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Woman, interrupted

Marilia Duque E S9 January 2020

The “Menopause Kit” developed by Rosana Galvão, who has faced a decade of hot flushes. It includes an elastic hair band, a hair clip, a hand fan, tissues and a bottle of water. Photo (CCBY) Rosana Galvão.

 

Three weeks ago, The Economist published an article[i] addressing all the symptoms menopausal women face, often unnecessarily. The article talks about some of the arguments in favour of the hormone replacement therapy (‘HRT’ hereafter), highlighting that misinformation about the treatment can often lead to its demonisation. In the author’s words, HRT constitutes a “cheap, alternative” treatment with significant “long-term benefits” for women entering menopause.

The article also discusses the two publications that are responsible for various turning points in terms of the reputation of HRT in the past decades. The first book to discuss the symptoms caused by the deficiency of oestrogen and as well as its potential use in alleviating these symptoms was “Feminine Forever” by Robert Wilson, published in 1966. The second turning point was the publication of the study known as the Women’s Health Initiative (WHI hereafter), published in 2002. This publication was the first to seriously emphasise the harms caused by HRT and has had a long-term effect on the reputation of the treatment, associating it with an increased risk of breast cancer. According to a 2006 BMS (British Menopause Society) article, after the WHI study came out, ‘most women’ stopped having HRT. The most recent turning point in terms of the perception of HRT is the launch of the book “Oestrogen Matters” (2018). The book’s co-author Avrum Bluming (an oncologist) reframes the findings of the original WHI study, arguing that the women recruited for it were already unhealthy or well beyond the ideal age for starting HRT. This publication, along with other recent findings, may be the key to redeeming the previously controversial treatment after all. This is great news for those entering menopause now or in the near future, but what about those to the women who went through it in the last 20 years?

The WHI study has undoubtedly had a long-lasting effect on the reputation of HRT all over the globe. This includes Brazil, where I conducted a 16-month ethnography with older people, among them women aged 50 to 72. When the findings of the WHI study were published back in 2002, the Brazilian journal Folha de São Paulo[ii] published an article where the Brazilian Ministry of Health proudly informed its readership that the Brazilian public health system (called ‘SUS’) was aware of the risks involved in recommending HRT, only having done it for very specific situations or cases (such as when women were suffering from osteoporosis) since 1995. At the time, the Women’s Health Coordinator in the Brazilian Ministry of Health was quoted as saying: “The risks are bigger than the benefits. Any serious person would recommend the therapy with precaution”. It is interesting to note that in Brazil, menopause as an issue had been included on the public health agenda since 1993, as part of Brazil’s Women’s Integral Health Assistance Programme (PAISM)[iii]. This marked a shift in the overall approach to women’s health, from an emphasis that was previously focused on maternity, to a more holistic approach that took into consideration all stages of a woman’s life and health. This can be seen a consequence of the ageing of the population in the country.

Nowadays, the official guidance published by the Brazilian Ministry of Health, summarised in a document called the ‘Handbook of Care for Women in Menopause’[iv], recommends a mix of physical and educational activities as well as eating a special diet as the main approach to managing the menopause. The material also contains healthcare professional facing information, addressing therapies including hormonal treatment (followed by a discussion of its side effects), acupuncture, phytotherapy (a type of herbal medicine) and anthroposophic medicine (a distinct special therapy system that has recognition in some countries).

The Ministry of Health issued handbook also encourages women to be informed about the risks of HRT so they can make a decision about the type of therapy they want to have. From the perspective of the research participants in my field site (a middle-class neighbourhood in São Paulo), I can say that this is very much a secondary problem. This is because there is first of all a lack of reliable information and support about menopause in the first place, and about what its effects on a woman’s quality of life may be. A quarter of the women I interviewed had gone through it with no information or support, and confessed they didn’t have much time to pay attention to the changes in their bodies because they were focused on work or family. At the time (10 to 20 years ago), many of them were taking care of their children and older parents. Moreover, menopause is a taboo even among women. Some women I spoke to are from a generation that didn’t talk about menstruation or menopause with their mothers or with their cousins or friends. They were alone. Some of them only realised during the interview that the time they stopped having their menstruation actually coincided with the time they started to experience depression, insomnia, weight gain, and a loss of libido. Decades later, I can see that the new generation of menopausal women have started talking more about the subject, but the level of professional support hasn’t improved very significantly, especially for those who rely entirely on the public health system. Take Maria’s case: aged 52, she has been having hot flushes for a whole year, but she can’t say if she is experiencing menopause or not, because she has got her period twice during this time and her doctor says her diagnosis is unclear. Without professional support to guide her at this time, she has started drinking blackberry tea, while she trying to manage the embarrassment and discomfort she faces when the hot flushes come in public. The tea was recommended by her friends, who are her primary source of information. Maria asks them for advice, but each one tends to suggest different things, since they experience menopause in different ways with distinct symptoms.

