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Infertility

To tell or not to tell

Whether or not to tell friends, family and work colleagues about their infertility and treatment was often a difficult and very personal decision. Here we discuss why some people chose to keep their treatment secret, were selective in who they told, or decided to be very open. We also discuss people’s thoughts about how they handled this issue, including some who felt they had not handled it well.
 
Sometimes people decided to keep their treatment a secret from the outset. Belinda, like many others, felt that it was, “A very private thing and is not necessarily something that you want to discuss with everybody”. 
 

Mary kept her treatment secret to protect herself. She hated the idea of being 'pitied' and didn...

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Mary kept her treatment secret to protect herself. She hated the idea of being 'pitied' and didn...

Age at interview: 42
Sex: Female
Age at diagnosis: 30
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For a long time we kept it just to ourselves, because my mother bless her is a very, I knew that she would get very busy, as soon as I start… you know interfere and all this and I would have every article on everything coming through my door and I just wanted to protect myself from that. But we did tell them, I can’t remember when, I can’t remember exactly when. But probably after about a year. We didn’t really tell many people, friends, didn’t tell friends. In fact I know that when my friend rang up to tell me that she was pregnant, and she said that she knew by the over excited way I said congratulations, but I hadn’t told her, and her daughter is only five months older than my daughter. So it was quite late in the day, but I did tell one guy at work who also was having similar problems who was adopting at that time. And yes, who I was working with at that time. But he was the only one.
 
You wanted to keep it secret or …?
 
I just… I just hated the idea of being pitied. I hate pity. I think pity, really is, it is disempowering to be pitied and I didn’t, just I hated the idea of being pitied because I had seen some of those failing or not getting what they wanted. Whichever way there didn’t seem to be any benefit in telling people or ….
 
Did you feel like you were failing?
 
Yes. Because I wanted something and I wasn’t … I was going after, pursuing a goal and not achieving it. It seemed a spectacularly… not achieving it. So yes I did. I did feel a big failure and I felt so guilty. And I also didn’t want people to feel that they couldn’t tell me they were pregnant. To make people feel guilty as well, there didn’t seem to be any benefit at all.
 
The reasons people gave for not wanting to talk about their infertility and treatment varied. While some just wanted privacy, others were keen to protect their families from their disappointment or were concerned that friends would treat them differently and not want to tell them about their own pregnancies.
 
Some wanted to keep their treatment secret from work colleagues because they did not want the fact that they were either thinking about a family or seeking treatment to affect their work prospects (see ‘Balancing work and fertility treatment’). Others just did not want to involve other people and feared having to deal with their emotions as well as their own.
 

Frances didn’t tell people, she didn’t want people asking her about it.

Frances didn’t tell people, she didn’t want people asking her about it.

Age at interview: 45
Sex: Female
Age at diagnosis: 32
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It was just you and your husband?
 
It was just us. I didn’t really talk to anybody. I suppose it was that sort of, well if I don’t manage to get pregnant you don’t really want everybody knowing that you are desperately trying and you know, people get to a certain point with you and they start saying, “Oh when are you are going to have children,” and things anyway. And you sort of don’t want to say, “Well we are trying to have it, but it is not working out and it is not going well and you know, thank you very much for asking.” 
 
So no I didn’t tell people. Very few people knew that I was trying to get pregnant.
Treatment for infertility can last months and years. People may start off telling friends and family that they are having treatment but then decide that it is easier to continue without others knowing. Saskia and her partner let a few very close friends know, but kept very vague about their treatment schedule, “Because we didn’t want them phoning up on test day”.
 
Sometimes people started off keeping their treatment secret but then began to tell family and close friends. 
 

Lulu had told her Mum and a few close friends. But she didn’t talk to her mother-in-law for a...

Lulu had told her Mum and a few close friends. But she didn’t talk to her mother-in-law for a...

Age at interview: 40
Sex: Female
Age at diagnosis: 31
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I was always open about it. I mean you know, I mean, my mother-in-law just, you know we didn’t talk to her about it for a while and she just thought we didn’t want children. You know, and actually once, she just made that assumption that we weren’t going to have children and but she was great once she knew about it, she was great, you know, so yes, quite a difficult, it is a really difficult one that, really, really difficult, because you automatically expect people to understand, but people don’t. And not all women do. 

Sarah had also not told her parents in law until they almost finished treatment because her husband hadn’t wanted them either worrying or getting too involved. Sarah felt better that they knew the lengths to which she’d gone to get pregnant and appreciated their support.
 

Carol found that it was better to be open. People in her close circle now understand why she...

Carol found that it was better to be open. People in her close circle now understand why she...

Age at interview: 39
Sex: Female
Age at diagnosis: 27
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My friends and family have known. A few close neighbours. Because I think it is important that people realise that we are having problems having a family. If not we are perceived as being abnormal not having children.
 
