By Mary Bragg

When I was in my mid-twenties, I was diagnosed with Polycystic Ovary Syndrome or PCOS.  While I was pleased to finally have a diagnosis that explained many cycle problems I had, I was nervous to hear that many people face infertility as a result of the condition.  I did what I always do when faced with the unknown—I read everything I can.  I bought a book about PCOS and followed many blogs of people going through infertility treatment.  I learned so much about infertility treatment, but nothing prepared me for actually living it.

1. Expectation Gaps are What Causes Pain

When my husband and I decided to expand our little family with a baby, we knew that the PCOS could be a barrier.  I took my temperature every morning to track ovulation, we lived a healthy life, and I was relatively young at 33 years old.  But every month or so with no positive test wore us down.  We expected that things would be okay and they weren’t.  What should have been a joyful stage in our lives was tough.

When we moved from the OB to the RE, we expected to be handed a protocol to encourage ovulation (think Clomid or Femara) and timed intercourse.  My scans showed I had plenty of follicles so all signs pointed easy treatment, but a diagnosis of serious male factor infertility (MFI) changed all of our plans.  We went from what should have been simple treatment to straight to IVF.  We were staggered.

Expecting one thing and having something else happen is where sadness, anger and pain come from.  If things happen exactly as we plan them to, we feel validated.  If things happen that are outside of our plans, we feel cheated.  I often cried on my husband’s shoulder about the “why us?” of our situation.  It’s important to have people we can rely on so we can vent and get those tough feelings out of our system.  It’s also important to maintain perspective: the world is not an inherently vindictive place that’s out to get us.  Bad things happen to all people and worthiness and “goodness” have nothing to do with it.  It’s not always easy to remember that when it feels like we have a target on our back.

2. Invisible Grief Makes The Load Heavier

Infertility is an invisible condition.  Statistics show that one in eight couples struggle with infertility—that means at least about ten people on a typical airplane have PCOS, endometriosis, male factor infertility (MFI), or some other condition that the very unhelpful advice of “just relax” can’t touch.  There’s no scarlet letter “I” stamped on our foreheads.

If you see someone with a leg in a cast, or using crutches, or otherwise injured we often instinctively know to help them—we give them a seat, bring them a plate of food, or offer to mow their lawn.  But the world doesn’t know that people facing infertility need help, or kind words, or at least not unhelpful suggestions.

This can make the pain so much worse.  Life appears to go on like normal but with a terrible side project: morning monitoring, painful injections and surgeries, drugs that set emotions to “haywire”.  But we often don’t talk about it because infertility seems to always be tinged with shame.  There’s a joke that mammals are made to do four things—eat, sleep, poop, and procreate—and with infertility we literally can’t do one of those on our own.  This transformed me to someone who felt like a failure, for myself and my husband and literally all of my ancestors ever.  Infertility is a loss—the loss of a dream, the loss of what we thought we were in control of, the loss of identity.  The toll it can take on us can be unbearable at times.

Going through this made me more cognizant that everyone is facing their own battles and struggles every day.  We can’t visually see that a person is getting worn down by caring for an ill parent, or is having trouble coping with mental illness, or broke up with their partner, or had a miscarriage.  (I imagine if they could then maybe this one chick on the Metra commuter train would not have been so rude to me on the train the week I found out that I was going to miscarry.)  We all need to strive to be kind to one another, to be an open ear, to be helpful in ways that are helpful—and to ask for help when we need it.  We personally shared our struggled on Facebook and stated what we needed from our friends, and people honored that.  I was glad to transform my invisible grief to visible.

3. Endless Moving of the Goal Posts

It’s a joke that everyone says that “I would never do that” but we all end up drinking a beer in the shower or letting our kids eat Cheetos off of the ground at a zoo at some point.  Reassessing where we are and compromising is part of a well-rounded life.  Infertility puts this on hyperdrive.

