Women we spoke to often felt isolated at first when they came out of hospital, and could find it hard to relate to others, as they had no idea what sort of trauma they had just lived through. This is something that people who come out of intensive care often experience (see Healthtalk ‘Intensive Care: Patients' experiences’) but with childbirth it seemed doubly difficult. Not only did women feel that no one could understand what they had been through, they also felt isolation from others because their birth experience had been such a traumatic event. Cara had a haemorrhage (heavy uncontrolled bleeding) and hysterectomy and felt “very alienated” from other new mothers at the time. As Hannah said, “I think when things are beyond people’s own experiences, people can’t relate to them in the same way.”
Obviously, I have, you know, told my friends and we have discussed it a bit. But I think when things are beyond people’s own experiences, people can’t really relate to them in the same way.
And have you found that? Have you really felt that they just don’t understand?
Yes, I think so. I have to catch myself from being a bit judgy with people when they’re moaning about stuff sometimes. Because you know, I have a real awareness now, that bad things can, it’s such a cliché… bad things can happen to you. And until something bad happens to you, you don’t really, you know, you do go through life feeling you’re a bit sort of Teflon covered and there was like, I know those things happen, but thought it won’t happen to me, but they actually do, and so it has made me. Actually it has made me more reticent in things I do, more aware that things can happen and, and a bit more anxious I suppose actually. I think I am a bit more anxious about things. Yes, I am. I think that’s probably quite normal.
Amy' And I think the other thing that is difficult has been hearing other people’s stories, stories sort of about labour and with my kind of group of friends that I meet up with relatively regularly and them sort of talking about oh it was an awful experience and it was, you know, just that frustrates… and I don’t want to feel that because I’m very aware that for every woman that gives birth, however, you know, complicated or straightforward that’s their experience and that’s just as important as anyone else’s experience, but it really annoys me when you hear women who had relatively straightforward births…
Amy' Go on about how traumatised they are and, and how kind of I don’t know how they don’t know they’re going to have another one, because it was so hideous and I just, I don’t know. Which, and I know, I don’t like, I hate being like that because it is, you know, it is a massive thing to go through, however straightforward it is and, and, you know, I don’t, you kind of think there almost need to be a forum for every woman to go and talk about her experience, because it is such a huge thing, and then it’s like, and to the hospital it just happens every single day, you know, in every single hour, you know, and yet it’s become very obvious talking to friends that it, it’s a sort of trauma for everybody however straightforward it is, and they kind of need that space to talk about it. And you know, I suppose if it’s straightforward like, I would be more than happy to listen to somebody’s experience, but I just get, I sort of have a very short fuse I think on it, and I think I wish I’d had that chance to have, to have that skin contact.
And it’s a really, it’s just such a taboo sort of subject. And you know… because people… I mean even now, like with all my girls all close together. I mean when they were little because of the age that they were, we had a triple buggy. So they were all in, they all had a little seat, and you know, complete strangers would like, you know, like make comments like, “Oh, you know, you’re going to keep going until you have a boy.” And you know, and it’s really sort of, it’s quite harmless sort of things and I wouldn’t say, “Oh no, I’ve had a hysterectomy.” I’d say, “Oh no, threes enough for me.” And even now, people say, “Oh you know, are you going to have any more?” And I don’t ever say, “No. Because I’ve had a hysterectomy.” I will say, “Oh no, I’ve had enough.” Or, “I’ve done my bit for mankind. Three girls is enough to sort of keep the race going.” And you know, because it’s awful, that, saying that to somebody is just, because it makes, it almost ruins their day, you know, and makes them feel bad. It’s like, to me it’s almost as bad as like the old you know, mistaking someone for being pregnant. “Oh when’s it due?” And it’s like, “Oh I’m not pregnant.” People remember that kind of thing for ever. They will recount the tales to all their friends. “Oh do you remember when I said, you know, it was just horrendous.” And I think that’s similar, it invokes a similar sort of feeling, is to say, “Well no, actually, I can’t have any more children I’ve had a hysterectomy. And I had a hysterectomy in a really traumatic way, when I gave birth to my last daughter, you know.
