TO JOSH, who always knows the right words, position one, and position two
TO THE CHICKIENOB AND WOLVOG, who are my heart, for your warm keppies and the double shnuzzles
WELCOME TO THE LAND OF IF.
I know, those are probably six words you never particularly wanted to hear. You don’t want to be here on this strange island. And if you’ve just disembarked, you’re probably a tad confused. Even if you’ve long known you were destined to show up here, you probably are surprised by the atmosphere. It’s not really a little-umbrella-in-your-drink sort of island. It smells of rubbing alcohol. It’s littered with garbage cans packed to the brim with sanitary napkins. And it’s populated with tense-looking men and anxious-looking women. It’s hard to ignore one of the worst parts about this island: It’s situated so close to the mainland—you can see it over the horizon on a clear day. But even though there are daily departures, and even though it’s easy enough to end up here, it takes plenty of effort to get out.
The Land of If got its name not only because IF is the abbreviation for “infertility” in the online world but also because there are so many ifs inherent in being here. There are what ifs and if onlys and if this, then thats. If (there’s that word again!) you are accustomed to having a pretty tight rein on your life—accustomed to working hard and seeing the desired outcome, or being able to predict what comes next—the Land of If is going to be a particularly difficult stopover for you. Being here is all about living in uncertainty and doubt and wonder and hope: If only I had gone to the doctor earlier. What if I hadn’t bought my husband that package of tight briefs from Costco? What if my wife hadn’t laid out our adoption profile to look like a scrapbooking-store explosion? If I go past the baby aisle at Target, then I will have a nervous breakdown between the onesies and binkies.
I, for one, was shocked—shocked!—when I ended up here. Why was I shocked? I have no idea: My mother experienced eleven years of infertility while building her family. But, strangely, I believed that I would be fertile, and for much of my life, I knew next to nothing about infertility and pregnancy loss. I had absolutely no understanding of assisted reproductive technology (ART), either. In fact, the first time I met a child born through IVF (in vitro fertilization), I pitied him for what he had to go through as a fetus, pressing his tiny face up against the glass of his test tube, just to get the attention of the man in the white lab coat.
When my husband, Josh, and I decided, in the merry month of June, to conceive, I was so giddy that I started right away with plans for a February baby. But instead, February brought my husband and me the first diagnostic piece of our infertility puzzle: My progesterone was low. So we started treating that (with progesterone suppositories), but then other problems cropped up, until we had a final, but vague, diagnosis: “female-factor infertility.”
Vague though it may sound, we’re some of the lucky ones, because we actually have an understanding of what brought us to this island. There are plenty of inhabitants—maybe even you—who will never know what brought them to the Land of If. And that is just another one of the frustrating aspects of this place (along with the fact that there are no drinks with umbrellas): the lack of answers, or how the answers can lead to more questions.
With so many unknowns, your stay in the Land of If will probably be rife with uneasiness, but you can rest assured about one thing: For better or worse, your tour guide (that is, me) knows this territory very, very well. I’ve done my time here. I have experienced early loss, treatments, pregnancy, and preterm childbirth.
That said . . . one or two experiences cannot possibly be enough to get you through all of the nooks and crannies of this island. There are plenty of aspects of infertility and loss that I haven’t experienced firsthand. But the inhabitants of the Land of If are a helpful bunch, and, like a giant pot of stone soup, this book came together based on the experiences of numerous men and women. They gave me the kind of invaluable information this book is packed with—the kind of information that comes from tons and tons of personal experience.
Sure, the medical professionals I dealt with were all very helpful in giving me a basic understanding of my medications and the procedures I would eventually undergo. But it was information posted by others like me, on bulletin boards and blogs, that really provided me with a higher education in infertility. Sure, it was a nurse who taught me how to give myself an injection. But it was a fellow Iffer who taught me how to make that injection less painful. Sure, my reproductive endocrinologist (RE) made decisions based on my test results, but it was a fellow stirrup queen who gave me a list of what kind of questions to ask, and which tests to request.
