Stopping IVF treatment: a future without children (a women's perspective)
Hi, my name’s Anne, I moved here with my husband Alistair in 2002.
I probably thought being ambivalent about whether or not to have children in the past, but as I got into my early 30s it became a more pressing desire and certainly when we arrived in Australia, that felt like the green light really getting on with it finally. So I was about 35 at that time.
We tried without treatment or help for a couple of years. Time was ticking on and I was very conscious of getting nearer to the dreaded 40 and all of that side of it. And then we have IVF for about a year and a half and we had 5 cycles. All of which were full stimulation cycles. It was expensive and arduous and the process didn’t seem to work well for us in terms of we didn’t get many embryos. And then when we did get them, as you’d expect some of them died and didn’t make it through to term. Although the embryos we had transferred were high quality, supposedly, we didn’t have any successful pregnancies in that treatment phase. Although we had a few chemical pregnancies before we went onto treatment and during that phase as well.
Then we finished treatment in January 2006. Quite a while ago really.
For me personally IVF was not the worst part of the journey. It was actually in many ways it was a relief to be in a system that was there to help us get pregnant and to give us a baby. We knew there were no guarantees in fact I wasn’t one of those very optimistic people. I was quite cautious about whether it would succeed. But I think there was something really supportive in a hospital system and having the doctors, having a really experienced assistant doctor that we got on well with. We both really became involved in the patient support group and I was on the committee for that group and I got a lot of satisfaction doing that. And I also had some counselling throughout the process too.
So in contrast to the two years before we went onto IVF, or three years, I can’t remember how many years it was, I think IVF was not the worst part because at least there was support and there was a sense that we were doing everything we possibly could to try to have a child. And compared to the shear agony and isolation of a couple of years before that it was a lot better to actually meet others who were going through the same thing. Despite the fact that the treatment itself was an arduous struggle and we had spent a lot of money on fully stimulated cycles and not really getting anywhere and very rarely having transfers, my memory of the IVF process was it wasn’t the bleakest moment for me psychologically.
The challenge was probably balancing the hopes against the reality check as well. And the fact that you’re basically living your life in limbo really for years and years and not really knowing what’s going to come. And the other thing that was happening during that time for us was for us was that nearly all of our friends back in the UK and quite a few people we knew here were having their first children. Friends back home were like me in their late 30s most of them had married late. I’d been married for years before they got married or met their partners. And my brother, who’s younger than me, had his two children during his infertility experience. And Alistair’s sister, who’s also younger than him had her two children during that time as well. At the time it felt as if they were taking it in turns to torment us with their fertility and it just felt like it was against the natural order of things - we were the eldest children, you know, it should have been us. (5:19)
And we were very public about the fact that we were trying for children as well. So it was... fairly public kind of struggle during that time.
I think I would say to them that it’s a really difficult, painful road because it throws open the whole question of who are you going to become. And all the assumptions that you might have had really through your whole life often about your future, about becoming a parent. All of that is questioned and becomes suddenly, scarily, provisional.
Even for someone like myself who was never primarily, never primarily saw myself in terms of becoming a mother - but it was there. It was certainly there, the way things came up... into my active life into my thirties.
And I think it’s really terrifying. And you can feel totally cut off and abandoned and cut off from the mainstream of life too. Because most people do become parents and... So suddenly you’re falling behind all your peers. So it affects all your social relationships too. There’s so many elements and layers to it, and I think the desire, the desire for a child is so natural.
I think that in terms of how IVF affected our relationship, it was we’ve always been very close, we remain close. But I think during that time, obviously, we were really struggling with some things especially for me. I felt it very deeply from about the 3rd or 4th month of trying to get pregnant, after we’d had our first chemical pregnancy that didn’t go anywhere. I was just distraught really. And I remember that time really as being four or five years of utter devastation.
And even though outwardly some good things were happening in life there was a real bleakness within. And so obviously that’s going to affect my relationship. And it affected my behaviour, and I mean I was in tears every single day for quite a long time and talking about the desire for a child and the infertility - all the time really.
