Please Stop Telling Me to Speak about Infertility
So I read the recent Huffington Post article by Dina Roth Port about how we need to talk more about infertility. I’ll start with the positives — it’s very well-written and she makes some excellent points about why we need to come out of the proverbial closet. I’m not going to argue with the fact that we do need to talk about infertility as openly as we speak about any other disease. You build understanding via words.
At the time of writing this post, it had 249 comments, which means that the post also got people talking. I didn’t dive into the comments because I know better than to dive into the comments on Huffington Post. I’ve seen what has been written every other time they’ve tackled infertility as a topic. Not that HuffPo is unique — my personal favourite for vitriol is the New York Times. Those commenters usually make me want to face-punch them.
Which is to say that I could be missing out on some amazing discussion happening in that comment section, but I’m going to hazard a guess that I’m not.
So, just to be clear, I think we should be talking about infertility, and I am extremely open in talking about our situation with anyone and everyone — from the grandma buying produce in the food store who didn’t ask me about my uterus at all (but I volunteered its defectiveness anyway because I just like to shaaaaaaaaaare) to everyone who begins their thoughts with the words, “are they twins?”
BUT
The onus was on infertile men and women in this article. We heard all about how WE need to talk about this. But what about the listener? Why isn’t there an accompanying article for all the douchebags who live in the comment section about how they have to listen? And listen better? We can talk all we want, but that comment section tells the real story (fine, I did click over for a moment, saw the words “these comments are really disheartening” and clicked away after seeing that once again, the comments were a divide between those who have experienced infertility and those who say douchebaggy things like this).
I talk about infertility daily. I volunteer the news that my body is defective with the same ease in which I comment on the traffic on the Beltway. I talk about it openly and calmly. I’m certainly not making people uncomfortable with my tone because two seconds before I mention my uterus of doom, we are having a perfectly harmonious conversation. They are asking questions, I am asking questions, we are getting to know each other, we are laughing gaily, we are skipping through figurative fields while the wind dishevels our hair, they ask if twins run in my family, I mention that infertility does.
And the conversation screeches to a halt.
They are uncomfortable. They apologize, they try to change the topic. I smile and say that it’s totally fine, and I try to keep us on topic by explaining just how one goes about creating twins in a fertility clinic. They get more and more uncomfortable. And then I let the conversation change back to more agreeable topics. Such as the traffic on the Beltway.
And is it diseases? Well, no, it isn’t all diseases because the very same conversation I’m describing also had a long interlude about cancer. About death. That we skated over with empathy. The topic of infertility made me feel as if I had just shat in his corn flakes.
So while I agree with the author of the post and Resolve and everyone else quoted in the article that we need to talk about it, I also want equal pressure put on people to hear it. You see — it’s not just what we do. The article insinuates that we are the reason we have little insurance coverage, little support, little understanding. Our lack of talking has brought this upon ourselves.
But that’s a little too simplistic for me. Because this article was talking about it, and you can see from the comment section what happens when people talk about infertility.
I could be wrong, but I have to hazard a guess that those who experienced breast cancer thirty years ago weren’t hearing that they were selfish, whiny, and should just adopt when they finally started talking about their disease. Since, as Port says,
Thirty years ago, breast cancer was where infertility is today — women just didn’t talk about it … There weren’t countless support groups, fundraising walks, and an entire month enveloped in pink. Women battling breast cancer did so in silence and, in turn, many felt isolated and ignored. However, now because there is such an international dialogue about the disease, breast cancer receives multi-million-dollar grants each year in research funding and patients are inundated with an outpouring of support and understanding.
It is very easy for people to understand and get behind diseases such as cancer and AIDS because it is quite clear that these diseases kill, and that has an urgency that infertility lacks. Infertility is hard sell because I don’t think — until you have lived it — that you can fathom what it feels like to not be able to build your family. It doesn’t directly kill you. There are plenty of people out there who think infertility actually sounds like a positive (don’t have to worry about birth control?).
And yet, it hurts so badly that sometimes, you wish for your own death.
It certainly has urgency to me. The problem is conveying that urgency to THEM (that faceless them that we apparently need to discuss our infertility with). Mental illness also hasn’t succeeded in getting that disease’s much needed insurance coverage and support. I think we can learn more from watching that fight than we can from comparing ourselves to cancer.
I think we should fight for that support. I think we should fight for that insurance coverage. But I don’t think we should pretend that it’s as simple as talking about it. Because we still need the other side to listen to it. And let’s hold them as accountable as infertile men and women are held in this HuffPo article. Because, yes, in thirty years, I’d like to see illnesses such as depression or infertility given support and coverage. And hopefully, the comment section change dramatically along with that support and coverage.
73 comments
Awesome! I totally agree!
Bravo!!