Menopause is also a class issue in Brazil. The meaning attributed to menopause and the treatments available differ from one social class to the other.  A study conducted in a low-income and religious community in the Northeastern region of the country[v] showed that in the community in question, menopause can be seen as an act of God, with God being the one helping them accept it with resilience. In that specific example, women are subjected to a set of stigmas related to loss of fertility, leading to situations where some are seen as ‘dry women’ or even ‘non women’, primarily from the perspective of men. In a peripheric urban area of Sao Paulo, another study[vi] shows women experiencing menopause as a totally unexpected event, almost as if it is something one has ‘caught’, and is not directly associated with ageing. These women tend to use basic public health clinics to manage their physical symptoms without having access to a specific programme or assistance for menopausal women. In their case, HRT is rarely recommended because of its cost and because there is a gap in local resources that means clinics are not able to manage patients in a more long-term way – HRT would involve having routine medical tests, for example. Another study conducted in an upper middle-class neighbourhood in Rio de Janeiro[vii] shows that here, the situation couldn’t be more different: menopause is swiftly ‘treated’ with HRT almost by default, because these women are in the prime of their lives and want to get on with things. This doesn’t mean this group of women considers menopause something problematic or unnatural. They just want their bodies to have the ability to carry them through the new experiences and projects they aspire to do during this period of their lives – and they can afford to pay for it.

A moral dilemma

When access to information and the cost of treatment are not an issue, having HRT still seems to raise a moral dilemma that goes beyond the choice between hormones or cancer. Having HRT can be seen as an act of vanity or an irresponsible decision on the part of women who simply can’t accept the fact they have aged, with HRT symbolising the selfish and dangerous choice to pursue youth. The moralising dimension to the consequences of that choice can be seen in the following paragraph, taken from another official document published by the Brazilian Ministry of Health, the ‘National Policy for Integral Attention to Women’s Health’[viii]:

The medicalisation of women’s bodies, with the use of hormones during menopause, finds a fertile field in the female imagination due to the false expectations it places, such as eternal youth and beauty. Medicalising women’s bodies, in the name of science and supposed well-being, has always been a practice of medicine, which will only change when women are aware of their rights, of preventive and therapeutic possibilities and of the implications of different medical practices over their bodies. Oestrogen abuse for menopausal symptoms causes serious health problems, and women should be properly informed so that they can decide whether or not to do hormone replacement therapy.

In my field site, the moralising discourse around HRT is expressed even among women who do decide to have the treatment. Even as they describe the way in which they suffer from menopausal symptoms and how HRT provides them with a better quality of life, there is still an attempt to justify their choice using expressions like “I only used the bare minimum”,I only had it for a bit”, or “I wish I had prepared for menopause better with more natural alternatives”, quickly adding that they are either trying to quit HRT or have already done so.  Claudia, aged 65, is one of them. She is convinced that women don’t have to go through all the suffering menopause can bring, and that HRT is an important ally in supressing symptoms, but she too feels the need to emphasise that she doesn’t take it anymore, even if later in the interview she says she is still under treatment.

In the same National Policy for Integral Attention to Women’s Health, menopause is addressed as a challenging experience for women, who are now having to deal with the loss of their ability to have children as well as the end of their youth. Combined, these factors would be enough to trigger a crisis in some women, as highlighted in the paragraph below:

 “There is a systematic discrimination in our society based on people’s chronological age. In the case of women, this discrimination is most evident and occurs not only in relation to the physical body – fuelled by the overvaluation of motherhood in relation to other capacities and the myth of eternal youth – as in other aspects of life. In a patriarchal society where youth and beauty are related to success, entering “middle age” can give many women the impression that “it is all over”.”

I have had the opportunity to listen to the stories of seven women over 50 who don’t have children. Three of them had experienced fertility problems (either them or their husbands) although the couple decided to keep having sex without any intervention. The fourth woman I spoke to was married, but the couple decided not to have a child. The other three women were single. Two of them said they didn’t have a partner they could feel committed to and could start a family with and the third just can’t imagine herself being a mother. All of these women are now thinking about the children they didn’t have, but that is just because, like any other person at this stage in their lives, they have begun to think about who is going to take care of them when they get older. There is no evidence among these women or among my own female research participants that they are experiencing the feeling that “it is all over”. On the contrary, they are living their lives to their fullest and many of them are discovering new passions and engaging with new projects. While it is true that they complained about their bodies, this is not because they miss their beauty or their youth – in fact, they usually complain about the disposition they used to have (and for some, this includes the disposition for sex).

