The inspirational journeys of people who are long-term survivors of HIV
Julene
Julene
Seattle, USA
Julene is a long-term #HIV survivor originally from New York who now lives in Seattle. She is an experienced speaker and advocate, having shared her experiences of living with HIV on panels, in poetry readings and with the Seattle AIDS Memorial Pathway. Photographs and story by Julene.
Being a woman living with HIV, I have always been invisible. Doctors didn’t think to test women unless they were drug users or pregnant. Thirty years living with HIV no one asked, “Are you HIV-positive?”
Now, with modern medications, AIDS has turned largely invisible, the history mostly forgotten. People with AIDS die from heart disease or cancer, normal causes like the masses do. But stigma and fear are very much alive.
Today most people think AIDS is over. It looks like taking one pill is the answer. But there are many of us who can never take a one-pill regimen. After I started medications in 2002, I developed resistance to the largest category of AIDS medications within a year. Plus, AIDS is similar to COVID-19, which is also highlighting the inequities.
I am white, educated and privileged, so I did not experience the inequalities so many others experienced.
However, as a woman, if I had not been aggressive in my health care I would not have learned my status until I was sick.
Every time I share my status, it is a challenge, an unrobing, a stepping out from behind a curtain.
HIV is a difficult thing to talk about and, when we share, we have to be emotionally secure to handle whatever response we receive. Now, after 30 years, I'm a long-term survivor and for the first time being open about my status.
I have worked for more than two decades in AIDS services and am one of the founders of the Seattle-based Babes Network, a peer support organization with the slogan, "A sisterhood of women facing HIV together."
I did this work out of love; I am grateful for such a rich career during the years I’ve been living with HIV. A poet, I am organizing my fourth collection of poetry. Two of my books include poems about working in AIDS services, including elegies that honour clients and friends who died because of AIDS.
T a k e a c t i o n
Help us share the experience of what it is to be a long-term HIV survivor