This post originally appeared on and can be read in its entirety at The Well Project.
How did you get your start in HIV advocacy?
I fell into advocacy. It was a combination of working as a nurse at an AIDS Service Organization, going to an empowerment seminar and seeing how stuck some of the women were in shame and guilt about their status, and learning to use my own voice to ask questions and figuring out how I wanted to be seen and heard and treated. I have a special place for women in my heart. We carry so many societal burdens on our shoulders and stigma makes them all that much heavier. I want us to remember we matter and to find a space to smile and feel free from shame.
Do you think women living with HIV face unique challenges?
Women living with HIV definitely hold a unique space with unique challenges. We are often expected to set our own needs and health and mental health and wellbeing aside to care for family. HIV is traditionally an old boys’ club and the focus, money, and energy are often directed towards them. Women often don’t find out our status until late in the disease process, or during pregnancy, which brings a whole new set of concerns.
It’s imperative we remember we matter too. That we remember to set time and energy aside to care for ourselves. Women have to ask for, work for and demand the same resources and opportunities that our male counterparts get by default. We have to continue to teach each other, to hold each other’s hands, and to light the way for each other.
What advice would you offer a woman who recently learned that she has HIV?
HIV is a virus. You are a human. Those things are different. You are not a disease. You are a person living with one. HIV will change your life. Whether that change is positive or negative (pun intended) is up to you.
What advice would you offer a woman who wants to get started in HIV advocacy? Any specific guidance about getting ready to publicly share her HIV status for the first time?
Advocacy is one of those things that isn’t for everyone, and that’s ok! If it’s something you want to do, I’d say get really comfortable and intimate about how you feel about yourself in your HIV journey first. You’ll need that solid platform to guide you through the hard parts. Your voice and personal journey are welcome and needed so that someone who can relate to YOU and WHO YOU ARE will feel acceptance and love in their journey. Each one, teach one.
It’s important to remember, though, that just because you don’t shout your status at people or wear a t-shirt with your status on it, doesn’t mean you can’t be an advocate. You can advocate in small ways. Blogging, writing letters, sitting with people who are having a health setback, working a booth at a conference or fair, and just living your best life in spite of a three or four letter acronym are all things that you can do to feel a part of the community, without having to reveal your status. Continue reading...
The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. Visit their website, https://www.thewellproject.org/, to access fact sheets (English and Spanish), blogs, and advocacy tools, and to join a global community of women living with HIV.