Infertility, Stigma, and Reading

Content note: Infertility portrayed in very problematic ways – possibly not the post to read if you’re in a tough place right now.

It’s old news now, but a month or so ago I read the Slate article that has been making the rounds in the infertility community – for good reason, it’s an excellent article hitting up a wide variety of issues and reasons infertility is particularly tricky when it comes to the workplace.  It also gets into how, despite more openness and acceptance for infertility, there’s still a very long way to go.

Since my own experiences with infertility/miscarriage, I’ve definitely noticed storylines or even short bits in books/films/TV relating to adoption/loss/infertility (ALI) far more than I did before.  While infertility is becoming more realistically depicted at times, I’m still somewhat surprised at how often I run across a particular trope that I strongly dislike: that women struggling with infertility/loss are scary.

Perhaps it’s because this came up in two books I read recently: The Alice Network (Kate Quinn) and Daughters of the Lake (Wendy Webb).

The Alice Network is largely about the female spy network that operated during WWI in France, interspersed with a young woman searching for her lost cousin in the wake of her brother’s suicide post WWII.  All the trigger warnings apply on this book both from the ALI perspective (unplanned pregnancies, abortion, loss) and generally (war, torture, Nazis, rape, etc.).  There’s a short bit, however, for a side character that includes infertility.

[Very minor spoiler ahead]

Spy trainer Captain Cameron went to jail because his wife decided to commit insurance fraud to provide for a child she couldn’t conceive.  Her infertility causes her to go to desperate, not entirely sane, lengths.  She conceives and recovers her mind.

[End spoiler]

Honestly, despite how much I was immersed in the rest of the story, this part almost made me put it down because it infuriated me so much.

Shortly thereafter, I picked up Wendy Webb’s Daughters of the Lake, a gothic suspense novel, on sale at some point and finally got around to reading it.  It’s definitely a ghost story, but in a mildly shivery sort of way that I enjoyed (I then promptly picked up a couple of her other books from the library and those descend into terrifying outright horror stories – this one I found much milder).

The novel had a baby/baby loss subplot, however.  Again, the theme of women deranged by loss and not having a child came up toward the end of the book.

Even setting aside artistic license and drama in novels, this Dear Prudence letter headlined “Help!  Sometimes I Worry That My Infertile Friend Wants to Kidnap My Baby” (I would not click over if you’re in a fragile place because yes, this accurately sums up the substance of the letter).  Prudie calls the letter writer’s comment to the friend unkind and gives the letter writer a thorough tongue lashing, but the letter itself definitely displays a truly alarming attitude toward those struggling with infertility.

I am so tired of women struggling to conceive or dealing with loss being portrayed as dangerous or harmful.  Infertility made me feel a lot of emotions.  Sad.  Angry.  Conflicted.  Anxious.  Frustrated.  Jealous.  Certainly these and many more, but while it’s true that I chose not to attend baby showers, disliked pregnancy announcements for the most part, and had to unfollow streams with lots of new baby/child pictures at times, I never wanted to harm anyone.  I never wanted to take anyone’s baby.  I never lost touch with reality.  I never wished that difficulty or sadness would befall anyone.  I’m not going to say that no one was ever disappointed in my reactions or that a few people insisted that I should be visibly overjoyed for pregnant women, but I tried – hard – to be kind and keep my feelings to myself in public.  Mostly because it wasn’t other people’s fault and I knew they weren’t having babies at me.  I just wished it was my turn and that conceiving had been easier (and – not going to lie – highly resented the amount of money we were shelling out for IVF).

This is why I write about infertility, in the hopes that reality will help to dispel some of the more pernicious bits of stigma surrounding this condition.  But it doesn’t help when a scene giving a picture so much to the contrary are popping up in a novel as widely read as The Alice Network.

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Mile Eleven

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About a month after my PCOS diagnosis and before falling fully down the rabbit hole of infertility treatments, I ran a half-marathon.  It was one of those “bucket list” kinds of things I’d begun training for in earnest shortly after we originally began trying to conceive in April because I knew deep down something felt “off” and didn’t want to face it.  I took my running habit, ramped up, and signed the papers to run in November.  If I was wrong, I figured, I’d walk or give my registration to someone else.  In the meantime, the long runs gave me something else to focus on.

