Heart racing
Panic rising
Emotion swelling
Tears falling
Body crumbling
Curled into a ball
Wrapped up tight
Hiding from the world
Where I don’t belong.
————————-/ / —————————
Nearly midnight, & I couldn’t get to sleep, when a vague attempt at poetry came to me, hastily emailed it to myself in the hope that by getting it out of my brain, I’d get to sleep. It didn’t help the sleep, but here are some words.
I keep wanting to write, but don’t know what to say…seems the feelings don’t change so much and I mostly feel like I’m just being negative all the time – & I know how tedious that can make reading! I even struggle to find the words to reply to your comments with I love reading & really appreciate.
Irony is I’d like to improve my writing, and maybe start writing for magazines or something (something thats not a university essay at least!)….but I don’t know what to write about (that would be good enough!).
I wanted to write a post for World Childlessness Week last week, but had a few too many feels, and didn’t think I could add anything to the conversation already happening. Currently feeling like I’m in some weird no mans land – not in Treatment world, because we don’t know if we’ll actually do any more treatment (and when each person in a couple is on a different page this is a really tricky, fragile uncertainty)….but because we haven’t reached a definitive agreement on doing no more treatment, I don’t feel like I fit in the childless world. When infertility leaves you feeling like you don’t fit in the world, feeling like you don’t fit in the infertility world too is not a great space to fit in. Humans always want to feel like they belong somewhere.
To start with it felt like the counsellor was of the belief that we shouldn’t keep trying and therefore kept asking me the hard questions, but I’ve since realised over more sessions that she takes turns asking both of us the tough questions. I suspect that we both ignore these questions in between sessions, hoping that either they’ll go away or that an answer will come to us without us having to face the question. I’m starting to feel that I’m probably gonna have to be brave and face these questions, and the fear of the future, in order to actually heal some and be able to live with what ever decision we make – but with how quickly panic starts to rise if I even slightly glance in the direction of those questions, I fear facing them head on will find me falling apart even more than I already have….and I don’t know how I’ll be able to keep going with everyday life, if I let that happen…..it’s like I need to find a large chunk of time with no commitments so that I’ll have time to put myself back together before I need to function again. And in the meantime til I find a chunk of time, I’ll just keep looking the other way and hoping the question will go away. Or maybe, I’m slowly putting myself back together after all our losses, in order to fall fully apart again….
I’ve always had a soft spot for other people’s kids and babies….I’ve been a babysitter since a young age, and then I trained & worked as a nanny…I’m the one who makes kids smile on a long haul flight…at friend & family gatherings I was the one that would play with the kids, or rock the babies to sleep to give their parents a break. My in-laws even called me the ‘baby whisperer’ at one stage (I always told them not to jinx me….thinking that by jinx it’d just mean I’d have an unsettled baby…not that I’d have no baby!). I’ve always found joy in babies – making them smile and giggle, or rocking them to sleep always left me happy & contented.
Slowly over the course of our IVF treatment, I stopped playing with other peoples babies and kids….it was too painful. I think subconsciously there were a few reasons I pulled back from the kids in my life…I think I was worried that by enjoying other peoples kids it must mean I didn’t want my own enough and that it would invalidate my own pain and losses, or that if other’s saw me playing with the kids they’d think I was coping with life better than I was and not realise the pain babies and kids can trigger…and maybe I was worried that not being able to have kids was a sign that I didn’t deserve to have any enjoyment from other kids too. Or maybe people would think I was some crazy lady who would steal their baby since I couldn’t have my own….
