[Moderator’s note - After the positive response to anonfemphil’s posts on breast cancer, we’ve invited a series of posts from another female philosopher on another taboo women’s health topic: infertility. Please note that we’re allowing comments on these posts, but we will be moderating them very strictly, given the sensitive nature of the topic.]
I have a disability which leads to a variety of medical “complications”, some of which require surgical intervention. Usually, there’s nothing terribly dramatic about the process. I go in for a battery of tests, a procedure is recommended, and then that’s that. But the most recent “complication” was different – it was different because it involved, among other things, my reproductive system. All my doctors agreed that I needed surgery. There was some debate about which procedure would be best, but the consensus was that something surgical had to be done.
But. All of the standard corrective procedures would prevent me from ever getting pregnant. I was 27, with no children and no history of previous pregnancies. And so I was told, rather vaguely, that any procedure which would end my fertility was “contraindicated”.
Not to worry, I assured the surgeons, my partner and I weren’t planning on having kids. Naively, I thought this extra bit of information would settle the matter. As it turned out, it had surprisingly little impact on the (male) surgeons. You think that now, they told me. But if you lose your ability to have children, it’s permanent – and you may regret it later. Sure, I thought, of course I may regret it. But then, having kids is also permanent – and I might regret that too. I couldn’t see how my potential regret should factor into this decision, especially given that people are statistically more likely to regret child-having than non-child-having. (Turns out I would also end up with very good reason to regret a surgery delayed by medical hand-wringing about my childlessness. But this was the sort of potential regret that didn’t matter in this context, as it was only indirectly connected to lack of babies.)
My case – which is medically unusual and complicated – ended up being taken for discussion to the surgical board of the medical school which runs the teaching hospital where I’m treated. The decision they handed down still shocks me, every time I can bear to think about it. The director of the surgical team advised tactics to delay the operation as long as possible, so that I could “try to complete my family”. That my family could already be complete was not, apparently, something they considered.
It was never obvious what exactly they wanted from me, when they advised that I “try to complete my family”. My condition – especially given what was happening at the time – made it unlikely that my body could sustain a pregnancy beyond the first trimester. And if I could manage to carry a pregnancy to term, it would be very dangerous for me, and would likely cause me permanent harm. It seemed that I was being told to undergo a series of frustrating miscarriages in pursuit of a dangerous pregnancy I didn’t want. When I asked my primary care physician why this was happening, she sighed, rolled her eyes, and said “They want to be able to say that they told you to try.”
The expectation throughout seemed to be that I should try, that I should pursue biological reproduction regardless of the harm or danger. That’s what the brave woman would do. If it worked, I would have the moral victory of motherhood against the odds. If it didn’t, I would have the moral reassurance that at least I’d tried. And if it ended up killing me – well, I would die in the noble pursuit of motherhood, surrounded by understanding women, like Julia Roberts in Steel Magnolias.
What followed were a series of increasingly frustrating conversations with (male) surgeons. One responded to my claim that I didn’t want children by patiently explaining: “You shouldn’t say that. You never know about these things. Children are a wonderful blessing.” I have a hard time imagining how a doctor could think that’s an appropriate thing to say to any adult woman. But that a doctor could think it’s an appropriate thing to say to an adult woman for whom pregnancy would be a serious risk defies belief.
Another surgeon, when faced with a similar declaration from me, reacted quite differently. He smiled, as though he suddenly understood something sad and profound, and then said: “Ah, I see. Is it that you’re afraid your child would have [your condition]?” This wasn’t the first time I’d heard something to this effect. In fact, it sometimes felt like the only way to avoid the doctors’ rampant paternalism was to embrace their equally rampant ableism. My condition is genetic – autosomal dominant – so my biological children would have a 50% chance of inheriting it. But this was never a part of my decision not to have children. Insofar as I wanted children, I would’ve been delighted to have children with my condition. It’s just that I didn’t want children, disabled or non-disabled.
Things finally changed when I saw that rarest of treasures – a female surgeon. She was as incensed and mystified as I was by the long delay, and promptly set about putting a stop to it. She also told me, with refreshing frankness: “A pregnancy would be completely disastrous for your body. It will be a very good thing if we end your fertility.” As I was leaving her office, one of the nurses pulled me aside. “That was good advice she gave you,” she said quietly, “very good advice. You won’t hear that from a male surgeon.”
And so I had my operation, and am now unable to get pregnant. Because of the delay, I ended up having to have a more invasive, riskier procedure than I would otherwise have needed. And, of course, I had the long months of lots of medicine, lots of pain, and nagging awareness of the list of “things you must go to the emergency room ASAP if you notice” that the surgeons’ stalling incurred.
But what I find most frustrating about the whole thing are the more intangible elements. The attitude of most of the doctors I dealt with made me feel like my preference for childlessness was somehow unnatural, and shouldn’t be given the same respect as most women’s preference for having children. And what upsets me most about this, on reflection, is not what happened to me specifically, but what must surely happen to many women like me. I’m fortunate – I’ve never wanted children, and so in this case the needs of my body didn’t conflict with my preferences. But there are so many women in similar situations who do want children very much. I suspect that these women feel a lot of pressure – sometimes subtle, sometimes not-so-subtle – to forge ahead fearlessly in their attempts to get pregnant, and to view adoption as a distant second-best.
Don’t get me wrong – I don’t doubt that there are women in my situation with an intense desire to have their biological children, and I respect their attempts to make this happen. But attitudes like those I encountered from doctors make facing infertility much more difficult, whether or not you have a strong desire for biological children. When I was facing permanent infertility, the expectation was that I would fight it with everything in my power, consequences be damned (cue Steel Magnolias music). Expectations like that create a tremendous amount of pressure, and a creeping sense that if you aren’t willing to make extreme sacrifices in order to have babies, there’s something odd about you.
Expectations like this must surely hurt adoptive families just as they hurt women facing infertility. Whenever I would point out to my doctors that I could have children without having my biological children, they would look at me like I’d just sprouted a second head. Adoption, surely, was the last resort – to be countenanced only once you’ve lost the battle for biological children. I never understood this – but then, I’m an unnatural childless woman so maybe I’m missing something. I guess it’s always seemed like adoption is something to consider, insofar as you’re considering having kids, whether or not infertility is part of the equation.
Expectations about what families should look like are harmful. They stigmatize families that fall outside the white-picket-fence idyll. And they make life harder for people in situations that are already perfectly hard enough.