Some subjects make us squirm. They’re not part of our comfortable consciousness. We know they exist but, given our druthers, we’d rather avoid than confront them. They suffer from the “ick factor.”
Even in 2008, some 25 years after pioneering treatments became available, infertility is one of those subjects.
It’s no wonder those of us diagnosed with various infertility factors shrink in shame or disbelief when the news comes. We not only don’t want to wrap our heads around not being able to have children easily, we can’t discuss infertility or its contributors — endometriosis, varicocele, poor sperm motility, or PCOS to name just a few — in polite society without fear of people recoiling from the ick factor.
I take heart though looking at other subjects that there were once verboten but slowly came out of the shadows and into the light. They range from using the word “breast” or “prostate” and “cancer” together in mixed company. (Now at various points in the year the Safeway cashier asks, ringing up my milk, fruit and salad dressing, if I want to donate to research for either without batting an eyelash.) These topics are not only part of our lexicon today they are matter of factly understood to be parts of the body that have a high incidence of disease … and if the disease is detected early can be successfully combated. It was essential to get people comfortably conversant in the subjects to successfully get them to ask, without shame, for more information.
There are other subjects like mental illness or rape that were once off limits as well. Compassionate and persistent people working tirelessly behind the scenes helped to sensitize society and allow for greater understanding.
Infertility brings more than just physical challenges, it suffers from a huge perception challenge. The issues surrounding it are complex. I recognize that it’s going to take time not only for people to sort them out but to get comfortable enough to begin to be open, to wanting to know more, to seek greater understanding.
No matter. I’m going to be persistent.
January 27, 2008 12:36 pm
So perfectly said. We need to keep sharing our story. Maybe one day it will all change.
January 27, 2008 3:04 pm
This is a timely post for me. This week I spoke with my therapist about the NY Times blog where hundreds of people responded to fertility diet post and where I ended up finding this blog. I told her about how negative many of the responses were and how it seems to me to be a reflection of society as a whole.
She wasn’t buying it. She said I should have just ‘changed the channel’. Well, I’m looking for information and support and it seems the internet is the only place to find it, I’m desperately trying to wrap my head and heart around the fact that I’m not going to have children and how to be ‘infertile in a fertile world.” These aren’t easy waters to navigate b/c of the ‘ick factor’.
So now not only do I feel shame for being infertile, I feel shame for figuring out what that means in terms of my self-identity.
Shame is my strongest emotion with infertility. I’m generally a very free spirit – I generally do things without much worry or concern of what others think. But lately I feel emotions I haven’t felt since I was a teenager. I feel embarrassed, shameful and not at all in the in crowd. I feel lonely because even my therapist doesn’t seem to know what to do with infertility.
Thanks for letting me share.
January 27, 2008 4:46 pm
Your thoughts are always welcome here. Share any time you like.
With all due respect, rather than “change the channel” it sounds like it’s time to “change the therapist.” I’m aghast that she’d insinuate that you should try to avoid the fallout from infertility. Isn’t the point of therapy to help us cope through better understanding of ourselves and our place in this world? I found an excellent local counselor/therapist through RESOLVE a few years ago. She was in her late 50s and had experienced infertility herself. It was apparent to me that having someone who had walked through that darkness was in a better position to help than someone who hadn’t. Just a thought my friend.
January 27, 2008 7:17 pm
I agree with Pamela Jeanne – get a new therapist. Many of them have no clue about how hard IF is to deal with in our society. It almost seems like it got worse with the advent of technology. There used to be a bit of empathy towards those who didn’t have children.
Please, contact Resolve and get a therapist who specializes in treating those dealing with IF/preg. loss / child loss. You are not imagining the hate towards the infertile. It is real. It should not be denied by some ignorant therapist.
January 27, 2008 4:32 pm
Exactly. Ick factor. It traps and isolates us hugely – even if we aren’t even a teeny bit shamed by our bodies and experiences, the fact we simply can’t mention them for fear of people’s reaction is just so isolating. The thing I find most hurtful is the way people’s ick reaction leads them to blame and judge – we are in an uncomfortably icky situation, therefore we ourselves are the source of ick. I have PCOS and one ovary and my insides (until recently) stuck together with scar tissue and a heart-shaped uterus and a tendency to grow polyps because, hey, I am lazy and don’t eat right and have a negative attitude. OBVIOUSLY. It’s less uncomfortable to think that ick is self-inflicted and self-removable than that ick descends from the blue yonder like bad weather. Because, if a person admits ick is random and unfair, they too might get icky! Yes!
Am I ranting? Sorry. Had a bad conversation with my sister recently that I am too cross to even blog about – clearly I am calming down enough to rant.
As for the book, I will TOTALLY buy a copy. Or even several. And hand them out to everyone I know. Good luck with it.
