Pleasure, in its broadest sense, encompasses joy, delight, happiness, and is strongly linked to individual and collective wellbeing. We can experience pleasure via all our senses, and some people even see pleasure as a practice: an ongoing effort to deepen our ability to experience pleasure. But, as perhaps you have done so yourself, many of us gravitate to a default meaning of pleasure as sexual enjoyment and fulfilment. Sexual pleasure is a complex, contested and multifaceted topic, which, as with sexuality more broadly, is often ignored, maligned, censored and censured. I’ve been grappling with the notion of pleasure over the last few weeks, seeing where it features (and often where it doesn’t feature) in the social health and medical humanities literature, so here I will share some of my initial findings. I’ll start with a definition of pleasure, trace its sociocultural history as it pertains to my research, examine its presence (or lack thereof) in the literature, and explore how its omission impacts sexual health and wellbeing in cancer survivorship.
I found several definitions of sexual pleasure, the most useful were in the literature around sexual health and sexual rights. In recent years, sexual rights activists have placed an increasing focus on pleasure, and some specific definitions have emerged. In 2008, the World Association for Sexual Health put forward a draft definition, and in 2015, the Global Advisory Board for Sexual Health and Wellbeing (GAB) built on this, to propose the following working definition:
“Sexual pleasure is the physical and/or psychological satisfaction and enjoyment derived from solitary or shared erotic experiences, including thoughts, dreams and autoeroticism.
Self-determination, consent, safety, privacy, confidence and the ability to communicate and negotiate sexual relations are key enabling factors for pleasure to contribute to sexual health and wellbeing. Sexual pleasure should be exercised within the context of sexual rights, particularly the rights to equality and nondiscrimination, autonomy and bodily integrity, the right to the highest attainable standard of health and freedom of expression. The experiences of human sexual pleasure are diverse and sexual rights ensure that pleasure is a positive experience for all concerned and not obtained by violating other people’s human rights and wellbeing.” (GAB, 2016)
I like this definition because it draws attention to the importance of consent. An individual’s right to pleasure shouldn’t be at the expense of another person’s safety or wellbeing. And it also acknowledges that what we each find pleasurable will be different, and that we shouldn’t necessarily judge someone else’s appetites.
Pleasure, and the way it is experienced, is a fundamental part of how we view, create and shape ourselves as human beings. Think about when you meet someone new: you ask them what their favourite food is, what they prefer to do on the weekend. We write about what we love on our dating profiles; we share it on social media. What brings people pleasure forms a key part of themselves as a person. Philosophers have conceptualised pleasure in various different ways, from ‘Epicurean’ (a life of pleasurable serenity which was considered dangerously irreligious and selfish) to ‘hedonistic’ (often self-defeating). Some even think that our whole lives are lived in pursuit of pleasure, that it’s the single thing which drives us. So, given that it’s been widely understood that pleasure is central to being a human, it is somewhat curious how silenced pleasure is and has been throughout history.
I think that this problem with pleasure has a lot to do with something else I’ve talked about a lot here: the idea of mind/body dualism, and the way it has formed the foundation of so much philosophical thought. Western philosophy has commonly depicted the body as animalistic, with uncontrollable appetites. For Plato, for example, the body is deceptive; its passions constantly tricking us, distracting us from the important work of the mind. Augustine, articulating an evolving Christian theology, placed the soul hierarchically above the body, and warned that the animalistic side of nature drives us towards sin, and needs taming. Later, Descartes solidified his argument that the conscious thinking self is separate from the physical self: the body. The constant theme running through this thinking is that the body is distinct from the ‘true self’, and in many ways constantly undermines or threatens to sabotage that self. Physical instincts or appetites, including for pleasure, must therefore be controlled or supressed to prevent them from taking over the self.
Organised religion, in particular the Catholic Church, reinforced these negative beliefs about sexual pleasure, deeming it sinful in all instances other than for procreation within marriage. This thread continues to run through the Renaissance and Reformation, through Puritanism and Victorian obscenity laws. Sexuality also operated as a function of the State, to secure property inheritance down aristocratic blood lines while simultaneously supplying a steady stream of working-class bodies to secure the operation and protection of the State and to maintain structures of power.
In parallel to this thinking, we have seen the increasing medicalisation of bodies, particularly women’s bodies, and the categorisation of sexuality and sexual function. By ‘medicalisation’ I mean the process by which certain aspects of human life become labelled and treated as medical conditions. Part of why this can be problematic is that it removes the power from the person whose body it is, and places it in the realm of medicine. Doctors become experts, and can tell you how your body ‘should’ function, what’s ‘wrong’ with it, and what you need to do to ‘correct’ it. Patients become decreasingly listened to, and doctors and the medical profession have increasing authority over people’s bodies. Historically, this has often meant women’s bodies, and medicine’s patriarchal roots have shaped norms about women’s sexuality, among many other things (think about ‘hysteria’ as a diagnostic label, for example). Medicine, psychiatry, and psychoanalytic theory have defined ‘normal sexual behaviour’, labelling sexual practices and desires outside of the monogamous, heterosexual, procreative union as deviant, perverse, unhealthy, disordered.