Now, don’t get me wrong: Doctors have those initials after their name for a reason. They know their stuff, and before you act on any advice (including the advice found here), you should always check with your doctor. In fact, all medical information in this book was reviewed by a doctor.
THERE ARE PLENTY of guides out there that focus on treading the four paths leading out of the Land of If—books on adoption, treatments, third-party reproduction, and choosing to live child-free. And although this book definitely covers those four paths, its focus is not on how to leave this island, but on how to live on it . . . at least for now.
In addition to providing you with tons of insider information, Navigating the Land of If will give you the words to explain your crazy, complex emotions to people who’ve never been here before. It will give you the practical tools and confidence you need to be your own advocate and make decisions that work for you.
And in between those tough choices is the waiting: waiting to cycle, waiting to see the reproductive endocrinologist, waiting to see if you’re pregnant, waiting to be chosen, waiting for a referral. All of that waiting could drive you insane, or at least could make you obsessive, spending hours Googling early pregnancy symptoms. Lucky for you, there’s this book to coax you back into living life while waiting in limbo.
It will give you great excuses—both fake and real—for dodging other people’s baby showers or leaving work for a 10:00 AM insemination. It will help you respond to pregnancy announcements with feigned or real happiness. It will help you gauge how much of your infertility news to spread, and to whom. Mercifully, it will give you plenty of great advice on staving off unsolicited or bad advice, and tons of tips on how to nip rude remarks in the bud. It will help you keep track of your own hormone levels, introduce you to the online and offline hangouts of other Iffers, and teach you the ins and outs of Iffish—that strange language composed of multisyllabic, impossible-to-pronounce medical terms and mysterious abbreviations.
But I can see that you’re getting overwhelmed. That happens to people when they first get here—hell, it happens even if you’ve lived here for five years. Let’s grab our backpacks and get started on moving around the island in a methodical manner. I’ll take you around each neighborhood until you start figuring out the roads on your own. My hope is that you never get too familiar with this land, that your stay here is as brief and painless as possible. But while you’re here, you should know that you have a friend, in book form, to turn to in the middle of the night, when the sea monsters offshore start howling and you just wish you were home.
I REMEMBER WHEN my friend Alex and I traveled to Siena, Italy, in the heart of Tuscany. Tired but excited, we exited the bus terminal and dragged our wobbling suitcases over the cobblestone roads. We were relatively confident about our surroundings: On the plane, we’d read several guidebooks and had practically memorized a map of the town center. We got our bags to our room and went out to wander the streets. And after a couple of hours, we found a great little place for dinner. Our waiter came to our table and, seeing we were foreigners, asked us where we were staying. We told him.
“That place?” he scoffed, slamming my gnocchi on the table. “That neighborhood is merda! You should be staying here! We won the Palio two years ago!”
Even though we thought we’d done our homework, we didn’t realize that although the people living in the city’s seventeen neighborhoods enjoyed a collective sense of being Sienese, they also were engaged in a distinct kind of rivalry.
Unfortunately, that’s sort of like the rivalry you’ll probably encounter between the many neighborhoods of infertility: primary vs. secondary, biological vs. situational, and infertility vs. recurrent loss. Some of that divisiveness comes from the inhabitants of If themselves, but a good deal of it is due to hospitals, clinics, insurance companies, and adoption agencies, which tend to impose their rules on the Land of If as if they were some sort of colonial government. These establishments are sometimes so out of touch with the reality of living in the Land of If, and are oftentimes so focused on making money from the colonists, that they make life on the island even more difficult.
For example, fertility treatments are rarely covered by insurance companies, and currently, only twelve states have mandated coverage (an additional three have mandate-to-offer established).1 The insurance companies’ biggest argument against covering treatments is that they are not medically necessary. Granted, most reproductive endocrinologists and fertility doctors disagree with this outlook . . . but they’re not paying your bills, are they?
And that’s only the beginning (see the sidebar “Access: Denied,” in this chapter).
