Still here: living out of the shadows with HIV and AIDS Vancouver Island
Story first published Nov. 25, 2010
When Charlene Anderson found out she had HIV, she didn’t tell anyone for six years. She spent that time afraid to touch or even hug another person for fear she would kill them—because that was what she was told would happen. Doctors also told her she’d only have about seven years to live. Then, Anderson came down with pneumonia and had to be hospitalized—and she knew it was time to come clean, publicly.
Now, 20 years later, Anderson is a bright activist in the AIDS community and has been helping others face and work with the disease that hid in the shadows of her own life for so long.
“When it comes to stigmas, the worst of it was in my head back then. I knew I was positive, but I didn’t know what to do with it—it’s life changing,” says the 49-year-old Anderson. “I’ve been very fortunate in so many ways, because the biggest stigmas I’ve had to deal with are actually from the medical world itself. Twenty years ago, most general practitioners didn’t know what to do.”
Anderson says that years ago doctors or dentists would often schedule her as the last appointment of the day for health purposes, and write every other medical ailment off as yet another result of her HIV. Since then, she was able to find a doctor who specialized in HIV and AIDS-related care. And, to Anderson’s relief, when she did come out about her condition, her employer was extremely supportive, as were many of her closest friends.
“I don’t have a lot of acquaintances now—I don’t have time for them,” she says. “I have some really wonderful people in my life, though, and a partner who loves me deeply.”
The wrong disease
Anderson has been on the board of AIDS Vancouver Island (AVI) for over a year, and has been a longstanding member since she discovered her disease— the term AVI commonly uses instead of virus, for the chronic nature of HIV. Anderson also participates in the annual theatrical production The Viral Monologues and frequently talks to high school students about AVI and about what it’s like living with HIV.
AVI itself is celebrating its 25-year anniversary December 1—World AIDS Day. Yet almost 30 years after the first case of AIDS hit North America, stigma may be one of the hardest challenges remaining in the HIV community today.
“There’s this perception that there’s a ‘good’ and a ‘bad’ way to contract HIV, and the underlying question comes down to: was it your fault?” says Andrea Langlois, manager for AVI’s communications, community relations and research. “But we wouldn’t ask someone ‘How did you get diabetes?’ . . . All people do risky things at some point in there lives but, no matter what the results, people still deserve the same medical treatment and respect.”
Anderson isn’t afraid to tell people she contracted HIV from a former partner who was an IV drug user. Yet when she tells people she, too, was a former drug user and alcoholic, she’s met with quizzical looks that yet again question how exactly transmission occurred. “Sometimes people will even ask me what my drug of choice was, but I never used IV drugs,” she adds.
On the outside, Anderson looks like a healthy and boisterous middle-aged woman. Her eyes sparkle, she has a giddy spring in her step and she laughs often. The bright colours she wears are second only to her rosy cheeks and tanned complexion. She gave up the use of drugs and alcohol shortly after she found out she was positive and began taking better care of herself overall, she says. She was without any symptoms for the first six years of her disease, but at one time had to take up to 26 pills a day—many of which made her sick. Now, she’s thrilled to be on a cocktail of only five pills.
“Something a lot of people forget is that every body, and every virus, is different,” Anderson says. “No two people every respond the same way.”
While there’s still no cure for HIV and AIDS, medicine has come a long way in the past few decades. As Langlois points out, B.C. is currently leading the world in HIV and AIDS research, including advancements in highly active antiretroviral therapy (HAART), which can slow the progress of the virus, and programs offered by the B.C. Centre for Excellence in HIV/AIDS which now specialize in women and marginalized groups, including aboriginal people and those living in poverty. Meanwhile, support organizations like AVI have been hard at work developing resources focused on the “living” part of living with HIV—including the Positive Wellness Program, Men’s Wellness Program, Street Outreach Services and more.
The $500 mission
It’s a long way from the six gay men who founded AVI back in 1985 with a $500 budget and meager resources. Since then, AVI has extended its services branches to all over the Island and, last year, AVI moved into a permanent location at the Access Health Centre on Johnson Street. Now, the group is operating with a $2 million budget and served over 500 people registered as HIV-positive in 2009. AVI also hosted 700 education workshops reaching over 14,000 people, and accumulated over 16,000 volunteer hours.
“There are still some huge misconceptions out there,” Langlois says, including thinking you can contract HIV from being in someone’s house, or that if both partners are HIV positive you can’t infect each other. “One of the main reasons HIV spreads is because of a lack of education.”
