This article by John Larsson first appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
In 1996, everyone was very excited, elated, about the new treatment “cocktails.” But those of us who had been working in the field for a while recognized pretty quickly that this new hope presented a double-edged sword: Yes, it was great, but it was really going to f*** with people’s heads.
Before antiretroviral therapy (ART) came on the scene, my work as a counsellor often consisted of helping people with AIDS to navigate their new frightening reality. We spent a lot of our time helping people to be as comfortable as possible as they died. Back then, when you met someone with AIDS, you knew that that person would very probably die. Looking back, I think we did a really good job of connecting and engaging with these clients. We saw ourselves in them.
We would set up and facilitate support groups for people living with HIV and bereavement groups. There was a lot of death in our work: the death of a person’s partner or the client’s own imminent death. We worked to make sure that hospital food actually got to people with AIDS who were hospitalized—it was often left outside the door. We organized care teams and we challenged healthcare providers who could be homophobic and ill-informed. And because so many people were too ill to come to the office, we did a lot of home and hospital visits.
Our aim was to improve people’s quality of life. Many had very strained relationships with their families even prior to AIDS, and they often had a strong need to reconnect with them. We would facilitate family meetings, so that some reconciliation might take place.
We were present. We listened to people’s fears and anxieties about “the bogeymen that come out at night.” We witnessed. We showed respect. They felt heard and taken seriously, so they were not alone with their grief.
The future was uncertain. Or for some whose health was bad, the future was quite certain. So, we helped people identify and act on their short-term goals. We’d help them transition out of work or move from the apartment they could no longer afford into a cheaper place.
I think we helped people find some direction and joy at a time when things looked so bleak. People’s lives were shortened in a way they couldn’t have predicted, so they needed help to see their lives in a way that made sense and was manageable. The irony is that that’s the only way to live, as none of us ever knows how much time we have.
Those early days were chaotic and the people I met were an incredible, eclectic, dedicated, fierce bunch. There was a lot of suffering, but also a lot of laughs and a lot of dark humour. I know people who say, “Don’t ever tell me I was brave!” but bravery is what I saw. In spite of their condition, people managed to smile and find purpose. People are amazingly resilient and have a huge capacity to find joy.
When 1996 arrived, we in the HIV community had been hanging on by our fingernails, hoping to find something soon. People with AIDS were doing whatever they could to hold themselves together with the few drugs and alternative therapies that were out there.
And then there was a sudden shift.
We started to hear stories of miraculous recoveries: people getting up from their deathbeds to return to work. At the AIDS Committee of Toronto (ACT) we saw an immediate drop in our client base. This wasn’t just about people getting on drugs, it was that people suddenly had hope so they took a holiday from AIDS.
Through the evolution of treatments, our clients’ health improved. People didn’t get sick as often and they bounced back from illnesses. In counselling, we started dealing more with how clients could manage the side effects from their medications. Some clients had had AIDS for a long time and it had really taken its toll. They were not as quick to catch up health-wise, having been through the hell of a lot of partially effective or bad meds. Many had been told to prepare for an early death, so they did. Now they faced the daunting task of living. But through all of this, a common thread was people’s resilience.
Depression, anxiety and trauma—that’s just the name of the game, especially for clients who have been around HIV for a long time or who come into the marginalization of HIV from a previous experience of marginalization. A lot of the acting out we see—things like hyper-sexuality, extreme substance use and self-harm—have their roots in trauma, anxiety and depression.
Today the main issues I see in counselling are depression, anxiety, trauma and stigma. HIV isn’t so much about death anymore, but in some people’s minds HIV is distasteful, dirty, and you’re judged as unworthy if you have it. For those with access to meds, their bodies are most likely going to be OK, and they will likely live into old age. But that’s not what life is all about.
As a counsellor, I’m not only dealing with my clients’ blood work and meds. We talk about their lives, their relationships, their mental health, their trauma. People are not, and never were, just the virus in their bodies.
In the early days we usually didn’t have time to work through those issues. We were scrambling to deal with the immediate realities of death and dying. But today we have the luxury of time, to explore people’s life experiences. And there’s a lot that people have to deal with. There always has been.
About the author: John Larsson (formerly John Gaylord) is a social worker who has been counselling at ACT for more than 20 years. He works with people living with HIV, their partners, friends, families and others with HIV-related concerns.