Thursday, 21 July 2016

Privilege in the infertility world

 You can achieve anything series – Part 4

At best, the application of the idea that we can achieve anything if we put our minds to it/work hard enough/want it enough brings focus to our efforts, inspires us, and gives us hope. That encourages us to look at the ways we can improve our chances. When I was full of hope, I certainly tried a number of things I would never have attempted previously.

So if we are successful, we congratulate ourselves on doing that thing which, we believe, changed our fate. In the infertility world, it is pinpointing what made the difference in the particular cycle when they conceived, or during the pregnancy that stuck. Maybe it was just relaxing. Maybe it was sticking at it for just that one last cycle. Or pushing for a different protocol, or working with a different doctor or clinic. Everyone wants to feel that their choices made the difference, that they had some control, and they want the credit for that. It’s quite a natural response.

But that belief in our individual power can give rise to the message that there is actual proof that you can, in fact, achieve anything if you put your mind to it/want it enough/work hard enough. These messages exhort us to never give up, because they didn’t, and look at them now. Or they suggest that the reason we are not pregnant or parents is because we should have tried X, Y or Z, because it worked – so they have concluded - for them. When these messages are given out, this belief can become damaging, accusatory even. It can (though of course it doesn’t always, as shown by some of my wonderful readers and commenters) turn into an unpleasant smugness: “I’m pregnant because I did X, Y or Z.” The message, usually unspoken but not always, is that they tried harder/worked harder/wanted it more than we did.

That of course, intentionally or unintentionally, sends the message that those of us who didn’t achieve success only have ourselves to blame. It judges. And it is received as such. It makes those who might be contemplating stopping second guess their decisions, guiltily wondering if they don’t want it enough, feeling that others see them as weak, giving up, quitters. It makes them more susceptible to those who spread the message to never give up who have commercial motivations (their doctors and clinics), or with societal/religious motivations behind their message.

It makes those of us who did stop, whether through choice or not, feel guilty, as if we didn’t deserve to have children, because we too didn’t want it enough. Unlike the successfully pregnant/parents, this message tells us that we clearly didn’t work hard enough/want it enough/try hard enough/stick at it long enough to succeed. “It’s your fault,” say the messages. “You didn’t deserve it.” We feel this blame, this judgement, acutely, because – immersed in these messages - we inevitably ask ourselves if this means we were undeserving, if there was more we could have/should have done?

Yet there is still so much unknown about infertility and assisted reproduction that, in many cases, even if a couple did howl at the moon, stand on their heads, push for that one last cycle with a particular protocol, eat foods X and Y and avoid Z, before or during that particular cycle when they conceived, the facts are that they don’t know and may never definitively know which (if any) aspects made the difference, and which (if any) didn’t. Even doctors will admit that they don’t really know which results they control and which they don’t. Likewise, those of us who are No Kidding lifers don’t know if we could have taken any actions that would have seen us end up with a child, or if all our actions would have been futile. Ultimately, it all comes down to our own personal opinions.

And these personal opinions are inevitably shaped by our own experiences, our own privilege - infertility privilege, in this case. The thing with privilege though, is that so many who benefit from it never understand or accept that they had advantages that others didn’t. They think their success or advantages are a result of their hard work or desire, rather than privilege or even random luck. Maybe they are – hard work and desire inevitably help. But we all know that we can have all the hard work and desire in the world and still not reach our goals.

Some of us might think that we recognise our own privilege, but do we? Do we recognise it all? In the infertility world, whilst we are probably aware that we might be lucky to live somewhere where assisted reproduction or adoption is available, we might feel grateful that we can afford to pursue these (if we can), and believe that we are recognising our privilege. But we might not realise that the simple geography of where we live will control whether we can pursue any or unlimited or funded or unregulated assisted reproduction cycles. For example, consider the postcode lottery of IVF funding in the UK, or that countries or states bordering or near to us might offer options that our own countries/states don’t. Our locations, our cultures, religions, laws, family circumstances, and societal norms, might determine whether or not we can adopt, and even how we might feel about facing a No Kidding life.

We might also think that we have a choice about continuing to try to reach our goals, but we might be oblivious to the benefits that have led us to that feeling - the fact that our diagnoses have not ruled out options completely, that our health doesn’t prevent us from adopting, that our health system or insurance company will fund more cycles, that our culture (and government) is open to IVF or adopting. We might not realise that the education or personal strength or family history or religious background or colour of our skin that gives us the ability to advocate for ourselves is a result of privilege. Sometimes, the very fact of being able to exercise our free will is privilege.

Am I saying that nothing is within our control? Maybe I am, but not entirely. What I am saying is that the issues that influence our choices or open doors or create barriers to choice are endless (I am sure you can think of areas of luck or privilege that I have not). We are kidding ourselves if we are so overcome with pride that we can ignore the influences of privilege or even sheer luck in the process.

All this makes the message that “you can achieve anything if you put your mind to it” seem very shallow. It’s a trite slogan that alienates many people, belittles and berates, blaming and shaming those of us without the goals we had wanted to achieve. It silences those who didn’t achieve, because clearly, as we never had the right stuff to reach our goals, we are not qualified to speak.