Obviously it had an impact on our time together. And eventually it got to the point where, very sensibly, Alistair suggested we might want to contain the amount of time we spent talking about it. I certainly always felt very supported by him, but it did feel as if we were going on a journey in a different way, and so during those years of treatment I was very much emotionally - kind of out there, engaged, talking about it, viewing everything through the lens of infertility. And whether or not people had children. And I think for Alistair, I’m sure he could talk about this himself. For him it was a bit more of a case of wanting to support me. So possibly his response emerged more deeply after we finished the treatment.
We definitely responded at different times. And for me I did put a lot of work into actively engaging with it too, and saw a counsellor and was reading about it all the time, thinking about it all the time. So it was full on.
One of the interesting things with me and IVF - and obviously I was new to Australia, we’d only been here a couple of years when we started IVF. We’d had a lot of change. I had a new job that started about a year and a half before we had our first cycle. I’m hazy on the time lines but it was something like that.
I actually found that with work... Work was the one area where I didn’t tell people that I was going through IVF. All of our friends here, all of whom we hadn’t known for very long were aware of it because I was a bit of a, well both of us were a bit of a crusader, so informing people and letting people know just how painful this struggle can be.
But apart from telling managers, and I had a couple of different managers which was annoying. I had to tell several different people over that time. I didn’t tell anyone else. And for me that was helpful I think and quite healthy because I needed to have a space.
I remember thinking at the time that I needed space where I could be as I was before. I could be my work self and people don’t know this. So I think it was helpful for me not to tell people at work.
In terms of time off and although the logistical side of it I was fortunate in have a supportive series of managers on the whole. There was one difficult thing early on. I think it was maybe our second or third cycle and I had a new manager who started, who was quite a stickler, time keeping, punctuality and going by the rules. I remember telling him that I needed to take some time off, but I didn’t know when it was, maybe a few days, I don’t know. And his response wasn’t what I really wanted it to be. I remember he sort of said “Oh, well it’s very important that we keep the standards up for units", something like that.
And then he started telling me about friends of his who’d finished IVF and hadn’t succeeded. And really giving me quite a hard... this is fairly uncertain, it may not work kind of line which didn’t feel like the most supportive. I think I knew at the time, and I sort of reflected later that his response probably reflected his own anxiety about being new in the role and wanting to have a good team etc.
But I remember reading the fact sheets on IVF and thinking that’s not the response I want. But apart from that the actual logistical support was OK. But then again I felt it was a good decision not to tell people there and to have at least one arena where I was able to do my own thing.
And I deliberately, I knew people well who were going through IVF who decided to stop work. I was part time for part of it, but I was full time for a bit of it as well. I was studying as well. I was doing a fairly intensive course as well, and that was a deliberate decision to keep myself occupied with something that wasn’t just this.
When we started IVF we told our parents and families that we were trying to have children. I mean we were so excited I mean we were sort of like, Yeah, the time’s finally arrived we haven’t forgotten about this after all, because I think people were wondering. So they all knew anyway that that was what we were trying to do. And then after a couple of years it must have been obvious to all of them that something wasn’t quite right. So I think we were open with them from the start. We thought this was degrees of support. Alistair’s mother was really supportive, particularly to me. That probably changed. His sister had a child while we were still doing IVF and I suspect she found herself pulled in two directions and she wanted to support her. And I think gradually she felt it was no longer possible to talk with her quite as openly. But she certainly was amazingly supportive especially considering the split loyalties, for quite a long time.
Also we told a lot of people here, people we hadn’t known for very long, many of whom were younger than us and weren’t at the children stage at all. So some of them didn’t “get” why it was hard. I think a lot of people tried to understand and tried to be supportive. So we told people and got varying degrees of appropriate kind of supportive response.
I think over time I gradually realised that I didn’t have to be a crusader for this issue all the time. And actually, sometimes it was OK to protect myself a little bit. But I don’t really regret telling people, it’s just my nature I think. I have to talk it out, and I try to be accepting of the level of support they could give although actually certainly one of the big things I think that IVF and infertility is that sense of isolation. I think you feel very misunderstood and very wounded by other people’s responses because so often it’s not helpful.
One of my friends back in the UK emailed me and said “well...” it was just after I told her we were going to start IVF. And she emailed me and said “have you thought about adoption?” And I was like, no I’ve never heard of it actually. How ridiculous a question! Don’t sort of assume this isn’t going to work for me before I’ve even tried. It felt so wrong and incongruent to have that response. So I think over time I realised that people weren’t always going to be able to respond well.
