This morning I came across this article by Lorie Parch on Conceive Online: Is there a stigma attached to infertility? Here’s an excerpt:
Probably most TTC women – maybe all – have had awkward moments with a friend, family member, coworker, or neighbor who simply didn’t know what to say when you told them you’re having trouble getting pregnant. Or worse, they said exactly the wrong thing when you told them. But that’s not the same as being stigmatized, as if you were guilty of some grave offense.
Ms. Parch does go on to say that yes, infertility sucks and we do experience a ton of crap as infertility patients and suggests that stigmatization might exist without our knowing. Which doesn’t make a whole lot of sense, but okay, I’ll bite.
I posted on Conceive Mag’s FB page in response to this article, because I think it opens up a lot of messy talking points. While I think Ms. Parch’s intent is to provide an honest discourse, what she’s really doing is marginalizing the very patient community for whom she writes. In fact, Parch’s piece feeds right into the stigmatization that we already face: that we must constantly be on the defensive, constantly validating our experiences and emotions to others, that we have to somehow justify our stigmatization.
See how this can be a real can of worms?
Parch asks us to talk about how we feel judged, how we’ve felt stigmatized by our infertility. Here’s what I have to say in response.
- If you are a working woman, you face stigma for leaving work to pursue treatment. RESOLVE actually has an article posted today about talking to employers about your infertility. I’ll be honest: this is one of the reasons I left my job. It was easier to start a job for myself than trying to negotiate short notice sick leave for doctor’s appointments, testing, and the like.
- Infertility treatment faces the stigma of being perceived as elective in 35 states. Only 15 states have mandated coverage for infertility treatment. When the insurance industry thinks that your right to build your own family is an elective procedure (but say, taking pills for erectile dysfunction isn’t) there is exists a stigma within American healthcare about infertility patients seeking treatment.
- Young people dealing with infertility are told “they still have time” when really, they may not. And this advice isn’t just coming from nosy friends and family – this is coming from their doctors and GYNs. If pregnancy isn’t happening, or worse, if recurrent miscarriage occurs, there’s judgement that we can always just try again. Infertility however, is a biological disruption of basic biological function. You have to treat the cause, not just continue to have sex and hope for the best.
- If you are 40+ years old, there’s the stigma of being told, “Well, you waited too long. It’s your own fault.” Advanced maternal age is such an unpleasant term, but a cold hard truth. Fertility declines as you age. And there’s a stigma that comes with this end of the age spectrum too, that women this age should have made better choices when they were younger.
- If you come from a cultural or religious background where big fertile families are the norm, there’s a stigma that either you’re failing your cultural community or that G-d is punishing you for something you did. The other stigma that religious infertility patients face: “You’re not praying hard enough.”
- Infertility patients are stigmatized by not adhering to cultural norms and timelines. Media messaging tells us that it’s fall in love, get married, have babies. When we deviate from that plan or worse, on societal and culturally dictated timelines, we invite ourselves to questions. “What’s taking so long?” “When are you going to make us grandparents?” By having to go on the defensive, we face the stigma of not going along with (because we are physically unable to) the societal status quo of marriage and family building.
And finally, perhaps the hardest stigma of all…
- Infertility patients stigmatize themselves. With all of the pressure around us: friends, families, even spouses, our careers, the media… We judge ourselves. We wonder what went wrong, how we could have done something differently. We wonder about what we did to deserve this. We second-guess our life choices and we doubt the abilities of our own bodies. We see ourselves as failures. We feel broken. We worry about what other people think of us.
We carry the stigma of not being able to do one of the most basic human functions, and we carry that with us every single day.
It may not be a grave offense, but damn if it doesn’t feel like one.
I definitely hate having to validate myself to EVERYONE. As a young person who is infertile it sucks not being taken seriously by, 1) family 2) friends 3) Primary Care Manager 4) Gynecologist finally 4 years later, and about a million “You still have times, It’ll happen as soon as you stop tryings, You’re too young to worry about thats” we finally found our voice to not justify our endeavors. This is what we’re going through it’s real.
It’s a condition, not up for your opinions or statistics.
Beautifully put. I really understand the cultural norms and timelines part. I am headed to a holiday party this evening and I know a pregnant co-worker/friend of mine who will be there so am preparing myself for comments from strangers like, “Does this beautiful belly inspire you to have one too?” and “I’m sure you are next!” I know no harm is meant by it, but it is hard to be reminded that society has an idea of where you should be in life as far as marriage, starting a family, etc and with IF, timelines are impossible to adhere to.
Hi from ICLW
I’ve always been a pretty open person, including with infertility. But it isn’t spoken of much, except within the circle of infertiles. I definitely fear having to explain to my boss why I need all kinds of unplanned PTO for fertility treatments, and HATE HATE HATE that insurance finds having children to be elective. UGH.
Excellent post, Keiko. Especially the part about giving ourselves the stigma.
Amen, sister. Thanks for the good cry. I needed that tonight.
I don’t know how anyone can think infertiles aren’t stigmatized. Great post Keiko.
Thanks for this post!
I have a good friend who had made terrible comments about another infertile friend to me long before even I knew I was infertile. Talk about stigmatizing our friendship! I don’t know if I can ever get the things she said out of my head.
The stigma in religion also brings up people who believe God must not think we are meant (or deserve) to be parents.
Thank you for presenting what people in this community experience in such an eloquent way. Sometimes I don’t know what we’d do without you…
I love to read–books, magazines, the internet, and I enjoy many different subjects and learning about new things and new perspectives–and reading posts like this really expands my viewpoint on infertility and how people affected by it feel and interact with others when it’s a topic of discussion. It’s been very enlightening and helpful to get the thoughts and feelings of those affected by this and understand what not to say and what support/input is and is not welcome. As a result, and because of my own experience with believing I was not able to have children, I have (hopefully) become a better friend to people in this or any similar situation, but especially one as challenging and heartbreaking as infertility. I truly hope those dealing with it and the stigma attached to it can increase awareness with posts like these and help their family and friends offer support and not judgement. No one, whether they can or can’t have children, choose to have them or not choose to have them, pursue treatments, adopt, foster children, etc., should be judged, marginalized, or given grief about it. I hope to be a better friend, sister, or in-law to anyone who might be suffering from infertility or any other problem related to it because I’ve read well-written posts like this one.
Everyone in my husband’s family gets married and has kids right away. We always laughed and told them when we did start TTC we weren’t telling any of them because they had asked so much. That was 4 years ago. Society presents it that we marry and have kids… we feel broken when things don’t work out that way.
I just wish more folks would read this blog post and have an “ah-ha” moment. No one likes to be bullied by others thinking they know better about our own fertility just because they were able to reproduce.
If that’s not stigma, I don’t know what is. Thank you so much for this response!
I’m so glad you are so well-written. Because I’d of responded in tears. Seriously. It’s hard being so misunderstood, but it’s even worse when the media doesn’t do a thorough job.