As International Women’s Day approaches, I believe now, more than ever, we have an opportunity to make a positive difference in sexual health and rights for women living with HIV.
Limited erotic possibilities
Sex lives with HIV can vary dramatically from woman to woman. But there are also some common themes.
In her powerful essay, Desires Denied, HIV and women’s health advocate Alice Welbourn describes how societal forces — such as HIV stigma, stereotypes and the threat of criminal penalty — limit the erotic possibilities available to women living with HIV.
This can often lead women to feel pressured to relinquish sex and sexuality as a positive part of their lives, regardless of their own desires. Welbourn compares this forced asexuality to forced sex, describing them as the “opposite sides of the same coin.”
In what might initially appear to be disparate experiences, both involve the violation of women’s fundamental rights to bodily integrity and autonomy.
Discourses of risk and stigma
Whether sexually active or not, women may experience various changes to their sexual health and sexuality after learning their status.
The research tells us that, depending on the woman, these changes may be physical — such as difficulties engaging in sex, for example.
Often, though, women experience tremendous emotional changes in the way they experience and express themselves sexually. For instance, some women may come to view themselves as blameworthy, contaminated or contagious (or all three), mainly because of enduring discourses of risk and stigma.
This is despite a wave of new research showing that a person with HIV on treatment with an undetectable viral load cannot transmit HIV sexually.
While treatment is essential, it can also change the way women look and feel about their bodies, especially in a cultural context of incessant fixation on, and criticism of, female bodies.
A period of grief and mourning
The overall impact on women’s sexual well-being can be significant: Women with HIV who feel worse about their bodies have lower sexual desire, arousal, orgasm and more.
Other sexual concerns that people rarely talk about include diminished interest in sex, disappointment over what can feel like reduced sexual freedom and spontaneity and the struggles of finding a loving and caring partner (or even flirting with others because of gendered expectations of sex).
Many women describe these challenges as a “loss” to their sexuality and move through a process of grief and mourning before adapting to a new sex life.
What contributes to changes in women’s sexual functioning, feelings, and behaviour after diagnosis? According to a 2017 review of 32 studies, medical factors are the least likely culprits.
Instead, findings point to social oppression, with important links found between several aspects of sexuality and stigma, violence, poverty and depression, among other social stressors.
Destigmatizing sex with HIV
The question, then, is this: How do we support women to navigate these emotional and/or physical sexual changes? Or, better yet, how do we prevent them from happening in the first place?
Given society’s role in fuelling stigma and trauma, we believe the most powerful prevention strategy involves decriminalizing and destigmatizing sexuality with HIV, and stopping the mistreatment and violence against women living with the virus.
These initiatives also push back against the replication of harmful cultural messaging, which advises society at large to be alarmist about HIV.
Fulfilling sex, for health
A fulfilling sex life with HIV matters. And what matters most is ensuring that women have the right to choose to have sex or not to have sex. Women get to define what a “fulfilling” sex life is to them.
But if women living with HIV want to date and have sex — awesome.
It’s also important that we promote safe social environments and healthy relationships so that HIV is not a source of fear or stigma and women can have not just any sex, but pleasurable sex.
A focus on pleasure may not only buffer against negative outcomes, but it may also contribute to positive outcomes across multiple dimensions of sexual health.
For example, studies have shown that women who masturbate or use vibrators are more likely to report health-promoting behaviours, such as gynecological exams and positive communication with partners.
We encourage doctors to talk to their female patients about sexual health beyond preventing HIV/STI transmission and unwanted pregnancy.
Counselling regarding emotional and psychological aspects of sexuality, including sexual enjoyment, is essential.
Increased research attention must be paid to how women positively renegotiate and reconstruct a fulfilling sexual life after diagnosis, despite multiple threats to its loss.