“I’ll bet if you stopped trying, it would happen.” “You can always adopt.” “You should pray more.” “It will happen when you least expect it.” “God has a plan.” “Trust me, you don’t want kids. You can have mine.”
And on and on and on. These are a just a handful of the (surprisingly) more tactful comments people make to couples experiencing infertility. Remarks that seem innocuous enough if you happen to be on the dispensing end, but relentlessly tiring if you’re unlucky enough to be the recipient.
I want to be very upfront about this: I’ve never experienced infertility myself. I have been through a gut-wrenching miscarriage and a rough pregnancy, but I’ve never experienced the pain of having to wonder if I’d ever be able to carry a child within me. When a very close friend of mine went through it, however, I had a newfound desire to understand it more. “You’re honestly one of the only people who ever asks how I’m doing,” she told me on more than one occasion. “People just pretend it doesn’t exist.”
Which is interesting when you consider how vocal everyone seems to be the moment you conceive a child: they want to tell you exactly how they did it, from the maternity leggings you should buy to the type and amount of exercise you should do to the exact position you should sleep in at night. But when it comes to infertility, people are either completely mute or full of terrible, insensitive advice.
In my quest to understand this seemingly hidden side of infertility, I sought out a handful of fellow bloggers who were kind enough to let me interview them about their struggles with infertility. So, in honor of National Infertility Awareness Week, I am bringing you their stories in the hopes that it will spread some small measure of awareness about what it’s really like to experience infertility firsthand.
(Left to right)
Tori Wilkinson of Becoming the Wilkinsons
Kate Boykin of Mom for the Win
Jeanine Lebsack of Jsack Mom Blog
JoAnne Applebaugh of I Try: The Additive Property of Happiness
Joanna Appel of Faint Not Mom
Q: What is your story surrounding infertility?
Tori: About two months after my husband and I went to closing on our townhouse, I miscarried. I had only been off birth control pills for five months. I was about four days late; I took a pregnancy test and it was positive. I had an entire secret pin board about ways to tell my husband I was pregnant. (Yep, I am that girl.) I peed on a stick every day for another week just to make sure nothing changed before I could get in to see my OB. The night before my appointment I spiked a fever, got super nauseous and felt the sharpest one-sided pain. I tried to remain calm but by the next morning, I knew it was over. I completely shut down. I didn’t tell my husband. I was so ashamed. The killer part – I work in a fertility center and could have had my blood drawn earlier but I didn’t want people to know. It was another six weeks before I told Brandon what had happened.
By October when we weren’t pregnant, we went to see the doctor I work for. Turns out, I have spotty ovulation at best and my husband has decent sperm, but not fabulous. While couples in their 20s have a 20% chance of getting pregnant each month, we were told we had more like a 5-10% chance. We immediately started treatment. We did two IUIs, had our 3rd cycle cancelled due to a terrible response to Clomid (holy hell), and then I had a bunch of ovarian cysts noted on a scan right before Christmas. We were very lucky and got pregnant with our first IVF cycle and have two frozen for a rainy day.
Kate: To understand, you need to know a few things. I got married at 19 yrs old. I have ALWAYS dreamt of being a momma. I had wanted kids since I got my first baby doll. After two years of marriage, I peed on a stick. I was pregnant! Eight weeks later, I lost the baby. This started my infertility trip. Before I had my oldest, I had 7 miscarriages. The “longest” I carried was 18 weeks. It was devastating. I went to a specialist. Lots of tests were run and it turned out I had PCOS. More or less, my body doesn’t produce enough progesterone. So in a way, my body attacked the pregnancy. Once they figured that out, they put me on Clomid to get pregnant and prometrium to maintain the pregnancy. After three cycles of this, I got pregnant. 38 weeks later, I had our oldest. Then we went 5 and a half years with no birth control, no protection and didn’t get pregnant. When we went to the doctor, I was told I would never carry another child again. That day, our daughter was conceived. She was born at 35weeks. 9 months and 12 days later, I had our youngest at 33 weeks. I became pregnant with him using birth control and a condom. While I was pregnant with our youngest, my husband had a vasectomy. When our baby was 4 months old, I took a pregnancy test. I was pregnant with twins. They were both ectopic.
Jeanine: My story is actually described in a new term I just learned, secondary infertility. I had gotten pregnant quite easily with my first child three months after my honeymoon. After being together as a couple for a long time, I really didn’t know how long it would take to conceive. When husband and I wanted to have another baby I assumed it would be just as easy. My dad was diagnosed with lymphoma when my son turned one. Unfortunately he lost his battle a year later, when my son turned two. I was devastated and we had stopped trying to conceive. About five weeks after my stepsister committed suicide, as she was my dad’s caregiver and was lost without him. I went into a grief spiral for a year and a half. Shortly before my son turned three, I spoke to my mom about wanting another baby. So from Aug 2009-Aug. 2010 we were on a mission for baby number 2. My husband and I were three years older now and month after a month I still wasn’t pregnant. I talked to my doctor and she referred us to a fertility clinic. I received blood work and was found to be healthy and viable. I believed my heart just had to heal and my body would do what it needed to naturally. My husband never had his sperm count tested, so I just started reading, researching and taking better care of myself.