I admit that I’m writing this because I’m still smarting from something I read a year or two ago and, for various reasons, have never written about before. Those of us who reject the “put your mind to it” message or the “never give up” message were claimed to be, quote, “sanctimoniously competing for gold in the Pain Olympics.” That accusation cut to the quick (even though it was not necessarily personally directed at me –I don’t know), because it felt so viciously (if perhaps – I want to give the benefit of the doubt - unconsciously) judgemental.

Rejecting this message, saying it can be detrimental and judgemental, isn’t about competing in the Pain Olympics. I’m not interested in playing that game, because there is never a winner. I do not criticise those whose own path is to follow the “I’ll achieve it if I try hard enough” path. If it works for them, then I will be cheering them on. I’m also not interested in “silencing pregnant women or mothers” into submission as the writer suggested. But I am interested in talking about the facts. And equally, I won’t be silenced either.

The facts are that those of us in the No Kidding community in the infertility world could have tried every possible avenue, and we would still never have achieved our goal. We shouldn’t be shamed for that. But so often we are. We’re told, for example, that we chose not to have children, when all too often we feel we had no choice, that we gave up.

But the facts are that some of us did try everything that was available to us, everything that was possible for us. There are those who may not be prepared to believe that, but the truth is that we all have different opportunities, different abilities, different privilege, and different luck that dictates how far we can go. The facts are that we all go through different experiences, and these take different tolls on us, and so limits all differ from each other. The facts are that what seems to one person to be an easy choice and the logical next step is for another person an insurmountable hurdle for whatever reasons. The facts are that what seems to be weak and giving up to one person is in fact, to another, the hardest, bravest, most bitter decision to face reality and reclaim their life. One person might think that it takes the most strength to continue, when another might think that it takes the most strength to accept and move on to another path. One person might choose to continue to find professionals or new science that keeps giving them hope, and another might choose to believe the advice their current professionals/science are giving them. Continuing to pursue a dream is an investment in their future for one person, and yet for another saying good-bye to that dream and turning towards another is an investing in their future.

The facts are that none of us should be judged for any of our decisions or our limits or lack of limits. I wish that our limits were understood, that medical professionals were more honest and transparent, that money wasn’t a motivator or a barrier, that society and our friends and family didn’t shame us into continuing or stopping or feeling like failures.

The reality is that rejecting the “put your mind to it” or “never give up” messages, and realising that the only option is to accept that it is over, is for many of us the only truth we have. In rejecting these messages, we’re not criticising those who continue to try. It’s not about them. It isn’t a case of sour grapes, and we’re not playing in the Pain Olympics. We’re just seeking the truth, our truth, and asking for a little understanding, and a recognition of our reality.


Update: This series concludes in my next post, Privilege in the No Kidding world

11 comments:

  1. I come from a place where circumstances and options allowed us to pursue fertility treatments and have access to resources. I hesitate to talk about being lucky because it implies others are unlucky. Instead, somehow we found the mechanism that allowed us to conceived and carry the Beats.

    But you're point here is very sound. That the "never give up" mantra doesn't take into account all the factors involved. Fertility treatments are not an option for everyone. Nor are unless cycles. And I refute the "wanting it enough" argument as everyone going through this clearly wants it enough.

    The problem with the Pain Olympics (again) is this attempt at quantifying something unquantifiable. There's no achieving "X" for pain that qualifies someone as wanting it enough or trying enough. There's also no luck or changing fate. Just as no two people are the same, neither is each path.

    What that means is we have to practice empathy. Yes, there are cases where you simply want to smack people, but those are not common. More common is the grief added to the grief of an undesired outcome met with challenges of not wanting it enough or not trying hard enough. That's plain ridiculous. And unfair.

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  2. Very well written. There are some women on some of the facebook infertility groups I follow who just cannot afford to go down the path of IVF or IUIs for financial reasons and it does make me realise how lucky I am to be living in a country where there is some health insurance coverage and also that I am in a position to afford a certain amount of treatments.

    I have also noticed, which you touched upon that some people seem better able to handle IVF. Like when I read about women who have done 5+ rounds, I admire their strength but I know that personally I just could not handle that as I already noticed how each round takes it out of me and is very hard on my mental & emotional health. So when I read stories of women who had their baby after 10 round of IVF and say "never give up", it could make me feel more like a failure if I do give up after say three rounds.

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  3. I've been thinking a lot about privilege lately, though not through the lens of infertility/fertility before now. On one hand I live in a country where fertility treatments are limited only by one's ability to pay for them and in city where I am 10 miles from a world class infertility clinic, but on the other hand, I live in a country where pursuing treatment is rarely covered by insurance, so treatment is basically limited to those with sufficient liquid assets to pay for it or sufficient credit to finance it (at exorbitant rates), and where undertaking treatment causes a substantial financial burden for the near and medium term.

