The Positive Side

Summer 2007 

Chatty CATIE: Peer support

Peer support is an essential ingredient of survival for many PHAs. Here, five HIV-positive peer mentors — who’ve all been there, done that — talk about life on the job and offer advice to peer counsellor wannabes.

Interviews by RonniLyn Pustil

CHANTALE PERRON, 40

Coordinator of “jail” project Blue Sentry, CAPAHC;
Liaison Officer, Méta d’Ame
Laval, Quebec
Diagnosed with HIV and HCV in 1992

ON THE JOB: As a woman who used injection drugs for 10 years and who lives with HIV and hepatitis C (HCV), I’ve worked for the past several years as a peer counsellor for drug users and people with HIV and/or HCV. Since October 2006 I’ve been in charge of a project called Sentinelle Bleue (Blue Sentry). The principal goal is to make sure that when HIV- and HCV-positive inmates get out of federal jails in Quebec they know where to go for health services. Peer counselling is one facet of this job.

MAIN MOTIVATION: In 1998 I decided to look for a job where I could use my personal experience to help others. My main motivation was to try to help other people avoid the suffering I endured all the times I tried to quit heroin and to give them the help I wished I had when I was in need. I also want to help prevent others from getting HIV and HCV so they won’t have to face all the difficulties that come with these diseases.

COMMON ISSUES: Most of the time my clients talk a lot about HIV or HCV treatment — when it’s not working or when side effects are bad. But there are a lot of other issues they’re dealing with that aren’t as easy to discuss. When I meet a client for a longer session or on several occasions, the most frequent issues that come up are lack of money, difficulty finding a job, loneliness, the search for a lover and the fear of being rejected.

GREATEST REWARD: When the person you’re helping tells you they’re feeling better.

GREATEST CHALLENGE: As a peer counsellor I’m not recognized as a professional by certain colleagues, especially those who have a diploma or official title.

ADDED VALUE: My own experience allows other people to feel comfortable with me when they come to ask for help. It’s easier for people, especially inmates, to trust and open up to a peer counsellor. There’s less fear of being judged.

PEER TO PEER: For anyone who wants to be a peer counsellor, I have two suggestions. First, you have to take care of yourself — fix what needs to be fixed — in order to be able to help others. Second, if you want to be considered a pro, act like one! Work hard, stay informed and be honest and punctual.

KEN WARD, 50

Crime prevention, Enoch Cree Nation
Edmonton
Diagnosed with HIV in 1989

ON THE JOB: When I went public with my diagnosis in 1990, I became an HIV-positive Native poster child in the Aboriginal community in Canada. People wanted to know what steps I was taking to stay healthy.

MAIN MOTIVATION: I decided to become a peer counsellor based on my own positive experience with peer counsellors after my diagnosis. Their role in my life was lifesaving. I didn’t understand the illness itself and its terminology, and the peers explained it in layman’s terms. It was important for me to understand HIV and how people survive it because I was feeling threatened and afraid. But speaking with these peers provided some sense of comfort and understanding. I want to encourage people to believe that there is life after diagnosis.

COMMON ISSUES: With the population I work with — Aboriginal people coming out of prison and those with addiction problems — the most common issues are homelessness, starting antiretroviral therapy and the doctor-patient relationship.

GREATEST REWARD: Helping people create structure in their lives, fulfill their basic needs and be at peace with their diagnoses. Once in a while someone comes around who’s managing well and acknowledges my help with a simple thank you.

GREATEST CHALLENGE: Working with extremely high-risk individuals who are dealing with addiction — and all that comes along with that. Getting family support is not easy for positive people and drug users, and stigma and discrimination still exist. Helping people get through those barriers is a big-time challenge.

ADDED VALUE: I answer questions about spirituality because that plays an important role in my life. I try to do my best traditionally, which means going to prayers, sweats and other ceremonies. Also, as a former intravenous drug user, I know what it takes to be clean.

PEER TO PEER: You have to have a well-balanced way of life. Don’t burn yourself out. You want to be empathetic and compassionate, but don’t own other people’s emotions. Set boundaries.

RICHARD NERON, 37

Housing coordinator, AIDS Committee of Newfoundland and Labrador
St. John’s
Diagnosed with HIV in 1988

ON THE JOB: I mostly advocate for and work with phas who are homeless — women fleeing a violent situation, teenagers kicked out of their houses and those dealing with substance-use issues.