What ever story was taking over my brain, I avoided babies, I avoided conversations about babies and pregnancies, I even saw my nibing’s less than usual (though I was also really busy with Uni and surviving). Recently though a friend of mine had a baby….it was her 2nd (her first was through IVF so our friendship has managed to survive ok)….but I hadn’t held a baby since she had her first one (who is now 3)….yep thats how long I avoided babies for….I didn’t really feel I could keep avoiding them though and not see this baby so I went to visit a few weeks after she was born…..I was pretty apprehensive & anxious before visiting….I wasn’t even sure if I’d cope with holding the baby let alone being in the same room, so wasn’t sure if I’d actually take an opportunity to hold the baby. I kinda didn’t get a choice, my friend just handed her to me! I didn’t cry, I coped. I felt pretty awkward – wasn’t sure how to be interested in the baby the way I used to be, while coping with all the issues in my head. I survived. (even if it all caught up with me later in the day & I had a cry)
After that I kinda thought, maybe it was like exposure therapy….maybe I just needed to keep holding babies, and eventually I’d get comfortable again, and be able to play with babies again…maybe even I’d get to reclaim my joy again….Cos otherwise infertility has stolen yet another thing from me.
I used to be a bit of a kid magnet prior….they always seemed to like me….but I also seemed to lose this throughout IVF….recently a new friends 7yr old, who I’d thought was a bit cold to me, decided to draw me a picture & wanted to do my hair….so maybe this exposure therapy is working and I’m slowly being able to reclaim my place around other kids. I’m still struggling to work out how other peoples kids fit in my lives – part of me thinks maybe I become the aunty figure for all the kids in my life, and be the best aunty I know….maybe thats the way forward, just making the most of the kids that are around me….but then how do I balance that with the bittersweet pain I’m left with when these kids want their mums, or go home after a sleep over at Aunty’s, or after these kids have grown up and are too cool to spend time with their parents friend…..How do you reclaim joy without dishonouring the pain?
How do you cope with other peoples kids in your life?
Recently I was thinking that I’d started to feel (a little bit) better….better/ok is all relative though, so having been feeling pretty shitty for so long it doesn’t take much to feel like an improvement. How quickly our bars for ‘ok’ are reduced!
However, I also recognised that this was the time for some healing to occur, when there’s a tiny glimmer of emotional energy to process things. So we made an appointment with a grief counsellor, someone neither of us had seen so that we could have a clean slate to start healing as a couple, not just working through things individually – things had become a bit fragile with our relationship so strengthening our marriage is also important at this stage.
We had our first session yesterday. It was quite confronting, the therapist asked some hard questions – ones I at least struggled to answer. While logically I realise I need her to ask the tough questions so I can process and accept my feelings….emotionally it’s terrifying. Made me realise how much I’ve boxed my emotions up in order to feel less pain. Flip side is you feel less anything. But now her questions have started making gaps for feelings to escape. I’m not sure I really want to feel them even in order to find a way to start actually living again.
She also was surprised at the amount of treatment and loss we’d been through, and that I’m still wanting to keep going. While its obviously always been still there as a big possibility, I’d been ignoring the fact that it’s most likely we are still facing a childless life – grieving our baby boy was enough, I didn’t want to feel the feels of facing a childless life too. But now the therapist has started asking questions, that reality has been shoved in front of me again. I don’t want to think about it. I don’t want that to be my future. The few thoughts I’ve had about it since yesterdays session has already started the feelings of panic and absolute terror welling up. Utter lack of control and powerlessness, overwhelming fear of the future. I don’t know if I’ll ever be able to face these feelings full on, they seem to big for me to handle.
I learnt pretty young that life isn’t fair….but this, this losing a dream, is a whole other level of unfairness!
Many times I’ve gone to write another blog post…many reasons not to – mostly because Uni work had to take priority and I was trying to resist procrastinating….and then most of the times I thought of good things to write was when I was trying to get to sleep – and as sleep is a bit hit and miss these days I didn’t want to interrupt the “I might fall asleep soon” process to write my ideas down…. So instead of several clever post ideas this will be a wish mash touching on a few things I’ve thought about recently.
I was going to write about empathy and emotional labour – I had a situation where someone basically got into a “my shitty time is worse than your shitty time” situation, and as they were saying how hard life was having a baby, it felt to me a bit like yet another situation where those of us without kids end up filling the gap and making allowances for those that do have kids. But then I also realised I was just in a really shitty space and hurting too, and really want it showed was just that at the end of the day everyone regardless of their experience, just wants to be heard and have their feelings acknowledged. Hard to give that to others when you’re struggling yourself though, and sometimes when you’re not feeling heard yourself it can feel like you’re the one doing all the listening to others.
