Ticket In Hand

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We had our RE consult today and it did not take me long to realize that in the fast-moving world of reproductive endocrinology, I’m definitely a blast from the past.

When I did my first FET cycle in early 2014, I used Lup.ron, oral estrogen, PIO, baby aspirin, a short burst of Medrol, and valium for the transfer.  Today, the FET we’ll undertake in September/October will involve injected estrogen every four days, PIO twice a day (!), dexamethasone, baby aspirin, medrol, and predisone.

My response: “I JUST got feeling back in all the areas of my butt and now PIO is TWICE A DAY?!”

Apparently, this protocol results in much higher implantation rates.  Dr. E explained that there’s too much variability with oral estrogen to be comfortable – apparently some women really struggle to get levels high enough even with high doses – but with the injections, it’s been much more consistent.  The steroids lower the immune system a bit to allow the embryo to implant and the different types plus longer dose periods than before seem to really help this process more effectively.  No more valium for transfer either.  Two days of taking it easy, like before.

I asked how likely the blastocyst we have in storage was to thaw properly and Dr. E told us since it’s frozen with the newer cryopreservation methods, it’s around 98% certain that we’ll have a transfer.

I am…a little overwhelmed, to be honest.  Not so much by the protocol itself (though it certainly is different than any other fertility protocol I’ve undertaken) but simply by the fact that this is it.  As weird and f—ed up as this sounds, the RE’s office and fertility treatments and reproduction (or lack thereof) have been this huge part of my life for about seven years.  Whether or not this FET or anything else results in a pregnancy, my reproductive years are coming to a close.

I won’t miss the worry, the miscarriages, the fertility treatments, the incredible sadness of failed cycles, the two-week wait, or any of that stuff.  Infertility, high-risk pregnancy, loss, and NICU inflicted real wounds that are still healing and scars that still ache at times.

But there were silver linings that I couldn’t appreciate in the trenches.  Dealing with infertility and the associated complications also moved me from being someone who looked over her shoulder for another person when someone asked for an adult to someone who says “here, me, I’m an adult”.  I can battle with a ferocity I didn’t know was possible and also know when it’s time to walk away from a fight.  I know how to talk to an insurance company, how to marshal my resources, and who to call.

It’s more that I’m letting go of something that consumed vast amounts of time, resources, emotions, and despite the fact that this is, inherently, not a bad thing, it’s a change and a door closing.  It’s moving into an entirely different landscape – where I won’t chart my cycle, pee on OPKs, alternately (depending on where I am in an attempt to get pregnant) hope for or dread my period, or take pregnancy tests.  I’ll get rid of the maternity clothes and the baby stuff.  Labor and Delivery will go back to being a department with no more significance to me than Endoscopy or Medical-Surgical.  I’ll change into whatever lies ahead and deal with it, hopefully gracefully.

It’s strange, though, being here.  It’s like waiting in an airport, ticket in hand, and not knowing exactly where I’m going next or how many transfers or bits of lost luggage, but knowing that my flight will depart soon for somewhere.

This post has been a part of Microblog Mondays.  If you want more, please visit Stirrup Queens‘ blog.  Thanks to Mel for originating and hosting.

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Luck

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Ever since I called my RE’s office to set up the series of appointments to lead up to the final transfer, it’s been on my mind a lot.

Like, a lot.  As in a truly ridiculous amount.

I think a big part of it is the unknown aspect to the thing.  I’m truly privileged in the infertility world with my kids and can be happy whatever way life takes me, but the not-knowing part bothers me.  The other part that tends to get under my skin is that – other than showing up and taking medications as ordered – I have no real control over the outcome.

On the spectrum between the laid-back people and the iron-fisted control people, I am definitely a control freak.  Some of this stems from anxiety (as in the diagnosed type).  My brain has a not-so-marvelous tendency towards getting stuck and panic attacks.  I like predictability, stability, and known quantities – and privilege has allowed me some insulation from the unpredictability of life in other areas.  This, I suspect, is why infertility in general has messed with my sense of self so much.

Earlier this week, I ran across an article about socioeconomic privilege entitled The Radical Moral Implications of Luck in Human Life: Acknowledging the role of luck is the secular equivalent of a religious awakening.  Author David Roberts states: “It’s not difficult to see why many people take offense when reminded of their luck, especially those who have received the most. Allowing for luck can dent our self-conception. It can diminish our sense of control. It opens up all kinds of uncomfortable questions about obligations to other, less fortunate people.”

Infertility is nothing if not one giant game of luck.  Diagnoses, lack of diagnoses, economic status to pursue treatment or adoption, one partner or both, what doctors/labs one has access to, the quality/growth of embryos, whether or not those embryos implant, miscarriages, emotional resources – none of these are really factors individuals have control over.  Heck, when pursuing treatment, I know I don’t even have control over when I have to be at the clinic during cycles.

Acknowledging how little control I really have over my life circumstances – and how much good luck has played a role – is a bit unnerving.  Roberts points out in his article that “I get why people bridle at this point. They want credit for their achievements and for their better qualities. As Varney said, it can be insulting to be told that one’s success is in large part a lucky roll of the dice.”

It feels like – given the sums of money, emotion, and time that are in play during treatment – the outcome should be more predictable.  That anyone who rolls the dice (or wants to roll the dice) at anything related to infertility should be rewarded commensurately.

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

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.  

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.

Thinking Through My IVF/RE Experiences: Part 1

Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general.  It’s proved trickier than I thought.  Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions.  Some of it is that it seems like something I should be over.  A big part of it is survivor’s guilt.  I mean, I have kids at this point, so it seems sort of ridiculous to complain.

And yet, parts of this story still bother me because they should not have happened.  In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head.  I was all about acknowledging that something had happened, but also sort of glossing over at the same time.  At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.