And I think I became a little more careful about telling absolutely everybody and just about being aware and what actually I could expect back from them. I think we support each other a lot. And I think over time as we were actually involved with the IVF process we had a lot of support within that peer group of others who were going through the same thing. Having said that quite a lot them became pregnant so that always felt like a bit an unreliable group in a way - sort of shifting population.
Basically I think it’s just a really hard, lonely journey and it’s hard to get the support you need from people.
I think often people, when they have a loved one going through IVF, I think often people want, they want to fix it. They want to fix it quickly. And often they do care. But the person who’s experiencing infertility can sometimes feel as if that person doesn’t care because those responses don’t quite hit the mark. And I think it’s because people feel, I suspect that it’s because people feel very, actually feel very deeply for the person who is going through infertility but don’t.
I think in our society people aren’t comfortable with grief at all. So actually I think there’s a tendency to rush to a quick fix and a quick solution so hence when I express my pain about not being able to have a child often people would come back at me with a “why don’t you just adopt...?” “Why don’t you do this...?” Or the story about someone they once knew who miraculously got pregnant at the age of 50. That sort of thing. And it was intended to reassure but what it didn’t do was sit with the actual pain and feeling that I had. I think that’s very hard for people to do.
But I think what people want, what I wanted and what I most appreciated when it did happen was for people just to listen and not judge and not offer solutions. But just to listen.
I was always surprised by the degree to which people couldn’t quite acknowledge that this is a real grief. I guess like some forms of grief it doesn’t involve a person who is already there. It’s something that hasn’t happened. But it’s such a fundamental threat to your identity and who you are and a sense of who you are going to become as well, or who you might become
But I think it just turns you upside down. It turns everything upside down. And changes all your relationships.
It’s such a deep pain and to have people sort of skip over it or turn away from it, it compounded that pain really.
I guess I’m just aware that there seems to be a mismatch between the sense that people like me have or had about the people’s willingness and care. I felt that nobody cared sometimes. Actually I think they did care. I want to acknowledge that. I think people do care, they just don’t know how to express it in the right way.
I think the memories I have as well as people was most helpful was when they really just tried to listen and support without rushing to solutions because I think we knew we were doing everything possible we could as far as we were concerned that was the issue. It wasn’t the technique, the mechanics that we needed.
I think one of the hardest parts of the whole journey for me was people announcing pregnancies. And I think it’s probably the thing that even now it can be a bit of a trigger six years after we’ve finished treatment.
I once counted how many people had announced a pregnancy. People who were close to either in our families or amongst our friendships groups while we were going through IVF and infertility. And it was just an enormous number. And I think what I found most hurtful and most difficult when people did that badly, or from my perspective badly, was if someone would just throw it in there in a way that minimised the chances that they were going to have to then deal with my reaction. So I had one do this to me twice, she was a lovely person. I think her sensitivity was part of the problem because I think she knew it was going to be hard. Whereas some people were just oblivious and just announced it and not think.
But this particular person twice told me in front of other people or told a group of people I was part of, even though she knew I was going through this and didn’t give me any warning beforehand. And that was difficult.
I can think of several people who did... who made a much better job of telling us that they were pregnant. And there was one particular friend who actually emailed us a couple of years ago. This was about three or four years after we finished IVF and she knew it was an ongoing major issue for us. And she emailed me and just said, I’ve got some news and I just wanted to email you rather than phone you because, you know, you might need some time to deal with your own reaction, we’re pregnant. We’re sort of excited but scared. She was very honest about her own feelings at that point and that there was some ambivalence there. We really want you to be part of this next phase of our lives.
What was lovely about it was that she gave me space. She was also very affirming of our relationship. It was lovely, because after that I emailed back, I spent half an hour in shock and then speaking to Alistair on the phone and kind of calm myself down a bit. I emailed back, and was very positive, and thanked her for being so considerate. I think it’s sort of set the tone and paved the way for a new way for us to be with friends that are pregnant and that’s probably partly because we’re now a third of the way from the whole infertility part of our lives but also because she was so lovely and how she did it. And so we ended up driving her to the hospital to have her baby which was weird. There was a long story about that.