When sex matters

Menopause isn’t only about the end of motherhood or the loss of beauty. For some women, sex is huge part of their identity, although that is not true of the majority of the cases in my field site. Most women I spoke to recognised the changes in libido that they experienced after menopause and accepted them. In some cases however, the loss of libido can represent a sort of loss of the self. That was the case with Carla, aged 70, who had HRT for five years before her doctor decided it was time to stop the treatment, leading to her spiraling into depression, noticing changes in her hair and skin and also in her libido. Carla defines herself as a person that is extremely connected to sex.

Do you know a person who is good in bed? That is who I am, and I am not talking about sleeping. I know what pleases me, I know how to please my partner, and I know how to make him please me”, she says.

As an example of an upper middle-class participant, Carla challenged her doctor’s authority. She researched alternative doctors and found one who she knew was in favour of recommending HRT. She then pursued all the necessary tests in order to be prescribed the treatment again, and found that this enabled her to go back to who she was.

I am not just a statistic. I have the necessary tests every three months, and I have decided to take the risks”.

Another participant, Gisele (aged 61) like Carla really enjoyed sex, but her journey took her in the opposite direction. Her doctor didn’t recommend that she have HRT, given her family history of breast cancer and because she was a former smoker. “If there is even a 0.5% chance of getting breast cancer, I won’t take the risk”, she says. Since then, and despite 11 years of hot flushes, Gisele has tried to reinvent herself:

“I am glad I enjoyed sex so much, I am glad that I never held back. It was good because at least I have something to remember today. That person – me –  I really existed. Because it’s so hard today without any libido, zero. Where did all that desire go? Did I really live all that? Was it me? It was me, right? It’s very hard to recognise myself. So I’m in much need of psychotherapy, because it’s all so strange to me. How can I start to think about myself without sex?”

The original Economist article sums up the harm that can be caused to women’s bodies very well, noting that menopause can harm “brains, hearts and immune systems. It is associated with a higher risk of osteoporosis and fragility fractures, increased abdominal fat, and a heightened risk of contracting diabetes”. It is here that I would like to highlight the ways in which menopause can also harm women’s self, going well beyond the issues of motherhood, beauty, youth or diseases. In some cases, having or keeping a disposition for sex really matters to women, an aspect that I thought was missing in the original article. As the author says, “the symptoms of menopause can include hot flushes, depression, aches and pains, insomnia, anxiety and transient memory loss”. Indeed, but what about the loss of libido? In the study conducted in a peripheric urban area of Sao Paulo I mentioned before, women don’t think something like the loss of libido justifies the time and effort they would have to invest in scheduling a medical consultation and the researchers argue that even if they do so, they wouldn’t find a professional willing to listen to their sexual complaints. Even among my informants, women face the loss of libido with resilience, as if it was something they would expect at this age, or as if it was something they are not supposed to resist. Beyond the benefits for the symptoms of menopause and related chronic diseases, maybe that is something HRT could also challenge: the lack of attention paid to desire and sex in latter years of life. Not because women ‘need’ it, but because some of them want it.

 

 

 

[i] The Economist (2019, December 12). Managing Menopause: Million of women are missing out on hormone replacement therapy. https://www.economist.com/international/2019/12/12/millions-of-women-are-missing-out-on-hormone-replacement-therapy

[ii] Brasília Branch Office. (2002, July 12). F. de São Paulo.

https://www1.folha.uol.com.br/fsp/cotidian/ff1207200215.htm

[iii] Lopes, Cristina Garcia (2007). Integralidade na Saúde da Mulher – A questão do Climatério. Fiocruz. Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro.

[iv] Handbook on Care of Woman in Menopause
Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Manual de Atenção à Mulher no Climatério/Menopausa / Ministério da Saúde, Secretaria de Atenção à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília : Editora do Ministério da Saúde, 2008. http://bvsms.saude.gov.br/bvs/publicacoes/manual_atencao_mulher_climaterio.pdf

[v] Costa, Gabriela Maria C, Gualda, Dulce Maria Rosa. 2008. Menopause Knowledge And Experience For A Group Of Women. Rev Esc Enferm USP, 42(1), 81-9.

[vi] Trench, Belkis, & Rosa, Tereza Etsuko da Costa. (2008). Menopausa, hormônios, envelhecimento: discursos de mulheres que vivem em um bairro na periferia da cidade de São Paulo, estado de São Paulo, Brasil. Revista Brasileira de Saúde Materno Infantil8(2), 207-216. https://dx.doi.org/10.1590/S1519-38292008000200008

[vii] Pereira, Cláudia; Penalva, Germano. 2012. “Mulher-madonna” e outras mulheres: um estudo antropológico sobre a juventude aos 50 anos. IN: Corpo, Envelhecimento e Felicidade. Org. Mirian Goldenber. Rio de Janeiro: Civilização Brasileira.