There’s been a bunch of talk on social media about mental health and asking for help, particularly if feeling suicidal. Lots of calls for people to reach out, ask for help, speak up when they’re struggling. Personally I find this really hard – especially as a number of times I have tried reaching out the people weren’t able to provide the help I needed. Having been raised to be independent (number one priority for us growing up was to learn to be independent – can’t rely on anyone else!) and having had my emotional experiences invalidated almost constantly as a child, it’s hard enough to admit to myself when I’m not coping with the world, let alone tell someone else. I’ve even noticed lately that when someone asks “How are you?”, the worse I’m feeling the more likely I am to ignore the question – because I can’t bring myself to lie, but also I’m not always sure the other person really wants to know. And even if I know the other person is a genuine friend who does care, I get a bit sick of myself not being happy so I don’t want to seem like I’m always complaining/struggling so I just don’t answer…particularly easy to do if the question is in a message or online – just respond to the rest of the message and ask them about themselves. Not a particularly good way of coping with the world – logically I can see that. But the reality is, and I’d imagine this is similar for others when struggling with life, when things are shitty all energy goes on survival, so the best coping straggles aren’t always chosen. Which also means someone isn’t likely to be in a place to help at the time when they most need help. Especially if self-esteem is lacking and you don’t feel like you deserve help….
The problem is if we’re all so busy focussing on survival, yet we’re all expected to reach out for help when we need it…..we don’t end up getting the help we need, but we also end up more isolated and less connected. It’s a fine line between putting ourselves first, not spreading ourselves too thing, and helping others, checking up on them, and staying connected with each other (genuine connection not just a quick ‘like’ of someones Facebook post or tweet). I am not good at finding this balance at all – often the worse I feel about myself the more I try to look after others, and do kind things. Not a bad thing – but often means I don’t know how, or feel very awkward looking after myself. And this gets worse when I feel like I’m not good company….super easy to end up hiding from the world, which isn’t a great solution either.
Oh dear, now I’ve completely lost my train of thought and can’t remember what else I was going to write haha. I guess though that does remind me of something else….it’s really easy when recovering from a loss, to think you’re back to ‘normal’. The obvious grieving like crying all the time and staring blankly out the window get less or have mostly gone, physically things are as ‘normal’ as they’re going to be, and life keeps going on. And if you’re like me, you stick at things you’ve committed too no matter how shitty and tough things are. After previous losses, while it was hard I managed to keep going with my Uni work, and somehow managed to keep getting the grades I needed. However, after this recent loss it’s been much harder to keep going – I know some of it is purely the amount of stressors we had – we moved house around the same time as this latest miscarriage, I was trying to get used to a different university and a bigger workload…of course it’s going to be hard. But this time the effects of grief were more subtle…concentration was really lacking. I am so easily distracted – not helpful when you’re trying to prepare for some big exams. Getting irritated and overwhelmed by almost everything, also not helpful. I kept going and I completed the exams – time will tell whether I managed to drag out the grades I need or not….and I mean drag…it often felt like I had to tell my brain to work, and that it was like my brain was trying to climb up a steep hill…took a lot of effort to get anywhere. Acknowledging the toll this has taken on the rest of my life has been hard – I should have been able to cope…so the annoying part of my brain thought. But the reality is, we need to let ourselves be ok with making changes to life so we can do more than just survive. For me that has been making changes to reduce my Uni workload, so I have space to put in some more self-care activities…like exercising and eating better. Problem is, when you’re already feeling like a failure, this can easily add to those feelings. Logically I know I’m making the right choices, and doing what I need to do to look after myself. But the emotions don’t keep up with that. We’re still in limbo land, we don’t know if we’ll do any more fertility treatment or if thats us done. I don’t know if I’m building resilience and health to cope with another cycle, or if I’m rebuilding myself as someone who won’t have kids. Adding changes to the only plan I have for the future – my studies – to that, makes it even harder to know who I am and what future I’m creating…..and without these things, it can be pretty hard to get out of bed each morning.
