I've read a couple of articles lately talking about a “growing women’s movement to de-stigmatize infertility.” That’s a quote from an article last week on Yahoo, which starts by saying that infertility used to be something that was thoughtful shameful, a hushed-up topic that was simply not discussed. That may have been the case decades ago, but it’s hard to think of that as a recent phenomenon. So we wondered: Have you experienced stigma as someone who’s had difficulty conceiving?
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. One article quotes a survey by the drug company Merck in which 61 percent of respondents hid their infertility from family and friends, and almost 50 percent didn’t tell their own mothers. Thinking back on awkward comments and responses I got over the years, there was an element of judgment to a few of them - if I'd only done things in my life this way, like trying harder to marry sooner (I'm not sure how much harder I could have tried!), I wouldn't be in this predicament. It could be that the judgment and stigmatization in my case was completely hidden - that the people around me didn't have the nerve to tell me all the things they thought I had done wrong, that resulted in my not having a child. So perhaps you can be stigmatized and not know it? I'd love to hear your experience.
One of the articles I read talked about a book I had not heard of before, Silent Sorority, a memoir about infertility written by Pamela Mahoney Tsigdinos, a woman who tried for a long time to conceive and who never became a mother – a story you almost never hear told. Tsigdinos writes a blog of the same name about her experiences in the aftermath of not being able to conceive and deciding at age 40, after multiple fertility treatments, that she’d had enough.
We’d like to hear what you think: Have you experienced stigma and judgment from others about your inability or difficulty conceiving, or the choices you’ve made as you’ve tried to become a parent?
My husband and I have been struggling with infertility for 2 years and 7 months. I came out to family and friends about our infertility about a year ago once we got our diagnosis of male factor infertility. I am the oldest of two children and my husband is an only child. We are pressured by our families to give them grandbabies. While this pressure is surrounded by love and the best of intentions, its still pressure. When I came out about our infertility and started talking more openly about it, I received one of two responses: people said the wrong thing and only hurt us more, or I was simply ignored. People were made uncomfortable by my announcement and from me trying to spread the word about infertility and the resources available. So much so that people stopped defriended me on facebook, blamed me for my problems (you don't pray enough, its not your time, god clearly decided that its not meant to be) or just stopped talking to me. At family events, I am always in the corner by myself with just my husband because no one tries to understand our pain but yet no one wants to do anything to try and understand our pain. But they expect us to be the support friends and family and be happy about them and their families and their pregnancies and get mad at us if we aren't. The only support that I found outside of our parents were the other infertiles I have found through online support groups. When I came out, I felt even more alone in this fight. I felt vulnerable and alone.
Why? Because this is something that makes people uncomfortable. People only want to hear good news when it comes to the functions of your body. They only want to hear that you are pregnant or they want to hear about your children. They don't care to hear that you can't. We struggle from a disease yet we get none of the support that people suffering from other diseases have. People openly talk about breast cancer and breast cancer research, AIDS and AIDS research, medical insurance companies cover treatments for both but clearly state in their policies that they do not cover infertility treatments or drugs. HOW IS THIS NOT A STIGMA? The only people supporting the infertiles are the infertiles themselves and the doctors and nurses treating them. Yet when we speak out and seek support, we get articles like this telling us that we are creating our own stigma?
Most of us are embarassed and ashamed of the fact that we cannot do what our bodies were CREATED to do, and then we watch those that do speak out get ignored, or left behind by those we have intrusted our failure to. This is something that affects 1 in 8 couples of child bearing age. This is not something to ignore. If you do not suffer from infertility, chances are that you know someone who does. And if you think you don't know someone who does, someone simply hasn't told you yet.
"The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful, some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all,... we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?" -Laura Bush
Yes, there is still a stigma attached to infertility, although recent efforts by groups and individuals is making more people aware that they are not alone, and helping friends and family understand the issues. Most of the comments I receive are well-meaning, but ill-informed, and usually boil down to the same thoughts . . .people are sad for me, but truly believe I either brought infertility upon myself, or I'm somehow not trying hard enough. "If you had more faith in God . . ." is one I have heard many times. Or, "If you just tried harder to relax/wore different underwear/lost weight/gained weight/tried different sexual positions." Or, "You must have done something to lose the right to be a parent." I have gotten these comments from friends, family and total strangers. I hope our culture will soon realize that infertility is a medical issue and a physical disability, not a punishment from God or the natural consequence of some misdeed. If it was, then how do those people explain the fertility of drug addicts, abusive parents, or anyone else who commits illegal and immoral acts.
I do feel like there is a stigma to infertility. I have been TTC since April 2009. There have a been plenty of awkward moments in that time, but there are some comments and attitudes that I would categorize as judgmental, as though it's my fault that I don't have a baby (medically speaking, my husband and I both have problems). People have judged me because of my weight, saying that's why I haven't conceived yet, or that I must be too anxious or stressed. In fact, I'm anxious and stressed because of my infertility, not the other way around. I have even had people think that I must be a wicked person and that God is judging me by not letting me have a baby.
I think that is what most women are afraid of when they keep their infertility a secret.
If I have been, I didn't realise it. I've had a few miscarriages and found out about 3 years ago that it's because I have Hughes Syndrome. I didn't go for infertility testing, I found out because I was also ill with 2 other syndromes and this came out during the testing. It was nice to finally know why, but it didn't change anything. I don't want to be a parent. I have never tried to get pregnant and it wasn't something I sought. Every time I found out I was pregnant, my first thought was 'I've got to have an abortion, I can't have this kid, I don't want it'. I guess women aren't supposed to feel that way. We're supposed to be upset if we can't have children, and so I feel a bit of stigma from that. If someone asks if I have kids and I tell them no, it's somehow ok for me not to have them because I'm infertile, but it's not ok for me not to have them because I don't want them. I look at it this way: I have never wanted them and nature has ensured that it will be so. I'm 42 now, that biological clock has never ticked for me yet and as much as children annoy me, I doubt it ever will. Children irritate me so much that I will end friendships with friends who start families because I'm not interested in being around that. And if I'm truly honest, I rarely think about it. I feel very sorry for women who want children, can't have them and are distraught and obsessed about it. I don't know which way is worse, theirs, or mine. Mine may cost a few friendships here and there, but it's not costing me thousands of dollars and making me feel like something is missing.
My wife and I struggled with infertility for three years (we finally found success, thanks to the supplement BeeFertile). It is difficult to discuss. It is a personal issue, but is even hard to discuss with friends and family at times, due to misconceptions/mispercetions on both sides (both the TTC couple and the friends/family). I think that the stigma is starting to change, but still is a factor.