As if the bureaucracy weren’t enough, there are self-created internal tensions as well. Those experiencing primary infertility might think they have it worse than those experiencing secondary infertility; those with female factor may think their problems trump those with male factor. And you’ll hear more about this kind of thing in the following sections.
That said, the level of support and community that I have found in the infertile world exceeds anything I have ever found in other aspects of life. People here are willing to share personal information, hold out a Kleenex, and pass along cheap dinnerware to throw against the wall. On our worst days, our community is on its best behavior: Divisiveness goes out the window, and the various neighborhoods come together in unity to offer support.
I wish it were that way every day, so allow your tour guide this little rant while we pause and consider the scenery:
People of all kinds end up in the Land of If. And whatever your actual reasons for being here, in the larger scope of things, it doesn’t matter. Over here, we’re all Iffers. Now, perhaps you agree with that concept in theory, but secretly, you still harbor some resentment toward certain islanders who—as far as you’re concerned—don’t have it “quite so bad” as you do.
Let me be very clear on this point: I am officially declaring a boycott of the Pain Olympics. It doesn’t matter what brought you to the stirrups or the donation rooms: Lying naked in a cold room with a full bladder and only a thin sheet of paper for a blanket sucks. So does trying to masturbate into a cup while a disgruntled nurse in orthopedic loafers clears her throat and taps her foot outside the door. It’s no better to have to reduce your life to a few short paragraphs in order to create your “Dear Birth Parent” letter—a letter that determines whether you’re considered for adoption by an expectant parent. The fact is, infertility is one of the great equalizers of the world, and everyone here could use all the support they can get.
In an ideal world, that’s all that would need to be said. But until this world, and this island, become ideal, you’ll need to know what you’ll be dealing with. Therefore, let’s take a walk through each neighborhood so you can get your bearings and settle into yours. Pay attention, keeping in mind that you may end up moving to a new neighborhood before leaving the Land of If—many do.
Primary Infertility vs. Secondary Infertility
Generally speaking, Iffers who do not yet have a child are considered to be experiencing “primary infertility,” and those who do have children are experiencing “secondary infertility.”
If you think that sounds simple enough, think again. After all, how do people describe themselves if they have a child through adoption but are now trying in vitro fertilization (IVF) to add to their family? It will be the first pregnancy, so is it primary? It will be the second child, so is it secondary? How about those who are looking to have a second child but conceived a first child with the help of fertility treatments? What about people who lost their first child to stillbirth? If they are attempting to become pregnant again, are they experiencing primary or secondary?
Now you’re probably getting a sense of how muddy these labels can be—and how detrimental to those experiencing infertility—when they are used to determine treatment or coverage by doctors or insurance companies.
The main difference between primary and secondary is the existence, in most cases, of a child who must be taken into consideration during treatments or adoption. There are advantages and disadvantages to both sides. Without a child to take care of while on posttransfer bed rest during an IVF cycle, those experiencing primary infertility can enjoy more flexibility—yet they may also have more fears if they don’t know if they’ll ever reach parenthood. Those experiencing secondary infertility can enjoy the comfort of a child when they have a failed cycle—but they also know what they’re missing, since they’ve experienced parenthood. It can be difficult for those experiencing secondary infertility to do fertility treatments discreetly when they need to arrange childcare for existing children. In addition, because they have been successful before, those experiencing secondary infertility might not receive much sympathy or support from friends and family, even though they are going through the same painful fertility treatments as primaries.
Who has it better? No one. So forget about it. Besides, telling other people that their grass is greener doesn’t do anything to perk up your own patchy brown lawn.
Biological Infertility vs. Situational Infertility
These categories are rarely discussed but often come into play in terms of treatments. And, like the previous two categories, these also have an overlapping gray area.
People experiencing biological infertility need assistance to reproduce because they have a faulty reproductive system. People experiencing situational infertility need assistance in order to reproduce for other reasons. Those in the “situational infertility” neighborhood include the GLBT community, single parents by choice, and those of advanced maternal age (AMA).
