Friday, July 27, 2012

The Language of Infertility

I have been thinking a lot recently about how amazingly fortunate I am to be a mother. I often think about what I went through to get here and so many other hopeful women and men facing their own struggles with being involuntarily childless. I hate that any of us have to live that term but I love how accurately it represents what the experience is truly like and I am so grateful to the sociologists I referenced in my literary review for coining it. Language is a crucial part of any cause and using the right language can make a world of difference in reaching those in need and enacting change. With that said, I truly think the term "involuntarily childlessness" is an important and deeply relevant term that needs to be used more within our community. 

Yes, infertility is still a very important and powerful term. It gives us a medical diagnoses, a definable issue to understand to dissect and try to cope with. But for me and I think for so many others who struggle with "infertility", the term itself leaves us feeling incomplete. It doesn't quite encompass what our struggle is really about. It is the word that isn't quite the word you were looking for, but settle on when the right one never makes it off the tip of your tongue. It's good but not good enough. It acknowledges that those of us unable to easily have children are facing something real and big and difficult but it leaves so much more out. It isolates those of us that can conceive but suffer from tragic losses. It discounts entire groups of women and men who find themselves ready, willing and wanting children but not in a socially acceptable position to have them and therefore afraid to or unable to actually try. It fails to include those feeling a new surge of pain at a disrupted adoption, a failed cycle, a canceled donor or a lost pregnancy. It leaves out the millions of people struggling month after month who have yet to pay a visit to a doctor and receive an official infertility diagnoses. Most importantly, it fails to adequately name what matters most to those who are facing it. Specifically, people with infertility, often don't care about being infertile as much as they care about not having children despite wanting them more than anything. Infertile is second to being involuntarily childless.

At least, that's how it was for me. When I did the research for my paper and found that term, it really spoke to me because that is how I identified myself over just about everything else. I have an official diagnoses. I know exactly why I can't get pregnant on my own. I am medically infertile and it definitely matters to me. I have gone through my fair share of feeling betrayed by my body, being angry at myself, feeling like less of a woman, less of person for being unable to conceive. But conception was always the smallest aspects of the mountain of emotions I felt when struggling with infertility. What mattered to me more was that I wanted to be a mom. I wanted a child to care for, to raise, to clean up after, to spit up in my hair, to kiss, to set curfews for, to cuddle, to love. What broke my heart on every holiday, every weekend outing, every quiet morning wasn't a medical term but the deep feeling of sadness at wanting more than anything a child with whom to celebrate and experience all the wonderful and all of the every day joys of life, but having empty arms anyway.

I know there are so many women and men out there who have felt that pain who might not consider themselves "infertile". Who don't know about RESOLVE, don't attend support groups or seek medical care. Maybe they just aren't there yet or don't want to face something so daunting or scary. I will never forget opening up to a friend about how emotional and difficult it was trying to conceive and how broken-hearted I was about being infertile. At the time I hadn't been officially diagnosed or started treatment yet. Because of this, she tried to comfort me that I wasn't really infertile. I didn't have to do anything crazy like IVF (gasp!). But despite my lack of diagnoses, I still clung to the term because I knew what I was going through was more than just "TTC". I had been on that road for far too long and been through far too much pain. I was involuntarily childless. I wonder if we integrated that term into the discussion on infertility and loss more often if we might be able to reach more people in need of support. I also wonder if we might be able to better reach those who have never had to experience a life of involuntary childlessness and allow them to more easily empathize and understand our experiences. Yes, some infertile people adopt, some have babies through ART and some never have children but what we all have in common is that none of us chose to be faced with those decisions. We all grow up presumptively believing that one day, when we are ready, we will be able to be parents. It's just a given. But for 1 in 6 of us having children doesn't turn out to be something automatic and instantaneous and I think this term helps convey that. 

Of course, I don't want to throw the baby out with the bathwater. The term "infertility" is still very real and very needed. Just as infertility does not encompass the entire experience, neither does the term involuntary childless. Secondary infertility is very real, very prevalent and very important. I in no way wish to discount the very emotional struggle of parents facing difficulty conceiving for the 2nd, 3rd or even 4th time. Infertility still matters. I am still faced with it nearly every day and will be swimming in it again when I go back for another FET to hopefully have a second child one day.  While I still am and always be infertile, I am enormously blessed to no longer be involuntarily childless. These two terms, while incredibly similar aren't exactly the same and I pledge to do my part to acknowledge and provide support and advocacy for both experiences.


SLESE1014 said...

wonderful post....and you're right...I will always be infertile, but I will never be involuntarily childless. A wonderful way to look at our situation... Here's hoping the word gets out and everyone can educate themselves and get the medical help they need. Praying everyone gets their miracle child!

Anonymous said...

Thank you, I have recently been looking for facts about this question for a while and yours is the best I have found so far.

Paula Schuck said...

This is a great post! Very true and a great reminder to think about the words we use to frame any issue.

Anonymous said...

Thanks for this beautiful post! My husband and I have been TTC for 2 years and we've had no luck! I've wanted to be a mom forever and it makes my heart hurt everyday! Sometimes it's nice to know your not alone and there's still hope!! Thanks again this was so beautiful!

Christa said...

Once again thoughtfully and beautifully stated. Your are an amazing writer and will be a powerful voice in your field. I am not al all biased by being you SIL. You rock.

lisa said...

i am Lisa a proud partner of resolve and received the information via email. since i have checked out your blog and am so happy for you!
i wanted to ask as i will be offering an upcoming retreat for women struggling with fertility. if it would be appropriate to post the info. here on your blog?
i appreciate your consideration.

AGAIN, congrats!!! what an honor:)