While the province does pay for the combination therapies, it can still be hard for many people to go the drug route, either because of the often-horrendous side effects, or—especially with the homeless population—an inability to stay on treatments long enough to have any effect. Some drugs must be kept at certain temperatures, and going on and off medication can actually cause the virus to morph into a super-resistant strain.
While people with HIV are living decades longer than they used to, science is still researching the effects of long-term cocktail use. As the population ages, the effects are unpredictable. Anderson is now suffering from osteoarthritis, challenging hormone levels and chronic fatigue. Five years ago she had to quit her job of 18 years due to her loss of energy, which devastated her, she says. She’s lucky, though, as she now has the opportunity to be on permanent disability—something many people living with HIV don’t get.
“The hardest part is how I can never predict whether it will be a good day, or a bad day. Today is a good day,” she says, laughing and bouncing a little. “But sometimes I can’t last two hours before I have to crash.”
In addition to the fatigue, Anderson deals constantly with symptoms from nausea and headaches to stomach problems and more—many from her drug cocktail. Yet she brushes off the grocery list of side effects as all part of the day. Food is another special consideration for Anderson, as her body now requires more protein and regular portion sizes to keep up her strength.
“In many ways, I’m actually healthier now than I was before I was positive. I had to change everything,” she says. “Yes, I’ve had HIV for 20 years, but I’ve also been clean and sober for 19 years. We have to be our own advocates, and I’m proud of myself for that.”
When it comes to positive personalities, however, most of the members of AVI would agree that Glenn Maguire, a 60-year-old gay man, is about as happy as they come.
“I’m not negative about being positive,” he says with a laugh and a Santa Claus twinkle in his eye. “I don’t let it define me. I don’t even think about it that often. Fifteen years ago, when I found out I had HIV, I was given two years to live. I’ve never been sick, my CD4 [red blood cell] count is up—I had a friend with a count so low he named each of his cells—but I’ve never felt better.”
Maguire’s story mirrors Anderson’s when it comes to keeping the disease private. At the time he contracted HIV, Maguire was living in Toronto and working with a business partner who had leukemia, but also wasn’t ready to face his fate.
“There is a certain hierarchy to diseases,” Maguire explains, drawing an air diagram with his arms. “Cancer is up here, way at the top, and HIV is way down here at the bottom. So nobody talked about it, and everyone went on in this great mental pain like nothing was wrong, but it was so tense you could breathe it.”
For years, Maguire, who is also bi-polar, turned to heavy drugs, cocaine and alcohol to escape his reality. He would work all day, mentally vanish into his night until he could sleep and then start all over again. Then, one day—about three years ago—he says he woke up and realized he wasn’t living at all. He quit his job, moved to Victoria, joined AVI and has been a highly involved contributing member ever since.
“At the bookends of life, your concerns are the same. You worry about the birds, the ocean, making grass angels. I say, almost every day, this is the most beautiful day I have ever seen,” Maguire says. “I can remember myself at age 18, and then at 57, and that man in between I didn’t even know. I’m the poorest financially and the richest emotionally I’ve ever been.”
While he’s open with his disease now, Maguire does not enjoy the look of pity he sees on many faces when they hear he’s positive. “I don’t want to own your feelings of mortality, because I don’t share them. Even many doctors are quite uncomfortable with it. I’ve had conditions that have nothing to do with my HIV, and I had one doctor say, ‘Well, we all know the big elephant in the room is AIDS, isn’t it?’ It’s like a write-off. But you have to be treated with respect, and treated equal to all patients.”
Katrina Jansen, AVI executive director, says that despite all the work AVI has done in the past 25 years, stigma is still the biggest problem the community faces—that, and the fact that resources are still needed.
“In the next 25 years, our biggest hope is that we won’t have to exist—that the need for us will be gone,” says Jansen. “You have to wonder what the founding fathers had hoped the world would look like by now. So far, we haven’t even been able to get rid of the stigma, but that doesn’t mean we’ll stop. We can’t underestimate the tremendous advances we have seen. We just have to keep going.”
In the meantime, keeping going—both with spirit and activism—is exactly what Anderson and many members of AVI plan on doing.
“At the end of the day, I’d like people to realize I’m not special—I’m just a normal person, and this could happen to anyone,” says Anderson. “HIV is still out there and it’s a reality. But you can’t stop living your life because of it.” M
On December 1, AIDS Vancouver Island will launch the online art auction fundraising campaign with local Canadian artists titled “Artists For AIDS” (artistsforaids.ca). Visit avi.org for more information on AVI, how to donate, how to get involved or to access community resources.