This article previously appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
I never went for an HIV test. All I wanted that day back in 1995 was to donate blood to the Red Cross. Instead, a week later I received the diagnosis from my doctor. I was shocked: “HIV? What are you talking about? I’m a lesbian! Lesbians don’t get HIV!!” Well, as I learned, some of us do.
At first, I was completely baffled as I had been in a monogamous relationship for seven years (my partner tested negative shortly afterwards). I racked my brain to try to make sense of it: Was it that blood product I had received in Lesotho, Africa, in the 1980s? Or the one time I had sex with a man while there? Ultimately, how I got it doesn’t matter; it was what it was and I had to accept it.
Today, at age 50, after nearly two decades of life with HIV, I feel strong, optimistic and more anchored than perhaps ever before. But it hasn’t always been this way. I’ve worked hard to get where I am since that day when HIV first pulled my life off-course, sending me downstream into unknown waters.
The first few years following my diagnosis were about keeping my head above water as my CD4 count hit rock bottom and my health declined quickly. I developed MAC (Mycobacterium avium complex, a life-threatening infection that can affect people with severely suppressed immune systems) and severe wasting syndrome, which resulted in a feeding tube to my stomach that may well have saved my life.
Right from the start, I felt an urgent need for support from other people living with HIV. The HIV-positive gay men’s community in Vancouver welcomed me with open arms. Back then I often felt more kinship with my queer poz brothers than with the predominantly straight community of HIV-positive women. Although that support was invaluable, I still often felt alone. Queer women were few and far between in the HIV community and I was the only woman with HIV I knew in my own lesbian circle, so I didn’t feel completely at home in either.
In 1997, once I was well enough, I travelled to a women’s HIV retreat near San Francisco, where I happily met at least a dozen dykes with HIV. This was important in those early days to affirm my identity as an HIV-positive lesbian. Today my community of support has evolved into a rich blend of wonderful people from all orientations and backgrounds. Support from others living with HIV has been key to helping me cope and feel more anchored.
But following my diagnosis back in ’95, I was anything but anchored. Anxiety burst to the surface and I was engulfed by fear. I had trouble sleeping, eating and focusing. And then there were the panic attacks. My anxiety was about more than HIV. Some of it stemmed from long ago. When I was four years old, my brothers and I experienced the sudden violent death of both of our parents. My deep grief has been a part of my emotional fabric ever since. It became lodged within me and I have had to continually find healthy ways to address it.
I’ve come to realize that—contrary to the old adage—time does not heal all. The passing of time definitely helps, but I have had to continually work hard to overcome anxiety and maintain a sense that I can handle what may come my way. For years, this sense of confidence was elusive, or tentative at best. The idea of losing grasp of my ability to cope still terrifies me, but I’m finally learning to trust myself.
"I learned firsthand that it’s not just what happens to us that counts but also, and perhaps even more importantly our response to what happens."
The anxiety brought on by HIV propelled me to do much healing work. Along with therapy, spending time in nature, doing yoga, reiki and meditation have all helped me immensely. I learned firsthand that it’s not just what happens to us that counts but also, and perhaps even more importantly our response to what happens.
I wouldn’t go so far to say that HIV has been a gift, but the healing and lessons I have received certainly are. Ironically, in order to feel grounded, I’ve learned that I need to feel OK letting go and accepting life’s uncertainties. So I strive to go with the flow and accept that I can’t always control what will happen next.
As my overall health improved, I began venturing outside the comfort zone of the HIV community more often and increasingly found myself in situations where I had to decide if and how to disclose my HIV status to others.
A few years ago, when I was single for the first time since being diagnosed and was considering dating, I asked my friend Eve hypothetically if she would ever date a woman who is HIV positive. In her brutally blunt way, she quickly said no.
“Why not?!” I shrieked. “Worried you’ll get it?”
“No, because I want to grow old with someone.” At first I felt discouraged and deflated, but I quickly realized that was ridiculous. For starters, with proper treatment, people with HIV can, and do, grow old. Plus, how could Eve ever know for sure how long she or anyone else would live?