JoAnne: My husband and I started trying to have children back in 2008. We tried, but nothing was happening. We chalked a lot of it up to stress and bad timing for a while. Doctors told us the same thing. We also took the advice that everyone seems to think is so golden—“just stop trying for a while”—a couple of times. That, for the record, is horrible advice.
Anyway, we tried every non-interventionist approach. We made lifestyle changes, we ate right, we tried to track my cycle… if it’s in one of the books about “How to Get Pregnant Without Modern Medicine” we probably tried it. It turns out, though, that if you aren’t consistently ovulating — even if you are having cycles on a somewhat regular basis — it’s still impossible to have a baby. No egg, no baby: those are the rules. I could have checked my temperature 20 times a day every day for a year, or used ovulation kits every morning for the rest of my life — what isn’t there can’t be found.
Last year, though, we decided that we couldn’t wait anymore. We had our first appointment at a fertility clinic right around this time last year. So began a string of tests, attempts, and disappointments. At least then, though, I felt like we were making some progress. Then, at the end of July, we moved. We no longer had our clinic. There is one clinic where we are now, but we had to wait until we knew what insurance would cover before we could start anything. we had to wait until December before we found out the stellar news that ABSOLUTELY NOTHING was going to be covered. That was great because we knew that we had waited and missed out on months for NO GOOD REASON. We finally got an appointment at the new clinic and we were able to start… getting more tests. That was December. We haven’t been able to even try again because one test keeps coming back slightly off. Timing of this test is such that it can only be taken every so often and it takes a while to get results. We’re still waiting on the third round of tests. We’re likely going to miss this month’s cycle as well and, then, we’ll probably have to redo all of our original tests because they usually need to be redone every year. We’ll see. We honestly don’t know anything. We’re just in limbo. We can’t even really try.
Joanna: The first month that my husband and I tried to get pregnant, we were successful. We had been married four years and it was time to start a family. Nine weeks in I started bleeding. I was one day away from my first ultra sound so I kept the appointment. The technician didn’t know what to say to me when she did the scan, she just wrote a volume on my paperwork. It was unclear what was going on so they said it was an incomplete miscarriage. Obviously, I was crushed. You don’t expect that when you are just getting started – especially when everyone around you is getting pregnant and having healthy babies. The incomplete miscarriage never completed so I had to go back in to the doctor. After a lot more visits and uncomfortable internal ultrasounds, they discovered that I had a molar pregnancy. This is a tumor instead of a baby, which can cause cancer. I had to get a DNC, and my insides were sent to a lab in London. Every month for a year, I had to get a blood test and urine test, which I sent through the royal post to the lab – to make sure that I was not pregnant, that there was no trace of HCG (because that is the hormone that the tumor puts out – totally tricking your body into thinking it is pregnant.) We moved back to the states about the end of that testing. Our goal of starting a family had been put off a year already, so we kept trying. Nothing. For three more years we tried. Nothing. I was buying pregnancy tests in bulk, which is not a good sign. I finally got pregnant only to miscarry at 6 weeks. Totally devastated. The following month, I got pregnant with my twin boys.
Q: What words would you use to describe what it’s like to experience infertility?
Tori: Pre-diagnosis: hell. I was constantly worried and constantly scared. Every single trying to conceive myth became my norm. Hips up after sex. I ate so many baby carrots it’s a wonder I didn’t have an orange tinge. I ate avocados because apparently they are good for uterine health. I tried everything. Post-diagnosis: hell. I am a total control freak and I had no control. I had no control over how I would respond to the medication. I had no control over whether or not the treatment would work.
It was all hell, just different kinds of hell.
Kate: Infertility can and does suck the life out of you. Everywhere you look, you see babies or pregnant women and you feel insanely jealous and somewhat hostile. It can cause depression, feelings of inadequately, and/or feelings of despair. For something that happens so easily for so many, you feel scorned. Mad at the world that you can’t have a child.
Jeanine: I felt like such a failure when I peed on the testing stick each month. I knew I was older but still I was living a healthy life as I was teaching fitness and yoga before and after my first child. I had a very healthy pregnancy with him and I was turning 33 when I had him. I watched three of my friends have healthy babies and I wondered what was wrong with me. My husband offered to get tested and his blood panel came back healthy and viable as well. So I fully believed our pregnancy conundrum was all about me.
Q: What negative reactions/comments have people around you used to try to “comfort” you?
