'I didn't think I'd be around': Long-term survivors share stories of aging with HIV

Gerry McConnery, 65, didn't expect to be retired and worried about outliving his financial savings because he never thought he'd live this long.

When McConnery was diagnosed with HIV at age 39 in 1993 doctors told him he had three to five years to live.

"It was very depressing, it was a very scary time," said McConnery, sitting on his couch in a basement suite in his daughter's bungalow in southwest Calgary.

McConnery said he watched as friends slowly wasted away in hospital rooms and attended up to eight funerals a month. He said he drank to excess to cope with fears he'd be next.

But he survived with the help of friends, family and Alcoholics Anonymous — and the right balance of medications to keep his immune system strong.

I found the more I spoke about where I was at the better it was for me.- Gerry McConnery

He also found purpose in becoming an advocate for those living with HIV in Calgary.

As a long-term survivor, he now worries about what aging will look like after spending decades fighting the disease and consuming different medications — and how he'll be received if he ends up in a hospital or long-term care facility in his dying days.

"I'm going to be very out about my status and I'll always be the guy that makes the clamour in the corner to make sure that you know that there is no discrimination," said McConnery.

McConnery shared his story for a digital storytelling project at the Sharp Foundation, a non-profit organization that provides housing, health care and community supports for those living with HIV or at high risk of contracting HIV.

The organization is compiling stories and research to share with service providers to help them understand the unique background, medical needs and outlook that people living with HIV have as they age.

"The obligation of all service providers is to understand that there's still that stigma, people still need a high degree of privacy and confidentiality," said Floyd Visser, executive director of the Sharp Foundation.

Visser said the videos will also be shared with Sharp clients so they can see they're not alone in their journeys.

A new frontier

Visser said a lot of work has been done to educate and better support youth within the school systems, around gender identity and sexual orientation. Now Visser said more attention is being put toward educating those who work with older members of the LGBTQ2S+ community, and in this case, those living with HIV.

"Some people describe the aging of the LGBT community as sort of the last frontier … the last frontier or a new frontier," said Visser.

He said in Calgary more than half of HIV positive people are also part of the LGBTQ community.

Staff should be trained in the complexities of the disease, Visser said, from understanding the way HIV medications interact with heart medications, or assessing if talking about personal stories is helpful or retraumatizing to a long-term survivor.

But Visser said it's not always just staff that need this type of education. He said those living with HIV say they are more worried about the reaction of the other residents in a care facility to disclosing their status.

"This is where the service providers have an obligation as well.

"What are they doing to support other people in the building so that they have a better understanding of the diversity that exists? And, we're looking at a generation where some of us were taught to be super politically correct and others were not," said Visser.

Visser said some people may choose to stop taking their medication for fear that the other residents will discover their status.

Visser hopes this digital story-telling project, and other projects SHARP is developing, will help Alberta Health Services and other health-care officials develop policies.

"How do you manage someone who uses bigoted terms, right? Or calling people bigoted names, how does an organization manage that? Those are the kinds of conversations we want to invoke."

Stigma persists

McConnery said most important is that everyone be treated as an individual.

Because he knows not everyone will be as willing as he is to be open about his status. 

"That's just who I am, I came out many years ago, I was speaking in the schools by 1995 and I found the more I spoke about where I was at the better it was for me."

He said he recently asked his Friday lunch group, made up of about 40 people, whether he could get eight people at a table to be in a photograph for his digital story — only two agreed to be photographed.

"That fear is still there about other people finding out about your status … women have so many issues, the immigrant population, there's a whole bunch of issues there," he said.

And not everyone, Visser said, will have a traditional family visiting them, if anyone at all, and that needs to be communicated to staff, without fear of judgment.

Visser said so far, three people have signed up to share their story but said he hopes others will come forward to allow a better understanding of what people went through during the AIDS crisis, or epidemic, and how that informs their perspectives today.

This digital story telling project is one of three e-learning modules, produced by Sharp and funded by the provincial government.

The organization is also developing a module around building inclusive and respectful communities among the LGBTQ community which is expected to be released in March. A third module is about teaching the  LGBTQ community ways to build resilience. That is set to be completed in 2021.

The digital storytelling project about Calgary's aging HIV community is set to be complete by 2022.

The Sharp Foundation, in conjunction with the Mike Lang Stories, is running a workshop in March where seven other long-term survivors will produce their own digital stories.

Another workshop is expected to run this spring. For more information, people can contact the Sharp Foundation or email gayatrimoorthi@habituscollective.ca.