Several women described what they felt was a lack of empathy or understanding from friends. Lisa had a haemorrhage and hysterectomy and stopped going to playgroups, because people say such “stupid things”. She fell out with a friend who tried to understand but just said the wrong things.
People say such stupid things as well. You know, you said earlier about playgroups and things. One of the reasons why I can’t go to playgroups is because they say such stupid things, yes, they see you’ve got one, you’ve got one, you’re lucky to have one. They you are really lucky. You just, they don’t have a clue, they really don’t. The one is a torture, because I never realised what it was like to be a parent, and I was actually better off in the dark I think. Because now you realise the joy of being a parent and how brilliant it really is, and they’re growing bigger and bigger all the time and growing away from you. And you can’t do this again. So every month that goes by, you’ve lost with your child, because you’re never going to do it again. And that’s a really hard thing to explain but if you can do it again, you think well, she’s growing up isn’t she. Isn’t our girl growing up, let’s do it again. Let’s have another one. You know, you can repeat the whole process. When you can only have one, and it’s never going to happen again, that period’s gone. I’m never, ever going to have a new born baby.
Which is an awful thing to say, but she said, “I’m the same as you [name], I’m the same as you. I know exactly what you’re going through, because we couldn’t afford to have another child. So we won’t.” “It’s not the same. How can you say that? You choose not to have another child. Because you haven’t got enough bedrooms. You could move. That ridiculous. You could do this again if you wanted to. You’re younger than me for one thing.” She’s five years younger than me, so how can that be same? And we fell out with each other, so many times over it, because she would try and understand it just I couldn’t bear it in the end. That’s why I don’t go to playgroups because people say such ridiculous things.
In the early days when she was home after her haemorrhage, Natalie felt that friends and family didn’t realise how serious her experience had been – “I just don’t think they understood, they really just have no idea”. Anna, who had septicaemia (blood poisoning), thought that family and friends quickly forgot about what she had been through.
But it is hard you know, when I left hospital people, people just stopped bothering and… I felt I really struggled with friends. I really struggled with people that made false promises, and I’ve still got a lot of upset towards them people that were all round and all there, when I was in hospital. But as soon as I came out they didn’t care. That’s when I really needed my friends. That’s when I really needed people to be there for me. To basically say, you can lose your temper, yes, you can. You are allowed to feel like this. Not made to feel that I couldn’t talk to anybody and I couldn’t, [pause], I had to be positive because I didn’t really have much choice. Like I’d already made a decision that I wasn’t going to let it eat me up. But mentally it was, and it was so hard. It was so hard to get past it and there was no help.
Women were often struggling with their recovery from a serious medical emergency, and with a newborn baby. For first time mothers this was particularly challenging. They felt excluded from the normal support routes, such as National Childbirth Trust (NCT) groups, or local play groups, because their experiences were so extreme.
But yes, it was really, really difficult to, to sort of, but I think one of the hardest things was I felt very alienated from my peers at the time, which must be something that you come across quite a lot.
Obviously I had been part of NCT ante natal group. And you know, I tried my best. I went along to the meeting, you all do after all the babies are born. But you know, who’d want to have someone like me around at that time [laughs]. You know, and then with the yoga group, same thing. And it didn’t take long before I distanced myself quite quickly. I felt very bitter. Very uncomfortable being round people who seemingly had it so easy. And of course, everybody wants to tell you how awful their experience was. And I still can’t tolerate it. I have no tolerance for someone who wants to cry because they got a Caesarean. Awful isn’t it? Just imagine. You know, and I have evolved since then and I do appreciate that to some people their emotions can be more sensitive to things and I am, I do appreciate that now. But it’s not a topic I’ll gladly sit down and chatter about. I just excuse myself from it.