At first however I was very quiet, and then I have learnt the hard way, and the best thing is just speak, open about the feelings, so that people do understand and if you are invited to christening, then you can actually say, “Well actually I have just had a negative result. I don’t think it is the right time for me to be there, because it will hurt too much.” So that is what has happened. 
 
Some of the people we talked to said that they had become very selective about who they told rather than have to deal with well–meaning advice and concern from other people – which can just feel like extra “baggage” to have to deal with. Lulu said that it was sometimes surprising which friends were supportive and which were not.
 
Brian didn’t tell anyone at work about his treatment until right at the end, but wished he had. Although his boss (a woman) wasn’t very sympathetic he found another work colleague who was “brilliant”. Talking to him made him realise that other people have similar problems and he felt less isolated. He wished that he and his wife had overcome their embarrassment and joined a support group so they could have met others in the same situation.
 

Clara’s experience taught her that it was easier to go through treatment in secret.

Clara’s experience taught her that it was easier to go through treatment in secret.

Age at interview: 32
Sex: Female
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Not for a long time. Not for a long time. And then we did tell when we would go for IUI or IVF or whatever and then we found it was too difficult to involve other people. So every time it didn’t work it was like getting the whole emotional bag of other people as well as your own to deal with. And it was like oh it didn’t work. And the whole sympathy thing. It was just… we didn’t feel like that anymore. So we totally did it secretly and didn’t tell anybody. In the end, and it was easier because we had done it before and we didn’t need the support of other people.

 

Carol found that as treatment has gone on it has been easier to tell fewer people, and keep the ...

Carol found that as treatment has gone on it has been easier to tell fewer people, and keep the ...

Age at interview: 39
Sex: Female
Age at diagnosis: 27
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I have shared it with them. I think, as I said before I am quite an open person. I am quite an honest person and I think that people by now, if I hadn’t have said anything would be fearing for my sanity, and thinking what on earth is happening. So my parents have been absolutely fantastic in terms of support. They are teachers, and obviously have surrounded themselves with children all their lives and it is a natural longing for them to be grandparents. And financially they have even like offered and helped and I can’t say I want for better parents.
 
Friends, I have obviously told them what has happened. At first I kind of sang it from the rooftops, thinking that I was going to get a successful outcome. And that didn’t happen and now I am at the stage of thinking, well the fewer people I tell, then the fewer people I have to ring up again and tell them it hasn’t worked, so I just think well it is actually better to keep it quieter now as time goes on. So, and it is more of a private grief between myself and my husband.
 
 Some of the other people we talked to said they thought it was important to be very open about their fertility problems and treatment. Of course it helps if both partners feel the same way about being open. Martin felt it was easier to tell people so they knew what was going on in their lives. He felt no shame in talking about it. His wife Naomi was also very open with her friends and family. She felt it was better to have other outlets to discuss their infertility in, outside of their relationship – “If all you’ve got is each other to talk to, it must build up so much pressure. Because you need other outlets. There needed to be times when I could go off and have a good cry to my Mum about it”.
 
However not everyone was pleased that they had been open about their treatment. Clare was very open about her first IVF cycle but regretted it. When the cycle failed she had to deal with the disappointment of her friends and family, as well as her own devastation. Second time around she hardly told anyone. She felt part of the problem was that IVF treatment is so complicated it is hard for those who haven’t been through it to really understand what it entails, physically and emotionally. Maggie wished she hadn’t told friends about her fertility treatment.
 

Clare found that although she was open with her friends about her IVF treatment only those who...

Clare found that although she was open with her friends about her IVF treatment only those who...

Age at interview: 35
Sex: Female
Age at diagnosis: 31
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But the problem is that IVF is so complicated, unless you actually have been through a cycle or know someone who’s been through it, most of the time the information that you’re feeding to your friends and family, they have no idea what you’re talking about. I remember the first time I came back from the clinic on my first cycle, and I’d had my scan during my stimming injections, and I had thirteen follicles. And I texted all my friends to tell them I had thirteen follicles. One of my friends, who had been through three cycles of IVF herself, texted me back and said, “That’s brilliant.” All the others texted me back and said, “What is a follicle?” And I think that really brought it home to me that actually there wasn’t really a lot of point in involving them in every stage, because they really had no idea what I was talking about. And I think one texted back and said, “Is that good or bad?” Because she’s got no, no sort of frame of reference. I mean if everyone else is getting three hundred follicles, then clearly thirteen is rubbish. But she had absolutely no frame of reference at all to understand what I was talking about. And I think at that stage I realised that actually it probably wasn’t really worth telling everybody. And I mean that was the brilliant thing about the Infertility Network, because of course I had a whole bunch of friends online who I could go and post in the chat room and say, “I’ve had thirteen follicles.” And they’d all come back and go, “That’s great” because they all knew exactly what I was talking about. So I think, in that respect I think we’ll probably keep it quite quiet. Not because we don’t want to involve our friends, but because there’s largely little point in involving your friends to that extent, because they probably won’t really understand what you’re going through and all the different stages. I mean possibly sort of at the, you know, after embryo transfer, when I can tell them and say, “Look, I’m waiting to find out if I’m pregnant or not” at that stage maybe. But even then they’re not going to get the, the depths of, of fear and the intensity of feelings that surround it, because they haven’t been there. And it’s very very difficult to understand unless you’ve actually been through it.

