Support networks for menopausal women
The menopause might sometimes seem to be an invisible, unmentionable topic in wider society, but many women had discussed their symptoms, concerns and experiences with their friends, partners, female relatives and work colleagues, as well as taking part in internet forums and organised support groups. There is much overlap between ‘information’ and ‘support’ – especially when women are finding out about the menopause from their social circle (see ‘Sources of information’).
Marcia wishes that womens issues were not brushed under the carpet in our society
And yeah, I think there needs to be more awareness of it and more open discussion about it as well.
So do you mean open discussion within the GP’s practice, what do you mean?
I think in society, I’m talking more from a society perspective. We talk about pregnancies, I mean periods are advertised on the telly, tampons and things like that, but there’s no discussion about menopause and I think that that is a real barrier to people especially if they’re going through mood swings or memory lapses and they don’t know that that could be the start of it or part of it. Sitting at home worrying and thinking is there something wrong with me because at first when I used to have the memory lapses I’d think what’s wrong and then talking to people you think, oh that’s part of it. Yeah.
That’s interesting isn’t it. So why do you think women and society generally don’t talk about the menopause?
I think it’s to do with women’s issues anyway. I think women’s issues are always sometimes brushed under the carpet and because it’s a thing that’s going to happen to you naturally, why should you be concerned about it because it’s going to happen to you anyway. But I think that the effects of it on the family and society, people should talk about it a bit more so they can be more supportive if support is needed.
Sisters, mothers and partners
Sisters were a particular reference point for many women although sometimes the experiences varied widely within a family, e.g. if a sister had had a hysterectomy. Some partners were very understanding and supportive but clearly it was often difficult for men to truly empathise. A gay woman commented that she was pleased that she and her female partner went through the menopause at different times - empathy or not, it would have been a real emotional challenge if they had coincided.
Lorna has had much support from her husband. She wonders why women only mention the menopause and...
And he [my partner] was absolutely superb. I cannot imagine what it must be like to have a partner that doesn’t do that or doesn’t relate to a woman who’s going through the menopause. And particularly if a woman has made a decision not to take HRT. You need so much support. I’m sure there are women out there who don’t have symptoms but I’d like to meet them to be honest with you, as I suspect they are few and far between. Now, you need support because you need somebody to tell you’re not going doolally apart from anything else.
Do you think women generally talk about these sorts of things?
No I don’t think so. I don’t think we do it as much as we should.
Why do you think we don’t?
It’s a very interesting question. Why don’t we women, we all know it’s coming, we all know round about what time it’s going to come and yet we mention it to one another almost in hushed voices. Why do we do that? A denial, it’s ageing, it’s, I think there’s a lot of conspiracy of silence around things that are uncomfortable anyway. I mean it’s like the conspiracy of silence around child birth, nobody actually tells you what it’s going to be like. Maybe we wouldn’t do it if we knew what it was really going to be like. But nobody bothers to tell you. We talk about everything else under the sun but they don’t actually tell you what it’s like in graphic terms to have a baby. And maybe there is this thing about we don’t like to give bad news or we don’t like to talk about things that are difficult, that we’re quite good at talking about how we feel about things I think these days women to women. But we don’t actually like to talk about the facts in that sort of way. I don’t know, I’m posturing, I have no evidence whatsoever for it, this is just my feeling. I don’t know why we don’t. We should, we really should. We should prepare ourselves and think about it and maybe you wouldn’t feel that you were going a bit doolally if we talked about it more with one another. If it was more openly talked about but there are so many taboo subjects in society. We don’t talk about that, we don’t talk about all sorts of things, we don’t talk about mental illness, we don’t talk about incontinence, we don’t talk about you name it. So many taboos.
While some had been able to have fairly open discussions with their mothers, others noted (sometimes with regret) that the older generation was less comfortable talking about these matters. Women whose mothers were no longer alive sometimes said they missed the ideas of a guiding hand to encourage them during the menopause.
