Tuesday, 27 September 2016

Trying to be inclusive

I’ve been thinking why the No Kidding amongst us sometimes feel so isolated from much of the rest of the ALI blogging community. It’s not just the fact that we have had a different outcome to the one that most of the community is focused on. I think too it’s the fact that we often have the benefit of time and distance.

We can, I think, objectively look at the issues around the fertility industry, because it doesn’t feel disloyal to us to assess, and perhaps criticise, an industry that might have created our family. We can, I think, objectively look at the issues around the fertility industry, because many/most of us we once had a vested interest in it, but no longer do. We understand what it is like to desperately want treatments to work (or to be available to us), yet we do have the benefit of experience and hindsight.

We also have the benefit of either facing/moving through/completing the process of coming to terms with life without children, that I think gives us a wider more view of society, one that many (certainly not all, including many of my lovely parent/pregnant readers) of those focused on becoming or being parents are simply unable to have (due to circumstances, perspective, and sheer time and focus).

What I think we do have to guard against is entering into an us vs them situation, though I do think that this becomes easier with time.


13 comments:

  1. This is an interesting topic. I do often wonder about this myself. I wonder whether I alienate those who are still trying to conceive when I criticise the industry, and when I talk about my own bad experiences with last-ditch treatments and clueless doctors. I interact with people who are undergoing treatment and wish them well, but maybe when they read my stories they think I'm a hypocrite, I don't know. I have an interest in all aspects of the ALI world and want to be friends with everyone but I know that there might be chasms and misunderstandings between the various cohorts. For example, a real-life friend of mine (early 40s, accepting of fact that she won't have kids) was delighted to find my blog and raved about it to a colleague who was TTC. This colleague politely followed my blog but then I got a rather panicky email from the friend after my piece about my own failed IVF was published - the colleague was about to have IVF herself, and if she read my piece she'd be devastated... I think my friend was a bit embarrassed to have recommended my blog. I felt bad that day, and worried about this woman out there in the world doing her hopeful IVF, and I wondered whether I represented something like an angel of doom to her... But then I remembered that we are sometimes isolated, as you say, as women whose outcome was different, and we are adrift in a tsunami of mommy blogs, and even adoption blogs and children-after-infertility blogs, so we need to make our mark in some way and be true to ourselves... I don't have any answers really but I'm mulling this over, so thank you. I hope this isn't irrelevant to your original questions, I rambled a bit...

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  2. I feel like our CNBC community at least tries to be inclusive, but this is rarely reciprocated. Honestly, I think that we're viewed as the worst nightmare of those who are still in the trenches (that's what an infertility friend told me anyway) because they just can't imagine their journey ending up like ours. I also think that we're speaking a message that not everybody is ready to hear, and so they avoid us.

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    1. I agree with BentnotBroken... that we are often viewed as the worst nightmare. Yes, we are avoided. Luckily we have each other!

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  3. Great points, Mali. I think people doing ARTs recognize the shortcomings & pitfalls of the industry -- some of them, anyway, at least on some level. But they press on because "it will all be worth it" (they hope) when they get their baby. Nobody likes to think that they're going to put all this time and energy and money into this thing and not have it work -- even though that's the reality for the majority of us, and especially when you move into a certain age bracket. Hope is a powerful, powerful motivator, and the fertility industry knows that.

    BnB has a good point. I think those of us in this corner of the community are particularly sensitive to the need to be inclusive -- because we're so often NOT included when people talk about ART outcomes. We've seen it many times over the years in the ALI blogosophere, in discussions that pit those still "in the trenches" vs those who have achieved parenthood, and those of us who decided to opt out completely waving from the corner going "Ummm, hello??" It's getting better, I think (partly because we're becoming more vocal, with more people speaking out about childless/free living), but it's a long sllllooooowwww process...

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  4. BentNotBroken puts it very succinctly above - I agree with this.

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  5. I've had to think about this, given my relationship with you and others in this subset of the community and my own outcome. I think a big part of it is being in treatment and he locality people feel towards their REs. For those who achieve pregnancy right away after a treatment cycle, criticizing the industry feels like a slap in the face as these are the people who helped you bring home a baby. It's similar as those who found a RE they could work with who helped them bring home a baby shortly after meeting them. Where these feelings change is following failure after failure. And coming to the realization that your RE really doesn't have all the answers and is just doing what they know to do. I am grateful for my REs and what they did to help me bring home the Beats, but I also feel there are some unethical practices that happen, particularly with the financial end, and I also had to fight more than I cared to for answers from my first set. In short, the complexity and uncertainty opened my eyes and made me receptive to the message that this doesnt always work. I also got to a point where treatments were taking such a toll that I almost lost the family I had (thank goodness for David and Dee).

    Kinsey is right though about the worst case scenario. I've been guilty of that mindset.

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    1. I think at some stage we have all felt that way - which is why we recognise it so easily!