 

Maggie wished that she hadn’t told friends about her fertility treatment. She received unwelcome...

Maggie wished that she hadn’t told friends about her fertility treatment. She received unwelcome...

Age at interview: 36
Sex: Female
Age at diagnosis: 30
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I think there’s a lot to be said for not telling people that you’re going through fertility treatment. We, we were fairly circumspect initially and we kept it very much to ourselves. But when we did start to tell people you would get advice, much of it, you know, kind of fairly unwelcome, and from people with three kids. And you would be like, “Well, what do you know? You, you haven’t been where I am now.” I would have a friend who would say, you know, “Well, I’d definitely go for IVF.” And I would say, “Yes, but you haven’t had to. You don’t know what it’s like for me. You don’t know the reasons that I’m choosing not to go down that route.” I think also when you tell people, there’s this kind of sense of people saying, “Any news?” And it would be like, “Well, if I was pregnant I would tell you.” And that was tough. And I think also then sympathy does have a shelf life as well. That was something that I came across with friends. You know, it’s seven years now that we’ve been trying for children, and you do have to get to a stage where you, you stop talking about it because I’m bored of hearing about it and, you know, I can’t expect my friends to be endlessly patient about the whole, the whole situation.
 
Did you feel very isolated? Was it sort of the experiences that you were going through that your friends had no understanding of?
 
It can, the whole process of infertility can be very very isolating. I have friends who’ve chosen not to have children, and I have friends who have chosen to have children, who have had three or four children. The thing was, I felt as though I, I couldn’t really relate to either camp. My friends who had chosen not to have kids, their experience was very different to mine. 
 
Martin and his wife were open about their treatment from the start. On the whole, this was a good idea for them although it did have consequences. Some friends were sensitive, others seemed to be bored. But being open sometimes meant that people who had also had treatment came out of the woodwork, which they found very supportive.
 

Martin felt some friends were “walking on eggshells” around them affecting the dynamics of their...

Martin felt some friends were “walking on eggshells” around them affecting the dynamics of their...

Age at interview: 41
Sex: Male
Age at diagnosis: 35
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And then people around you start walking on eggshells, they don’t want to mention… when you have got friends getting pregnant on the one hand you want to be pleased for them, and they want you to be pleased for them. It’s their great news. But how do they tell you this. How do they share that. That causes problems as well. And we had at that time we had very good friends who had just got pregnant and they came round, and you know, said, “ I think we have got to tell you this news.” And they were actually very good about it and sensitive to how we might feel. And that was fine. 
 
But not everybody was quite so sensitive and some people they don’t feel that they can talk to you about it, so they just back off and distance themselves, and you kind of then start to feel almost like lepers. The infertile [laughs]. So it affects the dynamics of friendship.
 
The other thing, although it is quite amazing, is the amount of people coming out the woodwork who have been through treatment. The colleagues you work with, someone that I worked with someone was having donor IVF and a number of people in your sort of social circle that actually said this is how we had our children. People start to open up and you realise that actually there is a lot of people round you. We have got lots of friends who have been through it all. Perhaps some time ago or recently. So … that sort of helps as well. People who do understand. So that’s good.
 
And friends this time, not so good, they have been through it with you once. They are bored. They don’t have to have to put the act on and say the right things. So a lot of friends distanced themselves or just made themselves scarce and stopped inviting us to parties and things. Didn’t want to be around us, having kids and things, it was all, they couldn’t talk about their kids if we were there, so… we started to be pushed away, and that makes you feel worse, because these are people that you socialise with, have been friends for a long time, and suddenly they don’t want to know you. You know, that doesn’t help. 
 
But on the other hand we made some really good friends through the contacts through bulletin boards and support mechanisms that we had got involved with. Some really great people, you know, but people that did understand where you were at and what we were going through and were going through it themselves. So you almost become an infertile club and provide that …
 
The only people that you can really joke about it, was other people that were going through it. I mean you could have an evening and it could be actually a quite light hearted evening because they weren’t just going to tell you just relax. I know somebody who had trouble, and they just relaxed and they got pregnant. If someone every says that to somebody who’s struggling they are going to get it [laughs] because it really doesn’t help, you know, that comment, yet so many people say it, and it doesn’t help. 
 
See ‘Information and support’ for more on support groups.

Last reviewed July 2017.
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