Well said. I can’t agree more.
xoxo
Mel, you rock. You have such a great way of really getting down to hte issue. I whole heartedly agree… PEOPLE NEED TO LISTEN BETTER!!! 🙂 Thanks for your continuted advocacy.
Very well said, as usual 🙂
I don’t think it is possible to talk about infertility the same way it is possible to talk about other diseases. Infertility is not a disease, it is a side affect. People are infertile because they have PCOS, or scarring from VD, or endometriosis, or had the mumps in childhood, or have or had cancer…the list goes on and on. There are almost as many causes of infertility as there are infertile people. I totally appreciate that my husband and I haven’t had to spend money on birth control for over 11 years, but many infertile couples have no problems getting pregnant, just staying that way. Without a united front it is far more difficult to get the word out. I for one wish that they would spend money trying to cure PCOS or endo instead of just sending women to to an infertility clinic.
Thanks for this. I was similarly taken aback by the comparison with breast cancer. Would a NYT article on breast cancer lead to such comments as the ones on IF? That degree of compassion and understanding just isn’t there towards IF, and I find it very one-sided that the burden should be solely on the infertile to raise awareness and subject themselves to the heart-wrenching aftermath of the general public.
Unfortunately, I fear there will always be douchebags that spout vitriol about infertility, just as there are indeed douchebags that spout vitriol about breast cancer. In the months after 9/11 I read someone going off in a comment section about how if we weren’t wasting so much money on breast cancer research, we could have been spending more money on the military and 9/11 would not have happened. Umm, yeah, terrorist attacks, as tragic and traumatic as they are, are not the fault of a fraction of a percent of the budget being spent on breast cancer research. Sorry to burst your bubble of ignorance.
Agreed. Being an ‘out’ infertile is pretty difficult. Rather than listening, fertiles reach for their Big Ol’ Book of Bollocks Cliches and pick some choice phrases that make them feel better.
I’m having a miscarriage at the moment and am in that trailing-in-and-out-to-confirm-blood-counts-limbo, and the doctor I saw last night was absolutely full of assvice and ridiculous platitudes… he was nice enough, but clueless; “It’s great that you can afford IVF as babies are very expensive to bring up”. Really helpful, yeah.
Yes, we can all educate people, but sometimes the weight of ignorance is crushing.
Thank you so much for posting this. I have been feeling guilty for not wanting to talk about my struggles with family building more openly. I’m just not up for confronting the douchebags. I do want to be more open, but on my terms. You’re perspective helps me take the pressure off myself. It reminds me that I can talk all I want but I can’t force anyone to listen or understand.
The emotional pain of RPL is something that is very difficult to grasp without personal experience, and I’ve noticed that when I try to talk about it, most people don’t want to listen. Not only that, I find it hard to put my feelings about RPL into words. It goes both ways, but I know that I can talk about my emotions more freely with a good listener . . .
I’m with you 100%, Mel.
I think your comparison to conversations about mental health is spot-on. People see AIDS and cancer as things that *happen to you* whereas mental illness and infertility are seen as defective conditions not extrinsic to you as a person. And if you personally are seen as defective it’s almost like people start to think you’re evil or something. Something like that, I think.
So well said…thank you.
LOVE this post!!!
You ROCK!
Spot on, my IF sister.
And @Elizabeth: You took the words out of my mouth. Telling an infertile woman to “just relax” is like telling someone with depression to “cheer up.”
@sushigirl: I’m so sorry for your loss.
Agreed
Thanks for this post — I agree so much. It was really hard for me to start talking about my infertility, particularly because of the comments I would receive (I think “just relax and it will happen” or possibly “whatever is meant to be will be” are my favorites), but I am now becoming more and more open about it.
I think the comparison to mental health is spot on, too.
I struggled with infertility and endless cycles before I finally turned to egg donation to conceive my 6 month old son. I spent 213,000 dollars all out of pocket to conceive him. I lived in my own little bubble struggling through my infertility to have a child. My support wasn’t my family and closest friends it was all my cyber friends. It was very hard to talk about the road to egg donation. Now that my son is here I have a voice that wants to be heard. I’m proud to be the Mother of an egg donor baby. He is my son and only I am his Mommy.
More people need to speak up about infertility and support each other and fight our government and insurance companies!
I completely agree with you. Everything I have encountered in my IF journey so far points to the fertile world not wanting to hear our stories. My entire family, although supportive, are really uncomfortable discussing IF and have repeatedly told my husband and I to “not tell anyone. It’s no one’s business but yours.” How can anyone feel secure enough to talk about it openly after comments like that?!?! I have bipolar disorder, so not only am I blessed with IF, but I get the added joy of managing a mental health issue. I was getting those same “don’t tell anyone” comments when I was first diagnosed. My response was to talk about it exactly like you do, Mel. It’s a part of my everyday life, so that’s how I’m treating it. My goal isn’t to make people uncomfortable by talking about it, but I do believe that I am helping to end the stigma in my own small way.