Rachels mother now talks openly about the menopause even though it wasnt spoken about in her day
And your Mum, is your mum still alive?
Yes my mother is still alive.
Does she talk about it?
The strangest experience I have of my mother, my mother must have been probably about 45, 50 so I must have been twenties then, early twenties and I remember Mum coming home and Mum saying how hot she was and I said “It’s not hot outside.” I specifically remember this. I don’t know with my mother’s age group or that peer group, that group, they seemed to have taken this on board, not spoken about it openly very much like it wasn’t the done thing. They’ve taken this on board, they have suffered immensely so if there was some sort of support like we all sit and talk together now. They probably didn’t do that I don’t know twenty, thirty years ago they probably didn’t do that and I think they suffered quite a lot.
And does your Mum talk about these sorts of things now?
Yes she does. Yeah. All of 76, 78. She openly talks about it now. I will have friends round and she’s there and we’re all talking about the same thing and she’ll share her experience. She will say “Oh well I didn’t use anything, I didn’t take anything” but and I always say “Well, that was you.”
Annette is close to her mother and they often talk about the menopause
But the menopause is a really funny thing. I think to talk to somebody about it openly, it’s the first time I’ve really spoken about it to anybody because I mean openly, because usually people are busy, they don’t, what I’m saying, everybody I know works, everybody’s busy. But sometimes me and Mum talk because I mean she thought she’d finished her menopause and obviously she hasn’t, because all of sudden now her sweats have started coming back. And she’s now in her sixties. So I think once you’ve hit that sort of line in life I don’t think it ever leaves you.
Well Mum sort of put me onto the guidelines as to what to expect. Because she had the hot flushes, she had the irregular periods. Then as I said recently the hot flushes only just come back. And she even says to me, “I thought they would have been finished with but all of a sudden now they’ve come back”. So, me and my Mum talk about it a lot. I’ve not always been close to my Mum because of her past history and circumstances, but she’s my Mum, so you can always, that’s why I said women, when we do talk we can talk. But sometimes the kind of lifestyle we lead, I know you’re busy, it’s having that time to talk to people. And not men, because I don’t think, I’m not saying all men don’t understand, I think some men would understand. But I think another woman, talking to another woman, like I prefer to go and see a woman doctor, I prefer to go and see a woman nurse, that’s how I feel.
Friends and colleagues
For many women, friends offered a welcome source of support. One woman told us that once she started to talk to her friends about the menopause she found it was ‘lovely’ to be open about problems with hair, skin and weight as well as mood swings and hot flushes.
Sharon has been friends with the same circle since junior school; they all talk about their...
Yeah, I have got a circle of friends who I’ve been friends with in junior school. So I’ve known my friends longer than I’ve known my husband and this circle of friends, there are six of us in all, and we’re all the same age because we were in the same class together. And we still go out on Friday night, we still get pissed up, we still have a dance and we still have a laugh and we still have a joke and we still cry together. And we’re all going through the same things so we’re at the end of the phone or text messages and I think it’s good that you have got that, I’ve got that connection with my mates. And I’ve got a sister. And my sister’s only 50, how old’s [sister’s name], she’s 56 so of course there’s only a couple of years between us and she’s another network that I can discuss these problems with and issues. And [husband’s] mother’s very good as well. She’s in her seventies but she knows what’s happening to me.
Women seemed to be more willing to be open about menopausal symptoms among friends once they reached the age of 50 – those who had hot flushes pointed out that it would be pretty hard to disguise their status from people with any awareness of menopausal symptoms. Some younger women, however, said they were a bit reluctant to talk about menopausal symptoms with female friends because they felt there was a competitive element in their relationships with them. They felt that if a woman admitted to being menopausal this might dent both her attractiveness and self-esteem.
Judy explains that she did not want to be defined by her menopausal status; she is aware of some...
So I have more recently just talked about it once on the phone with a friend who lives in Australia. We’ve known each other for many years and I’m happy to do that because she’s quite far away and we don’t have to see each other when we’re talking about it so it’s not too embarrassing. But that’s something I’ve consciously tried to do because I think it’s worthwhile doing that but that’s the only conversation I have really with anybody about it.
