So it's National Infertility Awareness Week. I know I've been radio silent for the last month and it's for no real reason other than I've been busy and distracted and felt like after this last attempt at baby #2 I haven't had much to say. It's only been a month but it feels like so long ago and I do feel like I've processed things and am totally fine with the outcome. I don't feel incomplete. I don't feel angry. I don't feel sad. I don't know why or how, it's just where I'm at and I'm grateful for being here.
But what I do feel, as someone who has tried really hard to decrease stigma and shame that's often associated with infertility through this blog and through our film, One More Shot, is that IT IS TIME for anyone who struggles to conceive to say F that to stigma and shame. I have written about shame and stigma in a variety of different ways, but being that it's infertilty awareness week, I want to take a hot minute to explore a few cultural and institutional shifts that need to take place in order to really change the experience of the infertility patient.
I think one thing that really needs some revision is the language of infertilty. We HAVE to change how we talk about and are talked to about fertility problems. Being told you "failed" IVF just sounds soooooo....blaming and terrible. Like there is something really wrong with you and you're at fault. Saying, "that last IVF cycle didn't work," essentially has the same meaning but a very different feel. Maybe I'm being nit-picky, but can the word "fail" be shown the exit? A "negative" beta-- how about "there was no hcg levels in my blood so I sadly am not pregnant." That's wordy. We can come up with better, but you get where I'm going with this, right? "Poor responder?" How about the meds often don't work for me as anticipated. Do we have to call a pregnancy over 35 "geriatric"? Can the word "diminished" be replaced with something else? Maybe not, but how about...low? or decreased? Diminished just sounds so...faint. Even calling someone or oneself "infertile"-- that always rubbed me the wrong way. It feels labeling and definitive. Struggling with fertility issues feels a lot less stigmatizing to me, but maybe it's just me. If there's an opportunity to start changing language, I think we should all try. Who's in?!
I also think the phrase, "no one has to know," has to go. What am I talking about? I'm talking about what I have heard many doctors tell their patients when donor conception is first discussed. The doctor is often the first person to have the difficult conversation about using someone else's genetics, and how that conversation happens can set the tone for how a person conceptualizes and feels about using a donor. As a therapist now working with those struggling to conceive, I hear a lot of stories, and many have been about a doctor telling a patient that donor eggs are recommended and they will be referred to an agency that will help them find the perfect donor and "no one has to know." That phrase is like handing someone a box of shame, because secrets = shame. And some people do need to know, specifically the child conceived in this way. No one has to share or be public about their family building choices, but I don't think any doctor should make an assumption that secrecy is best. We must all come to terms with what we are comfortable with and what we decide is best for us to build a family in an alternative way. There is grief and loss and anger and all those glorious emotions, but then once we have committed to something and a child is on their way to this world, we must find a way to reclaim those difficult feelings and replace them with pride and confidence.
With advocacy day in DC coming up, I think the last thing I'll mention is insurance coverage and how I think that plays a role in the shame around the disease that is infertility. Having an ailment in the foot or pains in the chest or something not working right in ANY PART OF THE BODY except the reproductive organs are most likely covered by insurance, thus validating that there is a medical issue that essentially deserves to be remedied. I know there is a lot of variation and a lot of insurance sucks in general, but what really sucks is an almost universal rejection of fertility coverage for a majority of people in this country. And that makes the disease that is infertility feel invalidated and stigmatized. We've got to figure out a way to change some of this!
So what can we do?
We can start by using more positive and less destructive language towards ourselves and others. GET RID OF THE F WORD because no one is failing anything! Don't label yourself as infertile and just try to stay at least neutral if not positive. We can all gently correct people (as I do when people ask me how tall Momo's "real mom" is) when they use language we are hoping to change. And if a doctor ever tells you "no on has to know" ask that doctor why it matters if someone does know? Ask him or her if he thinks you should feel ashamed at how you are choosing to bring your child into the world? Have a conversation if it feels right, you don't need to just take it in. And lastly, if you're fired up about advocacy and trying to change policy then maybe think about advocacy day. I was really hoping to go this year but I have a conflict that might prevent me from going. Talk to your employer about considering coverage and find ways to be heard. It's not always easy but it's important.
These are just a few things on my mind today as I think about NIAW this year. It is time to flip the script. Noah and I will be at the American Fertility Expo on Saturday so if you want to come see the movie and hang out we will be there, doing what we can to continue to build awareness and have an honest dialogue about IF.