But where does pleasure feature in this classification of sexuality? One of the key critiques of the medicalisation of sexuality is its reduction of sexuality to a mere function of the body, using mind/body dualistic beliefs to separate sexual function as it occurs in the body from any kind of psychosocial, cultural or relationship factors at play. In an attempt to prove themselves scientifically ‘valid’, some studies even artificially separate the biological from the psychosocial in their analysis of sexual dysfunction, in my mind a bit like keeping flour and water separate and expecting to still somehow bake bread! There are also many social norms which surround female sexuality, where pleasure is seen as an ‘entitlement’, an ‘obligation’, and sometimes an expectation as part of a ‘normal’ sexual encounter. Sometimes it’s hard to tell the difference between ‘authentic’ bodily urges and social expectations. And we have all seen how sexuality has become commodified by consumerism/advertising. Pleasure has become tangled up with this commodification.
This medicalised emphasis on sexual function (as opposed to sexual pleasure or wellbeing) can also be seen in the literature around public health and sex education, where there have been several (largely unheeded) calls for a greater attention to pleasure. In the 90s, reproductive health activists critiqued the way that sex was conceptualised as a sanitised, emotionally neutral act, and called for research and campaigns to include references to enjoyment as well as risk. Much research since then has echoed these calls, but often to no avail. In 2006, for example, a review in The Lancet pointed out that pleasure is still the missing element in public health campaigns around STIs and HIV/AIDS, as well as sex education in schools, despite evidence showing that campaigns which focus on negative elements such as risk of disease and death are far less effective in reducing disease transmission than those which acknowledge or focus specifically on pleasure. Attention to women’s pleasure is conspicuously absent in this research and public health campaigns. Only last year, a systematic review was carried out which indicated, once again, that public health interventions which emphasise pleasure are more likely to lead to behavioural change than those with a negative focus on risk, but that attention to pleasure is continually avoided in such programmes. It’s still so taboo!
This paints a picture of a public health field with a ‘pleasure deficit’, guided by troubling assumptions and lacking attention to the social and cultural dimensions of pleasure. When we move our focus to literature specifically on cancer and sexuality, we see these themes reflected, and perhaps even compounded.
Medical research in the cancer field has facilitated great strides forward in detection and treatment. Although it is now estimated that one in two people will develop a cancer in their lifetime, advances in detection, increased screening programmes and public health campaigns have led to the median age at diagnosis falling over recent decades. This earlier detection combined with advances in treatment are leading to an increase in those living 5 to 10 or more years after diagnosis. Cancer survivorship rates in the UK have doubled over the last 40 years, although rates for different cancers vary widely, (e.g. pancreatic cancer survival rates are pretty much the same as they were in the 70s, whereas prostate cancer is up by 60 percentage points). Researchers are, therefore, paying increasing attention to the longer term physical and emotional effects of cancer and its treatment, including the impact on sexuality.
This increase in focus on survivorship often centres around ‘quality of life’ (QOL), which is an inconsistently measured and defined concept. Some define it as a multi-dimensional interaction between domains of physical, psychological, social and spiritual wellbeing. Others point out that QOL isn’t simply an objective state, but is actually about the difference between expectation and reality. What do you expect your life to be like right now, and what is it actually like? We might meet two people with the same level of health, but with wildly different QOL scores because of their differing perception of this gap. There are a few different tools which claim to measure QOL, some of which are specific to cancer survivorship. However, inconsistency in measurement techniques mean that there are huge contradictions in the claims people make about QOL in cancer survivorship. Some claim that a cancer diagnosis decreases QOL. Others claim that it increases QOL because of the ways in which it changes people’s perceptions of their lives, and others say that there are differences in age (older people are more likely to have a positive shift in QOL whereas people diagnosed younger are more likely to have their expectations of life shattered). There isn’t really a concensus, which makes this research feel unreliable.
There are conflicting views about the relationship between sexuality and QOL. But whether it’s framed as sexual wellbeing, sexual health, sexual fulfilment or sexual problems, we generally see some acknowledgement of sexuality as contributing to overall QOL. However, studies consistently show that the impact on patients’ sexuality is the burden following cancer treatment which is least addressed or resolved, and is often felt to be the most distressing. And yet it remains the primary neglected area in the context of cancer care: a taboo subject for healthcare professionals. Those patients who do overcome their fears to address sexuality with their healthcare team often have their concerns dismissed as unimportant compared with the primary goal of treating the cancer.