Love this!
What a great perspective. I have told very few people about our struggles, and sometimes wonder if I should “come out”. But when I see how even the few close people I confide in react, I wish I hadn’t told them. However close they are, they still come up with obnoxious comments including “go see a different doctor” or “travel abroad to see a doctor specializing in alternative medicine”.
I wish they would understand that we just need someone to listen, not someone to give stupid ill informed advice.
Wow. I LOVE this!
Love this Mel. I hadn’t thought about it from this perspective.
I can talk (and do) to some “friends” till I’m blue in the face and I watch them tune out and hear them say asshole things like “maybe I could carry your children for you”.
Fabulous post, Mel – as always.
Agree 100%.
Well said. Thank you!
I love you, Mel. : ) Excellent, excellent points.
Knowing we’ll have to deal with ignorant comments such as the ones on the HuffPo article are a huge reason why so many of us choose to remain in the infertility closet. We can talk about our infertility until we’re blue in the face, but sadly, until people are ready to listen, really listen, things are not going to change (or at least as quickly as we’d like them to).
AMEN! I always compare infertility to mental health; two illnesses that for some ridiculous reason have a stigma associated with them. I don’t get it.
Such a great post! So well said.
Great post!
ITA with Loribeth’s comment. Those HP comments are as brutal as NYT comments. And it’s one of the reasons that I don’t want to tell the world about my infertility. I can’t imagine hearing some of them to my face. It’ was bad enough just fielding the “why don’t you “just” adopt” comments and now the “see I told you you’d get pregnant once you started the adoption process” comments. Enough to make me want to vomit. I’ve found that most people would much rather talk about themselves than *listen* to someone else.
I love you! I just love you.
This: “Why isn’t there an accompanying article for all the douchebags who live in the comment section about how they have to listen? And listen better?” made me want to stand up and cheer.
amazing post 🙂
I do remember, in my youth, hearing about people my mom knew who were so ashamed because they had to have mastectomies. Sure, the rallying, and voices, and voices, and ribbons have helped, but I would offer the argument that the things that make breast cancer so much more palatable are reconstructive surgery and breast implants. No one has to be ashamed anymore.
There’s probably never going to be a way to make talking about infertility comfortable for people…because you have to discuss the fact that the usual means (sex) did not work for you. Once you add sex to the discussion, people become uncomfortable – like you’re about to tell them what positions you’ve tried. Until discussion of sex stops being taboo, infertility will still be an uncomfortable topic. But, judging by the content of my TV Guide, we’re getting closer!
I decided to hear what that author was saying, so I “spoke up” and published a link to that HuffPost article on my Facebook wall.
Not a single one of my 463 friends commented. I spoke. They weren’t listening.
Thanks Mel. I feel like I understand things better after reading yoru post.
I always read your blogs and comments with interest and learn a lot from them. Though I see both sides of the discussion about the issue of whether “to talk or not to talk about one’s infertility,” I would like to add some historical perspective regarding how people perceive those with AIDS.
“It is very easy for people to understand and get behind diseases such as cancer and AIDS because it is quite clear that these diseases kill, and that has an urgency that infertility lacks.”
Yes, maybe there is sympathy in 2011 but go back a few years and remember the near hysteria about AIDS that existed in many parts of the country. I am probably am a lot of older than many of your readers, so I can vividly recall the first two decades (1980’s and 1990’s) of the AIDS epidemic when there was very little sympathy for people who were HIV positive or had full-blown AIDS. They were blamed for contracting it because they were gay or IV drug users or promiscuous or Haitian. People who were brave enough to out themselves often suffered dire consequences – they were ostracized, lost jobs and severed connections with friends and family. Many people were afraid they were going to catch AIDS or their kids would. In my opinion, that period was one of the darkest in American history. Nonetheless, there were still many supporters of AIDS patients, though now it has become mainstream to do so. However in the early days, even supporters of AIDS patients were criticized.
I am not saying that there is a total analogy with the AIDS experience, but I think the infertility community could learn something from its history of how it rallied support.
You said that brilliantly, bravo!
I agree with your well worded response to the article. I do try to be open to an extent about my struggles to have children, and I get a wide range of responses. Over the years, (it has taken years of me talking to the same people) some of the fertiles still have a hard time reacting with compassion. “Don’t try IVF, you don’t want octuplets!” “Maybe you should just appreciate the one you have.” But at least I don’t feel like I am hiding anymore, so that is a plus. By talking about my experiences, I get to be the real me, and maybe I’m making a small difference.
great post!
You have such a way of connecting the dots.
Wonderful post and couldn’t agree more.
It was interesting because I posted a link on my FB page and I had a few people that got pregnant easily either “Like” or actually comment in a supportive manner.
