“I went through a long period, seems like ancient history now, but I remember when I was first diagnosed, I felt so dirty. Like everything about me was, I suppose, unsafe and unclean and my blood was just full of crap. Just the whole thing was very internalized…. For the most part now, I feel lovable. I feel good about myself. I just feel like I’ve still got a lot to offer and give and that I can be part of a strong, healthy relationship, despite the difficulties, I suppose.”
This quote from a woman living with HIV shows just how devastating an impact the HIV diagnosis can have on women’s sexual well-being.
It comes from the Straightpoz study in Australia — one of very few studies internationally focused on understanding the intersection of sexuality, gender and HIV.
I am a PhD candidate and HIV-negative ally conducting sex-positive research with women living with HIV in Canada. 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.
To do this, we need supportive social conditions in which women’s sexual needs and desires are not only respected but embraced.
Although we pay most attention to preventing the transmission of HIV to intimate partners, women’s sexual concerns go far beyond condom use.
We need to talk about the sexual changes they experience and how these individual vulnerabilities are linked to structural inequalities.
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.
In the book Eve Was Framed, British lawyer Helena Kennedy writes of “an invasion of the parts of a woman’s body preserved for chosen intimacy, for communication of her deepest feelings, for pleasure of a deep and exquisite kind, for the creation of life.”
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 asdifficulties 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.
Initiatives such as Love Positive Women, Undetectable=Untransmittable and Révélation, to name a few, have been supporting women living with HIV around the world in taking back their right to be loved and celebrated.
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.
It’s perfectly normal to not have sex and to not want to have sex. In fact, research shows that many women living with HIV in Canada (25 per cent to be exact) have a satisfying sex life without sex.
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.
The science of pleasure
We encourage doctors to talk to their female patients about sexual health beyond preventing HIV/STI transmission and unwanted pregnancy.
Women frequently report that pamphlets on how to use condoms are all the information provided.
Counselling regarding emotional and psychological aspects of sexuality, including sexual enjoyment, is essential.
So too is research on this topic. Very few studies of women living with HIV have focused on the science of pleasure.
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.
How to support this movement
There are several ways everyone can support this movement:
Learn the scientific facts about HIV transmission.
Consider how stigma operates in everyday lives and interactions.
Pledge to be an ally to women and speak out against abuse, harassment and inequality.
Support the Canadian Coalition to Reform HIV Criminalization.
Donate to organizations, social groups and networks focused on sex-positive change.
Join the Life and Love with HIV community (a website launching soon to de-stigmatize sexuality and relationships with HIV by shifting the focus from risk to pleasure).
If you are a woman living with HIV, the Life and Love with HIV community is also looking for writers.
Only by elevating HIV-positive women’s sexual pleasure to a higher status can we truly support their access to full sexual health and rights.
A version of this article was originally published by CATIE, Canada’s source for HIV and hepatitis C information and was co-authored with Jessica Whitbread and Angela Kaida.