As I stood in the shower this morning, lathering up that extra layer of flab I’m pretending is all the 8oz baby’s fault, my mind started to wander. If I am truly and brutally honest with myself, I never thought I’d see this day. For all the invasive procedures, the doctors’ visits, the support group cheerleading, the advocacy work and fundraising – I honestly never thought we’d get here. Failure to conceive and maintain a lasting pregnancy had become the expected outcome; dreams of baby showers, bedtime stories, and school plays had long since ceased being something I visualized. As that realization hit this morning, I found myself asking, “Then why did you keep going?” This post is an attempt to figure that out. And, furthermore, an examination of why I think this story – our story – is more the fault of our society’s medical status quo, than it is of my own damaged body.
First and foremost, treatments are what we knew. Some go to the spa, some go out to brunch, I made 5am drives to the RE for a probe and a poke. I knew where I’d risk getting trapped behind a school bus, I knew where the roads tended to be iciest, and I knew I’d get my bagel at the bagel shop on my drive home. The power of routines is nothing to scoff at. In a strange way, infertility and infertility treatments provided much normalcy and structure to my life. As I dug through my wallet this weekend looking for an under-used store rewards card, I found the “frequent customer” card for that bagel shop 50 minutes from home. I immediately wanted a bagel, wanted a stamp on my card, but realized I’d rarely have reason to go back. The drive to my OB (and new MFM) follows a slightly different route than the drive to the RE. I’ve had to learn new rest stops, learn new quick food options, learn new road conditions. Not only has the adjustment been huge, but so has the unpredictability of its coming. A sticky pregnancy has made me learn a new routine, and this has come long before the normal new parent routine changes we’re all conditioned to expect.
And, if the daily minutiae of infertility treatments were familiar, then defining myself through heartache and resiliency was its macro-level bedfellow. Infertility gave me a purpose that my life was largely lacking. I found some sense of self in my career, I enjoyed my friends and family, but when we started this journey I was, like most other 20-somethings, focusing on the things that life could give me, not that I could give it. I mean, simple case in point, I wanted to be granted the gift of becoming pregnant, delivering a healthy child, and parenting that child for the rest of my life. I wanted life to give me something. For all I revere it, the act of procreating is most certainly selfish and driven by a desire to get what we want. I don’t, in any way, think that should take away from the fact that determining when and how we reproduce should be a basic human right that we all get to work out for ourselves, but making mirror images of ourselves has an undeniable element of narcissism about it. So, when infertility struck, I was so very, very lost. Why couldn’t I have what I wanted? Hadn’t I earned it? Surely I earned it more than that terrible parent I saw in Target or my cousin who said “I do” all of thirty seconds ago. Why was the world making me suffer?
I have no answers for any of those questions, but I’m at peace because I simply stopped asking them. No, this post isn’t going to take a turn for “If you just have hope and baby dust” territory, but I am going to be fairly blunt about the fact that asking questions about why you aren’t getting what you “deserve” is just kinda masochistically futile. You’ll never have an answer; there is no answer; life sucks, then you die. K? Somewhere along the way, right around the time of my suspected ectopic pregnancy in 2011, selfishness propelled me to something amazing. Out of a desperate attempt to feel less alone, I went to a professionally-led RESOLVE support group. Then a peer-led support group an hour from home. Then, finally, I started my own. And, just recently, I’ve become a peer-led support group coordinator for my state. At the same time, relationships I established with faceless Internet strangers on an fertility-focused support forum, transitioned away from the anonymous forums to Facebook. These women went from familiar avatars, to close personal friends and confidants. In 2012 we signed up for our first Walk of Hope, and we returned again in 2013 despite moving far away from the walk location. Though this little one’s arrival will keep us sidelined from the Walk and Advocacy Day this year, my thoughts (and some dollars and constituent calls) will be with the women and men who fill our shoes. And, finally, following my last miscarriage, I started this blog and found a new voice on Twitter. When we started trying to conceive in 2010, I was desperately seeking an identity as “mother.” In that time, I’ve found an identity far different than the one I expected, but one that still fills me with just as much pride and sense of accomplishment. So, why did we keep going, even when the hope was gone? I’d convinced myself this wasn’t just my fight, and, with the help of countless women and men, I kept on trucking.
