The lasting stigma of being HIV-positive

"In three years, I’ll have lived longer with it than without it. If they find a cure while I’m still alive, I think I’ll be in for an identity crisis." Today Kanevsky gives lectures to teens.

MIRI KANEVSKY: ‘My hope is that people who read my book will be inspired to carry on despite the difficulties they face.’ (photo credit: DVORA ORBACH)
MIRI KANEVSKY: ‘My hope is that people who read my book will be inspired to carry on despite the difficulties they face.’
(photo credit: DVORA ORBACH)
When Miri Kanevsky tells people she’s HIV-positive, their most common reaction is, “Wow, you don’t look like it.” And many people follow up with the question, “But people aren’t dying from HIV anymore, right?”
“There was a time when I’d be really insulted from that question,” Kanevsky admits. “But nowadays it just amuses me, and I can nod my head and watch as the person in front of me internalizes this information. Many times I can see a person’s heart opening, and then we can have a candid conversation. People share private experiences with me that they probably wouldn’t have shared with other strangers. My openness about my status makes them feel safe enough to share their secrets with me, too.”
Kanevsky story began when she was 17. She had met a charismatic foreign worker who stole her heart and told her that, together, the two of them were actors in one of the great love stories of all times – a story that crossed over cultures and continents.
Unfortunately, their love connection also involved the premeditated transference of the HIV virus. After having her heart broken, Kanevsky found out that she hadn’t been the only victim in this drama, and that the culprit had infected a number of other women, too. As Kanevsky set out to save herself, she simultaneously set out to have the offender convicted and locked away in prison for many years.
For 16 years, Kanevsky kept her status a secret. Now, she has published a novel called Positive. The book is centered on a barren woman, a new immigrant to Israel from Russia in the 1990s, who is searching for love. Kanevsky’s main motivation for writing the novel was to free herself from the weight of keeping her secret.
“When I was writing the book, I felt like I was sitting and having a deep conversation with a close friend. It was my way of clearing my mind and explaining to myself what the hell happened to me,” she explains.
The more Kanevsky improved emotionally by writing, the more motivated she became to help others. “It was really important for me to share with others my life as a person who lives with HIV. I wanted to break the stigma and show people that it’s okay to be open about the fact that I’m HIV-positive. I waited too long and ignored the red lights. It was important to me to bring to light the plight I and others from the former Soviet Union suffered when we had to grow up overnight.
“I want to give hope to other people who are stuck in similar situations. I was lucky that I found the strength to stand up and push forward with my life. My hope is that people who read my book will be inspired to carry on, despite the difficulties they face. Many people who’ve read my book told me that my words really helped them.”
Kanevsky gives lectures to teens and adults, and treats clients in her private clinic to help them live fuller lives. “When people hear my story,” Kanevsky shares, “I see a spark light up in their eyes. Suddenly, they realize it’s okay for them to relax and just be themselves. It’s as if they’re saying to themselves, ‘If this woman in front of me who has AIDS is openly telling us about herself, then what do I have to be ashamed about?’ Since I began my crowdfunding campaign a year ago to raise funds for my book, dozens of people I don’t know have shared their stories with me. And each time I am overwhelmed with emotion.”
Do you ever wonder what your life would have been like had you never met the man who infected you?
“No, not really. So many years have passed since then. I can’t really imagine what it would be like to live as someone who’s not HIV-positive. In three years, I’ll have lived longer with it than without it. Pretty unbelievable. If they find a cure while I’m still alive, I think I’ll be in for a serious identity crisis. I certainly don’t think I would have become a lawyer. But I do think I still might have written a book. I’ve loved writing since I was a girl. When I was 11, I wrote and illustrated a 200-page adventure.”
Kanevsky began writing about her struggles in 2004, two years after she became infected, and before she found out that the offender had in fact been aware during their relationship that he was HIV-positive.
“At the time, I felt like my relationship with him was something out of a Hollywood movie,” Kanevsky recalls. “I was young and naïve and in love with a charismatic man. I helped him escape from the police using rental cars and hotel rooms. I thought people would love such a story. Having Miri, the protagonist of the story, get infected at the age of 19 from a man who knew he was HIV-positive was too much to bear. This is still the hardest detail for me to reveal when I’m lecturing in front of a group. But I overcome my discomfort and pain and deal with this detail head-on, because it’s such an important part of emotional violence in relationships.”
