Jimmy Fallon's "Coming Out": Celebrations and Concerns

Most anyone that with access to social media the past day or so, has no doubt seen the heartwarming headlines about the birth of comedian Jimmy Fallon's daughter, Winnie, via surrogate. The infertility community in particular, is buzzing with the hashtag #thankyoujimmy and celebrating the celebrity's openness about the struggle with infertility that he and his wife endured for five years before finally welcoming their child. 

With infertility still a taboo and misunderstood condition, and the treatments for it often even more so, it is the rare celebrity that speaks out so candidly about having struggled to become a parent. And anytime an actor, musician or public figure is willing to share this personal part of their lives, I am grateful. Grateful because their voice is frankly more public and therefore louder, than mine. I can blog all day long about how it feels to long for a family that you fear you may never have, how emotional and exhausting the treatments are, about the heartbreak of trying and failing or succeeding only to lose what you worked so hard for- but I will never have the reach of someone like Mr Fallon who has thousands of fans across the globe and a recent Emmy nomination. So when he shared the real, honest and emotional things about his and his wife's struggle it really meant a lot to me and other infertile men and women across the country. 

Every time a celebrity "comes out" about their infertility, the rest of the world gains just a bit more understanding. Ordinary people who may have had no trouble conceiving, are able to see that infertility really can affect anyone. It also opens up conversation and I often have friends and family become curious and ask questions about what infertility really means, how a treatment actually works. Walls come down and silence is broken. Celebrity confessions take the disease itself out of the shadows. They encourage those of us that have been suffering in silence to share our stories with friends and families.There is so much good that comes from speaking out and celebrating all of the ways families are made. For that I am and always will be grateful to Jimmy and have respect for him. 

I do however, have some concerns about his remarks as well. The first and most obvious being the one that comes up in just about every celebrity infertility story- their access and ability to afford treatment. In his interview, Jimmy encouraged anyone struggling to have a child to try every avenue in the quest to become a parent. But as we all know, that just isn't a realistic option for everyone. Infertility treatments are very rarely covered by health insurance and even when they are, often have caps that would prevent many people from ever being able to afford expensive options like surrogacy. I consider myself incredibly fortunate that my husband and I had the resources to assist with our IVF and FET cycles, but for many that option just doesn't exist, let alone more expensive treatments like egg donation or surrogacy. If it were up to me, we would all have the option to "do whatever it takes" as Jimmy encourages, because cost wouldn't be the barrier that it currently is, but we have a long way to go in making that a reality. 

The other concern that struck me immediately, even before the cost barrier, is what his message of hope and never giving up must sound like to the childless community. To those who have already tried everything they are financially and emotionally capable of trying and have decided that a life without children is the best resolution to their infertility, the constant barrage of "always keep trying" becomes a dagger in the heart. It seems as if the rest of the infertile community is accusing them of giving up. It unintentionally alienates and discounts a large part of our community and can be very painful. I understand completely where Jimmy was coming from when he said what he did about not losing hope. As someone who has fallen on and off the hope wagon herself, and finally realized her dream when hope was at an all time low, I know that feeling of relief that "one more try" really did do the trick. It's a message that so many of us desperately need to hear when we are in the trenches. Hope is pretty much the only thing that keeps many of us going some days. And often because our own hope is depleted, it is messages of support and encouragement from others that gets us through. Hearing Jimmy Fallon, or anyone that has been through it, tell you to keep going, keep trying because you will end up with a family and that all the work is worth it, it's the most worth it thing, can be powerful, inspiring and give you hope when all seems lost. But it can also feel like a slap in the face to someone who has already moved forward from treatment and onto adoption or to finding other "worth it" things to make their lives complete. 

Of course, I don't mean to imply that Jimmy Fallon meant any ill-will or has done anything wrong. He doesn't have any sort of obligation to anyone and I appreciate the way he empathized and showed support for fellow members of this community. I applaud him for his heartfelt openness and congratulate him and his wife on becoming parents. But I do wish to see more conversation and understanding about the concerns I mentioned, as well. I hope that the positive reaction he has received in the media and from his fans encourages more discussion, more education and more change with the way infertility is regarded and that one day this illness is no longer something to "come out of the closet" of. Thank you, Jimmy, for sharing your story and for being a voice. And to all of you who aren't necessarily famous comedians or producers, or even suffering from infertility- thank you for speaking out, thank you for taking the time to read and learn more, thank you for being involved, thank you.

NIAW: Join The Movement

This week, April 21-27 is National Infertility Awareness Week. Since I first began participating in NIAW three years ago, it has become a time of inspiration to me. I never feel as connected to the infertility community as I do during this week of advocacy, education and awareness. Each year that I have participated, has brought the opportunity for new reflection and growth. 