Why wouldn’t you talk to your colleagues or your friends here and people like that?
I think it just ties into my whole of view of it might be conceived of as a weakness. Some, one of my male colleagues did make a joke about being menopausal to me and I just laughed it off but it’s not something I’d want to bring into work. I want to be at work and be just a colleague, who teaches, admins and researches and has some sort of relationship with them but I don’t want to be seen as a woman in various changes. I don’t want to be seen as that because I think they would see me as something lesser than what I’d want to be seen as.
And does the same thing hold for your girl friends outside work?
There’s always an element of competition I think, so one friend’s not got any grey hair and she’s very proud of that fact. And it’s not something I’d want to discuss with them either because I see them on a regular basis and I wouldn’t want their opinion of me to change because I would then become [name] who’s perimenopausal rather than just [name] who is this that and the other for what I achieve or what I can do rather than biological changes which I have no control over.
I guess it depends on the way they’ve been brought up. I think I’m maybe slightly on the periphery and that I’ve always from the word go considered periods and all of that sort of thing as something that you don’t talk about. For those women that don’t have that perspective, and I think that’s the right perspective to have, well then just talk about it with friends and that’s the best way to do it. It’s not to have a forced environment and just to talk about these things as they occur as you do when you have your children and you talk about the issues “what’s the best thing to give a child who’s got earache”. You just have a naturally evolving support group which isn’t forced and that’s the best way for it to proceed. So you’re part of a community, your friends are of a similar age, these are just changes that affect everybody and you would just discuss that on an as you come basis.
In some (female dominated) work places women found that they could be quite open with their colleagues, comparing notes, joking, lending each other fans and opening windows. But a supportive work environment was by no means a universal experience and some women found it very difficult to manage their symptoms at work (see ‘Work’).
Joyce feels a strong sense of responsibility to support other menopausal women who work in her...
And I just think back to my experience that there was no way I would have wanted to have shared it with anybody and I suppose I see part of my responsibility to be able to set a climate where people can confidentially be able to go and seek some support. I think the more difficult thing is getting the wider managerial levels to understand that sometimes people need to be cut a bit of slack and need a bit of empathetic support. Because we don’t go into work do we, with a badge saying, “Oh by the way, I’m just starting my menopause”, because this is something that creeps up on you. It’s not something that you just, it’s not like being pregnant is it, that you can say well from here to here this is what this is, how it’s going to be. These are symptoms and features of a woman’s life, which are very difficult to define. I couldn’t say yes it started there and it ended there, it’s not like that, is it? But I think it’s just being able to strike an empathetic working environment where, when people need a bit of support. When I was talking to you wasn’t I about opening that working group for women, I said something which I saw everybody smile and nod their heads at. I said, “Sometimes you just need a hug. Sometimes you just need a hug when you’re feeling tearful and you just think, ‘Oh I’m just, I’m having a shit time’. You just need a hug”. I can’t go round and hug them all. But I can start to engender a working environment where metaphorically that hug is there if they need it, because they can go to somebody to talk it through. And that’s what I’d want to do.
Maria is pleased that, since taking part in these interviews, her colleagues have become more...
It’s only recently through speaking to you that, especially at work as well, the girls are willing to talk about it [the menopause] more. They want to sit and discuss it and they were a bit nervous. They were waiting to see how this went and then maybe you will have got more response from them because some of them are a bit shy or nervous about the situation. Like I said, there’s two ladies, well, one I know in particular, she’ll cry when she has a flush. She’d rather hide in the toilet. It really upsets her but I think her upbringing, she wasn’t able to talk about it. She has no one to talk to about it so when I started broaching the subject at work they were like, “Wow, oh, someone’s speaking to us about it.” And so it’s a more open subject at the moment.
How many women do you think at work are going through this?