The gray area? Here are a few examples: someone who was born with ovarian function but lost it due to cancer treatments. Or someone who had a hysterectomy but wants to add to her family. Or someone with a genetic trait such as balanced translocation—a chromosomal disorder that can be a cause of pregnancy loss.
Are they biological or situational? And does it matter? A speculum causes the same cramping sensation, and adoption paperwork is still lengthy—regardless of the circumstances.
THAT’S JUST SEMANTICS
The Latin prefix “in” usually means “not,” which technically makes the word “infertile” mean “not fertile,” which in turn is a synonym for “sterile.” However, most people diagnosed with infertility are not actually experiencing sterility. In fact, many people diagnosed as infertile eventually become pregnant, either unassisted or through treatments (or sometimes unassisted after treatments). So should we be using the term “subfertile” more often?
“Infertility” can be used to describe a moment in time (before you become pregnant, you are “infertile,” and afterward, you are “subfertile” or “fertile”) or a lifelong diagnosis. Even though Josh and I were successful once, I still consider myself infertile, and I will continue to do so long after I finish building my family.
In this book, I use “sterility” to refer to problems that medicine cannot circumvent, and I use “infertility” to refer to problems that medicine could possibly circumvent. I leave “subfertile” for those who like to argue etymology. Most of us have better things to do.
Nevertheless, “situationally infertile” is a controversial concept. There are those who think that situational infertility somehow “doesn’t count,” since GLBT or AMA conception can be seen as a choice. This argument is reductive and dismissive of the big picture. Building a family is a choice, but sexuality is not, nor is early menopause.
And there are those—such as people in same-sex relationships, or single parents by choice—who are situationally infertile by my definition, but don’t consider themselves infertile in any way. That’s fine. There is no problem when someone doesn’t wish to be labeled infertile. But there is a tremendous issue when those who do classify themselves that way are being told by an outside source that they aren’t (see the sidebar “Access: Denied,” in this chapter). The situationally infertile definitely get the short end of the stick when it comes to insurance coverage and thoroughness in treatment—even though they have the same strong desire as everyone else stuck in the Land of If: to get out of here.
Infertility vs. Recurrent Pregnancy Loss
Some women can conceive but experience recurrent pregnancy loss. On the one hand, they can get pregnant, but on the other, more important hand, they cannot carry to term. Recurrent pregnancy loss is part of the medical definition of infertility, and Resolve, the national infertility organization, includes “multiple miscarriages” in its definition of infertility.2
Unfortunately, those experiencing recurrent pregnancy loss have to contend not only with the terrible losses but also with a lack of support from insurance companies and doctors. They must be diligent with their healthcare providers and insurance companies in order to ensure that the proper tests are being run, and that future losses are being prevented. For more in-depth information about pregnancy loss, see Chapter 7.
Female-Factor Infertility vs. Male-Factor Infertility
Though infertility is often portrayed as a female problem (“She’s got lady troubles . . . ”), the reality is that infertility affects both men and women. It breaks down to be about 40 percent diagnosed with female factor, 40 percent diagnosed with male factor, and 20 percent diagnosed with unexplained infertility or a combination of both female-and male-factor infertility.3
If you’re arriving back in the Land of If after an earlier bout with infertility, you have likely brought with you equal amounts of coping mechanisms and fear. After all, you now know what to expect, so you’re not fumbling around in the dark. On the other hand, you now know what to expect, so you can’t hold the same blind hope you may have had the first time around.
If this is your first time in the Land of If, you may be shocked to find yourself here, especially if you had your first child or children with relative ease. You might have been positive that the boat that brought you here would eventually realize its mistake, turn around, and take you back to the mainland. It may have taken you a long time to actually feel comfortable stepping away from the dock and exploring the island.
Either way, having children in the picture brings a bit more complication. Every option needs to be weighed with your existing child(ren) in mind. For example, if you went the donor route the first time, do you choose the same donor again? If your first child came to your family through adoption, how will his or her experience change if a sibling comes via IVF?