I think what came across was her care for us, and that was nice. And we were also the first people they told outside our families. They are close friends. That was really good too.
I think sometimes people didn’t think. They just thought well no matter what they are going through of course they’ll be happy for me. And all that. They’re so caught up in the happiness of it they don’t really have the mental state to think about how it would be.
But I certainly know from some things people have said that some of them have felt awkward about telling me. Which is horrible. It’s a horrible thing to feel as if you’re this kind of bitter who can’t take any pleasure in other people’s happiness.
I was always honest though. A lot of people in the infertility support group would say things like; “of course I was happy for her”. And I was like I wasn’t really happy for her. If that’s me I’m not happy for them because I’m so unhappy for myself. But I’m sorry but I don’t have any space to be happy for her.
But I don’t know, maybe a lot more people are just a lot more saintly than me. But I think they are in denial about their own reactions so... For me I was OK acknowledging that I wasn’t actually happy for that person because for me, it felt like they were tormenting me, doing it on purpose to make me feel worse than I already did. Which obviously they weren’t.
You hear a lot of different story about why people stop. I think for us it was becoming increasingly apparent that the actual process of treatment wasn’t working very well for us. Although we had unexplained infertility. In other words nothing officially wrong, presumably something. And so we embarked on it with what looked like fairly good prospects - kind of. I think basically we found that we were getting very few embryos, it was going to cost us an enormous amount to really continue on that basis whereas other people would have one stimulated cycle and have ten embryos out of it and keep them going for a year or so of transfers. For us it was very slow, and obviously it meant it was a more intrusive process each time as well.
And when people start saying, why don’t you do this, or you’ve had far too many cycles of treatment already. Why don’t you just stop? It’s too callous and it’s too quick. I think people like us have to come to that moment in their own time and in their own way. And certainly there are certainly situations where I’ve known people to say things like, “I’m just going to keep on going until all my eggs have gone, I’m going to have 30 cycles” and all of that. And even I find myself to some extent questioning that and judging that.
I know how easy it is to do it but, you feel so vulnerable and fragile, that to have people throw easy solutions at you it kind of pulls away any remaining sense that you’ve got any control over anything.
So we were beginning to wonder about the likelihood really and the probability of it succeeding. In our case no doctor said to us; stop, this is ridiculous - it’s never going to work. It was more, it wasn’t clear cut medical it’s obviously not going to happen. Or it’s even very likely it’s not going to happen. It was more a decision we gradually came to.
And actually what happened for us is we did our fifth cycle on, well we were expecting to have a transfer on the same weekend we were going to meet Alistair’s sister’s child for the first time. And actually the first, at that point, the first nephew or niece we would meet from within either family. So it was a big deal. Very traumatic weekend. The transfer got cancelled because the embryo died. It was awful.
We got through the weekend somehow. And then we were doing a sponsored walk. So we had this big endurance event coming up and we thought we can’t have treatment between now and then. If we get pregnant I’ll have to drop out. I think we just wanted a break anyway. We’d had five cycles in just over a year and none of them had resulted in a pregnancy. And so it had been a big emotional roller coaster. And we were sick of throwing our money into it really.
And so we took a few months off. We thought we’d do this other thing we needed to do, this endurance event, then see how we feel. And it got to the other side of the endurance event and it’d been about six... I think we’d been on holiday or something. It had been about six months and thought I wonder how it would be.
I started to play about in my own mind; what would it be like not to go back into treatment? I was heading for 40 that year as well, it was 2006. And I kind of feel well that had been in my mind, a bit of a border, a boundary. I think a lot of people have some sort of idea whether it’s the number of cycles or an age or something. But I wasn’t wedded to it, I was prepared to shift it. But after six months of not being treated and starting to toy with the idea of not going back to it, it just became very attractive - the idea of not going back for treatment.
And we started to think perhaps... perhaps we could have a life without children, maybe. Which certainly didn’t in any sense feel like an easy thing but it was starting to tempt us. So that’s really what happened. We didn’t go back for treatment. And then since then we’ve tried to re-direct really.