I guess the point I wanted to make in a round about way is, be kind to each other, including ourselves. Practice good self-care, but also reach out to those around you – humans can cope with things a whole lot easier when we give each other a helping hand up. xx
I’m sorry it’s been a while since I wrote….have been meaning to write this post for ages, but life & feelings keep getting in the way. I’ve um’d and ah’d about whether to write this post or not…..I feel a little like a fraud after everything I’ve written before now….but then I also realise I said I wanted to show the reality of life after fertility treatment….and it doesn’t always go the way we expect, so being open about that is probably a good thing too. Fully away also that not everyone reading this will get or understand or agree with our decisions – and that’s ok, if this post is triggering for you I’m sorry & I understand you moving away from the blog….but I’ll also put up front (in case you don’t want to read til the end) this is not a happy blog post.
Towards the end of last year, while we were still struggling to come to terms with a childless life, we somehow stumbled ourselves on to a page where both of us realised we weren’t ready to be done with fertility treatment. As much as we knew fertility treatment was painful, last year was painful too and we didn’t feel like we were making any progress in accepting it (despite spending lots of $$ on therapy!) – so suddenly we found ourselves looking into treatment options we hadn’t considered before.
And before we knew it, we’d remortgaged paid a deposit & booked flights to Europe….we were going to try again, with different treatment in a different country – surely that boded well for us, taking a different approach to all the other times…..the healthy eating & taking tonnes of supplements kicked in – though tripping around Europe with all the cakes and baked goodies did mean there was some (lots of) indulgences! Treatment went surprisingly well – was hard to believe….and was interesting watching my anxiety responses kick in before I even had any news on the days we talked to the clinic – trauma responses take a while to get rid of I guess!
Once we returned home, life was a whirlwind – sold our house, bought a new house, Uni started (which involved going out of town for a course)…..it was quite hard to cope with this much Life going on, all the while wondering if I was pregnant….when we finally got the blood test results it was positive…the pain of all previous times over rode any excitement and all I had was tears….I hoped that further into the pregnancy my worries would be more manageable and that there would be space for excitement…..We made it to our first scan at 6 1/2 weeks….the anxiety levels before this appointment skyrocketed….last time we had this scan it hadn’t been good, I’d had some spotting leading up to this time, so I wasn’t feeling super positive…..but there was a heart beat….I cried, there was a baby growing in me….it was amazing….it still didn’t feel real…I still wasn’t excited….I was so scared….I kept having words with myself…there was a heartbeat…all the signs suggested everything was going fine….I just needed to keep breathing….
We made an appointment with a midwife, we moved into our new house, I kept trying to do some Uni work, I felt uncomfortable in my own skin but mostly I could remind myself it was all for the greater good…it’d all be worth it……
We went to our 9 week scan, both of us pretty sure everything was fine….the anxiety didn’t really get too high this time, surprisingly….we were in new territory….but it would be ok.
Except it wasn’t. There was no heartbeat. Our baby had stopped growing a few days after our last scan. Our world was falling apart all over again. We swore & cried, & left the appointment….and just as we hopped back into our car, someone trying to park next to us, drove into us – nothing major just frustrating, we held it together, exchanged details….and as we drove off…the driver got her baby out of the car…..F’ing hell, she got lucky and drove into us….we got nothing.
That was a week ago….feels like yesterday and forever all at once. I went to hospital a few days ago for surgery….at least now physically I can start to return to normal. I’m not sure how to heal our hearts thought. And as for what’s next who knows….everything seems a bit pointless at the moment, so we’re focussing on breathing, holding each other close & medicating with chocolate.