Also, it can be a little more difficult to keep things under wraps when you have a child (see the sidebar “Talking to Kids About Infertility,” in Chapter 4). Some clinics don’t take a stance on whether children can be in the waiting room, but it would certainly behoove you to leave your children at home. It can be very difficult for a person experiencing primary infertility to have to spend time in the waiting room around a baby or toddler. So childcare may be necessary.
When arranging care, I do recommend at least some disclosure, simply because you want the person you’re relying on to understand that these appointments cannot be missed. You don’t need to divulge all if you don’t want to. When you get home, just say, “Geez, I’m so glad I can leave all those details back at the clinic/agency and have my home just be a place to relax.” Then wink and offer a margarita.
Receiving a partner-specific diagnosis can be both a blessing and a curse. On one hand, once you know the issue, you can treat it, or you can choose a path that circumvents the problem. At the same time, having a diagnosis often brings with it a terrible emotion—guilt.
Believing that you are the cause of the situation can be upsetting. In my own relationship, our infertility issues fall squarely on my shoulders, and even though my husband carries the weight with me as our shared problem, I can’t help but feel responsible knowing that the money spent, the time away from work, and the emotional ups and downs are all due to my wonky body and hormone levels.
This emotion is far from helpful, and though I don’t always live this advice, I am here to lecture you: Remove the self-blame and see infertility as a problem of the couple, rather than of the individual, if you are in a relationship.
no. 0001 THE LAND OF IF VISITORS BUREAU
TIP: If you are currently reading this book due to your partner’s infertility di agnosis, I beg you to tread lightly, knowing that those who hold the diagnosis usually hold a great deal of shame. Make sure you clearly differentiate anger with the situation from anger at the person, and clearly support your partner in seeing infertility as a problem you share together.
Believe me, I know it’s so much easier said than done. But no one chooses to be infertile, and “fault” is an ugly, misused word in this case. Take blame for the things you can control and accept that there are things that will just happen to you—and that those things may affect other people you love, too.
What if you don’t have a diagnosis? What if you’ve been through multiple IVF cycles with fine-looking embryos and no discernable reason why you’re not getting pregnant or maintaining a pregnancy? It is frustrating and anxiety-inducing to not have a reason for your situation, and it can be maddening trying to make decisions when you have no idea what’s wrong.
Unfortunately, even after going through the entire gauntlet of tests, you may still walk away without answers—and that is one of the most upsetting aspects of unexplained infertility. It is impossible to know when “enough is enough” if every cycle is explained as “just bad luck.” Therefore, those diagnosed with unexplained infertility need to be vigilant about setting stopping points (see Chapter 3 for more information on doing this). If not, the path out of the Land of If can twist back on itself again and again . . . until it merges with the path to insanity.
When we speak about infertility and age, we are usually referring to women, even though male fertility declines after age thirty-five as well. A 2003 report in Fertility and Sterility looked at the time it took for men over forty-five to impregnate a woman. There was a fivefold increase in time after the men turned forty-five, as opposed to thirty, pointing toward a decrease in fertility. It took forty-five-year-old men on average thirty-seven months to impregnate a woman.5
All people may have been created equal, but all patients are definitely not treated equally. Hopefully, you will never run into a doctor who will deny you treatment, but three groups are particularly targeted by discrimination: single men and women, GLBT, and those labeled with “advanced maternal age,” or AMA (which is usually determined to be thirty-five or older).
In August 2006, Mother Jones published a survey (conducted by Fertility and Sterility) of fertility clinic directors. The results were shocking: 48 percent of clinic directors said they’d turn away a same-sex couple seeking a surrogate, 20 percent said they’d turn away a single woman, 17 percent said they would deny treatment to a lesbian couple, and 5 percent said they would turn away a biracial couple.4
While doctors should stop patients from undergoing risky or unnecessary medical procedures, aiming to control access to parenthood or making judgments on what is in the best interests of a future child is not