Join the Movement: Speak the Silence

I started the draft for Monday’s post on April 8, 2011. Over two years ago. That is how long we have kept our infertility private. We did not tell our families till right before my first surgery. We did not tell select friends until we were starting IVF. And we kept it off our blogs completely until the Arizona legislature tried to restrict IVF. If the legislature had not done what they did we probably would’ve kept it silent until our baby was here.

What we did is not unusual, it is very common in the infertility community. We kept it quiet on purpose. I particularly did not want my uterus to be an open topic for conversation. I did not want to hear everyone’s advice and comments. Because while I know they would be well meaning, they would not be helpful. And remembering that a hurtful comment is well-meaning is not always the easiest to do.

I did not want to be told to “just relax.” That is one of the most common things people dealing with infertility hear. And it’s complete crap. I heard it often from a well-meaning individual. Stress does not cause infertility. Telling a couple to relax implies they aren’t having kids because they are doing something wrong. Nobody tells a diabetic or a cancer patient to “just relax.” Infertility is a disease. It is classified as a disability. Relaxing will not make it go away. Relaxing helps you deal with the stress of it, but it will not cure it.

I did not want to be told to “just adopt.” There is no “just” about adoption. Adoption is a perfectly valid family-building option, but it is a rough, long road. It involves grieving the loss of possibly having biological children. It involves both parents being completely on board. It involves paperwork and home studies and lawyers and waiting, and waiting, and waiting. And it does not cure infertility. And I especially did not want to hear stories about your cousin’s neighbor’s best friend’s sister who started filling out paperwork for adoption and got pregnant. Adoption paperwork does not cure infertility.

I did not want to hear opinions or advice about treatments. We researched our options. We talked with our doctor. We knew what was out there, what was possible, and what were good options for our case. And we knew what we were physically, emotionally, mentally, and financially able to deal with. We knew our limits.

I did not want to hear about how lucky we were to not have kids, to not have to get up nights with them, to not have to deal with tantrums and illnesses. I did not want to hear about how great it was that we could do what we wanted without worrying about planning around children. I did not want your children (so don’t offer). I wanted our kids. I wanted 2am feedings. I wanted all of it.

I did not want to hear about how lucky we were to lose our son before we got to know him. We celebrated the heck out of his life, brief as it was. We dreamed and planned for his life. And then we grieved and mourned the life he would not have, the life with him we would not have.

And I did not want our infertility to be the topic of every single conversation. Infertility does affect every aspect of my life, but it is not my entire life. During our journey I have also done all the research for, written, and defended my doctoral dissertation. Talk to me about that. We’ve gone on trips. Ask us about those. We continued with our previous interests. Let us talk about them.

What should you say to someone who confides their infertility to you? Because silence, ignoring it, pretending it isn’t happening, can hurt too.

The most helpful thing people have done when they find out about any aspect of our infertility is let us know they care, let us know they love us, let us know we can come to them, and then let us bring it up when we need to. There are days we need to talk about it and on those days we’re grateful for a listening ear. And there are days when the last thing we want to do is talk about it so we’re grateful for the concern with the rest of our lives.

Tell them you support them. One of my favorite responses was when I told a friend we were going to start IVF and she genuinely, enthusiastically replied “Good for you!” No judgements. No comments. No advice. Just genuine excitement for us.

Tell them you don’t know what to say but you are praying for them, they are in your thoughts.

An article in the LA Times recently talked about circles of support. Brett and I, at the center of the circle, have complained and griped and moaned to each other. We have also joked, often inappropriately, about it to each other as well. And that’s our right at the center of the circle. Each of the successive circles outside, as we’ve opened up to people and added more circles, has offered support. We are surrounded by a wonderfully supportive family. Infertility has opened up avenues of connection that had not existed before (the “1 in 8” statistic is not representative of our families, where the statistic is closer to 100%). We have a supportive community of friends, many of whom have dealt with their own issues of infertility and miscarriage, who knew where we were coming from because they’ve been down their own version of that road.

If someone dealing with infertility welcomes you into one of their circles, realize it might not have been easy for them. Ask them what they need. Let them take the lead. Offer support (Resolve has a great page with information for family and friends). And continue to be their friend in every way you were before.

Basic understanding of the disease of infertility
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