I’ve been meaning to write for ages. I thought once I’d finished Uni for the year I’d have more time and headspace and would get a couple of posts in before Christmas, but now I find it’s 6weeks or so since Uni finished & I’m just scraping together some time & energy to get a post in. Also to everyone who has commented on various blog posts in the last few months – I’ve read them, and appreciated them, and struggled to find the words to reply to them. So, sorry I haven’t replied to you individually. Hopefully I’ll do better at that next year, as I really do like the connections one can make through blogs.
How are you all? How are you coping with the “Festive Season”? Are you like me and lacking in anything like jollyness? I thought that even though I know Christmas is a hard time of year for me, that this year would be tolerable – ‘cos I haven’t done lots of the things I normally do that generally result in me being stressed, tired & overcommitted. I thought having less social occasions that I normally do would help minimise the difficult moments, and therefore this year wouldn’t really be a problem. Jokes on me! Doing less of the normal things has resulted in some less stress, but also means it feels less like Christmas. I wasn’t feeling the Christmas Vibe so I wasn’t too bothered about what we did for Christmas – I thought…..then people started changing occasions around, and having different family events on different days etc…and I wasn’t so keen on change.
I had a moment last week when I suddenly realised why I was a bit out of sorts….the week before Christmas has a couple of ‘those’ dates, so they were looming, I saw several pregnancy announcements, Christmas is hard anyway, Christmas is even harder with some of the weird family dynamics going on, and I had PMS. Yay, so F#$king typical of that to start right when I already have enough emotional stuff to deal with.
And while some of the family Christmas things we’ve done have been nice, there’s always the bittersweet edge to it all. Going home alone at the end of a family dinner. Being the ones that have to be flexible & accomodating around the kids. Watching the others spoil their kids, knowing that the gifts their parents & grandparents give them will always outshine what we give. The having fun times with a nibling, thats promptly followed by the thought “I’ll never get to do this with my own child”. It’s hard to fight against societies narrative that Christmas is all about the kids. It doesn’t need to be that way, but when some of the family do have children its quite likely their focus will be on their kids.
On top of that, my friends with kids, & functional families are spending this time of year planning their Christmas Traditions, having lots of catchups…they end up really busy…while I’m home on my own as my husband is away for work over Christmas & New Years. I’m very grateful for friends who have made plans & time that include me, and those moments will likely be the nicest ones, away from the tensions of family obligations. But it’s a fine line to walk between too much socialising & being over committed, & having enough company & distraction – it’s hard to get the balance right!
How are you managing this time of year? Any tips you’d like to share? How ever you choose to spend this festive, or not so festive, season, I hope you look after each other and have others look after you – and hopefully you can have some nice moments in there too. xo
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 Quarterly, 8(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 inquiry, 9(1), 43-51.
Heath, C., Luff, P., & Sanchez Svensson, M. (2007). Video and qualitative research: analyzing medical practice and interaction. Medical education, 41(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 Health, 4(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 Management, 66(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 Reproduction, 20(7), 1944-1951.
Sandelowski, M. (1991). Compelled to Try: The Never‐Enough Quality of Conceptive Technology. Medical Anthropology Quarterly, 5(1), 29-47.
Varul, M. Z. (2010). Talcott Parsons, the sick role and chronic illness. Body & Society, 16(2), 72-94.
I’m currently hiding away, pretending not to be home and feeling like a right party pooper. The neighbourhood is filled with happy families and noisy kids going trick or treating.
For a start, this was never something that was done when I was a kid, so I’ve never participated & it’s never really been my thing….it’s possible it’d have grown on me if I had my own kids begging to play. Instead, I’m wishing everyone would shut up & go home. I don’t want to listen to their happiness & I don’t want to sit here anxiously hoping no one rings the door bell. I closed the gate (which we don’t normally close) and had meant to hang a sign on it saying No Trick or Treaters, but I got home a bit later than planned and everything was in full swing, there’s been no chance to dash to the gate without being accosted by various creatures.
And because there’s no sign out, I don’t want anyone to see I’m home – which means I haven’t had dinner, as when I’m in the kitchen I’m in full view of anyone walking down the street. Also means I can’t do the things on my to-do-list I’d planned to do tonight, because its all set up in the spare room – also in full view of the street. So I sit here getting crankier, and hangry, and pissed off at the world at yet another occasion stolen from my by infertility. Yet another day of the year I’m reminded I don’t belong, and get my grief thrown back in my face.
