Infertility’s Language of Silence.

This post is a little different to my others – it’s once of my essays from a sociology paper I’ve just completed at Uni. If you’re interested in sociology, it’s kinda from a micro sociology perspective, hence the focus on language and words. I’ve mentioned this to a few of you on social media, so thought I’d post it here for anyone who’s interested – now that its been graded with an A I’m happy to share it lol. References are at the end too.

While infertility treatments have become more visible in mainstream media (de Lacey, 2002), infertility itself is still relatively invisible (Lee, 2016), almost a taboo topic despite the increasing numbers of people requiring fertility treatment (Sandelowski, 1991). A rise in Internet spaces, such as blogs, online forums and social media, has allowed those coping with infertility to connect with others having similar experiences, creating support networks and spaces where their experience is no longer invisible (Knoll & Bronstein, 2013). By looking at the language used to describe experiences of infertility, from those living with it, observers, and medical professionals involved in providing treatment we can see that language can end up unintentionally reinforcing the silence surrounding infertility. While language gives individuals ways of defining and understanding the experiences they are living through, language also reinforces social norms and cultural values (Becker, 1994). This results in the restriction of what narratives are socially acceptable to tell, and highlights by omission those narratives that are not expected to be shared. A discussion of the change in language due to the medicalization of infertility will draw attention to how this process has defined what spaces infertility may be visible in and those where it will remain invisible. Following on from this discussion, the use of metaphors as phrases to describe and explain the infertile’s experiences continues the argument that the language of infertility leads to continued silence on this topic which has a huge impact on individuals lives (Knoll & Bronstein, 2014).

Infertility is defined as being “involuntarily childless for at least 12 months due to the inability to become pregnant or carry a child to term” (Bell, 2014). Infertility has been through the medicalization process, where it has transitioned from a social issue to a medical problem, and therefore as a medical problem requires treating. Through this process the words used to describe infertility have changed from words such as sterile and barren, to infertile (Johnson, Quinlan & Myers, 2013). While the medicalization of infertility has made it easier for couples to access fertility treatments, the stigma associated with being sterile or barren has remained with the word infertile (Lee, 2016), as well as an added responsibility that those diagnosed as infertile must seek treatment. The increase in contraceptive technologies and fertility treatments has lead to the belief that people have more choice about when they will have children, and therefore are expected to make the most of these choices (Bell, 2010) – as long as they do choose to use the technologies available as required. This could be explained with Parson’s notion of the sick role (Varul, 2010) – the experience of infertility is legitimate as long as appropriate treatment is sort out, and the individual or couple is seen to be doing everything they can to get ‘well’, in this case to resolve the infertility by not only getting pregnant but also giving birth to a live child. Like other chronic illnesses where healing is not always possible, this leaves some experiences of infertility still invisible. If the infertility does not resolve quick enough, or does not resolve at all, the rights that come with the sick role are no longer available, and this results in infertility being silenced again. Therefore the use of the term infertility as a medical diagnosis leads to the silencing of peoples experiences in certain situations. If couples are not able to pursue treatment for what ever reason (financial, physical, individual beliefs to name a few) their infertility is not legitimized and therefore likely to remain invisible, as breaking the social norm of talking about infertility in this instance is not common (Lee, 2016). Another group of people who remain silenced by the medicalization of infertility are those for whom treatment is unsuccessful. While people are expected to pursue fertility treatment in the hope of a successful resolution, there is an unwritten point where they are judged as wasting time and money to continue going through treatment – this results in individuals and couples who continue passed this point being expected to remain silent about their experience (de Lacey, 2002), but also the pronatalist values of the Western world do not leave space for the narratives of those who do not end up with a baby (Lee, 2016).

The cultural attitude of positivity extends to the way infertility is described and discussed. People going through infertility treatment are often urged to “stay positive” and “don’t give up” (de Lacey, 2002). Instead of acknowledging the person’s experience and feelings, of what is known to be an extremely stressful situation (Knoll & Bronstein, 2014), this call for positivity invalidates the lived experiences of infertility. It also highlights that the socially acceptable narrative is that of continued treatment – yet again silencing those who for what ever reason are unable to do so. This ties in with a common description of infertility being a journey with the destination being the arrival of a baby. A journey which goes through the hierarchical stages of treatment, from drugs to stimulate ovulation to In-vitro Fertilization (IVF) and then on to adoption (de Lacey, 2002). This description also claims that the destination, having a baby, makes all the pain, obstacles and disappointments encountered along the way worth the while (Lee, 2016). This metaphor of the journey suggests those going through infertility treatment need to show momentum, a sense of making progress towards the expected outcome. Lee (2016) shows this is the common discourse in infertility online forums, posited as a way of providing support for one another. This narrative is often reflected by observers (friends, family, peers etc., who are not going dealing with infertility themselves) making it visible what support is available when. As long as those dealing with infertility present themselves as ‘persistent patients’ as Lee (2016) terms them, constantly striving to make progress towards resolving their infertility with the arrival of a baby, they are allowed to share their lived experiences and be supported for it. However, the ways they share these experiences are restricted. Because of this expectation of maintaining a positive attitude, and that it will all be worth it in the end, the chance to express the difficulties and unpleasantness of treatment, as well as any loss/es experienced along the way, are limited (de Lacey, 2002). Sharing too much of these aspects would weaken or counteract any positive attitude and its benefits. Those individuals and couples, who break the social norm of presenting themselves as ‘persistent patients’, are therefore further silenced.