When sexuality is addressed in a healthcare setting, it is framed almost exclusively as a physical or biological issue, with little regard for social, cultural or relational factors. There have been plenty of studies into sexuality post-cancer. Some assess various strategies to help survivors, others develop tools which can (they claim) predict how much someone will be affected sexually, others attempt to measure the impact on sexual selfhood in long term survivors. Overwhelmingly, the research focus has been narrow, viewing sexuality using heteronormative framings of sexual function, and taking for granted social norms about femininity and sexuality. For example, sexual function is measured by counting the number or frequency of Sexually Satisfying Events (SSEs); ‘sex’ is conceptualised solely as penis-in-vagina (PIV) intercourse; orgasm is unquestionably revered as the single most important goal. Many studies don’t bother to actually ask patients themselves what they count as a satisfying sexual experience, and pleasure is rarely mentioned.
There was one paper I read which literally made me snort with laughter. The authors were really well-meaning, but they totally got it wrong! They were critiquing the fact that so much research into female sexuality and cancer survivorship is conducted with heterosexual women, so thought they’d conduct a study with ‘Sexual Minority Women’ (basically, lesbians and bisexual women in relationships with women). However, they used all the standard measurements for women’s sexual function, including a tool which actually defines sex as “penile penetration of the vagina”. Erm, hello, your research is with queer women! (Facepalm)
Feminists are increasingly drawing attention to the problems with these narrow models of sexual health, encouraging people to instead listen to women, ask them directly about their embodied experiences, and their own accounts of sexual enjoyment and pleasure. Anthropologist Ana Porroche-Escudero paints a picture of women’s sexuality which highlights how complex and individual it is. She writes about the ‘invisible scars’ of breast cancer: the psychological side effects and the way women’s voices are often silenced by the norms of medicine and the assumptions researchers and healthcare practitioners make. She urges researchers to create space for women to articulate their subjective ideas about sexual pleasure, no matter how taboo.
Similarly, feminist medical humanities scholar Emily Waples critiques the cliches about cancer survivorship stories, claiming that these ‘journeys’ are not only those from diagnosis to survival, or to reclaiming health, but that they often paint a picture of heteronormative femininity, eg the ‘crazy sexy cancer’ survivor. There’s also an assumption that everyone survives, which silences the realities of metastatic cancer, pain, and death. Psychologist Sara McClelland points out that a cancer diagnosis doesn’t somehow cure a woman of the social and cultural expectations around femininity and sexuality, and that the research into sexuality after a cancer diagnosis often reproduces sexist and heterosexist expectations of women and their bodies.
Professor Jane Ussher and her team at Western Sydney University (whose research I love!) point out that the experience of sexuality following a cancer diagnosis is full of meaning around cultural perceptions of illness, femininity and (hetero)sexuality, but that much of this meaning is lost when researchers focus solely on the body and a narrow, patriarchal view of its function. They coined the term the ‘coital imperative’, which they critique as the way so much of this research and healthcare provision is in service of PIV sex, rather than focusing on sexual wellbeing, intimacy, and how people actually feel about their sexual selves.
All this is to say that I believe we must continue to advocate for the inclusion of pleasure in this work. Healthy sexuality is about more than merely absence of disease. Sexual pleasure has been shown to be an integral component of psychological wellbeing and is a significant contributing factor to quality of life. But we need to challenge assumptions about the measures and goals of sexual activity which are currently used. A recent study into sexual function in cancer patients (which actually listened to the patients themselves) showed that participants viewed simple affectionate behaviour such as hugging and kissing in the same league as activities involving the genitals. Another piece of research into the neuroscience of pain has shown that holding your partner’s hand actually reduces your experiences of pain. There are also indications that sexual intimacy makes the experience of cancer more manageable and assists in the recovery process. So if we see these simple physical acts as bringing patients pleasure, think about the potential healing or pain-relief benefits this could bring, rather than simply driving people to a functional goal they might not necessarily be interested in attaining. If we focus on patients’ own descriptions of the opinions and motives behind the sexual activity they seek, and pay attention to the language used by both researchers and participants, I think we will start to create more useful research which centres pleasure and enjoyment as indicators of success. The challenge I think will be to gather accounts of people’s lived experience while simultaneously critiquing social and cultural norms which influence, and largely govern, embodied sexual wellbeing. This work has begun, and has the potential to significantly improving health and wellbeing outcomes for those recovering from cancer and its treatments, while in the meantime rescuing pleasure from its languishing position as a sociocultural taboo.
(I’ve listed some references below which I read while researching this article. Do let me know if there are key texts that are missing, or researchers you think I should read who are doing interesting work in this area.)
References
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