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.

Tuesday, July 17, 2012

Is There Such a Thing as an Infertility Scholar?

Remember a little while ago, I talked about wanting to go back to school pursue my master's degree? And I said I wanted to focus on an education that somehow contributed to the IF community? Well, this month I took my first steps toward that goal and began an undergrad class that I need as a prereq for my grad work. And for my first assignment, I did just what I had hoped to and focused my research on the IF community! I know this is crazy geeky to admit, but I really had fun writing this paper and genuinely enjoy this class in general. I mentioned sharing it on my blog, which some of you were excited about, so now that it has been turned in and graded (I got an A!) here it is! Keep in mind, I was working within the confines of an assignment, so this is not comprehensive. Honestly, there were so many more aspects I wanted to tackle and I had all the research to do it, but it couldn't be longer than 2 pages, so I had to keep a narrower focus.  Despite the fun I had researching and writing this sociological literary review on infertility's effect on identity, it might still read as dull for some of you, so if you just skim or decide to pass on reading it altogether, I won't be offended. I think it is a fascinating subject though and I would love to learn more and eventually see the issues surrounding infertility more incorporated in academia. So without further adieu: 

The Effect Of Infertility on Gender and Identity

            Most young men and women approach adulthood with the assumption that they will become parents (Peterson et al 2006). While career and life goals constantly shift throughout childhood and adolescence, the social expectation that girls and boys grow up to become moms and dads does not waver and many young children spend their time imagining what it will be like to become a parent (Ulrich and Weatherall 2000). When this vision does not come to fruition naturally and easily, the resulting shift in one's lifelong understanding of identity can be monumental. Research indicates that both men and women facing infertility or involuntary childlessness undergo dramatic shifts in identity, gender roles and self-definition as a result of their experiences. 
              Numerous studies on the impact of infertility have shown the negative effects the condition can have on identity and sense of self. Nearly every study conducted found a correlation between the experience of infertility and feelings of grief, uncertainty, loss of control and personal failure ( Zucker 1999; Webb and Daniluk 1999). In a study of women facing various reproductive difficulties, Zucker (1999) noted that women experiencing infertility more often reported feelings of failure and uncertainty than the other, non-infertile, groups. These feelings are not exclusive to women, as Webb and Daniluk (1999) observed that the men in their study experienced a deep sense of grief, powerlessness, loss of control and personal inadequacy as a result of infertility. This loss of identity and control in one's life is not limited to the area of fertility. Quite often this sense of failure and powerlessness pervades into every aspect of one's life as a result of the feeling of lost control over one's own body and reproductive choices (Letherby 2002). 
              More profound than this general sense of loss and personal failure, is the rate at which both men and women feel like failures in their respective gender roles. Women, for instance, feel pressured by an expectation of motherhood and due to this socially constructed ideal of women as mothers often feel that they have failed as women if they become involuntarily childless (Ulrich and Weatherall 2000). Letherby's studies show that it is often considered socially unacceptable for women to be childless or to live as “non-mothers” and therefore these women experience social stigma and the feeling of not being “real” women (1999 and 2002). Similarly, men report feeling pressure from family, friends and society to become fathers and perceive an assault on their masculinity if they are confronted with infertility (Webb and Daniluk 1999). This perceived loss of manhood due to infertility can be so pervasive that some men in the study by Webb and Daniluk (1999) attempted to prove their masculinity through extra-marital affairs or “super-jock” behavior. Even men who did not become hyper-masculine in the study, still reported the desire to conform to traditional male gender roles to be “strong” and not share their pain or emotions with anyone else when first confronted with their infertility. The prevailing theory on behaviors such as this, is that men and women when faced with threats to their identity or sense of self control, seek to compensate these feelings by exerting more control in other areas of their lives or reaffirming gender roles in alternative ways (Zucker 1999; Webb and Daniluk 1999). Studies on the differences in coping mechanisms between men and women facing infertility demonstrate this by showing that both genders initially embrace coping methods traditionally associated with their gender, such as seeking social support for women and distancing or avoidance for men (Peterson et al 2006). 
             Ultimately however, the effects of infertility on identity as it relates to gender roles proves to be transformative rather than merely negative. As a result of these feelings of failure, both men and women are forced to reconstruct and redefine what it is to be a man or a woman. They inevitably learn to separate their sense of femininity and masculinity from their reproductive abilities and develop of sense of self-worth that is not tied to their fertility (Webb and Daniluk 1999). This redefinition of gender roles in response to infertility is shown to provide great emotional benefit to both husbands and wives, as it allows both partners to be more actively involved in treatment and to better share the experience (Peterson et al 2006). Men especially seem to benefit from the reconstruction of gender roles and research shows the process allows men to feel more comfortable expressing aspects of their personalities traditionally assigned to female roles such as compassion, empathy, communication and connectedness. These men report feeling changed in positive ways that not only strengthen their marriages and families but their sense of self as well, as they feel unburdened from strict gender role expectations and free to live “lives that more fully reflect their complete humanity” (Webb and Daniluk 1999:22). Women also are shown to utilize education and other resources in order to cope with infertility's negative experiences and draw positive effects from them (Zucker 1999). Many women report finding peace with infertility by challenging the conventional definitions of 'mother' as well as the notion that motherhood is a woman's only valuable contribution to society (Ulrich and Weatherall 2000). It can be argued that in redefining their own womanhood, these women resist being reduced to gender stereotypes and demand that society recognize their multi-faceted existence. It is important to note however, that transitions in identity are not one-dimensional nor do they occur in a linear fashion. Many subjects report feeling negative emotions and positive shifts simultaneously (Letherby 2002), suggesting that infertility's effect on the self is layered and complex. 
               It is also important to be aware of the limitations of current studies conducted on infertility as it relates to identity as well as the limitations on studies of infertility as a whole. Nearly all of the research in this area has been conducted on predominately female subjects who are white, heterosexual, married and middle/upper class (Ulrich and Weatherall 2000; Letherby 2002; Peterson et al 2006). This area of research may greatly benefit from more inclusive studies incorporating the experiences of homosexual couples, diverse races, lower income groups and single persons identifying as infertile (Ulrich and Weatherall 2000; Letherby 2002). It should also be noted that a large majority of research subjects have undergone medical treatment and/or determined a resolution for their infertility. Very little research has been done on the millions of men and women experiencing infertility who never seek conventional treatment, due in large part to the difficulty in locating willing research participants (Letherby 1999). 
              Despite these limitations, it is clear in reviewing the current literature that the social condition of involuntary childlessness has a profound effect on the gender roles, self-definition and identity of those who experience it. As is clearly shown by these studies, transitions in identity are often multidimensional and pervasive into all areas of life. Perhaps the most intriguing example of this is seen in the progression of identity. As argued by Ulrich and Weatherall (2000) and Letherby (2002), although initial self-perception may involve failure or inadequacy, these men and women ultimately realize that in facing the grief, loss and pain of their infertility, they are not passive victims of their condition but instead active survivors. Continued study on the process of re-constructing gender, identity and most significantly survivor status by those experiencing involuntary childlessness can do much to provide guidance, support and social acceptance to the more than 7 million people in the U.S. faced with infertility.