Finally, I just wasn’t willing to give up on my health. What started out as a drive for pregnancy, quickly turned into a battle for diagnoses, treatment, and health. Though by no means a universal experience, my infertility has been inextricably linked to my health almost from day one. I pushed harder than I thought I could push to get my Hashi’s diagnosis, because treating my raging thyroid disease might help me get pregnant. I demanded a PCOS diagnosis (and the Metformin/Synthroid combo that brought me to a weight I hadn’t seen since middle school) because doing so might help me get pregnant. I marched into my REs office and insisted on laparoscopic surgery to diagnose my endometriosis because I refused to endure another assumed ectopic. We drove 6 hours one snowy February morning for a 45 minute appointment with a Reproductive Immunologist to investigate my wonky immune system because I needed to know I’d done everything in my power to save my failing third pregnancy. I’m bracing myself for April’s consult with a new rheumatologist because this little man deserves to have the healthiest mama he can get. My health was always the elephant in the room keeping me from stopping treatments, even as my ability to sustain myself emotionally through all the failures precipitously declined. Each miscarriage was diagnostic and every failed cycle provided more insight into what was wrong with my body. No one should have to sacrifice their children in order to improve their health, but it was a devil’s bargain I’d become accustomed to. And, it’s a thought that’s been on my mind a lot lately, and was a central theme of my counseling appointment today. When there’s no longer a goal in site – when the dream of pregnancy and parenthood has been achieved – what will be left to propel me toward answers to my medical mysteries? When I no longer find myself in a practitioner’s waiting room once a week, who will be tracking my progress or decline? When the realities of parenting a newborn hit, will I have the ability or the energy to differentiate normal new parent fatigue from complete autoimmune misfire? These questions are also ones not worth asking in this moment, but they’re ones worth acknowledging nevertheless. I kept turning to infertility treatments because I was afraid of turning away from treatments that might improve my health and well-being.
So, finally, the crux. Infertility and infertility treatments pose a risk to three aspects of your life: your emotional, physical, and financial well-being. For me, the physical was surmountable. The surgeries, the miscarriages, and the injections were worth it, as each one brought answers. And, usually, the physical pain of infertility was nothing compared to the pain of living my life before becoming aware of and treating my health issues. The contractions of my 9 week miscarriage were intense, but I was prepared for them after 15 years of endometriosis-related menstrual cramping that, prior to my first referral to an RE, had always been passed off as evidence that I simply had a low pain thresh hold. The discomfort of recovery from two laparoscopic surgeries was worth it tenfold for the improved bowel function, pain relief, and sexual desire each surgery brought with it. Taking as many as 25 pills a day in my mid-twenties was a small price to pay to regain a metabolism that didn’t translate a 1000 calorie a day diet into constant weight gain. And, even fertility-specific medications like gonal-f and menopur were worth it since, for the first time in my life, they brought predictable-length cycles, and didn’t leave me anovulatory and searching for my period for 8+ months.
While I won’t be nearly so quick to pass off the financial as no great burden, I will note here that we were relatively “lucky.” (And, it’s only through my close proximity to this community and my IF Stockholm syndrome that I’m even remotely able to describe our financial situation as “lucky.”) My first insurance covered diagnostics, and, after a targeted national job search, my second insurer was required, by state mandate, to cover treatments and meds for everything up to IUI. So, while it’s the one thing that we’ve never been insured for that has granted me this pregnancy – IVF – I was able to make my insurance work for me most of the time. I garnered my diagnoses on the cheap, including a laparoscopy that we risked paying out-of-pocket for had I not been found to have endo. I used my state-mandated meds/IUI coverage to stockpile extra meds for our IVF cycle. And, we went to a clinic with some of the nation’s lowest prices for IVF when it came to that. So, while we’ve easily shelled out close to $20,000 in the past 4.5 years, most of that is come in the form of co-pays and deductibles for insurance-covered services. And, on top of that, we’ve maxed out (and promptly spent) our flexible spending accounts whenever possible to ensure those out-of-pocket expenses came pre-tax from our employers. It could have been much worse.