There’s loads. I know of six off hand really, at the moment and we all laugh, well, we talk about it but we make a joke about it at work because they’ll take their jackets off as well and they’re fanning. One lady is looking into herbal remedies. I’m not sure exactly what but she was going to get back to us about what she’d researched and somebody drinks iced tea. They’ve all got their own theory as to what makes them feel better. So yeah, but it’s an open subject now at [supermarket].
I’m actually glad that you’ve appeared in my life because, like I said, I was debating, I was saying to [friend] the other day that I might try and start a support group or something, even if it’s just a little discussion group or something. I want to do something, just for women to talk. Nothing else because I can’t give them anything else but just to sit and talk like you are now, like I am to you. Because I think it makes people feel better. [Friend] was fabulous. She was absolutely over the moon after you’d gone and she said, “Oh, I feel a bit relieved that I’ve just told somebody what I’m going through.” And I think sometimes that’s all women need, someone they can sit and say, “Oh, I’ve had a flush today. I feel terrible. Blah blah blah.” Get it off your chest you can deal with the next day.
The internet as a source of support
Many women used the internet as a source of information; some also ‘met’ other women through internet forums such as Menopause Matters. Finding others who were dealing with the same issues could be an important source of support. Women with an early menopause, for example, found support from internet forums such as The Daisy Network (see ‘Early (premature) menopause’). A few women had noticed that the American chat rooms seemed to focus on different issues and concerns and it could be confusing to receive competing advice on how best to cope. (for more information on websites see 'Resources and information').
Jackie posted comments on an internet forum and found that the replies were a massive support.
Tell me about the forum, how that works for you and the Menopause Matters website?
I can’t quite remember how I stumbled on it really but it must have, it was earlier in the year when I think I must have been looking, when I was feeling at my worst. And I must have Googled menopause or something on the internet and Menopause Matters must have come up and so I must have gone into that. And I’ve never been off it ever since really. It’s just one of those that has the information that you need. I mean that was where I found out about the Estradot different dose patches that you could try. That was where I found out what I believed already about the testosterone, the role that that plays on mood, well-being what have you. I found out about that on there, extra about that and then just really going into the forum. I mean I did post a few times myself when you’re feeling really desperate and you can put on that you’re having a desperate day, any advice, and women would come back and sort of say that they had felt like that at times and it’s a massive support definitely. And I just still check it most days just to see what subjects people are coming up with and I think that’s the way of keeping on top of what you’re likely to come up against really.
Any disadvantages of the website?
Only if you read something, you can sometimes panic a bit more. Like you might read something oh crumbs, oh yeah, and so sometimes if you’re in panic mode, which takes nothing to set when you’re going round with anxiety and being on edge, it takes nothing to make you feel more panicky and that’s what I’ve been like a lot this year. It does hit some women more than others I think.
Carole became a frequent contributor to a Menopause Maters web forum, which she found to be a...
I think I ‘Googled’ menopause and there was I think the only thing it directed me to was a very clinical description medical terms which I don’t know what they were talking about. And it wasn’t until I found Menopause Matters that I thought let’s have a look at that one and the main front page gives a lot of information about HRT, treatment options, symptoms of the menopause which there are supposed to be at least thirty five and how to get information and various other links. But it was the forum, the members’ forum that really opened my eyes. I think I saw one posting on there from a lady, I think it was the first one I read that hit home and it said something like, “oh I don’t know what to do, I can’t be bothered to do my housework, I haven’t done it for two weeks, my house is a mess and I’m getting so depressed and down about it”. And one of the other members had replied, “sod it, forget about it, it’s still going to be there tomorrow, don’t beat yourself up about it, it’s not the end of the world, just take a step back and look and think about yourself for a day or two and then you’ll feel, because it’s always going to be better in the morning, you’re always going to feel different in the morning”. It’s true. And they’re just people that open up and like I said before it was like me writing it, it was like me talking, saying what they were saying was what I was feeling.
