Patient Blogs | HIV
How I Found My Voice as an HIV Advocate
friends sitting in grassy field

Figuring out how to live with HIV is challenging. Though there are varying degrees of difficulty that come with each person’s journey, even under the most ideal of circumstances, it can all still be extremely confusing.

One thing not many people understand about life behind the HIV curtain is just how many things there are to really, truly consider. Finding your way to acceptance of an HIV-positive diagnosis while also managing your personal feelings and emotions about the situation can feel like putting together a jigsaw puzzle.

There's also the “health maintenance” component we each have to deal with: developing a routine for doctor visits, getting routine lab work, eating healthy, getting enough rest and exercise, and avoiding stress. That would all be enough as is, right?

Then there’s also the act of disclosing your HIV status to others, which is almost always directly connected to concerns about safety and harm, not to mention ridicule, judgment, and stigma. Add to this list all that comes along with sex and dating as a person living with HIV, and you’ve got a pretty serious laundry list of issues to face.

As someone who’s had to confront each and every situation listed above head-on, I can attest to the fact that it’s no cakewalk trying to manage it all. Many times, everything comes at you and happens all at once. This can lead to deeper issues of depression, sadness, and isolation – especially as you try to shield or protect yourself from more harm.

What I know for sure is that it helps to have others to process these things with. Support from people who’ve been where you are and who’ve had to face some of the same challenges can be a lifesaver.

When I tested positive in the fall of 2004, I had several people in my life who’d been living with HIV. I was already close with them and knew them very well. What this meant was that even prior to me testing positive, at the very least I had affirming examples of people who were not only living, but were thriving and had figured out a way to function and exist without allowing HIV to completely upend their lives.

While it was still extremely frightening and confusing in the beginning, I’m grateful for two people in particular whose guidance and counsel ushered me through that stormy period of my life. Thanks to that kind of support, I knew I wasn’t alone (despite how much that felt like the case at times). And that was one of the things that I now realize not only saved me, but allowed me to eventually find my own voice and to be of support to others.

A number of years into my journey as an HIV-positive person, as I carefully and very slowly started to share parts of my story, I remember other people beginning to reach out to me for advice and support. Each time it happened, I’ll admit that I was a bit caught off guard, because my intention was never to become an advocate or a spokesperson for HIV. I was literally figuring it all out as I went along.

In the beginning, when someone would ask me “how I did it” – in reference to disclosing my HIV status to family or close friends – all I could do was be as honest and transparent as possible about whatever point I was at in my own journey. As several other people continued reaching out to me, I made it a point to keep my heart open, to listen, and to remind whomever I was engaging that they had to move at their own pace and comfort level above all else, while also trying to be very gentle with themselves. In doing so, I was doing my best to pay it forward and offer up the most useful and compassionate means of support possible, because that is what was given and gifted to me.

It’s important to note here that because everyone’s story is unique, not everyone living with HIV is an advocate, nor should they be expected to become one. However, all of us who, over time, have found a way to navigate many of the land mines that come with life on this side of HIV have sacred opportunities to be an anchor of sorts to others who have yet to find their way.

Part of my origin story will always be the fact that nearly 2 years into being HIV-positive, I started an arts and outreach organization focused on creating a safe space for Black gay men living with HIV, as well as Black LGBTQ people who’ve been marginalized. Just as contracting HIV and having my life forever changed in immeasurable ways was never a “part of my plan,” neither was the creation of Brave Soul Collective.

However, as years passed, and I found my footing by becoming fearless enough to share my truths and speak candidly about living with HIV, I now understand that in doing so, I was showing someone else how to get through, by example. Advocating for ourselves is never easy, especially not in the very beginning when everything is completely foreign. Still, I sincerely believe the more we find the courage to do so, the more we create a path of possibility for someone else who may be in need.

For years I’ve heard it said that “we can only teach that which we need to learn.” In looking at what it means to advocate for yourself, especially when it comes to living with HIV, I find that to ring true.

Whether in the smallest and simplest of ways, like identifying what practices work best, or in larger more significant forms, such as combating stigma or doing some kind of work with HIV and AIDS outreach and education, all of it matters when examining how we each find our footing and ultimately find our voice. In being vocal and visible as people living and thriving with HIV, we not only save ourselves, but we also give others a lifeline and hopefully make their journeys just a little bit easier.



Photo Credit: Tim Robberts / DigitalVision via Getty Images

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Monte J. Wolfe

Monte J. Wolfe

Diagnosed since 2004

Monte J. Wolfe has lived with HIV since 2004. He is a multi-disciplined artist, theatre professional, and graduate of the Howard University Theatre Arts Department with a BFA in theatre arts administration. Wolfe is the founder of Brave Soul Collective, an organization raising awareness around HIV/AIDS and issues affecting LGBTQ people of color through the performing arts. You can follow him on Facebook, Instagram, and Twitter.

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