One of biggest dilemmas Kanevsky encountered during the writing process was how much to reveal regarding her relationship with her mother.
“When I was an adolescent, I had an incredible amount of anger toward her,” Kanevsky divulges. “I felt like she didn’t really see me. She was always comparing me to the daughters of friends of hers who were super successful. She made me give up on every bit of enjoyment and all my free time so that I could study and get better grades. I guess my secret relationship was a refuge from the prison I felt like my home had become. My mother did the best she could as a new immigrant from Russia, and so I went to great lengths to try not to offend her in my book.”
For more than a decade, Kanevsky would write and then erase what she had written. In the meantime, she completed her law degree, got married, went on a trek in South America for a few months, and then found a job as a lawyer. When she completed the book in 2013, she was still not ready to open up publicly about her HIV status. She had only told her mother, father, husband and a handful of close friends.
“I always thought that by the time I finished writing my book, I would have gathered enough courage to reveal to the world that I was HIV-positive,” Kanevsky admits. “But when that moment arrived, I was still just as scared as I’d always been. Then my husband died of unrelated causes, and my manuscript sat in a drawer for another four years, completely forgotten, until 2017, when I decided the time had come to stop being scared and ashamed. I started the crowdfunding campaign and publicly revealed my HIV status. I don’t really have any anecdote about some life-altering event that took place and made me finally gather the courage. I just finally made the decision one day that I deserve to live a life of fulfillment, freedom and love.”
FROM 1981 through 2017, 9,953 cases of AIDS or HIV were reported in Israel, according to the Israel AIDS Task Force. And according to the Health Ministry, 8,874 people in Israel are currently HIV-positive.
Have Israelis’ attitudes toward AIDS changed over the years?
“Yes,” Kanevsky maintains, “but in my opinion not enough. They’ve inundated us with ads about always using a condom, and that we shouldn’t sleep with our friend’s girlfriend’s boyfriend because one of them might be infected. Fear has been hammered into our brains, but no one has bothered to inform the public about all the research that has been done, and the treatments that are available. People have heard that HIV-positive individuals are no longer dying from the disease, but it’s still not socially acceptable to talk about it.
“In fact,” she continues, “most people who are HIV-positive don’t even tell their closest family members. I myself kept my status secret from my parents for an entire year. The stigma that was created in the 1990s has not been broken. There’s no reason people with HIV shouldn’t be able to share this information with their loved ones the same way someone with cancer can. This is why I decided to go public and why I’m always giving lectures. I feel like it’s my responsibility to teach the public about HIV and AIDS.”
What do people generally not know about AIDS?
“The most important bit of information is about the undetectable viral load. This means that if the virus cannot be detected, then you can’t transmit it even during unprotected sexual relations. This also means that a woman whose viral load is undetectable won’t pass it on to her children during childbirth.”
What has your own personal timeline looked like?
“I suffered for years from self-hate. This improved as I worked on myself, and I am much more accepting of myself now. When I found out I was HIV-positive in 2002, I used to look at myself in the mirror and feel like I could see the poisoned blood flowing through my veins. I hated myself, my body and everything connected with sex. I’m sad that I had to experience so much self-hate for so many years.
“People are supposed to be so happy when they’re in their 20s, since it’s a time of new experiences, developing and learning who you are. That’s not to say I didn’t have any good moments, but I always felt like I had this incredibly heavy burden around my neck, which was a product of the social stigma. With lots of professional help, I was able to slowly remove this weight and begin loving myself, my femininity and my sexuality once again. I stopped blaming myself for what happened, and I finally made the decision to make a real change.”
When the undetectable viral load was officially accepted in 2016, this brought about a significant change in perspective. “But as much as many of us were happy, we were also completely overwhelmed,” Kanevsky explains. “Imagine that suddenly, after 14 years of having been extremely careful around people, and always having very protected sex so as not to infect your partner, your doctor tells you, ‘You don’t need to use a condom anymore and you’re not contagious.’ It’s very scary. When my husband got sick, the first thing I did was go to Tel Hashomer to check if my levels were still undetectable.”
Translated by Hannah Hochner.