Well it went further than that, I mean I felt alienated from my sister, I mean it really did impact on my relationships for many, many years, probably until, until I completed my family last year. So you know, it’s, seven years of basically feeling quite alienated in that way. Although to be fair time does resolve a lot and you do come to terms with things. And start dealing with things, but yes, it does alienate you from whole age group. I remember I wrote a diary at the time, and I remember writing you know, “Oh gosh, I’ve got to deal with this for the next however many fertile years, me and my peers have or would have.” You know, that’s what 20 more I was 29, well may be ten or fifteen more years basically and having to deal with that, so yes. I mean fortunately for me it hasn’t turned out like that way, because I have been very lucky to go on and have more children, but yes, I mean it’s quite a scary thing at the time. Makes you feel quite different.
It’s sharing feelings which you think that your friends or family, you just know they’re not going to understand or be sympathetic towards. It’s kind of hard to explain really. Yes, it’s basically that, it’s just, you know, that, you know, that if I’ve got a friend and I’ve got plenty of my NCT friends now, who have had their second babies and one of them had a, she had a traumatic birth in that she gave birth in her car on the way to hospital or actually in the hospital car park. And one thing that I found hard is that she’s able to talk about that experience and then when we’re in a group, you know, they’ll all compare stories of oh yes my first was hard you know, because blah, blah, blah and I don’t know why, I always find it really hard to say, “Well hey, [laughs] how about my situation? You know, beat that one,” [laughs]. You almost feel. It’s a really hard thing to describe but you almost feel excluded by the fact that you’ve had such a major event that you don’t want to always be coming in and saying, “Well hey I had the worst scenario.”
It was like, you know, oh well, you’ve got three children, so that’s okay. You know, there’s lots of ways people… because it’s because uncomfortable. It’s a really uncomfortable thing for other people. Because you don’t… like you go to a Mum and toddler group, and, you know, you’re the one that’s had a hysterectomy. So no one wants to say anything. Other people feel uncomfortable with the fact that if they’re pregnant, it’s a really, it’s not a very nice place to be for a while, and you feel bad, because you’re just, you do feel quite resentful at the same… They have reason to be kind of wary, because you do feel, it’s an awful feeling. It’s that, it’s a real empty sort of feeling.
Given the rarity of what they had experienced finding others to talk to who had been through something similar was unlikely. Debbie had found online support groups helpful, but would have liked “to meet somebody face to face and sit and have a coffee and go through what happened, and I’m sure you would end up in floods of tears, but it would be so helpful and it would mean so much more, because you’d have something in common.”
Alison T had amniotic fluid embolism (AFE), a very rare complication of pregnancy in which amniotic fluid, fetal skin or other cells enter the woman’s blood stream and trigger an allergic reaction, that very few women survive. She has looked for support groups and not found anything.
And what about support? Where have you found support from?
All the people that I see at the hospital are all very supportive, but the one thing, there isn’t, for the condition that I’ve had, the amniotic fluid embolism, there is no support group, or I can’t find one that’s in this country. There’s one in America that I’ve joined, but I would really like to be in touch with people, somebody in this country, just for them… Because we would have an understanding, because when you’ve been through something like this, people don’t understand the enormity of it, and how it does affect you mentally really. It’s a massive, massive thing, and you have all sorts of emotions when you know that most people don’t survive. You almost feel guilty because you have survived and then you’re questioning, well why did I survive? You know, instead of thinking oh thank God I survived, it’s almost the other way. Very, very strange feeling. So it would just be nice to talk to somebody else that had been through it. And how their families have dealt with it.
Some women also felt physically very isolated once they were home from hospital. Some were a long way from family, others were not well enough to get out and about and see people, and so became housebound. Clare had a deep vein thrombosis/ blood clot (DVT) in her leg and although there were lots of young families on her road she still felt “quite isolated though because I couldn’t go out and I couldn’t see anybody. I couldn’t see my friends. So it’s a very strange time. I suppose I felt quite detached from the world.”