My Most Important Lesson

I have been an advocate for over 5 years now.

In that time, I have learned so much. I’ve learned about advances in the field of HIV treatment, other advocate stories and struggles, ways to help the communities I am a part of, and how much stigma affects everything we do. I have also been a health educator, public speaker, writer, and even have my own TEDx Talk.

I have put blood, sweat, and tears into this work and given it everything I had.

That is what taught me the most important lesson of all: if you give everything, you have nothing left for yourself.

Lack of identifying myself outside my status

Being born with HIV comes with a lot of challenges. I’ve had to deal with chronic illness from the day I was born, having family constantly worried about my health, losing my mother to AIDS-related complications, effects on my development, and stigma (both internal and external).

The biggest challenge of all was my lack of identifying myself outside of my status. Every time someone new came into my life, I would mention my HIV at some point within the first few conversations.

I grew up with it being an ever-present fact in my life and I couldn’t stop using it as an “interesting fact” about myself because I couldn’t think of anything else worth mentioning.

No separation between advocacy and self

When I say I gave everything to this work and my status, take me for my full meaning.

There was no separation of who I was as an advocate and educator, and who I was as a person. Hours of preaching person-first language, self-care, talking about how we are more than our status, etc. I couldn’t even tell you the kind of person I was outside of it all.

I gave my advocacy everything I was. I put hour after hour, unable to stop myself from talking about new advances in HIV and the importance of prevention.

My own wife asked me if I could meet 1 new person and not talk about my work or my HIV... I couldn’t make any promises.

My whole identity had been swallowed in all the ways I tried to warn others against. Many nights in the dark, in tears over how little I actually had beyond my work.

Making the decision to step away

This year, all of that changed. I made 1 of the hardest decisions I had made in my life. I stepped away from my advocacy. I stopped actively searching for events, I set my writing aside, I did my best to stop talking about work outside of work.

I told myself that, after everything I had accomplished, for now, I had done enough. I say “for now,” because I’m sure one day, I will pick things back up again. But for the foreseeable future, I have no plans to do so... and that has been one of the most freeing things in my life.

Life outside of HIV advocacy

I have finally started to see who I am when HIV is not involved. I’ve finally, after the self-reflection I’ve given myself time for, come out as non-binary.

Thanks to motivation from my newest love in my life, I’ve developed more confidence and started dressing the way I want (more stylish and with more feminine aspects).

I’ve discovered I have a talent for scare acting, I’ve started performing at shows held at my favorite bar, and started plans to tackle old fears I’ve had of swimming and other activities like roller skating.

I’m even living my life-long dream that I had forgotten long ago: becoming a clown. Not even joking, my love and I are clown-styled fetish performers.

The work will be there when you get back

So, to sum it all up, to all the advocates out there: as much as you feel you owe your community to give it your all... you owe this work nothing.

Yes, the work is important. Yes, many of us have accomplished so much. Yes, there is more work to be done.

But that’s just it, there is always more work to be done, and you can’t do it if you’re burnt out or dead. Take the time for the only person you owe anything to, yourself.

The work will be there when you get back.