If Mum had been around she might have said “Well, look it sounds like you’re going through the menopause, let’s talk about it” and I didn’t have anybody who could do that so seeing that was just, it was like a big friend, invisible friend, and I have made friends on there, I’m never going to meet them but the two years now that I’ve been with that forum I’ve made good friends. We go through it together, we hold hands, we support each other.
How often do you look at it?
Oh, every day. Every day.
How often would you post a message?
I haven’t done so much since Christmas because of the holiday and as I say I had that cold and that. I think I’ve done over two thousand posts in those two years.
Organised support groups
Some women also talked about the need for a more organised service to provide support and advice without advocating any particular treatment approach. For women with an early menopause, organised support groups run by menopause clinics offered much needed advice and an opportunity to share experiences (see ‘Early (premature) menopause’).
Sandra suggests that support group meetings run by women would help, where women could learn from...
You were talking about the idea of having weekly meetings. How would you see them working?
I think people should think about working women and women who haven’t all the time in the world. I like evening meetings because if you work and you’re not going to be able to get there [during the day] I think if you knew it was a meeting in the evening you’re more likely to go. I would be more likely to go to that and just listen to other people and see how they’re coping with it and how it’s affecting them because it might be that I’m having some of the side effects but don’t realise that it’s linked and just think it’s because perhaps I’m tired or it’s my age - things that I’m thinking are my age might not be.
Who would run those sessions do you think?
Other women who’ve been and experienced it. Definitely other women who’ve experienced it.
Would the GP or practice nurse be involved?
I don’t think you’d get them to be involved to be honest because I don’t think they’d want to do anything in the evening for a start off - well I’m pretty sure in my area they wouldn’t want to do anything after five o’clock and the practice nurses are finished anyway and the doctors go on till about half past six and I couldn’t see them wanting any time after that.
Susan describes a clinic which offered 45 minute appointments with a menopause nurse who...
Yeah. Well, first of all it’s non-directive. The first thing that it offers is time. Every appointment’s 45 minutes. And a review appointment’s half an hour so the first thing it gave when it started, first of all it was the first menopause clinic in the city. There was no other menopause clinic so it was the first. It was offered by health visitors and what they did was really give women time to talk, just what I’m doing here now, to talk at length about how it’s affecting her. There would have been advice around complementary therapies and there would have been referrals to places that did complementary therapies and we at that time, would have done quite a bit on Bach Flowers, that type of thing as well as referring them to other centres for complementary therapies. There would have been advice around HRT. It was non-prescriptive so therefore it was offering women choice. It was also I mean there were maybe other issues that are going on for women as I say, there usually are so it was signposting them to other routes either within [women’s health centre] or within the city where they could get support with other issues that were going on for them.
It was very much offering advice on how to manage stress, how to relax, how to manage hot flushes, how to, well not to manage them, but to accept them I guess and to go with them and to treat them as with complementary therapies. They would have been informed fully about HRT and I suppose about accepting the natural process of it and just the power of being able to talk. And frequently [name] who was the menopause nurse, said that really the menopause might have just been the outer layer of what was presented.
What people wanted was to go in with the onion skin effect that just was layer upon layer to it was so many other things that are going on in a woman’s life. And that really it’s maybe the ability to cope is lessened and the ability to deal with kind of what can be tectonic change type events in your life to the ability to actually manage those at a time when you are just physically in such a state of hormonal upheaval really. So it was by putting in support. It was about offering choices. It was about acknowledging that there are complementary therapies there that can support you and help you to relax and to ease the symptoms of the menopause.
Not all women feel the need for support when they are going through the menopause. Those who have no, minimal, or very manageable symptoms may even think that there is too much discussion of the negatives. Women whose menopause is straightforward may find it difficult to say so, a decision that may contribute to an impression that everyone has a hard time. One woman, for example, who ‘sailed through’ her menopause, did not speak up and felt a bit guilty when friends compared symptoms ‘I listen sympathetically and I really feel desperately sorry for them (laughs) but I just feel really quite lucky it didn’t happen to me!’ .
Last reviewed July 2018.