The day of the race was a mildly overcast, cool but not cold November day – perfect weather.  I lined up at the start and took off with the other runners.  The first mile was great.  I was excited, my adrenaline was high, and it flew by.

The second and third miles were not so great.  This was the point where I began to realize what I’d gotten myself into and I fought the part of my brain that kept telling me I’d never make it 13.1 miles.  When I passed 3.1 miles, I wondered why I hadn’t just signed up for a nice 5K.  Then I’d be done.  However, as I kept running, mile four felt easier and I started enjoying the thing.

I ran through the countryside.  This particular race tends to be quiet, isolated, and doesn’t have the quantity of spectators or cheering that I’ve read others have.  I ran over country roads, admiring the farmland, enjoying the quiet.  I caught up with an old buddy and ran a mile or so with her, chatting.  Otherwise, however, I was by myself with my i.pod and loving every minute.  Seven miles passed.  I have this.

Then I hit mile eleven.

I really wanted to run the entire race without taking sections to walk.  But as soon as I got into that eleventh mile, it wasn’t merely that I wanted to walk.  I wanted – seriously – to lay down at the side of the road, quit, and let the race organizers come pick me up.  I hit the wall, and I hit it bad.

A combination of factors were probably at play here: eleven miles is a long way to run, it had been a bit since I’d had water or electrolyte replenishment, and in a 13.1 mile race, eleven is right at that nasty spot where I was close to the finish line and yet far enough away not to have the adrenaline rush of being “close”.  It did not matter.  It sucked.

A hill rose up in front of me.  You have got to be kidding me, I thought.  This wasn’t even a real hill.  I grew up in the Blue Ridge Mountains of Virginia, so I know hills.  This was more of a tuft of dirt but the placement infuriated me.  The irritation gave me strength.  I ran up it and finished out mile eleven.

I finished shortly thereafter, just in time to see the winner of the marathon cross the finish line, get some water, and celebrate with Arthur and a few friends and family who had come to cheer me on.  I was glad I had done it and I had managed to complete it my way – without walking a single step, and well under three hours.

~*~

Really, in the vast majority of ways these days, I’m fine.  Happy, really.  Not needing the support the way I once did.  At this point, I love where we are in life and it’s good.

There’s one more embryo, frozen.  Tested.  Waiting.

I’m procrastinating on calling the RE’s office even though Arthur and I have a reasonably solid plan because…well, it opens doors.  It reminds me that I’m not all powerful, that plans fall apart, that doing everything right can still result in heartbreak in both expected and unexpected ways.

I like feeling in control.  I know I’m not, but on a day to day basis, it’s really easy to pretend, to slip into the minutiae and let the illusion remain.  Calling the RE, putting in motion the final plan, means letting go.

It’s time to run mile eleven in this race.  Face the tuft of dirt.  Keep putting one foot in front of the other.

Because the finish line is somewhere close.

This (long-form 😉 ) post has been a part of Microblog Mondays, where the idea is to write in your space, usually a short post but whatever moves you.  If you want to read more, head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

Those Ads

Reading the other day, I came across this article on Slate about ad algorithms, grief, and social media (TW for stillbirth).  Basically, it explores the phenomenon where, post loss, people are still bombarded with ads for baby or pregnancy items when they go online.  It also has the FB shortcut to hide some of these ads but less advice about the vexing problem of FB’s tendency to “celebrate” anniversaries of particular posts.

When it happened to me, I was pretty sure I wasn’t the only one who had it occurring.  I can vividly remember getting baby ads after my first miscarriage because I’d spent time looking up pregnancy-related websites.  It sucked, especially in those first few days after arriving home from the hospital post D&C when I was physically and emotionally achy.

My second loss was a little less problematic in terms of the ads – mostly because I had known something was wrong from the start and my searching had been confined to things like “ectopic pregnancy symptoms” and “really low beta HcG” and “pregnant but bleeding”.

The one that really wrecked me, however, was after E’s birth at 28w4d when I kept getting ads for maternity clothes while she was in the NICU.