Letherby, Gayle. 1999. “Other Than Mother and Mothers As Others: the experience of motherhood and non-motherhood in relation to infertility and involuntary childlessness.” Women's Studies International Forum 22(3): 359-372.
Letherby, Gayle. 2002. “Challenging Dominant Discourses: identity and change and the experience of ‘infertility’ and ‘involuntary childlessness.” Journal of Gender Studies 11(3): 277-288.
Peterson, D.B., C.R. Newton, K.H. Rosen, and G.E. Skaggs. 2006. “Gender differences in how men and women who are referred for IVF cope with infertility stress.” Human Reproduction 21(9): 2443-2449.
Ulrich, Miriam and Ann Weatherall. 2000. “Motherhood and Infertility: Viewing Motherhood Through the Lens of Infertility.” Feminism and Psychology 10(3): 323-336.
Webb, Russell E. and Judith C. Daniluk. 1999. “End of the Line: Infertile Men's Experiences of Being Unable to Produce a Child.” Men and Masculinities 2(1): 6-25.
Zucker, Alyssa N. 1999. “The Psychological Impact of Reproductive Difficulties on Women's Lives.” Sex Roles 40(9/10): 767-786.

P.S. If you haven't already, and you feel so inclined, please don't forget to stop by Resolve to read and vote for this year's Hope Award for Best Blog! Thank you!

Wednesday, July 11, 2012

What An Honor!

I haven't been the most consistent blogger in the past year. I try to write what's on my mind and in my heart as often as possible and I always have posts written in my head, but somewhere between the thought process and my keyboard I lose focus and it never actually gets written. I never let myself off the hook for National Infertility Awareness Week though, and I always do everything I can to write a post that really means something to me and hopefully to anyone that reads it. Last week, I found out that my blog post for this year's NIAW is one of 5 nominees for RESOLVE's Hope Award for Best Blog!