One day hopefully I’ll be able to willingly hand out lollies to random kids….but for now I just hope I get some dinner soon.
I’ve been meaning to write this post for ages, finally found a little free time and having handed in my last assignment a smidge of energy. Please note up front, this post is not asking for advice.
We didn’t go into fertility treatment with a pre-arranged limit, to be honest at the time it felt like we levelled up before we’d even started – we’d only be TTCing naturally for about 6mths when we found out we would need IVF. And then our Dr. told us we were the ideal couple, the one IVF was designed for – our only issue was tubal damage, and as IVF bypasses the tubes we’d be all good. In fact, the Dr told us about a family who got their whole family (3 or so kids!) off one cycle – as our first cycle was publicly funded, the idea of getting more than one child of one cycle was perfect. We’d get our family without financial considerations having to be a big part of deciding whether or not we’d try.
Potentially our doctor set us up with false expectations, but as we got 6 embryos in the freezer (no fresh transfer) off our first cycle, we though we were on to a good thing. 7 transfers laters, several cancelled cycles, another surgery, a chemical pregnancy and a miscarriage we’d used up our allocation of public funding. We had to decide if we were going to continue, and if so where would we find the $$, or if we were going to call it quits. The doctor told us it was a numbers game, more times you try the more likelihood there is of success. Some lovely family offered us some financial support so we decided to continue.
We signed up for a package deal – 3 cycles for the price of 2 and a bit….and if you get to the end with no success a refund equivalent to about 2 cycles. We figured we wouldn’t need 3 cycles, but thought’s Sod’s law would have it that if we signed up for 3 we’d get luck on our first cycle. Another 3 transfers later (2 of them were transfers of 2 embryos at once), another chemical pregnancy and another miscarriage, and we’d reached the end.
We were devastated. We got our refund. It didn’t mean anything to us. The arrangement was it’d go back to those who’d helped us out, so we couldn’t even have a fancy holiday to cheer ourselves up. We’d thought that was the end, we were tired, heartbroken and out of mental & emotional resources. We were struggling. We’d said that was our last try, but were tempted to try again. We were told we could use the refund to try again if we wanted to.
We decided we would. It would be setting us up for at 13th embryo to be transferred….in my family 13 has been a winning number for us before, so surely that meant this time it’d be our turn….it was a numbers game after all, as the doctor kept saying.
We started our 6th round of IVF as the New Year rolled in. This was going to be our lucky year. We got a good number of eggs, it was going to be our turn.
None of them fertilised. It was all over.
Apparently, its really common for couples to not be on the same page at this stage. One wanting to continue or to try other options, one wanting to stop treatment all together. Both view points valid – its either the devil you know or the devil you don’t really. Both options scary and full of emotion. It’s really tough when you’re not on the same page. It’s not like there’s a solution that’s a compromise, either way one person is going to get what they want and the other isn’t.
But we’d gone into the final cycle saying that was it, we were drawing a line in the sand, if it didn’t work we’d walk away and start trying to learn to live again in a life we didn’t choose. It was tough, we were broken and lost. People tried to convince us to change the plan, they didn’t understand. They couldn’t grasp that being on a different page from each other at that point, could be a breaking point for our relationship. We had to choose our marriage over the idea of a family. We had to try and find a way to keep that strong, but somehow find a way to not dissolve under the weight of a decision we didn’t agree on nor wanted to make.
And now we’re nearly at the other end of the year, and it doesn’t feel like we’ve healed much. It’s been months purely focussed on survival. It might be common for couples to not be on the same page when it comes to making the decision to stop fertility treatment, but that doesn’t make it any easier.
If you’re facing a decision like this, I’m really sorry. It’s painful and tough, be gentle with yourself and each other. Take your time. Feel the feels. xo
Sliding Doors 