So I forged ahead and tried online dating. I struggled with knowing when to disclose my status. In my personal ad? No. When emailing back and forth? No. During the first coffee date? No. On our second date, when walking around the Seawall? That didn’t feel right either. It seemed there was never a good time to disclose.
A wise friend said, “Kath, you want to find someone who sees HIV as an asset, not a strike against you.” That seemed like a stretch, but how about someone who completely accepts it? Someone who sees HIV as a challenge I have met, that has strengthened me. I had the simple yet powerful realization that if someone doesn’t want to be with me because I’m HIV positive, they are clearly not the one for me. HIV would help weed them out!
Ultimately, I had great success in my quest for love and I have been happily partnered for the past two years. Ironically, I didn’t need to disclose my status to Laura, who has worked in the HIV field for many years and already knew my status. A mutual friend who thought we would be a good match set us up on a date, and the rest is history. We now have plans to share a home.
I no longer need to worry about how to disclose my status to a prospective partner, but figuring out if and how I want to tell people I meet in my day-to-day life still occasionally poses a challenge. The typical small-talk question “what do you do?” can catch me off guard. I don’t have a stock answer like “nurse” or “bus driver.” And I don’t like the sound of “I’m on long-term disability” because it doesn’t reflect my life. So I refer to some aspect of my vibrant volunteer career instead: “I do HIV community-based research.”
"Whether I disclose or not, I try to remember my mantra: “What others think of me is none of my business.” "
If the person I’m talking to probes further (“how did you get into that?”), I never know what’s going to come out of my mouth. Sometimes it’s full and confident disclosure: “I’m very well qualified. In fact, I’m HIV positive.” Or, if I’m feeling cheeky: “Well, you see, I have a touch of AIDS.” Other times, for whatever reason, I want nothing more than to change the subject: “Isn’t this chipotle bean dip incredible?”
Whether I disclose or not, I try to remember my mantra: “What others think of me is none of my business.”
In addition to figuring out disclosure, seeking the support of fellow PHAs and benefitting from the many wonderful services out there, an invaluable anchor has been my active engagement in the HIV community. Not long after I was diagnosed, I realized that I didn’t want to simply receive services, I wanted to help deliver them, too.
So I started facilitating HIV treatment workshops and teaching people leadership skills. Over the years, I have at times been overwhelmed by the opportunities that have piled up—requests to speak publicly, sit on committees, present at conferences and take paid jobs. Many of them pique my interest but I continually strive to maintain a balance between my volunteer work and self-care, keeping in mind that the latter is essential. Staying healthy with HIV is definitely about more than taking medication—it requires a commitment to putting my health at the top of the priority list. So now when someone calls to ask if I’d like to get involved in an exciting new project, I take a careful look at the stress/joy ratio before jumping in.
I’m currently involved with a community-based research project, the CHIWOS study, investigating the healthcare needs of women living with HIV in Canada. And I work with the Positive Leadership Development Institute, helping people with HIV explore their values, build community awareness and develop their skills. Witnessing participants gain confidence and ultimately step into leadership roles in their community inspires me.
Last December I attended a holiday dinner organized by Positive Living BC, along with about 150 people with HIV, mostly gay men in their 60s. A feeling of warmth came over me as I looked around the room and recognized many of the wonderful men who had buoyed me when I was newly diagnosed. All those years ago, I was often the only woman in a sea of gay men—at retreats, acupuncture groups, tai chi classes…. Many of us had witnessed each other’s physical decline and likely imminent death. In the throes of AIDS, we had bonded together and fought for our lives. And nearly two decades later, here we were, still kicking—grey hair and all! It was a bittersweet moment that I couldn’t have imagined in 1995 when I was only able to look a few months or even weeks ahead. Who would have thought we’d be sitting here in a room full of HIV-positive seniors?
If I had to get a life-threatening illness, I definitely got the best one. The HIV community is dynamic, political, engaging, fun and full of smart and fascinating people from all walks of life. Even if I wasn’t HIV positive, I would want to be a part of it.
Photograph by Kamil Bialous