensical metaphors about bridges and moats and fertility?
I understood her intention, her sentiment and even her tone. I understood it as much then as I do now, because it’s characteristic of every conversation I’ve had in the years since about my body, fertility and future. The few times I’ve raised the question around my fertility, be it through an off-hand, self-deprecating comment or a more earnest one wrapped in genuine confusion, it’s been met with the same overwhelming response:
This is not your worry to own yet.
A response like that one is infused with good intentions and short-sighted attempts to comfort. After all, no one wants to stoke the stress, inflate the insecurity or encourage the worry when nothing is concrete or confirmed. Why exacerbate concerns about fertility when things could change? When it might not prove to be a problem? When science could catch up or if, when the time comes, you could find another way to parent a child?
Logically, it makes sense. Perhaps, too, it’s what I would say if I found myself on the other side of the conversation. But the reality is I’m not on the other side and logic often doesn’t help because in cases like these, rationality and emotion are like oil and water, repelling on impact, at odds with the other’s essence.
Bridget Hustwaite, the host of Good Nights on Triple J and ambassador for Endometriosis Australia, was diagnosed with stage four endometriosis in August 2018, at the age of twenty-seven. When Mich and I interviewed her for Shameless, she spoke of the quiet isolation and confusion that comes with trying to have conversations about fertility when you’re not yet ready to try to have a baby.
‘In my own life and my own experience, I have brought fertility up with every GP and gyno I’ve visited. And they’re always like, “How old are you?” And I tell them I am twenty-eight, and then they ask when I want to have kids. I tell them not now, and they tell me not to worry. That we can worry about it later. But I am worried. I am super worried,’ she said.
Considering a world in which young women are encouraged to participate in conversations about fertility is not without headaches. There is always the risk of fearmongering, of our terror being taken advantage of by institutions who see value in our nerves and dollar signs in our uncertainty. But there has to be a happy medium; an arena in which the conversation can prevail, a safe space for women to express concern without fear they will be told to fall pregnant at once or freeze their eggs right away.
Bridget agrees. ‘You’re either being told “Don’t worry about it, you’re sweet” or “Get pregnant now, pregnancy helps your symptoms”. A lot of women who are diagnosed with endometriosis are told to either get pregnant or have a hysterectomy when they are diagnosed, and those are two complete extremes: two very big, life-changing things. There’s no middle ground between those two things, like there’s no middle ground in the fertility conversation. But I do want to worry about it, I do want a plan.’
I’ve always wondered where the other young women are; the ones who harbour the same worries I do but have never been given permission to say them aloud. The ones treading water in a real-life purgatory, where the future feels fickle and the unknown leaves them breathless at night. Where are they and their worries and their confusion? Where did we bury them once they buried their pain? Where are their voices and their hearts and their fear?
I fear the world has gagged them without meaning to, and dismissed their concerns because we didn’t know how to navigate a conversation where their anxieties could become their truths.
When I tell someone I’m not sure if I’ll be able to have kids, or that I don’t know what my fertility looks like now, nor will I in five years’ time, I’m not looking for their advice or even their sympathy, because who’s to say what’s in the illustration of my future? All I want is for someone to tell me my confusion is warranted, my forward-thinking legitimate, that, even though things may work out in exactly the way they are meant to, it’s okay to be riddled with worry now. That as a young woman not yet ready to have a child, I am allowed to be vocal about the fear of a day I may be ready, but my body decides I am not.
I want them to agree that for too long, the space between young women and the fertility conversation has been chasmal, that for too long we’ve been locked out, that for a stupid amount of time people forgot we were a part of it, too. And I want them to share my hope that somewhere in that yawning blank space, we might even be given a place to sit.
Sometimes, in those moments when I look forward, I think about love. I think about the people I love now, the people I will love later and the overlap between them. I think about what my love will be worth, what my currency will be, where my value will lie. Mostly, I think about what will happen if my love is never maternal.
Will there be some binding, inexplicable, all-consuming kind of love I never get to feel? Is there a love that exists that could fundamentally change my identity, that may never flood my veins? Without ever knowing maternal love, will I miss out on something metamorphic? Will my love mean much at all, if it’s not cradled around the children I raise?
Of course, my rational brain knows the answer to these things: my love has worth and will always have worth beyond the confines of the maternal. Love is subjective; it is whatever we choose it to be. I know that all love is exposing, that all love is terrifying, that all good love makes you feel vulnerable and naked and defenceless. I know love can be both one big thing and a million tiny moments.
When I look back on the memory of my gynaecologist saying my fertility was a bridge I would come to later, I wonder how the conversation would have transpired if I had rejected that answer entirely. If I had told her I did not want to be robbed of the power to make decisions about my own life, and that my biggest fear was not being betrayed by biology, but instead by a system that did not tell me early enough I needed to have children by a certain age or risk growing old without them.
In the moments I’ve let myself go there – to envisage a future without a tiny, toothless dictator of my own – I don’t feel broken or unhappy or unfulfilled, not yet. I just feel confused, and sometimes a little lonely. I yearn for a place where my angst is validated – for me and for the sisters I do not know, with voices I cannot hear, who have been quietly waiting for their bridge, too.
Fertility will deceive the healthiest bodies and the most positive minds. Fertility might be your bridge-crossing problem or it might give you no problem at all. Your love one day may be maternal, or it may be reserved for others. But no matter the form, no matter the future: that worry you feel now? That worry matters, too.
Being in limbo isn’t the end of the story, it is a story in itself – a knotty tale with deep meaning, and perhaps it’s time to be vocal about that. To stop feeling muzzled, to tell our doctors and nurses, sisters and friends that we refuse to float in a galaxy of limbo, silence and fear.
I am neither at the start nor at the end of my fertility journey, but what I know now is that my spot within it – in the space between both of those endpoints – is worth something, no matter how young I may be.