IVF 16: Isolation

Although (because?) I am feeling surrounded by support right now, I'd like to discuss the ways in which infertility is an isolating diagnosis. The sentiments may be applicable to more situations than just infertility, but this is the one I know about. This post is in part for the commenter who said that she was reeling from an "IVF or adopt" diagnosis.

First, the emotional sense of isolation. While 10% of the American population may struggle with conception, your own diagnosis of infertility almost inevitably arrives when everyone else in your cohort is pregnant, or about to become so.

What's more, not only does hardly a week seem to go by without yet another friend telling you that they have "news," nobody in your life is likely to announce that they've been trying for two years and it isn't working. We all know that you don't tell anyone when you're "trying." Well, you also don't usually tell people when you're failing. For the first two years or so of this struggle, the only people who knew that there was trouble were two of my friends, one of Dr Hyde's friends, and my immediate family.

My friend X who is also struggling with fertility problems put it thus: "I feel as though my husband and I are just this sad couple."

"What do you mean?" I asked. "You're the life of every party."

"Yes," she said, "but that only reinforces the fact that we go back home to failure."

And it's true. There's a sense that you are shouldering this burden alone, perhaps more so than if you had a more popular medical problem.

One solution, of course, is for people to be more open about their struggles with conception. It's a little tricky, though, to know what to say. You are potentially airing not only your own medical problems but your partner's. You are inviting discussion about some areas of your body that you used to think of as private. Announcing infertility is (literally) a Debbie Downer.

What's more, you're not always guaranteed sympathy. There are people who will tell you that pregnancy's not all it's cracked up to be, or that they know people who have very cute adopted kids from Country Z. These things are true, but you wouldn't think of telling someone who just lost a leg that at least she would never have problems finding matching socks.

I've been lucky in that the response, when I've told people about our problems, has been universally supportive--but I'm still always nervous that someone will tell us to suck it up and adopt, or quit adding to the world population, or whatever.

Another emotion that arises is jealousy, and attendant self-loathing. I would like to think that, despite our own struggles, I was the sort of person who could be happy when other people got pregnant. Nope. I say nice things on the phone and then I go cry with rage and jealousy and helplessness, and with shame that I am not in fact a nice enough person to be happy for others. Nice.

I had always felt close to Friend X and her husband, but still I felt inhibited from mentioning our problems to them. Since they were also married and stable, I was dreading the day that they would come to me with "news." When instead X mentioned what they were going through, I couldn't believe my ears. They'd been in our lives all this time, but both they and we had kept quiet about our continued failure to have kids.

From that point on, I've been more willing to tell friends about our situation. Our isolation was self-imposed--not that anyone else has confessed to sharing these problems, but at least I've stopped feeling like we carry a big sad secret. This is not to say that everyone going through this ought to stand up and announce it in lab meeting, but to note that if all of us stay quiet, we won't find each other. And while the internet is a great place to locate a sympathetic community, real life friends have a lot to recommend themselves, too.

Second, the physical sense of isolation. Some women, when they hear about struggles with conception, say something along the lines of, "Well, pregnancy and childbirth isn't exactly a walk in the park." And of course they're right about that. Even "easy" pregnancies cause discomfort and pain and restricted activity.

For anyone who wonders why people would go to such lengths just to put themselves through the difficulties of pregnancy and birth, I would say this. Imagine that you were born female but that you never had menses. "Lucky you," your friends would say. "It's awful, and inconvenient." Meanwhile, every women's magazine you read has an article about menstruation--readers' stories of when they got their first periods, debates about maxipads with wings, the Eight Signs That You Should Visit the Gynecologist. When groups of women are together, they talk about PMS, or about sex during their periods, pro or con.

You would feel jealous. Not because having a period was such a desirable thing, but because it was such a fundamental part of every other woman's life that to lack it was to be excluded. And wouldn't you sort of hate your friends for telling you not to want what they all had?

Take that sensation and convolve it with the knowledge that most women enjoy aspects of pregnancy and birth, and say that it was a life experience they wouldn't miss--it was defining. The fear that you will never have that experience is real.

Once, before I had told my GradAdvisor that Dr Hyde and I were struggling, she launched into a speech about how childbirth made women stronger (I think it was prompted by the pregnancy of yet another lab member). "Knowing that you can go through that and come out the other side makes you realize how much strength you have inside, and how much stronger we are than men really. It's such a transformative experience and you learn so much from it."

She had no intention of hurting me, but it took every ounce of self-control not to run away crying. Infertility's pretty fucking transformative too, I wanted to say, and I've grown a lot stronger from learning to control myself in situations like this.

It's important to realize that adoption is not a solution to infertility, per se. It's a solution to the ultimate goal--having children. But it's not a cure for being able to share in the experience of conception and pregnancy and birth and newborns. If this cycle and whatever comes after it doesn't work, then I will give up on having that experience. The defining moment of my personal life won't be childbirth, but perhaps--what? Accepting that I won't give birth? Signing adoption papers? Seeing our adopted kid for the first time? I don't know. We don't have a narrative constructed around that path.

I think there would be more forgiving attitudes towards IVF and related procedures if more of us were speaking up about them. Cancer used to be a stigma, a shame, a secret. Patients stripped those attitudes away by organizing support groups and societies, by asking for help in fighting cancer, by going public. We're never going to get past the "you're buying a baby/you ought to adopt" response until we do the same for infertility. Reasonable people may always disagree on whether we high-consumption Americans should be having kids at all (or having more than the replacement rate, or whatever), but that argument needs to be separated from the fact that some people go to greater lengths than others to have those kids.