Where the financial truly hurt us? Where the physical really stung? It’s where both intersected with the emotional. The emotional toll was crippling. The emotional stole our hope and joy. The emotional made us decide that child-free was preferable to continuing to go around in the same circles again and again and again. And, contrary to what you might initially expect, entities outside ourselves can be held responsible for this emotional toll.
Published in yesterday’s New York Times, Ann Carnn’s “Meeting the Cost of Conceiving” is a a relatively simple financial piece that isn’t all that groundbreaking to anyone that’s taken their turn on the IF roller coaster. But, re-reading the article today, after first clicking over to it from RESOLVE’s Facebook page yesterday, I think that article is the reason I found myself asking this morning, “Why did we keep going?” And, now, I can’t help but find myself rephrasing the question as, “Why did we get to the point where stopping seemed preferable to continuing on?” My answer is hidden in bits and pieces of Carrn’s article. In her awkwardly placed single-sentence closing paragraph reading, “Yet, just a small proportion of women who suffer from infertility use [IVF].” In fertility specialist Dr. G. David Adamson’s opinion that, “Cost is a problem,” and, as Carrn’s continues, “not because I.V.F. itself is necessarily more expensive than other highly technical medical procedures […] but because most insurance policies don’t cover it.” Each step along the way we were forced to ask ourselves whether we could keep it up, quite simply because the expectation of our insurers and our medical system was that we shouldn’t. We kept finding ourselves asking at what point were we willing to trade in the routine, the identity, and the battle – the trips to the bagel shop, the sense of belonging to a community, and the path to improved health – for the path our employers, insurers, doctors, and government expected of us. When would the emotional toll of being stuck in a perpetual fight be greater than the toll of living childfree? We got awfully close, and I still tend to blame my country, my doctors, my employers, and my insurer for that.
When, in 2002, my mom decided to wave the white flag, cease all treatments, and allow cancer to take her, she did so because it was the path she physically and emotionally preferred. Her insurer never told her she wasn’t worth it. Her friends never asked her why she didn’t “just” stop wanting to be
pregnant alive. And, we, her family, didn’t doubt her when she said he mind was made up. She was given the peace, the space, and the support to make the hardest decision she would ever have to make. I’d be lying if I didn’t say that her decision hurt 19-year-old me, but, looking back now, I love her all the more for the strength she showed in her final months. Our flirtation with ceasing treatment had none of those aspects to it. Our insurance checked out, our family shook their heads and talked in hushed tones about the money we were spending, and we were asked at every turn to justify our decisions. To reconfigure Carnn’s quote above, not because infertility is itself more difficult to treat than cancer, but because most insurance policies and random strangers don’t find it worthy. Run your head into that wall every day for 4.5 years and, even under the most forgiving of physical and financial situations, you can see how the emotions might finally give out on you. Or, at least, how they started to give out on us.
IVF is not for everyone, and IVF is not a guarantee. But, as long as just a “small proportion” of infertiles have access to IVF, the emotional toll of infertility will continue to call the shots. As long as women endure cycle after failed cycle of cheap procedures with far lower odds of success, the emotional aspect will take center stage. As long as miscarriages are treated as diagnostic, at best, and “bad luck,” at worst, the emotions will cloud all judgement. As long as reproductive choice (including the choice to reproduce) remains politicized, many infertiles will find their lack of choices leading them down a path of “Why do I even bother?”