The Slate article goes on to talk about why there aren’t better algorithms to prevent these triggering ads: “The real problem is that there’s no quick capitalistic incentive for Face.book to do the work of sorting ads or pictures for you.  As one grieving woman told the Australian website…’There’s no money in miscarriages, obviously.’”

Having walked through infertility and miscarriage, I can’t help but think, as do the women featured in the article, that there really does have to be a better way.

December Updates

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  • I’m working on reestablishing my exercise routine. I hadn’t fully realized how much the lack of movement was affecting my physical strength as well as my mental health.  It’s meant getting much more creative than previously, but I’m really trying to get in 3-4 30 minute sessions of moving (whether that’s walking/jogging outdoors, indoor running, using the mini trampoline, circuit training at home, or actually going to the gym) per week.  Hopefully as my strength improves, I can increase those to 45 minutes or do a 30 minute + a later 15-20 minute session.
  • Speaking of movement and mental health, I’ve long had a personal rule that for the first half of my run, I would think about all the things that were frustrating, angering, or otherwise hacking me off but then for the second half, work on considering more meditative or thankful thoughts (yes, this led to some pretty long runs during infertility since I wasn’t ready to be calm until 2.5-3 miles in!). I’m doing that again and have noticed that I’m less stressed at other times – I know I’m going to have some specific time devoted to worrying/anger/frustration and that helps me to be more functional at other times.
  • We’re decorated for Christmas! I bought a “tree collar” this year – mine’s a wicker thing that covers the base of the tree and a little way up to the bottom branches – that hides the weights I use to prevent the tree from getting accidentally tipped over better than the tree skirt.  It’s amazing, honestly, after years of carving out space that didn’t really exist in our apartments for the tree to have places to put decorations now.
  • Tree Collar
  • Above is tree collar, I can’t seem to get a picture of mine without all kinds of stuff around it :), below are some of my actual decorations
  • I made myself a dress!!!! Not the one I initially started on, but a different one.  The sleeves are slightly wrinkled (ugh) but really, for my first time I set in sleeves and did all of it, I’m pretty proud of how things came out!
  • The original dress is on its way back, however. My aunt saved my rear end after I cut it too small and was able to put in gussets to make up the difference.  I get to hem it. I’m so fortunate to have so many wonderful aunts.
  • I also made myself an infinity scarf with the left-over fabric from a skirt. I gather that animal prints are in this season and I am…not normally an animal print wearer.  However, it’s a nice, lightweight seersucker with zebra stripes and perfect for an easy scarf to add a touch of flair to an outfit.
  • The kids are doing well and growing fast. E is 3 going on 13 😉.  The other day, we finished off a paper towel roll, she held out the cardboard tube and goes “we need to recycle this.”  I told her: “Yeah, but look!  There are so many cool things we can do with this!  We could make a trumpet!” (made trumpeting noises with it).  E stared at me, very unimpressed, and goes “Are you done?  We need to recycle this.”  Ha, and here I thought I had a few years before I became embarrassing to her 😊!
  • The cold is really starting to set in, and I am very thankful for a garage! First time in 13+ years we’ve had one during the winter and it is marvelous.

This post is a part of Microblog Mondays.  If you want more, please check out Stirrup Queens!  Thanks to Mel for originating and hosting.  

Meditations on Moving

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One of the few authors I’ll spring for straight up (instead of waiting at the library or until I find it on sale) is Louise Penny.  I’ve written a few (okay, okay, probably more than a few) times about how much I love Penny’s mystery novels here.  She’s one of the authors writing today that I really want to meet, though I’ll admit that I’m a little terrified that if I did, in fact, meet her, I’d just fan-girl all over the place and embarrass myself.

In any case, Penny’s latest, Kingdom of the Blind came out last week and I’ve spent the last few days reading.  Yet again, I’m struck by Penny’s ability to get to the heart of life, living, and human emotions.  One of my favorite parts of the books are the author’s note at the end, where Penny writes so evocatively about her own life and struggles.  For a number of years, Penny’s husband Michael suffered from dementia and died in 2016.  Penny has also been open about being a recovering alcoholic and the incredible loneliness, anger, and sadness she felt for so long as well as many wonderful things she values in her life now.