The expectation to continue treatment at all costs is also seen in the communication from the medical professionals providing infertility treatment. Peddie, Teijlingen and Bhattacharya (2005) reported the women they interviewed felt they had been given false hope about their likely success with infertility treatment, which encouraged them to continue treatment longer than they may otherwise have done. They also felt that once they had decided to end treatment, they lost access to any support from the fertility clinic and staff, and that doctors dismissed them quite quickly when they indicated they wanted to stop treatment resulting in patients not getting a chance to ask the questions they had. While there are clearly financial considerations involved in any after care offered, these patients experiences show the medical profession reinforces and/or replicates the common social narratives around infertility, resulting in a loss of legitimate space for those with different narratives to tell.

In contrast to the required positive attitude, which implies having the correct attitude will be more powerful than science and technology alone, a metaphor of gambling is commonly used in relation to infertility. This suggests that the success of infertility treatment is a lottery (de Lacey, 2002), luck of the draw – if an individual or couple is lucky they will get a healthy baby. This idea of infertility treatment being a lottery separates people into winners and losers (de Lacey, 2002) – which gives voice to those who are considered winners, and silences those who are classified as losers. This also adds weight to the concept that there is an unwritten line in the sand when individuals/couples should stop treatment even without being successful, as after that point they are considered to have a ‘gambling problem’ and to be throwing money away. This concern about throwing away money is particularly strong in places like Australia and New Zealand where the government funds some treatment options (de Lacey, 2002), as these people can be judged as throwing away public money. This also restricts what narratives about infertility treatments are acceptable, as it would be bad form to appear ungrateful for this financial support.

Opposing the negative impacts of the gambling metaphor, this concept also gives room for some individuals to explain their lack of success in certain circumstances. Running alongside the positivity narrative is the expectation that those dealing with infertility will do anything and everything in order to have a baby, despite the physical, emotional & financial impacts of these treatments (de Lacey, 2002). Yet despite people doing everything they possibly can, a large number of individuals do not have success in any one cycle (Sandelowski, 1991). Comparing results to that of a lottery, where some get lucky and others do not, allows people to remove the feelings of personal responsiblility for their lack of success. Having this explanation for lack of success is even more important considering the dominant social norms in Western societies, which suggest if an individual just works hard enough they will achieve what they set out to achieve (de Lacey, 2002). Living in a society where this is the expectation, leaves women (and probably men also) vulnerable to feeling as if they have failed when they do not manage to have a baby even though they have worked hard towards their goal. Use of the gambling metaphor gives them a space for their experience to be validated (Becker, 1994). However this is conditional, if they appear to not have been working hard towards their goal, the explanation of not doing their best dominates – thereby restricting when their experiences will be recognized, and silencing it in other situations.

Use of military metaphors in the medical arena is common, and these can be seen within infertility (de Lacey, 2002). An interviewee in Becker’s (1994) study said, “You feel like you have to fight until the last minute”, comparing infertility to a battle, one which must be fought until the end. This also gives support to the expectation that individuals and couples facing infertility must be doing everything they possibly can – in order to win the fight. One just needs to carry out a quick Internet search to see how people who are going through infertility treatment often refer to themselves and each other as ‘infertility warriors’ or ‘veterans’ (Lee, 2016) again referencing infertility as a battle that must be won. While this metaphor gives those going through infertility treatment a way of expressing the seriousness of their experience, it also gives an explanation for why they continue to pursue treatment. However, like the other descriptions presented above, this narrative places restrictions on what aspects of the infertility experience people are allowed to share but also continues to silence those who are unable to pursue treatment and those who stop treatment before ‘winning the battle’ as it were.

While this discussion portrays clearly how the use of different infertility descriptions allows and disallows particular narratives in different situations, there are some limitations to this discussion and the research used to support it. The experiences documented are predominantly from the female perspective. It is possible that language used more frequently by men (and possibly by partners who are not going through the treatment themselves, for example lesbian couples or in surrogacy situations) may be experienced in a less restrictive way, resulting in individuals not feeling silenced. The language use is also studied in a static way – through analyzing text in online forums, survey responses or the answers given in interviews. This fails to scrutinize the interactive qualities of language, how these conversations are navigated using different aspects of language, or lack of language. It also misses out on bodily cues that may give much richer detail in to the aspects of the narratives being told. Examination of interactions between fertility specialists and patients also appears weak. Deepening understanding of the language use in consultations between both parties could be informative, opening up another area where narratives are contradicted or reinforced. If research could be carried out as it happens rather than retrospectively, for example videoing interactions, a greater understanding of how language gives voice to or silences particular descriptions of infertility experiences could be gained. This would allow for data to be analyzed in context (Heath, Luff & Sanches Svensson, 2007), and give the ability to look at the organization of language use in these social interactions.