Well put, Mel. I found the HuffPo article through a Resolve newsletter/email and it hadn’t been sitting well with me since reading it, but I couldn’t figure out why. You summed it all up very nicely!
DH and I are partly out of the closet on fertility issues–family and friends know we’re going through them, even so far as knowing IVF is on the “menu” of next steps, but after seeing me shut down and/or get downright hostile in response to their (probably well meaning) assvice, they don’t ask questions anymore and we don’t provide details. I just decided I could no longer stomach the platitudes. I’m also tired of being the teacher–if someone is truly concerned about situation, they will make the effort to research it.
I also was troubled by the comparison to breast cancer–I think your comparison to mental illness is much more appropriate.
Thank you for giving such eloquent words to what so many of us felt with this article.
You always make me think, Mel (and sometimes that’s just plain uncomfortable). I actually thought the article made a valid point – the whole Advocacy Day thing really gets me. Of course, I’ve never actually been able to make make it to one myself. And that’s probably why the article touched me – I have only been speaking out about my RPL for a couple of years, and I’ve been in this fight for five. You’re totally right though – the other side DOES need to listen.
I recently sent my MIL – who was insisting that we have a big hoopla for my birthday – a lengthy email in which I poured my heart out and explained that I find birthdays extremely depressing. Another year older, still no baby, yada yada. And do you know what her response was? NOTHING. Not a word. Conversation ended before it started, which is usually the response I get whenever I bring it up to anyone.
And re: the comments – I actually responded to that d-bag, and I was kind of surprised to see the author of the post in the comments section calling people out for their lack of empathy. Presumably, she isn’t infertile, but she really seemed to get it and to see how hurtful the other commenters’ words could be.
I am very open about my infertility. Oddly, it comes up much more now that we have a child. People are forever asking where #2 is. I tell them the truth, that we likely cannot afford a second baby though we would be thrilled to have one. Then they get squirmy, but frankly what could be more intrusive than asking about our sex life to begin with? I am frequently blown away by the level of ignorance that is out there. Especially in the media.
well said…less talking, more listening and less judgement. People love controversy and citing extremes like Octomon and trivializing adoption as if it was as easy as going to the mall to pick out an outfit is all those idiots have to prove their point. People love to judge – just as long as judgment doesn’t fall on them.
I feel compelled to add that the whole pink ribbon thing gets on my nerves. I don’t need a damn yogurt and a t-shirt. That article was annoying- it took me two tries to make it through. She really sums it up in a nice, trite, little package. Like we should all hold hands and sing We Are The Infertile World.
“Why isn’t there an accompanying article for all the douchebags who live in the comment section about how they have to listen?”
Touche. The douchebags who live in the comment section. Bwahahaha.
oh I know those comment douchebags oh SO well…heh
I liked that it was a link to an article that wasn’t too crappy that I could tweet and share with others and basically remind them that I am totally available to talk va- jay-jay business with if need be.
I think the more of us that talk as openly as you do- the over- sharers, if you will, the better. It gives the conversation permission to happen. Because as funny as it is to most of us infertiles- people still associate babymaking with the having of sex (HA HA HA!!) so it just isn’t something to talk about.
Which is why I used the words “sperm donor” like 400 times at the first playgroup I went to here.
I’m going to cheat here and just link to the comment I left on Julie’s blog regarding the HuffPo article. It’s an extension of a comment I left on a fellow IF blogger’s facebook link to the article.
In fairness, to sum up the comment for those who don’t want to click over, I *hate* the “blame the victim” vibe I get from the RESOLVE quote re. infertile patients not chatting it up enough, and frankly, it almost feels a bit like buck-passing. “You know, we over here at RESOLVE are working our tails off to promote infertility, but you silly patients just won’t talk about it, so, you know, our hands are just tied!”
There’s more to it than that, but that’s the gist of my response. Here’s more detail:
Comment on a little pregnant’s Salmagundi post
lol@ sex making babies.
excellent post. I think you should submit an op-ed to the HuffPo, or better yet something even bigger. really important point you;re making, about those douchebags who don’t listen or hear what is already being said.
Thank you for writing this Mel, it’s interesting to see how it’s being discussed in the media. I was especially interested in the comment Diana Roth made about the WHO defining IF as a disease.
My situation is that my husband and I have wanted to get pregnant for 7 years. As hubby has a vasectomy from previous marriage, our marriage is sterile. It causes both of us immense heartbreak, and our battle to get public finding for IVF treatment from the NZ health system is awful.
I try to be open with my family about our struggle, but have not been able to talk to work friends about it yet, perhaps because I need somewhere to get away from IF for part of the day and also because we’re not yet able to actually start medical treatment.
IF should definitely be treated as a medical condition. It is a natural part of the human condition, much like pregnancy, colds, broken legs, and arthritis. All natural human aients and conditions should be treated with the same respect and dignity!