“A funny thing happened on my way to not writing this book,” Penny notes, “I started writing.”

“How could I go on when half of me was missing?  I could barely get out of bed.” She continues.  “But then, a few months later, I found myself sitting at the long pine dining table where I always wrote.  Laptop open.”

I relate to that in such a big way.  While I’ve never lost a spouse, I have lost loved ones, as well as other, less tangible bits and pieces along the way.

It’s hard, losing, whatever that loss comprises.  Especially at this time of the year, when everything seems suffused with traditions and the place at the table seems all the more empty than usual.  When it’s impossible not to remember and the commercials and pictures and expectations are designed to evoke emotions that often I’d rather leave in the background or unexamined.

Sometimes living, moving, feels a bit like a betrayal.  With an ache that has the sharpness of a gunshot echoing from 2015 and holes that rend the threads to keep weaving it all together, it feels impossible to tie the knots and work to keep creating.  To set the empty place and also hold the feast.

That’s been a struggle for me lately, even though my grief isn’t new.  I’ve reached that sort of half-mourning stage, where the sadness doesn’t seep into every moment or corner, but comes out at both expected and unexpected times with a startling strength.

I’m grateful to Penny for not denying the darkness, but also for the joy she takes in how moving forward encompasses her loss: “Far from leaving Michael behind, he became even more infused in the books.  All the things we had together came together in Three Pines.  Love, companionship, friendship.  His integrity.  His courage.  Laughter.”

In so many ways, that’s what I’m seeking.  Not to leave behind, but to hold the love and live.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

Infertility Quirks

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When I first went to the fertility clinic to start injected medications, I remember literally choking on something I was drinking when I called the specialty pharmacy and they told me how much foll.istim cost.  It’s still pretty mind-boggling that I only did a spit-take over the cost and then more or less went, “okay, so where do I sign?”  (Back when I was going through it, a vial cost just slightly less than $1 USD for 1 unit of the drug.  And if I bought the smaller size vial, the vial was usually overfilled by about 30-50 units, so it brought the cost down slightly.  But yes, a *lot* of money.)

Anyhow, this induced a really bizarre association in my brain that persists to this day: I measure the cost of just about everything in terms of how much infertility treatment cost.

New couch?  About one to one and a half vials.

New flooring? Around the cost of the drugs for two fresh IVF cycles.

Chimney cap? About the cost of clinic fees for a TI cycle.

Down payment on a house?  About two fresh IVF cycles plus the FET thrown in.

This last was particularly good when the mortgage banker gave us a sort of startled look after he quipped about the down payment being the biggest check most people ever write and I just started laughing.  It wasn’t really funny, but it was either laugh or cry.

The kicker in all of this was that when we wrote the checks for house-related stuff, it was a guarantee – we were actually getting a house, the flooring had a delivery date scheduled, and we could look at samples and touch fabrics for couches.  We weren’t paying for a 25% chance that we’d get the house or a 30-50% chance that the flooring would come.

There’s still a sense of unreality about every check I wrote during infertility, especially now, pitted against the tangible things that money can buy.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

 

 

Thinking Through my IVF/RE Experiences: Part 2

This is the second part of my coming to terms with my IVF/infertility treatment experiences, picking up when I switched doctors.  Read Part One here.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What was the difference between the first and second RE?

I switched because my second RE was the doctor who “officially” diagnosed my miscarriage.  He was kind and compassionate through that awful moment and promised that he would *personally* talk to my OB/GYN to help arrange the D&C.  I was super surprised the next day when my OB/GYN told me that 2nd RE had, in fact, actually called and talked to OB/GYN.  It was probably one of the first times I’d been promised something in that office and it actually happened.

I mean, that was the biggest difference.  2nd RE actually followed through on his word consistently.