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

What went wrong with the first RE?

I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around.  He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”

I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that.  Because here was a guy who was confident and felt good about the whole situation.  He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).

Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen.  So I had a cancelled cycle and had to rest on birth control for a month.  The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well.  I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit.  I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back.  It was late June by this time.

My doctor was hard to schedule with because he was “so busy” according to the clinic.  We agreed to a phone consult.  My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle.  “Good,” I told him, “because my period is starting.”  We booked the next cycle and I started shortly thereafter.  A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation.  I was furious.

The July cycle went wonderfully, a really good stim, but I didn’t get pregnant.  I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised.  He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much.  He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally.  My husband was certain he’d heard the doctor say that too.

We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled.  It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably.  I was going in a lot for monitoring.  We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy.  I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF.  I had planned to possibly do the IVF in February or March of the next year and settle into my new job.  “We could get you in this fall,” my doctor told me.  Because I really, really wanted to be pregnant, I agreed.  I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds.  He told me to plan to take one day off for egg retrieval and two days for transfer.

A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending.  My job involves a lot of lifting and bending.  I just about hit the roof.  But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle.  We had already scraped together the money and I was desperate.  I made a poor choice and went ahead.

The cycle proceeded, I was very anxious, and 15 eggs were retrieved.  The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours.  I had to leave partway through the shift because I was in so much pain.  Two 3-day embryos were transferred, 2 were frozen, and I went home to wait.  I had my beta a day early because my husband and I were both off work that day.  Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me.  I appreciated that enormously.

Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low.  But it doubled appropriately, then exploded.  Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all.  Nothing.  No tender breasts, no nausea, nothing.  When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat.  The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on.  Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other.  He was effusive, excited, and told me to send him photos.

The bad feeling never went away.  Finally one weekend, I found myself almost hysterical with anxiety.  I knew something was wrong.  I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day).  I remember feeling the cold wash over when I saw the baby come into view.  I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.

My doctor never called.  Never said a word.  Never told me how sorry he was that I’d miscarried.

Do you blame your first RE for the miscarriage?

Not at all.  I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.

In hindsight, are there some things you would have done differently?

I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing.  I work in healthcare.  It is totally good for healthcare workers to take breaks, vacations, etc.  I absolutely support that need.  I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that.  There is absolutely nothing wrong with taking vacation.  But I had/have a huge problem with the dishonesty.  The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.

I really regret not putting the brakes on that first IVF cycle.  It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.

I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.

One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up).  I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office).  But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.

What are some things you would have wanted to see from your first RE?

The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths.  I know, unfortunately, exactly what my chalkboard would say:

“Not one %$#%& thing.  Absolute silence.”

It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard.  I’m so sorry for your loss.”  This is basic.  It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.

I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF.  He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job).  I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down.  I was in a lot of pain as a result.

Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say.  It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.

He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life.  These were reasonable questions on my part and should have been treated/answered seriously.

 

Planning to have Part 2 coming soon…

Flipping The Script: Solidarity, not Pressure

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When I was actively going through infertility and treatment, I heard a lot of stories.  I think everyone who goes through any sort of medical or social crisis hears stuff like this, you know, the “the doctors told them they’d never get pregnant/recover/etc., but they did!”  Sometimes this was helpful, particularly when related firsthand by the person the story had happened to, and often, those storytellers (whether in person or on blogs) would point out that while it had worked for them, they knew it wasn’t necessarily going to work that way for others.  It was solidarity, not inspiration.

Unfortunately, this wasn’t always the case.  Sometimes the stories were told more prescriptively (often by people that they hadn’t happened to), in the “if you just hang on, it will happen!” or “if you do _______, you’ll have a baby!”  Often, it occurred when I was already beating myself up and wondering what I could have done differently or when we were making painful decisions whether or not to continue treatment.  Those stories made me feel guilty, my decisions unaccepted, and left me second-guessing whether or not I’d done “enough”.

I’ve lurked this year for National Infertility Awareness Week, mostly because reading everyone else’s blog posts proved interesting and the topic – “Flip the Script” – is one I’ve had to mull over a bit.  Finally, though, I’ve realized the script I want to flip: be careful with stories.

A couple of years ago, I realized I’d become that cliché, walking urban legend of infertility stories: IVF works on the third embryo transfer after losses, rare, tragic complications, and out of that, a beautiful, healthy child.  Getting spontaneously pregnant with my second with no interventions or treatments only added to it.

I’m grateful for how things worked out.  But it is by the most bizarre circumstances and strange, against-the-odds events that I am where I am in life right now.  There is absolutely nothing that is able to be generalized to someone else struggling with infertility.

It’s not because of my hard work.  It’s not because of my persistence.  It’s not because I’m somehow “special”.  It’s not because of my good attitude or positive thinking (please, ask anyone in my life – I did not accept infertility/PCOS with any grace whatsoever, still dislike many pregnancy announcements/going to other people’s baby showers except under special circumstances, and hated pretty much every moment of treatment).  It’s not because of “baby dust”.  It’s not because I deserved it more than anyone else.

Truthfully, I have no idea why things worked out the way they did.  I’m grateful, but I really don’t have an answer to the “why/how”.  And I resent the idea that if things had not worked, I would have been any less worthy.

Basically, what I’m saying is this: I hope no one (including me) ever uses my story as a cudgel or as a prescription or as a “this could be you too if you just keep trying!”  Because anyone who is struggling with infertility, needs to take a break, or needs to consider their options (including resolving without children), does not need that pressure or guilt.  It’s great to tell our stories and truths.  But there’s a way to do it without generalizing out-of-the-ordinary happenings to others or giving false hope.

Let’s flip that script, straight up.

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.