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  6. But do we call doctors (and not insurance agents) the "health care industry"? Is there a cancer industry (again, clinics, not Komen slapping pink on everything)? Or an ophthalmology industry? Because when we use the term "industry" to refer to doctors and the procedures they perform (vs the outliers to the process), it removes the idea from the medical world and puts it in the business world.

    I have the same distance, but I don't have the same outlook. Are there people exploiting the issue, of course. But the vast majority of doctors are simply doctors, making recommendations based on their medical experience while looking at the chart of the individual in front of them. I don't believe doctors nefariously lead their patients to known dead-ends. I believe that doctors make decisions based on the information they know at the time, and perhaps would offer different advice in hindsight.

    I can only look at the situation based on my experience and the experiences of people I know, and I wouldn't say any of those situations point towards exploitation but rather the fact that sometimes medical procedures work and sometimes they don't.

    Now if we want to talk about the outliers who try to capitalize on the situation, that's a different story. But I see the businesses that push egg freezing parties as if they're tupperware or fertility trackers as very different from the doctors who work with patients to treat a problem.

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    1. I think there are very definitely aspects of the health care sector that comprise a "cancer industry." And if they act as such, why not call them that?

      I wonder if we refuse to admit that many parts of the medical world are in fact happier in the business world, and motivated by all the same things as the inhabitants in the business world (eg. profits, repeat customers, etc). That doesn't mean that they can't also be motivated by ethics and desire to do good. But it does mean that ethics can be blurred by profit motives. That applies whether it is in the fertility field, opthamology, or cancer treatment.

      I also think that regulations can help to control and restrain medical professionals when they need it, as I certainly think that patients are exploited in all those sectors, and that maybe it becomes so routine that the exploitation is considered normal and not recognised as such.

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  7. Hi Mali,
    I started following your blog while debating to go on more extreme treatments. I've always treasured your perspective, not as worst nightmare but as a valid and valuable outcome. You gave me hope that I would always enjoy travelling and so many other aspects of the No Kidding life. I think that too gave me strength to make those hard decisions.
    So thank you once again for trying to be inclusive, I try to be inclusive from my end.

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  8. I had LASIK a few years before IVF. Both were done privately and therefore "industries". Obviously the LASIK was less emotionally charged and it also was a success unlike my multiple IVFs, which may colour my views somewhat.
    The LASIK surgeon explained clearly the risks and probability of success. He also gave me a thorough examination, and said that if I wasn't a good candidate he wouldn't do the surgery.
    None of the fertility doctors I saw gave me any such information. One woman I saw near the beginning said most couples conceived within 3 cycles and if they didn't there was likely an intractable problem. But when we got to the 3rd failed cycle, we were encouraged to proceed despite my age and issues on both sides. Nobody at any stage suggested counselling despite what I know now were obvious signs of depression.
    I now have 20/20 vision and no children. I would have chosen otherwise, but that's not the way it worked out. I've had counselling and am now confident for a happy No Kidding future. But I still feel that more openness and honesty would have prevented a lot of extra heartbreak (not to mention a happier bank account).

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  9. I wish that I had started reading posts by those who are CNBC earlier in my journey. I did see it as a "worst case scenario" in the beginning, but I think that as we went further into our treatments I became more critical of the fact that no one ever told us we'd be better off stopping (I mean, 13 cycles of IVF? That seems so excessive now, given we weren't successful) and I submitted myself to a lot of things that I question the merit of. I think if I'd been more open to hearing the voices of those who were failed by the medical industry (and it is TOTALLY an industry, whether individual doctors are empathetic and truly want what's best for you or not -- there is definitely something being sold and some clinics are more ethical about their practices with a vulnerable population than others), maybe I wouldn't have beaten my dead horse quite so bloodily. I am not parenting, but I am not CNBC either, and it's a hard space to be in. I can see how it would feel isolating, and have the pitfall of things becoming us vs them, but I don't see you or the CNBC community that way. I feel it's been a gift to hear this perspective and wish I'd opened myself up to a variety of voices sooner in my journey.

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  10. This is a really fascinating post and then discussion in the comments. Truthfully, other than a few times in the thick of treatment, I found the idea of a vibrant CNBC community comforting during infertility because it meant that no matter what happened, there was a life after infertility. In no way do I mean that to minimize the pain of what you went through and the struggle adjusting to a different life than planned - and I hope this doesn't come across that way. I'm grateful that I knew it was an option from the beginning and I admire your determination to light up the path as it often isn't discussed. I know I benefited greatly from reading early on the discussions of the pitfalls in the fertility industry and feel like that really helped me to set boundaries in treatment (and change doctors when it became clear my first one didn't align with those boundaries). It's also made me much more aware of how much society is geared towards those parenting while unfairly ignoring the contributions of those who are not. I really appreciate your efforts towards inclusiveness and hope to be reciprocating it.

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