I also appreciated the fact that 2nd RE wasn’t nearly as uncomfortable with the really strong emotions that come with IVF as 1st RE (2nd RE was a lot younger than 1st RE, so I wonder if that played a role).  After my ectopic/miscarriage (following my FET), I walked in for the follow up appointment loaded for bear, so to speak.  I cried for pretty much an hour plus, and I really appreciate that he didn’t try to cut me off or tell me that it was okay, we could try again.  He told me that it made total sense that I was upset, that we did need to take a break at this point.  Also, he was in favor of limiting the number of IVFs – 3 fresh was his personal max in my situation, and as he put it, that was only if we wanted to go that far at all.  It was helpful to hear that he wasn’t advocating for more and more and more and that it was okay to say enough.  In that follow-up, we decided we’d do one more round of fresh IVF, but if that failed, we were probably done.  He supported that decision.

2nd RE also was willing to try things that helped me get through.  I asked, prior to my FET, if my embryos could be grown out to blastocyst stage (they were frozen at 3-day) prior to transfer – and if they couldn’t get that far, then at least I’d be spared the 2 week wait.  Even though this wasn’t clinic protocol, he was fine with that.  He also would call me personally if things were changing/not going well/etc.

Did things go perfectly after that?

No, I mean, there were still communication issues at times between staff in the clinic, but it was better.

What helped?

I mean, honestly, it’s amazing how far listening and basic compassion goes.  Don’t sell false hope.  Follow through on your promises.  Keep in communication with patients.  Respect limits and boundaries.  None of this is reinventing the wheel – it’s stuff clinicians should be doing.  Unfortunately, it’s time consuming, and I think this is where problems come up.  My clinic offered a complimentary session with an infertility counselor with IVF, but it’s not really enough.  It’s not something that can be entirely outsourced – the doctors and staff at clinics have to be involved.

One thing 2nd RE did that I found helpful was that he gave me his personal work email – the one that went directly to him.  Funny enough, I never wound up using it.  But it took a HUGE load off me mentally to know that if I had one of those questions that wasn’t serious enough to call the on-call physician at 2am but was bothering me, I could send an email.  It also helped to know I could contact him using my own words and not have to rely on someone else passing the message along.

Also, when 2nd RE had bad or mixed news, he would sit down with us – I mean, physically, sit down.  I know this sounds sort of strange, but it helped because he wasn’t sort of “standing over” us and could make eye contact that way.

What are some thoughts on clinics and the experience?

I think one thing I would say to infertility clinics/staff is that even a single failed cycle, whether that’s IVF, IUI, whatever, can represent an enormous loss to the patient.  It’s time lost, emotional endurance lost, and as crass as it feels to mention money, it can be a big financial loss.  I mean, a single cycle of IUI or TI with injected fertility meds for me cost around $800-$2500, plus the time and emotion that goes into it.  Even clom.id or fem.ara, with timed intercourse, while cheaper, still ran about $150-$300 including the ultrasounds.  That’s not impossible, but it’s not an inconsiderable expense either.  By the time my husband and I got through infertility treatments, we had spent >$40,000.  For perspective, we spent about as much on a down payment for a 4-bedroom house + some new furniture + some new flooring.  We don’t live in a super expensive area, admittedly, but it’s still a boggling comparison.  Having a cycle fail doesn’t just mean all the emotional losses (which are considerable as well) but also a sickening amount of money and financial stability in many cases.

I was really grateful when the fertility clinic I used took down all the baby collages that patients could see.  I’m fine with clinics having stuff like that in strictly staff-only areas, but I remember really clearly passing the “baby board” with my miscarried fetus still hanging out in my uterus and feeling like someone had kicked me in the face.  I did not find it “hopeful” or helpful to have those out.  It made me feel like a defective failure.

It would also be nice to see “success” and “failure” re-defined when it comes to infertility.  I’m not a “success” because I had kids – I have absolutely no idea how I managed to pull that one out.  In other words, it’s not because I did something “right” or “wrong”, it’s just how things worked out.  Likewise, I wasn’t a failure when my cycles weren’t working and I miscarried twice in a row.  I would love to see clinics be much more mindful of patients as whole human beings who have intrinsic worth and dignity regardless of whether or not they have children.  I view success – when it comes to infertility – to be comprised of having a life one considers full and meaningful no matter what that looks like.  Basically, coming out on the other side is a huge victory.