Investigating the details of how people interact and share their experiences allows us to understand how certain narratives come to dominate while others are silenced or restricted. People’s choices of language used, is one such detail that allows us to do this, and gives us a clearer understanding of how people present their lived experiences of infertility and infertility treatment. By looking at how processes such as medicalization change issues such as infertility and therefor influence the language used to describe them, we can see how this impacts the day-to-day experiences of individuals. It is through this study of the details we can see, that while public awareness surrounding infertility and the available treatments seems to have increased, the language used to describe these results in reinforced silence of the issue. Infertility is highly stressful for those experiencing it, having wide, and long lasting mental, emotional, financial and physical implications. Understanding the way narratives dominate or are silenced, help us to understand these experiences better, and how individuals process their stories.

References

Becker, G. (1994). Metaphors in disrupted lives: Infertility and cultural constructions of continuity. Medical Anthropology Quarterly8(4), 383-410.

Bell, A. V. (2010). Beyond (financial) accessibility: Inequalities within the medicalization of infertility. Sociology of health & illness, 32(4), 631-646.

Bell, A. V. (2014). Diagnostic diversity: The role of social class in diagnostic experiences of infertility. Sociology of health & illness, 36(4), 516-530.

De Lacey, S. (2002). IVF as lottery or investment: contesting metaphors in discourses of infertility. Nursing inquiry9(1), 43-51.

Heath, C., Luff, P., & Sanchez Svensson, M. (2007). Video and qualitative research: analyzing medical practice and interaction. Medical education41(1), 109-116.

Johnson, B., Quinlan, M. M., & Myers, J. (2017). Commerce, Industry, and Security: Biomedicalization Theory and the Use of Metaphor to Describe Practitioner–Patient Communication Within Fertility, Inc. Women’s Reproductive Health4(2), 89-105.

Knoll, M., & Bronstein, J. (2014). An examination of the information disclosure behavior of infertility bloggers: Patterns of self-disclosure and anonymity. Aslib Journal of Information Management66(2), 175-201.

Lee, M. (2017). Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum. Culture, Medicine, and Psychiatry, 1-27.

Peddie, V. L., van Teijlingen, E., & Bhattacharya, S. (2005). A qualitative study of women’s decision-making at the end of IVF treatment. Human Reproduction20(7), 1944-1951.

Sandelowski, M. (1991). Compelled to Try: The Never‐Enough Quality of Conceptive Technology. Medical Anthropology Quarterly5(1), 29-47.

Varul, M. Z. (2010). Talcott Parsons, the sick role and chronic illness. Body & Society16(2), 72-94.

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5 thoughts on “Infertility’s Language of Silence.

  1. Great paper. I was a Sociology major in college and appreciate the academic/research perspective to this issue you’ve brought, as there’s just not enough focus out there on the areas you’ve covered. I especially appreciate calling out the “good patient” expectations out there along with how fertility clinics have zero concern for you after the money stops coming in.

    Have you read Miriam Zoll’s Cracked Open? I just read it and finished it in less than 2 days, and I’m working on a blog post about it as it really deeply affected me. There are so few people out there who are writing about infertility treatments that never ended up working, not to mention calling out the BS going on in the industry. One of the worst things I learned by reading this book was that clinics are lying about success rates for donor egg IVF. I was told by my doctor that the chance would be 80% to get pregnant from one round of DEIVF, and of course as you know after going through 9 embryos we all know I defied those odds… But it actually turns out that the rate of success for women 40 and up is only about four or five percent, and it’s left me beyond devastated that we spend all this time and money for odds that were clearly not in our favor.

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  2. This is so interesting, especially the reference to military language.
    I did my degree in sociology and English literature, it’s been a while since I thought of things from a sociology point of view but really glad you posted this!

    Liked by 1 person

  3. Great writing. The way people say they have “beat infertility” is another example of the military language. I’ve noticed two ways in particular a lot of people seem to view women in the midst of infertility treatments. One is is a positive view – she is determined and strong going through IVF cycle after cycle and that is commendable. The alternative view is that she is an object of pity, desperate for a baby and not knowing when to accept it’s not working and move on. The latter view is something I’ve come across on the comments on articles about IVF etc.

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  4. I’ve come to this really late, but I really enjoyed it, and read along saying, “yes!” several times a paragraph! The whole discussion of judgement and acknowledgement or not of our experiences, depending on the perception of how hard we tried, was interesting too.
    Well done on the well-deserved A!

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