Tori: People said some of the craziest things to me. I was told by plenty of people to “relax” and we’d be pregnant in no time. My mom told us to buy something we could barely afford because then we would definitely get pregnant. I had someone tell me that they completely understood because their dog had lost its puppies when she was a child. Uh huh, and that is like this how?! I had someone (a family member, no less) tell me that maybe my miscarriage was God’s way of saying maybe I wasn’t meant to be a mother. I had someone ask me if I really needed to have a baby now, maybe this wasn’t the right time. And don’t forget the cliché “everything happens for a reason”. I always wanted to punch those people because, like they said, everything happens for a reason. Several pregnant friends complained about pregnancy and would say “this is miserable, are you really sure you want to do this?” or the new moms would complain about sleep deprivation and say,”I would kill to be in your shoes one day, just so I can get a decent night’s sleep.” Really? I am NOT sleeping. I am lying awake researching why crack whores can get pregnant and I cannot.
JoAnne: I’ll tell you some of the great things that people have said to try to comfort me but, first, I want to make it clear that “comforting” is often nowhere on the menu. Ignoring is the number one response — even so far as to have people you tell act as though you hadn’t spoken at all. Ignoring is, however, better than the people who are just outright awful. There are plenty of those. They include everything from people making lewd jokes to telling us that infertility treatments are evil and any children we have will be an abomination. In fairness, though, people usually don’t say that last one to my face — likely because they know that they wouldn’t be able to duck fast enough or run quickly enough.
A sampling of the “comforting” things people have said include:
“You just need to have more faith in God.”
“You just need to pray more.”
“Maybe God doesn’t want you to have children.”
“Maybe you’re just not cut out to have children and this happened because you’re not supposed to pass on your genetics.”
“Oh, poor John. It’s too bad that he has to suffer because JoAnne (me) is infertile. It’s too bad he couldn’t have known about it before they got married.”
“You just need to relax.”
“Look on the bright side…” (all kinds of really stupid things follow this one — all are superficial, out of touch, or show a complete misunderstanding about the realities of what an infertile couple has to go through while trying to get pregnant. The most common is the misunderstanding that we get to have great sex all the time when the truth is that nearly everything has to happen on a schedule and is usually accompanied by some sort of medication induced discomfort/pain.)
“You should take some time off, I bet if you stopped trying…” (see above — the only thing NOT trying does is cause you to lose time)
“It will work out, I know it.”
“You want kids? Here, take mine! (ha ha)” I’ve gotten to the point where I respond to this little version of “we’re not going to talk about you and your challenges now because I want to talk about ME more” with “Okay, let’s go pack a suitcase and call the lawyers.”
“Oh, I had my baby when I was 32, so miracles CAN happen!”
“Do you really even want to have kids at your age?”
Joanna: I think most people didn’t know what to say so they didn’t say anything. I did not find any comfort in the medical community.
What would you suggest as the best way(s) for others to offer support to someone experiencing infertility?
Tori: Just be there. Don’t offer unsolicited advice. Don’t use cliches. Don’t make comparisons. If you’re pregnant, for the love of God – don’t ever complain about it in front of that friend. Don’t treat them like a leper. Invite them out. Allow them to reject your invitation to lunch with the new moms, but don’t not include them. The isolation infertile women put themselves in is far worse when they feel like people are shutting them out, too.
JoAnne: (1) Actually listen. Don’t just say you will. Don’t let them talk for a minute and then change the subject or shut down the topic. No one really seems to want to listen. No one really seems to want to understand.
(2) Do something useful. Rather than tell me that you’re here for me for anything, actually offer to do something specific, like run an errand or vacuum my floors.
(3) Think before you speak. It’s true that most people mean well… but it’s not true that just because someone didn’t mean to be a jackass that they didn’t actually act like a jackass. Intentions can somewhat soften things, but actions and words can’t be taken back because someone meant well — just like if you hit my car accidentally versus intentionally then, yeah, you’re not a terrible person but you WILL still need to pay for the damages.
(4) If you think I need to relax, then by all means, help me do so. Get me a massage, clean my living room, pick me something up at the grocery store… or, if you’re helping someone with secondary infertility, offer to babysit (or arrange child care) for them when they need to go to appointments, when they are sick from the treatments, or when they just need a break.
Kate: If you don’t know what to say, say THAT. You can’t go wrong admitting you have no words. Sometimes all that’s needed is a supportive friend and listening ear.
I learned so much from these women throughout the course of these interviews. The physical and emotional trials they’ve weathered (or are still weathering) are astounding to me and I hope their candid responses will help bring a little more awareness to a condition that so many women seem to suffer in silence.
If you’ve experienced infertility yourself, I’d love it if you shared your story in the comments or jump over to Facebook to join the conversation. What was/is the best way for others to offer you support?