For Valerie Nicholson and the estimated 16,800 other women living with HIV in Canada, navigating the world of dating and intimacy after being diagnosed is an especially daunting task.
“I don’t know if I wanna get out there and date, I really don’t,” Nicholson says. “I wish somebody would find me.”
Valerie Nicholson is part of a research-based community-driven project called Life and Love after HIV. The project, led by Allison Carter — a health-science PhD student at Simon Fraser University — is dedicated to supporting healthy romantic relationships and sexuality for women living with HIV.
“A lot of the research around HIV-positive women centres around [transmission] risk and safe sex,” says Carter. “We want to give women hope that it’s not the end of your sex life when you’re diagnosed with HIV. You can still meet new people.”
Listen: Valerie Nicholson on getting involved with the Life and Love project (0’36”)[audio:https://thethunderbird.ca/files/2016/03/Valerie-1-1.mp3]
Women with HIV avoiding sex
HIV has changed from the infectious disease it once was, but society’s attitudes have yet to catch up. Thanks to advances in medicine, women with HIV can live longer and lead normal lives.
With consistent antiretroviral therapy, they can achieve an undetectable viral load, which means that the chances of spreading the virus to a sexual partner is approaching zero.
The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, in partnership with the SFU team, has been following 1,213 women living with HIV across Canada since 2013. So far, half of the women in the study have reported being sexually inactive.
“So many women are saying that they just don’t have sex, and one of the reasons is they are so scared to disclose their status,” says Angela Kaida, the principal investigator for the cohort study. “It’s a legitimate fear because there’s a lot of violence that women experience when they disclose. There’s a lot of judgement, discrimination, [and] a lot of relationships that don’t continue.”
Listen: Valerie Nicholson sharing her first disclosure experience (2’06”)[audio:https://thethunderbird.ca/files/2016/03/Valerie-2-1.mp3]
The study found that women who were sexually inactive also reported higher HIV-related stigma in society, suggesting that stigma plays an important role in the sexual decision-making of women with HIV, despite good treatment outcomes.
According to Kaida, sexual inactivity among HIV-infected women is much higher than among both uninfected women and HIV-infected men. People with HIV face a kind of double stigma. First, they are judged by the public. Then, they are discriminated against by the legal system.
Listen: Valerie Nicholson on moving beyond stigma (0’34”)[audio:https://thethunderbird.ca/files/2016/04/Valerie-6.mp3]
Criminalization of HIV non-disclosure
In Canada, people with HIV can be charged with aggravated sexual assault and registered as sex offenders if they do not reveal their HIV status to a partner before sexual activity that poses a “realistic possibility” of HIV transmission.
Aggravated sexual assault is one of the most severe offences in the Criminal Code. It often involves the use of a weapon and, in this case, that weapon is HIV, says Kaida.
People living with HIV are only safe from being charged if they use a condom and have a low viral load.
“The law is about exposure, not about transmission,” says Carter. “As long as you’ve exposed somebody to HIV, that’s where the charge lies.”
When someone doesn’t disclose his or her status, it violates consent under the law because the sexual partner might have decided against sex had they known the other person was HIV-positive.
SFU PhD student Sophie Patterson – whose research focus is on HIV criminalization – says that the law leaves women vulnerable to false allegations. Some women resort to having their partner sign a consent form before sex, to ensure there is documented evidence of disclosure.
“If a disgruntled partner comes back years later and accuses you of not disclosing your status, it’s a he-said she–said scenario, so they’re trying desperately to find ways to protect themselves,” she says.
Listen: Valerie Nicholson sharing her fear over being accused by an ex-boyfriend (1’08”)[audio:https://thethunderbird.ca/files/2016/03/Valerie-3-1.mp3]
According to Patterson, 25 per cent of people living with HIV in Canada don’t know that they are HIV-positive.
“People are fearful of getting tested,” she says. “It’s like ‘Well, if I don’t get tested, I won’t know I’m HIV positive and, if I don’t know I’m positive, I won’t get charged for not disclosing.’”
Women with HIV also worry that their doctors and nurses might pass on information to the police or lawyers about their health status. This affects the type of information they share with healthcare providers, which can impact the quality of care they receive.
Listen: Valerie Nicholson on how the Life and Love website will be an important resource (1’42”)[audio:https://thethunderbird.ca/files/2016/03/Valerie-4-1.mp3]
Life and Love after HIV offers hope
With much of the sexual lives of HIV-positive women under clinical, legal, and social surveillance, the Life and Love after HIV project is keen to create a platform that’s sex-positive and empowering for women living with HIV.
Of the other half of the positive women in the study who were sexually active and satisfied, 64 per cent reported that their partner was HIV-negative, showing that dating can be normal for women with HIV.
The team hopes to launch its website http://lifeandloveafterhiv.ca/ by the end of the year. Some of its features will include a research blog condensing the latest research on sexuality and relationships, testimonials from positive women living and thriving with HIV-negative partners, and opportunities for people to ask their burning questions anonymously.
It will be a key resource not only for positive women, but also their partners, healthcare providers, and the general public.
“We need to remember that women living with HIV are just that: they’re women — living with HIV,” Kaida says. “They still have sexual desire [and] sexual agency, and they deserve romantic lives, especially since the science is showing it’s so possible.
“What it means to be a positive woman shouldn’t be a big deal.”
Listen: Valerie Nicholson’s words of encouragement for women living with HIV (0’13”)[audio:https://thethunderbird.ca/files/2016/03/Valerie5-1-1.mp3]