When it came to cancer, I was lucky. I had a thyroid nodule under observation for many years; when I was twenty-six, it was thought to be cancerous. I had two surgeries to remove my thyroid. My roommate cleared out so I could take radioactive iodine to kill any remaining cells. I missed about four days of grad school classes and still got straight A’s. Now I don’t have a thyroid and have to be on medication for the rest of my life, which I am definitely not thrilled about. But still, all things considered, it was an unpleasant but not traumatizing event.
Infertility on the other hand, has been far worse. There are plenty of sources that will tell you that the stress levels of women with infertility are the same as those of women with cancer, AIDS, or heart disease. But they don’t tell you why that is the case. Having had both, I now have a pretty good idea of why. While most women with cancer don’t have it as easy as I did (and it’s not really ever fair to compare diagnoses), having experienced how people treated my cancer, compared with how they’ve reacted to my inability to conceive has taught me a thing or two about stress and the isolation of infertility. Here are a few of the things I’ve learned:
People Think Infertility is your fault
Women’s fertility peaks in their early twenties. Did you start trying to conceive in your early twenties? No? Then you could have started earlier. (Obviously we also reserve judgment for women who have children too young, so you can’t win this one.) But when it comes to infertility, people will assume that you “delayed” having a child for “selfish” reasons (career, money, etc.). For the record, I found a partner who was ready to have kids when I was thirty-three, which is when we started trying. I thought that was “being responsible,” not “delaying.” It’s a particular pet peeve of mine when people suggest that I “delayed” having a child for grad school or career. No, those were just things I ended up doing while looking for a partner that I wanted to have children with.
Your biological clock is ticking
Before I had infertility, I would have said that if I can’t have kids, I’ll just adopt. But as it turns out, it’s much more complicated than that. For one thing, our dream (the one we’re taught as kids) was to have biological children. And adoption is not that easy. But most importantly, what does “can’t” have kids mean? Can’t under which circumstances or treatments?
Donor eggs and adoption are still totally on the table for us, but the crappy thing about infertility is that the best time to conceive is always right NOW—you’re only getting older. (The term “geriatric pregnancy” used to be used for women over thirty-five—now it’s called “advanced maternal age.”) So, if we’re going to try with my eggs, we need to do that first.
It’s super gendered
My husband has had to show up at a doctor’s office on… I think… a total of seven days in the last four years for infertility treatments. And by show up, most of the time just his sperm has to show up. In contrast, I have to show up at least six times per cycle. I just counted, and I have driven to fertility clinics a total of ninety-five times—each one taking at least an hour and a half out of my day. And yes, it hurt my job performance (but not my husband’s). I don’t get to drink alcohol or coffee, but he does. To boot, if the cause of your infertility isn’t diagnosed (we are still completely unexplained), doctors will assume it’s an egg problem, not a sperm problem.
Nothing can be predicted in advance
Those ninety-five trips to the fertility clinic? All of them were scheduled just a few days in advance. Each cycle includes baseline to make sure everything is normal and monitoring multiple times to see how fast the eggs are growing. Even with all that, cycles are canceled all the time because your hormones are out of whack—and I always had pretty regular cycles pre-infertility. They just get out of whack from the crazy drugs you are on. So doing things the science-y way ends up being less predictable, not more predictable.
I just had an egg retrieval, which involves going under anesthesia. I expected it to be sometime around Saturday, then maybe Thursday or Friday since it seemed like the eggs were developing faster. It happened Wednesday morning. I found out about that on Monday. This puts a major damper on your ability to go out of town, visit family, reserve a hotel, buy plane tickets, change jobs, take a vacation, schedule an interview… basically anything that needs to be planned in advance.
You give up
You give up on so many things. First we gave up on a honeymoon baby, then an easily-conceived baby. You give up on the idea of having the first grandchild. You give up the idea of trying to have a girl versus a boy. After a while, you give up on conceiving through sex at all. Then through IUI. I’ve only been pregnant twice, both times through IVF, and neither was viable. You give up on becoming a parent at the age you wanted to. You give up on the chance of magically getting pregnant the day before you’re going to do IVF (this actually happens, at least anecdotally). Friends get pregnant, have a miscarriage, get pregnant again, have the baby, throw a first birthday party, get pregnant with a second child, throw a second birthday party… all while you’re still trying. You give up on being able to have the number of kids you want. You give up caffeine, alcohol, soy, dairy, wheat, and sugar, just in case it helps. When a cycle was unsuccessful, it was literally all for nothing. You give up.
No one protests your cancer treatment
My new fertility clinic has a protestor that comes every Saturday to tell me I’m murdering babies. (I’m not; I’m creating babies—nature murders them.) I also had to have an abortion to end a pregnancy where the embryos never developed (again, no babies killed). No one tells you you’re a bad person for treating cancer. No one tells you that maybe you’re just trying too hard to get rid of your cancer, and maybe if you stop trying, it’ll just magically go away.
Infertility is invisible, but it still hurts
Unless you’re in a bikini showing rows of pricks and bruises on your stomach, infertility can’t be seen. I have a scar on my neck from having my thyroid removed, and there was a visible bandage. People cared when I had that surgery. I got flowers. I get no sympathy for stabbing myself every day with needles to inject drugs that make me super pissed off at everyone. Bloating hurts, hysteroscopies super hurt. I’ve had so many vaginal ultrasounds I don’t even notice those anymore.
People have something to say when you have cancer
Relatedly, people are just the worst about not saying anything at all when you tell them you’re dealing with infertility or going through IUI or IVF. I have mentioned it to old, close friends in email and gotten nothing in return. I have told a long-distance friend I was doing IVF only to have her show up unexpectedly eight months pregnant to our lunch meeting when I was in her city (SURPRISE!) and still not ask about me or mention anything about IVF. Please say something if someone talks about infertility to you. Anything from “That sucks” to “Are you thinking about doing any treatment?” to “I know another person who had trouble having kids…” (Just don’t say “Have you tried timing sex around ovulation?” or “You just have to stop trying and then you’ll get pregnant!” We have, and neither of those is working for us.)
I’m in just about the best boat you can be in while going through infertility treatments. I started this pretty young. I live in Illinois, which has a fantastic insurance coverage mandate. I have a partner who not only wants to have kids but is totally cool about embracing science in order to get there. I have a job that’s flexible and takes place more in the evening hours (fertility treatments happen in the morning), and provides enough cash to pay for extras like genetic testing.
What I don’t have is a baby, or these four years of my life back. And it sucks.
