Thursday, January 25, 2007

Confessions of a lurker

I was lurking over at Julie's the other day, and her sad post got me to thinking about why infertility can be so emotionally damaging, and why it can be so hard to get out of the sad place. I think that it's not really the denial of something that we want that makes it so hard. Most even marginally well-adjusted people cope with not getting what we want all of the time. I've always wanted to have smaller hips and fewer freckles, for example, and yet somehow I've managed to go on for 37 years bearing the awful burden of a J-Lo ass. I never seem to win the lottery (could that be because I never play?) I don't think that I'll ever write a great novel, and I certainly won't have time to read all of the great novels out there. I don't even think that I'll ever achieve my childhood dream of becoming Indiana Jones. I don't let these things bother me. I like to think that I'm pretty good at accepting most realities. Infertility, though, is different.

Why is it different? I think that there are a number of reasons, including the isolation, the sense of alienation from one's body, the lack of acceptance of infertility in society, and the mental image of a great long line of ancestors tracing back 3 billion years to the primordial ooze suddenly being snuffed out due to one's own reproductive incompetence. However, bodies can fail us in all kinds of ways, we all cope with being unique or special in some way or another, and most of us weren't really THAT fond of our one-celled ancestors anyway, so there's got to be more to it.

I think that the way that infertility often unfolds is the beginning of the problem for many of us. It's not like a "normal" disease where you have some symptoms, you go to the doctor, you run some tests, you get a diagnosis, and the doctor recommends a course of treatment. Many infertile couples feel fine. We don't have any obvious symptoms that should lead us to believe that there's a problem at first. So, the first real clue isn't something that happens, it's something that doesn't happen. And not happening takes a lot longer than happening. For me, this symptom started as a vague sense of worry, morphing slowly from confusion to fear to panic, which led me to the doctor. A series of tests followed, all of which indicated that there was nothing wrong. But there WAS something wrong. I thought. I couldn't be sure. Maybe we were just taking a bit longer? Maybe it would happen next month? Surely this couldn't really be happening, could it? To me? Really? Oh dear...

I realize that some couples (and singles) have a very different infertility trajectory. I don't know what it's like to quickly receive a devastating diagnosis when seeking infertility treatment, or to receive the diagnosis before even starting to try. That must be a very different kind of pain. I can't say that I envy them the pain, but I do envy them the fact that they got the news quickly, like pulling off a band-aid, rather than having it delivered to them slowly but inexorably hair by painful hair.

All of us, though, are in the same boat when it comes to part II of the infertility journey--the decisions about treatments or alternative family-building methods. I really think that this is the part that makes grown women keep crying for months or even years. On the one hand, I am SO grateful to be living in a day and age, a society, and an economic situation where fertility treatment is available and at least somewhat affordable. I am hesitant to comment negatively about the abundance of available choices for today's infertiles. Clearly it's a great gift, for which I am grateful. However, I have also noticed that I am particularly stressed and unhappy when agonizing over treatment decisions. Unfortunately, every option comes with a series of drawbacks. Today's infertile has to negotiate a bewildering series of risks and obstacles, including:

Health risks (including cancer, OHSS, ovarian torsion, higher-order-multiples, ectopic pregnancy, physical pain from injections, egg retrieval, and surgeries, miscarriage, premature delivery, death)

Emotional risks (What if the treatment fails? What if it succeeds too well? If I use donor eggs/sperm/embryos will I miss the genetic connection? Will the child? If I use my own eggs/sperm is the child at risk of genetic diseases? If I adopt, will the child grow up to resent being adopted? What about the birth family? What about the extended family?)

Financial risks (What if I spend all of my money on fertility treatments and don't have enough left for other family-building options? Is it better to spend less on a treatment with a lower probability of success, or should I pay to pull out the big guns? Will making major financial sacrifices to pursue ART make a negative outcome even harder to take? Can we afford multiples?)

Administrative issues (What clinic/agency should I use? What does insurance cover? How do I arrange a home visit? A semen analysis? IVF?)

The fact is that little in life can prepare you to have to make such potentially life-changing decisions, often with so little information, and with so little social support. Furthermore, while infertility feels like a crisis, the fact is that we usually have enough time to torture ourselves by mulling over every possible aspect of the decision, second-guessing ourselves time and time again. The fact that we're often jacked up on hormones while making these decisions doesn't help either. So, it's not really surprising that most of us feel like we're lurching from crisis to crisis.

Then, once you make the decision, you wait. And wait. And wait. And then you get the decision. Is it thumbs up, or thumbs down?

If the news is good, well, it's still not THAT good. All kinds of things can still go wrong. Ectopic pregnancy, miscarriage, fetal defects, complications, higher order multiples, stillbirth. Sadly, your average infertile has plenty of time to learn all about all of the things that can go wrong during pregnancy. So, rather than being a time of joy, for many infertiles, pregnancy is a time of white-knuckled fear.

If the news is bad, then go back to step II. Only the stakes feel even higher, your emotional reserves are lower, and your wallet is generally substantially thinner. Yippee.

I think that's the problem. With many other kinds of loss, the loss happens as an event. With infertility, it's not an event, it's a process that can go on for years. The outcome is not clear. The only way to know if a decision was good was with 20/20 hindsight. So, it's hard to know when to laugh, when to cry, when to mourn, when to pick yourself up and try again, and when to move on.

I think that's why it's so hard.


Heather said...

This is such a beautiful post. It is a process...a sucky, painful process.

Stephanie said...

wow, no wonder I am a screwed up highly emotional person. IF is to blame! Thanks for such a thought filled post.

Marie-Baguette said...

This is a great post. I believe that what I suffered the most was isolation. Whithout realizing it, people can say very hurtful things like "why don't you adopt?" or (my favorite) "it always take a while to get pregnant". Infertility is still a huge taboo. You have to hide it from people at work, and sometimes even from your family. I think it would be easier to cope if infertility was not such a "shameful" thing.

LilySea said...

This makes a lot of sense. The lack of a clear diagnosis, added to the fact that so many people are telling you (or thinking and you know it--even if they don't tell you) that "it's all in your head." Plus all the weird-ass gender baggage that goes with pregnancy and motherhood make this a uniquely challenging problem.

foxypopcorn said...

That is an incredible post. I feel like you were reading my mind and found a way to translate and organize all of my mixed up thoughts into words. Incredible.