 I know it sounds cliche, but it really is an honor just to be nominated, especially alongside such amazing bloggers. This is THE blog award within the infertility community and just knowing that my post will be seen as fellow IF bloggers and readers take the time to read posts before voting means so much to me. 

You don't have to vote for me, or anyone for that matter if you don't want to, but please take the time to read all of the incredible posts nominated on this year's theme "Don't Ignore".

This blog and this community has been such a tremendous source of support and hope for me and this recognition reminds me that I was much as I get from the community, I have the ability to give to it too.

Monday, July 9, 2012

I'm Back!

I'm back! Back from what you ask? Well back to blogging after a nearly 4 week absence for one and back home from a week of fun with Chad's family for another. Yes I said fun with my in-laws! All of them! Chad, Eliana and I spent a week swimming, rock-sliding, kayaking, playing games and celebrating with his brother and sister and their families at his parent's cabin in the Georgia mountains. I know to many of you this sounds crazy, but I adore the family I married into. I cried when we left. I am a lucky girl. 

We created so many wonderful memories this past week. This is going to sound ultra-cheesy, but every moment felt special and amazing simply because our daughter was there to share it with us. Throughout the week, I couldn't help but notice how much more "in the moment" I felt than the last time I had been there. I could smile and mean it. I could laugh without forcing myself. I never had to fight back tears or pretend to be having more fun than I was because I really was having a great time. The last time the entire family was together in this cabin still held plenty of happy moments for me, but mostly I was hurting. It was Christmas 2009 and as we boarded the plane for the trip, I was anxiously waiting to see whether AF would show up after an incredibly difficult and emotional 2ww. Her arrival on Christmas morning was a stab to my heart that was almost too much to bear and spending time with my nieces and nephews provided me the contradictory experience of both easing my broken heart and exacerbating it. I will never forget the chain of crying that occurred on Christmas day. One of my sisters-in-law was in tears due to a challenge she was facing with her son's behavior, followed quickly with tears from other sister-in-law who was also crying and overwhelmed by her oldest child's behavior. Que me sobbing my eyes out in the corner because although I knew their struggles were real, and challenging, I wanted more than anything to have a son or daughter's difficult behavior to cry about.

This trip was heads and tails different than that experience. It made me realize just how much my heart has healed since becoming a mom. I didn't ache or hurt when we celebrated my sister-in-law's pregnancy with a surprise shower. I could enjoy my nieces and nephews and watch them play without feeling sad or wistful. Being able to really be me this time, I could see just how hard those family events really used to be for me, just how guarded and detached I really was. I didn't feel like I was fully apart of these occasions then. I felt like Chad and I were the odd ones out. The only ones with empty laps and empty arms. I wasn't myself, I was nearly consumed by infertility. That experience was always right on top of my conscious thoughts throughout the week, and it kept me grounded and happy. I didn't get particularly bothered when my dinner got cold because I was busy cutting up bite sized meals for Eliana, or when she woke up early from her naps because she was asleep in an open loft without much protection from noise because these were the problems I cried for the last time I was here. I am not trying to be a saint or idealize things. I'm a normal woman who was grateful to have my mother-in-law volunteer to watch my daughter so I could have a break. But I also truly felt so incredibly lucky and grateful to have a toddler demanding my attention when I was trying to have an adult conversation instead of being left alone with the empty, achy feeling of childlessness after everyone else has pulled away by their kids needs for attention.

I think the best part of this week though, wasn't my experience, it was hers. Watching Eliana play and giggle with her cousins made me melt in a way I can't even describe. All four of them were so incredibly sweet with her and she was in awe of each of them. She followed the girls around, trying to imitate them and take part in their games. She let the boys cuddle her and care for her and giggled at their silly faces. She found her uncles to be almost as hilarious as Daddy and let her aunts paint her toenails and play lap games with her. She trusted her Grandmommy completely and just flat out adored her Grandaddy. She spent the entire week laughing, playing, learning and being loved. I am so thrilled that this is her family. That she is blessed to be related to such amazing people. But it also kills me that she has to live so far away from all of them, that she'll have these experiences only every so often instead of often. It's the same story with my side of the family. I am incredibly close to my mom and sister and they adore Eliana almost as much as I do. The last time they visited, she screamed when she watched them walk away into the airport, she wasn't ready to say goodbye. And neither was I. I feel incredibly guilty to be raising my daughter without more constant interaction with the family that loves her so much. But I also feel so blessed that she has the family that she does, that she loves spending time with them so much that I wish there was more of it rather than less. And I am grateful that both my family from childhood and the family I married into, love me as much as they do so that with their support I could be true to myself in both the heartbreak of infertility and the joy of motherhood.