January 27, 2008 8:04 pm
I’m surprised by how much I struggle with this. Every time I finally “come out” to a new person about what’s going on, I find myself whispering “infertility” in such an apologetic way, then immediately regretting exposing that person to my shameful “lady problems” (likely memories from my mom’s generation talking there).
I am trying to overcome this — and it’s helped immensely to get involved w/ Resolve, meet other people who seem cool and normal and just happen to have IF struggles. But I often do feeling guilty for preaching all this “acceptance” and “coming out” stuff when I’m barely able to walk the walk myself.
January 27, 2008 9:40 pm
Infertility most certainly is one of the last taboo subjects. And any conversation with someone outside the infertility community that does occur around it is often vastly misinformed. I’m sure progress will come, but slowly…
January 28, 2008 12:18 am
It’s funny, because I recently finished a book on infertility which I did enjoy. I spent a lot of time traveling over the weeks I was reading it d/t unseen circumstances. Regardless, I would catch myself unconsciously turning the book upside down or hiding it under something if I had to put it down for a bit. Like I was ashamed to have people know what I’m reading about. It’s sad that I felt I need to do that, but honestly … it seemed better than having to suffer the “apologetic” looks I would get. Nor did I feel like having to explain myself to other people.
I totally agree that the subject of infertility needs to be out there and discussed openly. However, right now … at this moment … I feel like I don’t have the strength to carry on this particular battle OUT LOUD. Online or by blogging … that is the best I can do at this time.
One day though …
January 28, 2008 3:56 pm
I’ve spent a lot of my time making sure I didn’t approach my infertility with shame. I’ve been very vocal about it with people in my life and have even been featured in the local paper (and about to be in a local woman’s magazine). What upsets me is now that I’m pregnant after a long hard struggle people expect me to kind of be over the whole ordeal. They especially don’t want to hear me talk about it anymore. I will never forget what it took for me to get here and I will always relate to others who have gone through similar situations. It bothers me that people expect us to push those emotions away and just focus on the future. I will NEVER have children the normal way and I wish people could understand that puts a stamp on your identity that isn’t easily erased.
January 28, 2008 5:47 pm
Thanks for this post, Pamela Jeanne! I too feel strongly that I want to make others aware and informed about IF and its long-term impact on people’s lives. I only wish I had more tools or skills for finding appropriate ways to let folks know what’s going on. The social stigma makes this very difficult, as the subject is so loaded for many people, even if I’ve gotten somewhat comfortable with myself.
Anybody have some good strategies out there?
January 29, 2008 1:00 am
I’m really glad to read all the comments. A woman who can’t conceive or bear a child is still something no one knows quite how to process. You know, in lingering over this entry, I was trying to think what I’d ask from people with whom I’d shared my infertility ordeal. All I can think of is a hug. No words. A sincere hug. I guess people just have too many hang-ups for that.
January 29, 2008 3:43 am
There is definitely a “sweep it under the rug” mentality when it comes to non-infertile people talking with people who are dealing with infertility. It is an uncomfortable subject in part because it is so unknown. Everyone knows someone who has had cancer, but how many people really know someone who has infertility (that is when the person confessed that they had infertility).
But, how much of the ick factor comes from us? I know that there are quite a few couples in our social circle who don’t have a clue about our infertility and frankly, I kind of like it that way because this is one part of me is not something that I want to share with everyone who knows me. It’s nice to have some things that are private.
But, I do think part of overcoming the ick factor that others feel is overcoming it in ourselves. And, I think one reason that we have trouble overcoming the ick factor is the feeling that (however wrong it is) we are to blame for our infertility. If we feel that we are to blame, then we feel like we must be apologetic. On the other hand, I don’t know how many people I really want to tell that our infertility is a result of DH’s low sperm count. It’s a balancing act.
February 7, 2008 8:58 pm
Infertility is a disease of the reproductive system and is not something to be ashamed of. My husband and I were diagnosed as “infertile” and most people assumed that something was wrong with me, when if fact it was my husband. We did IVF and now have twin girls. As a couple we struggled with our infertile diagnosis and we almost divorced because of it.
Most people don’t understand the stress of being infertile. One in eight couples struggle to build a family. As MrsX wrote, most people know someone with cancer, but we all probably know someone who is infertile too.
At one time no one wanted to talk about breast cancer. Now it is everywhere – the media spends a lot of time on this issue and corporations sponsor the cause. I think we can reduce the stigma associated with infertility, but it has to start with those in the midst of the disease standing up for themselves.
Go to the breast cancer websites and check out their statistics. Breast cancer is decreasing in occurrence, but it still gets attention like it is a huge medical crisis. Per the Komen website “…an estimated 178,480 new cases of breast cancer will be diagnosed in American women in 2007 alone.” This is a small number of women in comparison to those affected by infertility (about 6 million couples). And smaller than the 500,000 babies born premature each year in the U.S. (a portion of which are IVF multiples – such as my girls).
It will take time, but more importantly it will take voices that want to be heard.