My role is to manage and coordinate shelter and support housing units.

MAIN MOTIVATION: Being diagnosed with HIV at 19 was very difficult for me. I felt alone and didn’t know what was going to happen to my life. When I got involved in Positive Youth Outreach in Toronto, I learned that I wasn’t alone — there were other youth in the same boat. I do volunteer peer counselling because I want to give back to the community that has helped me so much.

COMMON ISSUES: Relationships and sex, mental health, housing, family, employment, school and discrimination.

GREATEST REWARD: When I see someone doing well and they think I was a part of it and they thank me. It makes me feel good inside — and when we feel good our immune system gets a little boost.

GREATEST CHALLENGE: We can only give our advice — what people do with it is their choice. Also, it’s hard not to get emotionally attached to people because you feel for them and know that what they’re going through is tough.

ADDED VALUE: The client has someone who can relate and who will help in any way. I’ve been homeless, so I know what they’re going through and I feel for them

PEER TO PEER: Really listen to the individual and give them suggestions. Don’t tell them they should be doing this or that. It’s their choice. Just be there for them.

 

JOAN McLAWRENCE, 37

Treatment counsellor and peer mentor
Toronto
Diagnosed with HIV in 2002

ON THE JOB: I go to doctor appointments with people, take them clothes shopping, watch their children, go to ASO meetings with them, act as a reference if they’re new to Canada. I do active listening with my clients about their issues, concerns, needs and wants — and it’s not always about HIV. We also discuss hepatitis C, prevention, financial matters… anything they need to talk about.

MAIN MOTIVATION: I used to be a counsellor for young teenage moms. I never thought I’d end up doing this type of work again because it was very stressful, but when I tested positive I came back to it. I like working with my sisters, daughters, nieces and moms — that’s what I call them!

COMMON ISSUES: Disclosure, stigma and discrimination. It doesn’t matter if you’re black, white, pink, yellow… these are problems everyone has.

GREATEST REWARD: Knowing that I’ve made a difference in people’s lives.

GREATEST CHALLENGE: Separating myself from my clients’ issues so I don’t take them home with me. You can’t forget their issues, but you have to remember that you have your own life.

ADDED VALUE: My personality and the type of person I am. I get along with everyone. I’m not one to judge.

PEER TO PEER: Look within yourself to see if this is what you really want to do. You have to be able to deal with what’s going on in your life before you can deal with other people’s lives. Also, speak to other mentors before you decide.

JOHN CAMERON, 60

“Worn-out old queen with AIDS”
Volunteer
Richmond, British Columbia
Diagnosed with AIDS in 1994

ON THE JOB: Over the years I’ve worked with suburbanites, the gay community, addicts and Natives. Half of my time is involved with boards and communications. The other half is spent hands-on, doing street-level work.

MAIN MOTIVATION: After being diagnosed with HIV, I came down with shingles, developed extreme wasting syndrome and was diagnosed terminal. Here in Richmond, there were no services or support for PHAs, but I was adamant that I would not move from the community I’d lived in my entire life. I promised myself that if I survived I’d do something to change things around here so I could offer people what I didn’t have access to when I was diagnosed. Well, I did survive, and I started an AIDS support group in Richmond. Once a core group of people was established, we created the Heart of Richmond AIDS Society.

COMMON ISSUES: First, there’s the question from the newly diagnosed: “What do I do?” I provide counselling and referrals to them. Second question is: “When do I start drugs?” I advise people on when to start treatment and how to sustain it. I try to get across how important it is to adhere to antiretroviral therapy. Third, there’s an array of questions on health issues, treatment problems and the daily problems of living with AIDS.

GREATEST REWARD: AIDS is now an industry. I find board work and bureaucracy a painful necessity. I retain my sanity through my street-level work because you see direct results. When I walk down the street, people know me — that’s the reward. Plus, I’ve made a lot of friends and had a lot of fun.

GREATEST CHALLENGE: Keeping up to date with drug and treatment protocols. The disease hasn’t changed, but the treatment has.

ADDED VALUE: Food. Whatever I do, I make sure people are fed.

PEER TO PEER: Treat people with AIDS as equals, not just as your clients.