Canadian Positive People Network, or CPPN/RCPS, the federally funded national organization for people living with HIV and hepatitis C in Canada, recently asked its members how they have been coping with COVID-19 restrictions. The answers were indicative of a country more successful than some in combating the epidemic, while shedding light on some major pain.
By way of background, much of Canada is moving toward a safe reopening. Not that the country has been immune. As I’m writing this blog, the country has recorded 112,000 cases and, sadly, 9,000 deaths. Daily new infections are running much lower than in the United States, even allowing for size of population. Ontario, Canada’s most populous province at 14.4 million people, for example, is currently seeing new cases hover under 200 daily; Florida, with its 21.5 million residents—a 50% higher population than Ontario—is recording around 10,000 new cases per day.
Against this backdrop, Canadians have endured perhaps stricter lockdown restrictions than in much of the States. There has been less resistance, though, to mask wearing here, in a nation thankfully absent of much of the political wrangling that we’ve seen south of us.
In any event, CPPN/RCPS recently asked its members how they are coping with the COVID-19 pandemic. The questions included what they have been missing most—and what they are most looking forward to once all this is over. Turns out it’s mostly about socializing. Throwing a party, being around people and friends, volunteer work and hugging all scored high.
What else? Going to the dentist, going to a quilt store, drag, not wearing a mask, gym, groceries shopping without masks, taking the subway, movies and football games, going out for dinner and to the theater, relaxing, travel—all were mentioned.
Then there were some more sobering answers: “I can’t wait to leave the house without having to think about whether or not doing so might put me or my family at unnecessary risk.” And this: “I don’t feel it will ever be the same as before, will have to learn the new normal.”
What have Canadian people living with HIV been most missing for the last four months or so? Similar answers to the above were common, often revolving around face to face connections. Surprisingly “missing sex” only appeared twice. But there was also a sense of loss. “I miss not having to worry about grabbing a mask and gloves before I leave the house,” said one responder. “I miss being able to go out for regular shopping (groceries, etc.) without having to self-negotiate the time of day, the store I choose to shop at, or the time it takes to get through the door.”
The survey also probed the challenges members were experiencing during the epidemic. Clearly some have been struggling. “Living by yourself can bring up so many feelings like unworthy, unlovable and just the feeling of loss. The stress of being in public being a person with HIV has had an effect on my mental health.” Another: “As a long-term survivor, I have had triggers to the AIDS nightmare in the ’80s.” And another: “My challenge is that my HIV is being put on hold because I am unable to see my HIV team. They are an important part of my overall health.”
Themes of loneliness turned up frequently. Here’s what one responder said: ”While I’ve always been a homebody, it has always been by choice. The COVID-19 crisis has all but removed my options, and that is definitely a challenge. Plus, since my lifetime partner passed away last year, I’ve felt very much alone and really isolated. COVID-19 has punctuated that loneliness to a fairly palpable degree.”
Other challenges mentioned included isolation, cabin fever, keeping healthy and fed, getting blood-work done—plus concerns about becoming infected with COVID-19.
Some dealing with other conditions minimized the disruption in their lives. “Being autistic, most autistic people feel less anxiety because it’s logical we would be anxious at this time,” said one.
It’s clear though that people living with HIV often display resilience. “What is one thing that you are celebrating right now, despite the COVID-19 situation?” is a question whose answers demonstrated an ability to be positive (no pun intended), despite everything.
Here are some of the things people are celebrating despite the pandemic: a high CD4 count, still living and not catching COVID-19, living in a house with access to outside, “gardening in my yard, fresh veggies,” work and personal projects, collecting old age security, “my dog, she keeps me active and sane,” a new apartment, a new partner, the pleasure of relaxing at home.
The very act of surviving is also a cause for celebration for some. “I’m hanging in—that’s worth celebrating because days can be pretty dismal.” Others count themselves lucky. “Because I watch so much news (even before all of this started to unfold), I realize how grateful I am to be relatively healthy,” said one. “While I join the thousands around the world who are mourning COVID-related loss, I can’t deny that I celebrate the fact that COVID hasn’t touched my inner circle of family and friends.”
Despite an overwhelming sense of loss evident in many answers, it’s clear Canadian people living with HIV are nothing if not survivors.
This article is based on a story originally appearing on the CPPN/RCPS website here.