Canadian Positive People Network (CPPN)
Réseau canadien des personnes séropositives (RCPS)
Deborah Norris (Edmonton, AB) is the Treasurer of the CPPN's Board of Directors and the Board's representative for the Prairies. She is a Long-term Survivor of 30 years (diagnosed in 1991), and she shares her thoughts about Long-term Survivors of HIV here.
"I have a lot of mixed feelings about HIV Long Term Survivors Day. Each year is another year that I am alive. For that I am truly grateful. It is a day when I think about all those, I loved who did not survive. Due to government inaction and negligence, due to lack of caring about people living with HIV, due largely to ignoring people living with HIV. It angers me that people I love died needlessly. I’m grateful to the community of activists who fought hard for the medicines that are keeping us alive.
When I think about the theme of "AIDS at 40: Envisioning a future we never imagined", I think of those of us who believed the doctors when they told us that we had "at most 6 months to a year to live and to get our affairs in order." I think of the trauma that we went through never knowing if we would be next to die. Seeing all our friends and loved ones dying and not being able to do anything about it. The guilt felt as another person in our circle died and praying that we would be spared. The trauma that we still feel as survivors, when so few survived. The trauma of worrying for years about what was going to happen to my two children.
What has changed over the years is that now we have medications that are keeping us alive. And not just alive but many of us are thriving. What has not changed is stigma. People living with HIV are still being treated in horrendous ways. We now know that someone who is on anti-retrovirals cannot transmit the virus sexually. Even though this information was known as long ago as 1996 here in Canada, people living with HIV were not told. In fact, we have been treated like vectors of transmission and yet the truth is that we are not. Gatekeepers continue to keep this information from people. Here in Alberta, I was a peer researcher with the Alberta Stigma Index, which was carried out over the last two years, and we found that most HIV specialists are not sharing the news of U=U with the people living with HIV whom they see. The stigma continues. We found that people continue to be treated badly by friends, family, healthcare workers, the community. We found that people are isolated because they fear how others will treat them. After 40 years, why is this still happening?
I continue to do peer support, which I helped start here in Edmonton in 1992. I would tell someone newly diagnosed:
-- Find yourself a good doctor familiar with HIV, a specialist is preferred. Make sure you find someone you trust and whom you can talk to openly and honestly.
-- Get on medication as soon as possible; you may have minor side-effects, but the meds have come a long way-most people living with HIV take just one pill a day! - and the side effects should be minimal and be gone within a month usually.
-- Become connected to other people living with HIV; become a member of a local support group, become a member of the CPPN; connecting with others who are experiencing what you are experiencing will make a huge difference.
-- Decide who you can trust and tell them- community and having people around you whom you trust and support you can make such a difference.
-- Most importantly: your life is not over! It is just beginning!
Life is not all rosy. Long term survivors are dealing with co-morbidities caused by being on anti-retrovirals for so long. But we are thriving. We continue to be advocates and activists. We continue to fight for the rights of people living with HIV, especially those who are marginalised and not given access to testing, treatment, knowledge, and support. We still have lots of work to do, and there are many of us doing it, but we need more people living with HIV to step up and help. Here's to many more years of making the world a better place!"