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Researchers work to normalize sex and intimacy for women living with HIV

Almost half of the women living with HIV in Canada aren’t in relationships — a fact caused in part by stigma and misinformed perceptions of what it means to live with the disease.

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“This is not cancer, and nobody’s ever going to make it a pretty disease,” says one Vancouver woman living with HIV. The woman shared her feelings of hopelessness with Simon Fraser University researcher Allison Carter. “Twenty years ago maybe we thought that there was some hope. There is no hope. This will always have a stigma…”

Carter says that the pained words of this woman — who for obvious reasons opted to stay anonymous — drive her in her work to challenge misinformed public perceptions of HIV-positive women. Carter is not your typical HIV/AIDS researcher — she has a fresh, unusual agenda. While other researchers have focused on public health issues, such as prevention, Carter focuses on happiness and pleasure, with the hope that her research on HIV will help women with the disease have fulfilling sexual relationships.

“All too often, disclosure of one’s HIV status can result in insults and rejection. This makes it really hard for women (and men) with HIV to find love and many continue to live in silence and isolation,” she tells SheKnows.

Carter chose to focus on HIV-positive women because they’ve been historically underrepresented in studies on people living with the disease. Using the data of 1,425 Canadian women collected over time by the Canadian HIV Women’s Sexual and Reproductive Health Cohort, Carter found that only 22 percent of HIV-positive women are in long-term happy sexual relationships. While their happiness should be celebrated, she hopes to see an increase in the numbers of women living with HIV in fulfilling relationships.

Though medical advances may make the disease manageable, people living with HIV in Canada find that it’s the stigma — more than the disease itself — that can hurt the most. In a study of Canadians’ attitudes about HIV/AIDS, 22 percent of respondents admitted to stigmatizing people with HIV/AIDS a “moderate” amount — a number that is probably a lot higher in reality, as it only includes people who actually admit to having negative views of people with HIV/AIDS.

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Carter says the stigma Canadian women living with the disease face “stems from a number of factors, including research, cultural and media representations of people with HIV as ‘dirty,’ ‘diseased’ and ‘criminal.’ As a result, many times the public view is uncompassionate and misinformed.”

But she’s working hard to re-educate the public about the disease and help HIV-positive women have better sex lives: “All women, including those living with HIV, are deserving of fulfilling, pleasurable (and safe) sexual experiences and relationships.” Plus, with medical advances, your risk of contracting HIV from your partner can be practically eliminated, if medications are taken correctly.

“The advances in HIV treatment have been phenomenal,” Carter explains. “People living with HIV who are on treatment have an undetectable viral load, meaning the virus in the blood is so low that our current technology is unable to even detect it. Research unequivocally shows that with an undetectable viral load, the chance of transmitting HIV is almost zero.” Of course risks can’t be wiped out completely, so she encourages anyone considering having sex with an HIV-positive partner to talk to their doctor about how best to manage treatment.

Carter points out that while some women have come to terms with their diagnosis, several haven’t: “It truly saddens me to know that there are some women who, in 2016, are living in total silence. These are women who have never spoken the word ‘HIV’ aloud or haven’t told a single person that they are living with the virus.”

Carter is building a website to help educate the public about HIV, and says that her biggest hope is that her research will “help foster more understanding, acceptance and compassion towards women with HIV, so that the next time a woman discloses she’s met with a second date!”

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