It’s such a hard thing to talk about the process. It’s really difficult to really identify the different stages we’ve been through and, for me, what’s brought me to the point I’m at now. Which does feel very different to the point I was at six years ago.
It’s a very gradual process. It’s a lifelong journey I think really. I think for me I don’t think I’ll ever feel that this has totally gone away, in the sense that I think it will always be a regret. A fairly deep regret, is almost an inadequate word. A sort of fundamental regret, a fundamental absence in our lives that we didn’t have children. That was what we wanted to do. And I don’t ever want to deny that, I don’t want to say; oh it doesn’t matter or it’s fine, great. You know, we didn’t have children it’s OK. Because in a way it’s sort of... in one sense it’s not OK, in another sense I think, I have a great level of acceptance now of this is who we are and this is the life we have.
The process between thinking if I didn’t have a child I’d kill myself and getting to the point where it no longer feels as fundamental. It’s very difficult to really articulate clearly I think. I think for me a number of different things have helped.
One is being having... not being actually involved anymore in the active quest for a child I think brings its own healing because when you’re in that active quest you’re always trying to advance that goal. When you let that go you’re then giving some space for something new to happen. You’re also not spending your time in that infertility world. And so you’re not constantly being reminded of the absence.
I think that it took, after we stopped treatment, we probably had about a year where we were living fairly provisionally, not quite sure if we were going to go back to treatment. And also trying to do some fun things. Like we took a holiday in India and met up with some old friends from the UK and they tend to stay. And we did some renovations on our house, we put some money into that.
That was nice, I think we had a year when we didn’t... We were engaging with the healing partly by moving to different things and doing those.
I’d always been very pre-occupied with the lack of any support group for people who don’t succeed. And so I had a big desire to set up a group for people like ourselves. And that was probably a bit part of my healing and coping too. To bring others together. Partly because of the satisfaction in actually achieving that. But also just because actually then we suddenly had a bunch of friends who were in a very similar situation and who we could talk to.
And unlike the IVF support group this is a stable group because none of us are going to have children. And it’s been a very powerful thing to have companions in this journey. We’re all really different and we all deal with it differently but there are some commonalities as well.
So I think to find others in the same situation has been really helpful. We didn’t have many people in our natural social network who were in our position. In fact not really anyone quite. So it was really important for me to have that.
I also did... I guess as well, I think when you finish there’s this big sense of a void and an absence and what, what now. You spend so much time... we spend so much time trying to have a baby that we didn’t really know what we were without that quest. And we didn’t know where I lives were going to go. And I was only 40 and Alistair’s 35 or something. We’ve got a lot of life left but what on earth do you do with it? It’s just this big blank kind of screen. And it’s very tempting to want to immediately fill it with things. So I started a pHd just after I was 40 and ended up not going ahead with it because my interest shifted. Which was good. And I think that’s good decision. But I was OK. And I think it was good to give yourself freedom and not to get the immaculate life plans straight away. It might be a bit of a fumbling in the dark for a while. You might try one thing and that doesn’t work. So that was OK.
And I think for me as well there was a big spiritual healing component to it as well. But I think everyone... People we’ve met since we finished have all found different resources and supports to help them. But a lot of it has been around finding... enjoying some of the positive things about not having children. As well as dealing actively with the grief and the feelings.
It’s been very helpful for me to say: it's alright to still feel sad about not having a child. I think that’s part of who we are now and it’s part of who I am. So I’m not just going to deny that and brush it aside. But at the same time I’m so much more future focussed than I was even two years ago and certainly than I was six years ago.
I’ve moved jobs since I was doing IVF. I’m now working in the same field doing policy work for an organisation that works with older people. And that’s just three days a week. And the reason I chose to do just a very part time job really is to give space to my other interests. And I’m doing a masters in spiritual direction, doing some training in spiritual director.
And I must say it is good to have the chance to have... well the opportunity not to have to earn as much money as we might have had to earn possibly. And to also have that physical kind of space to be able to do lots of other things.
And we also run a small community church together as well. So life is really full, very busy and it feels very rewarding. And I’m conscious all the time that a lot of things that I do now I would not be able to do if I had children. So we’ve gone on a different path to the one than we thought we were going to go on ten years ago when we arrived in Australia. So it’s a good path.