    "The facts are that what seems to be weak and giving up to one person is in fact, to another, the hardest, bravest, most bitter decision to face reality and reclaim their life." <-- This sentence fully captures the angst I (we) felt when deciding not to pursue fertility treatment. We made the decision that was right for us, our family of two, and our future. What we didn't expect was for the decision to be met with as much pushback as it was. It goes perfectly with the dumping out versus dumping in article that you shared on Facebook this morning.

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  4. Yes, yes -- I feel very sensitive to the "you didn't do enough" or "you never know if your NEXT cycle could have been THE cycle" feeling that comes from "never give up." I feel a judgment sometimes where there isn't one, not explicitly (or maybe even implicitly), when people say, "Why didn't you do gestational carrier?" when they find out that we are donating our embryos to another couple who may be able to carry them, and while we wait for adoption. Gestational carrier is expensive and legally tricky (more expensive) in my state. It may have worked for us, but it may not have. And if we went down that route it might take away the funds we had for adoption.

    All of what we personally did was a result of privilege-- we are in a state that covers IUIs but not IVF, and we were fortunate (maybe) to be able to do so many cycles, financially. Also fortunate to be able to explore the very expensive option of donor eggs, and less expensive comparatively at least option of donor sperm. We could get more information on our sperm donor choices because we could spend more on a "deluxe" subscription for information. All of that was because we live in a place with multiple IVF clinic options, we are fortunate financially, and we had insurance coverage for all the tests, surgeries, and IUIs we did prior to our IVF cycles. We have access to infant adoption because of where we live and again our fortunate financial situation. We can accept profile opportunities that perhaps someone else might not be able to afford. I am super happy that out of all of the profile opportunities that we have had to date, financial hardship wasn't listed as a reason to place. That makes me intensely uncomfortable, to adopt a baby that couldn't be kept because he/she couldn't be afforded...because of privilege.

    You explore this so thoughtfully. I can't believe (and yet I can) that people would see this outlook as "sour grapes." I am a little nervous because tomorrow I am going blueberry picking with two ladies who adopted privately, one through connections with the other, and they are FREQUENTLY touters of "do what I did, and you'll be successful." I am hoping to steer the conversation away from that line. People don't understand that every decision within the quest to have children when it's difficult medically is incredibly personal, is based on factors that may not be outwardly apparent, and that one person's KEEP GOING is another person's ENOUGH. I just wish that everyone could respect that sliding scale and the individuality of every situation instead of feeling that they have all the answers and can help you attain what they did, poof. Excellent post!

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  5. My policy on statements like "never give up" and "you can achieve anything you put your mind to" is that I will (within reason) support people when they make those statements about themselves but that I won't be the one to say it first. I also try to be open to the give up/walk away conversation because I know, from life experience, that that can be the right thing to do! However, it was not an easy lesson to learn because I can be a proud, brittle person. Success, however you define it, is always a dance between reality and aspirations. Here's a thought though: do you think people with greater privilege also judge themselves / others more harshly than those without because they feel they MUST achieve more? You make the argument that people are judgemental because they are unaware of privilege but could not also the reverse explain some of the comments and behaviours?

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    1. Yes, it absolutely could explain some of the comments and behaviours, but it doesn't in the examples I was thinking about. I wish I'd added that perspective though in my post, so thanks!

      I think the "high standards" idea might explain the judgement in some cases, but I'm not sure that it excuses it. Someone who is privileged, and recognises it, might not be able to see that someone else isn't privileged in the same way, and so maybe that explains the harsh words/thoughts/attitudes?

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  6. This is so true. I find myself saying things like this (never give up) to friends struggling and have realized lately that it is not helpful. That not having children does not mean you gave up. Ive seen too many people experience this to think otherwise. This was a very thoughtful post that really made me think, again, about what it means to actually be supportive of other infertiles.

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  7. This series has been so, so well written and the message is so, so important. Especially this message in this post. The "never give up" line is ALWAYS one said from a place of privilege. Always. If people can't see that for themselves, it will probably be hard to show it to them, but that doesn't mean we shouldn't try and I very much respect the effort you're making to do so with this (and these) posts. I just hope the people who really need to read this do, and that they begin to understand.

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  8. Great post and now I need to read the rest of the series. I'm in an interesting spot since our use of surrogacy could be perceived as both going too far (unnatural! Move on!) and never giving up. The reality is that given my diagnosis, finances and location, we could have just as easily ended up on the other side with those for whom treatment didn't work. Never give up is insulting and far too reductive of a deeply personal and layered situation that is infertility.

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  9. I don't see asserting the flaw of prescriptively telling others never to give up as having anything to do with the Pain Olympics. It's bold and problematic to tell anyone in this community how to approach their infertility, no matter what camp. The Pain Olympics is a matter of quantifying and ranking suffering, which is just as problematic and judgmental as telling someone else never to give up, or to give up, as the case me be. The latter is also a problem in my view. (P.S. I tried to email you.)

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  10. BRAVO! Awesome post, Mali. It's really well-written. I'm shocked to read about the reference of competing for gold in the Pain Olympics, but I'm so glad you did write this post.

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