[viii] National Policy for Integral Attention to Women’s Health
MS (Ministério da Saúde/ Secretaria de Atenção à Saúde/ Departamento de Ações Programáticas Estratégicas), 2004. Política Nacional de Atenção Integral à Saúde da Mulher – Princípios e Diretrizes. Brasília: Ministério da Saúde.
http://bvsms.saude.gov.br/bvs/publicacoes/politica_nac_atencao_mulher.pdf

 

Female mutual support in Kyoto and Kampala — by Charlotte Hawkins & Laura Haapio-Kirk

charlotte.hawkins.1724 January 2019

Two of the ASSA fieldsites, Uganda representing the youngest population in the world, and Japan the oldest, have a surprising amount in common when it comes to the experiences of ageing, especially regarding the importance of female mutual support in mid-life and beyond. In this blog post we present how peer-support manifests in both fieldsites and look at how friendship is mediated both face-to-face and via the phone.

In the Uganda fieldsite, researcher Charlotte Hawkins attends the weekly meetings for an NGO for single mothers, many of whom are HIV positive. Here, they receive practical support for school fees, medicines, primary education and exercise training, but many also profess to attend due to the mutual support and belonging offered by the group.  This is an excerpt from an interview with the group Director and the Nurse:

Director: They feel they’re sisters

Nurse: Being together

M: Unity is good

Director: You have it, get friends, go back free

M: You can’t just finish your problems yourself

Director: Talking about problems, you learn that mine is the same…You can be happy when you’re sick, even when you know you’re going to die

These gatherings are always loud with laughter, music and dancing, showing how such sisterhood and ‘unity’ brings these women happiness, despite any problems they may face.

Maggie, a 67 year old Go-down resident, also feels happy when she discusses her problems with her friend Alice on the phone:

So when I’m tired of sleep, I wake up and pray Lord I call her, because it is 95%, I call her, I say eh Alice how are you… I told myself thank you God it’s great to hear from you, how are you? I become so happy, I say now I’m now sick, and Alice says Maggie, if you are to die who am I to talk to, we are only 2? [laughing]

The need to share problems in order to overcome them was also recognised by a woman in the rural Northern Ugandan field-site, who claimed to be over 100 years old. She said that stress comes from thinking too much about what you lack or have lost, which “can kill you, not only make you go mad”. The way she counters her own stress is by avoiding isolation. If she passes her life-long friends’ home (see photograph below) and she finds her door closed, she will always knock and find out why she’s indoors. She advises her to not be isolated, “don’t stay alone in the house”, and they share their problems.

In the Japanese case, middle-aged women have also expressed the importance of maintaining a circle of close female friends in order to receive emotional support. Our researcher in Japan, Laura Haapio-Kirk, has found that typically all-female friendship groups are often developed in mother’s groups, work places, or hobby groups, and can continue for decades even after the original shared activity has long ceased. Participating in girl’s night (joshikai) dinners and lunches, Laura has found that such meet-ups are commonplace particularly among middle-aged women. But between meet-ups these women typically stay in touch via the messaging app Line, and for many this can be a much-valued source of support.

At one lunch-time meet-up with such a group of friends in Kyoto, Keiko, aged 62, who works at a catering company and cares for her elderly mother explained:

 It’s really hard and sad to see your own mother and father deteriorate, especially if they get dementia. It’s like a tunnel without an ending. If you speak with your family about important matters, it gets more and more serious, darker. But if I have a particularly hard day with my mother…being able to reach out to someone right at that second when you need them is the best thing about smartphones, and receiving stickers that tell me ‘it’s okay!!’ is great.

 

Line stickers with messages such as “Goodnight”

In contrast with Kampala, in central Kyoto it is typical for neighbours to know each other by sight, but not to spend any real time with each other. Women in particular have emphasised the importance of staying connected through their smartphone to a support network of friends. However, the smartphone is typically seen as a tool for keeping offline friendships going, and for organising offline meetups, rather than having friendships which are purely online: “My smartphone itself is not a cure for loneliness, it is seeing people every day that makes me feel better.” However, as one ages and mobility becomes harder, or when illness strikes, the smartphone can provide a crucial connection to the world, as Megumi (58) who had been undergoing chemotherapy for six months explained:

Especially while I have been sick, the smartphone has become very important to me. It is my connection to the outside world. The days following chemotherapy my body feels drained and I cannot leave the house. During that time if I receive a Line message or sticker from my friend I feel uplifted.

 

A drawing by Megumi: “The smartphone connects me to the outside world”.

 

Whether two women are sat in a home in Kampala, or in a Kyoto café, the stories being shared are remarkably similar: about husbands who are inept at providing emotional or financial support, or about the latest development in one’s health prognosis. In sharing their problems with their friends, these Japanese and Ugandan women are ‘up-lifted’. In both Kyoto and Kampala, the laughter, emotional expression and mutual support that comes from face-to-face meet-ups is also possible to recreate over the phone, through morning phone calls or the use of stickers on Line messages; bridging physical distances and mediating offline and online friendship.