Hearing that we were straight to IVF was hard to hear.  It’s like moving from baseball’s A league to the Majors with overnight no stops in between. We didn’t really think we’d have to go that far, but here we were, signing forms and learning how to give injections.  We discussed what we would and wouldn’t do, and when we were pressed up against doing something we hadn’t planned we knew that the goal posts might move.

We were lucky in a way.  Infertility was stressful but it brought us together. We improved at communication and spent more time as a couple enjoying each other; I still fondly look back on going for neighborhood walks after nightly shots and how my husband brought a smile to the faces of the other people at morning monitoring when he would hold the door open for all of the women waiting in line.  Small things like that kept me going during a tough time.

Although I’m a control freak, I came to realize that this goal post moving was out of my hands—somewhat.  I had a care team I trusted to make good recommendations and provide solid care, but ultimately we got to decide. We got to decide what path to take. I became a strong self-advocate for my own care.

4. Shaded Success

After our second IVF and fresh transfer I became pregnant.  We felt hopeful but spotting early on brought me back down to earth.  It wasn’t serious and my pregnancy was relatively easy, but we knew that bad things could happen at any time.  Friends in my online support group had serious complications, some leading to terrible outcomes. We felt like the other shoe was always going to drop.  Our innocence around getting pregnant bled into being pregnant which at times sucked the joy out of the room.  Here were other pregnant people making registries the day they got their positive test and we were paralyzed with fear that ordering a car seat system on massive sale when I was 19 weeks would curse us.

I also felt bad for what felt like leaving others behind.  Why did I get to finally be pregnant when others still weren’t? Here I was, finally expecting a baby, finally achieving my goal and I felt guilty? It didn’t make sense!  When I recognized that this was a compassionate view of the world, of wanting to take all of the people in my infertility group with me I felt better…but I was still not taking them all with me.

We had finally gotten what we wanted, so how could I complain? I felt guilty for complaining about persistent fainting in the second trimester, or when my pregnancy went well beyond my due date, or after she was born that breastfeeding was very challenging at first, or that I felt like I had spent all of my time working to get pregnant and not preparing to become a parent.  I wished I could be an oblivious person, someone blissfully happy about the whole thing.  It’s okay to have mixed feelings and it’s totally normal.

5. You May Always Carry It With You

I’m one of the lucky ones—I did have to do many rounds of IVF, but I walked away with two children.  I had medical insurance that helped defray the large expenses that go with treatment.  I have a husband who was supportive and a network of family and friends who didn’t add stress to the process.  But all that being said, I will always carry the scars that infertility brought.

When I was in the trenches of treatment, hearing about “normal” friends pregnancies made me so angry.  “Why them and not me?” I asked myself.  I still joke that someday I’ll be in a retirement home, 80 years old, and some other resident will tell me that her granddaughter is pregnant. “That bitch,” I’ll think to myself, still mad that other people can fall pregnant easily, or accidentally, or at no additional out of pocket expense.  I’m largely out of that life stage where my friends are having children, but it was so hard at the time and still stings.

But I carry other things with me now too—I always knew that I could do hard things, but this proved that out.  I can bear daily injections, from teeny Lupron to burning Menopur to the dreaded PIO in the butt, I can advocate for myself when I think a nurse is giving me the wrong daily stim dosage instructions or when my doctor suggested a more aggressive protocol that I felt was not necessary (I was right both times), I can ask for help and clearly articulate what I need.

When we were in treatment my husband and I talked about what life would be like if we “washed out”, and it looked like a good and meaningful life.  When we had our daughter and were trying for a second, we knew that she would always be enough and that would be okay if that’s what happened.  I made sure that a fulfilling career and hobbies were part of me too, places I could retreat to when the grief got too hard.  Infertility will always be a part of me, but it is not all of me.

Mary Bragg lives in the Chicago suburbs with her husband and two children, aged 4 and 1.  She will likely keep paying “rent” on her remaining frozen embryos for an absurdly long time, deep into her 40s out of stubbornness.

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