It was during this week in 2010 that I first opened up about my infertility. My husband and I "came out of the closet" so to speak, as one of the 1 in 8 couples in the U.S. experiencing infertility and as one of the 1 in 6 that suffer a pregnancy loss. Taking that plunge was terrifying. I had carried so much guilt and shame about my infertility diagnoses for so long. But once we went public, we were astonished by the love and support we received. What surprised us even more were the friends and family that came forward to let us know that they faced it too and that we were not alone. The more I reached out, the less isolated and ashamed I felt. My first NIAW was a turning point and the first time I felt as if I had taken charge of infertility story instead of letting it control me. I broke the silence and in the process helped others facing similar struggles, engendered compassion in those that didn't, and opened up a whole new world of support and empowerment for myself that would help me through some of my toughest moments. 

This year I have been as enthusiastic about NIAW as ever. Infertility advocacy has been transforming for me from something I didn't know how to approach to a passion that I can't seem to do enough of. I am thrilled to be attending RESOLVE's Advocacy Day next month for the first time. I can't wait to speak to my senators and representatives about how vital The Family Act is to me and the other 7.3 million people facing infertility in the U.S. In an attempt to reach out even more, I have also begun blogging for Fertility Authority and this summer I have plans to begin another exciting position with them as well. And perhaps the scariest, most exciting advocacy experience of all- I have agreed to CHAIR the first ever Walk of Hope in Southern California this fall. (sidenote-if you're in SoCal and want to get involved- please message me!) But as exhilarating as all of this involvement in the movement and the community is, it is still the quietest of exchanges, the simplest acts of providing support to someone that needs it or speaking up for those who are struggling that matter to me most. 

One of the things I cherish most about NIAW is the opportunity to learn more but the movement, the community and myself. This year I have discovered that while NIAW provides hope and support for many, that is not true for all. There are wonderful women and men suffering from infertility that feel pain and loss during NIAW rather than support. Let's face it, the infertility community and our supporters in the fertile world are obsessed with "success stories" and by success we mean people who are infertile, but in some way became parents. We don't know how to celebrate the success of those who resolve their infertility by living a child-free life. I readily admit, that while supporting those in the community that have reached a child-free resolution matters to me very much, I am not always sure of the best way to do it. These stories don't touch my heart any less than the tales of IVF or adoption, but I have heard from so many that without the constant chatter of cycles and homestudies, those in the child-free camp often feel left out of the conversation and even the infertility community as a whole. This breaks my heart because we not only need to support EVERYONE that faces infertility and celebrate every victory, every resolution, we need these stories, these voices to make our community and our movement whole and complete. 

Equally heartbreaking, is that there are those who don't see the value in raising awareness about the issue because, while NIAW and speaking out may provide you with personal comfort and release from shame, it does nothing to actually cure infertility itself or that "forcing" awareness down the throats of those not facing infertility is fruitless and self-indulgent. To that I say, you are missing the point. No, posting a link to a blog post about how to best support friends and family struggling with infertility won't resolve their infertility. Sharing information about deciding to see a specialist and how to find one won't guarantee that treatments will be successful. Educating co-workers that 7.3 million people face infertility won't decrease that number. Awareness on it's own won't make infertility go away but it WILL make a difference. 

One thing everyone struggling with infertility seems to agree on is that it really is a STRUGGLE. Not only because our hearts break month after month, year after year with our inability to become parents, but because the navigating the world of fertility doctors, adoption lawyers, uninformed friends, unaware politicians and unconcerned insurance providers is one of the most challenging things we have ever had to do. Only through awareness can we begin to change all of that. Educating the public about the pervasiveness and realities of infertility will increase understanding of infertility as a disease deserving of compassion. Advocating by writing to your congressional representatives or by attending Advocacy Day will increase political presence and help pass important legislation like The Family Act, which would reduce the financial burden of fertility treatments for millions of Americans. Showing support and compassion for friends and family facing this disease, whether or not you face it yourself, makes a difference in your loved ones lives in ways big and small. Writing, talking and sharing the realities of IVF, domestic and international adoption or living child-free will ensure that every voice, every experience with infertility is represented, heard and supported. Taking the time to truly listen and support everyone devastated by this disease, no matter how much their circumstances and choices may differ from our own, will make this movement even richer and more complete.

With all of the obstacles facing those with infertility, it is easy to forget how far this movement has already come. The women and men of our parent's and grandparent's generation did not have RESOLVE support groups or online communities available for them to seek a compassionate, understanding ear. Adoptions were often done under a shroud of secrecy with little to no support for any involved. Adults without children were feared or ridiculed as "old-maids". Education about what really does and does not work when trying to have a baby was limited to what was passed on between friends and family members, rarely with sufficient access to additional information or medical assistance. Infertility simply wasn't often talked about. It often still isn't. I know it seems so small, so insignificant to just talk about infertility because how can that possibly make a difference? But speaking out is the first step of any movement. No, it is not a cure for infertility but if we keep it up, it WILL cure many of the challenges that currently accompany it. So make your voice heard and support others who are doing the same. This community is powerful and strong, we CAN make a difference.

"Never believe that a few caring people can't change the world. For, indeed, that's all who ever have." ~ Margaret Mead

To learn more about infertility and National Infertility Awareness Week please visit:

• http://www.resolve.org/infertility101  (Basic understanding of the disease of infertility.)

• http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)

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.

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.

References

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! http://resolve.org/vote