“Mr. Lamb, your test today shows that you are reactive to HIV,” said Rachel Santiago on Dec. 19, 2012. It was a day I will never forget, a statement that will always sting, and her name will always be said, because in a sense, she helped shape the rest of my life. You’d think after receiving such life-changing news, living with HIV for almost eight years, and being involved in advocacy alongside working in public health, that delivering that news to someone wouldn’t be an issue, because you’ve been in that same exact position. Not at all. For me, that makes it harder.
I remember the first time I gave a reactive test result to a person. It was 2015, in the backseat of my 1990 Buick Regal Custom. I used an at-home HIV test, Oraquick. After 20 minutes, two lines appeared before my eyes. I told my friend. He broke down. In that moment, I was strong for him. I wept when we parted ways. Following that test, he was connected to care and put on HIV medication. Once I got into the public-health sphere, that became a regular trend. Every time I gave a positive result, it hit me—hard. One day, I finally snapped and broke down. My coworkers even held a mini intervention with me. I finally realized, through therapy and psychiatric evaluations, that I had yet to face the trauma from my own initial diagnosis. All that weight got too heavy. The “bag lady” Erykah Badu described was me.
I never realized what trauma was, and how it can impact someone and how they operate on a day-to-day basis. I reached my breaking point after many years in public health delivering reactive tests results, seeing friends and community members die of complications to AIDS, and just taking care of everyone but myself. Burnout is real. Especially when you’re internalizing the emotions, barriers to care, and mistrust in the health care system you are working for.
When You Are Both Employee and Client
People living with HIV who also work in public health are constantly in this dual role, as an employee as well as a client. We must take care of ourselves in order to live a healthy life with a chronic condition, all the while making sure we have a job to keep a roof over our head and food in our stomachs. Every three to six months, we see our case manager as well as our doctors, and we get labs drawn two weeks prior to those appointments. Mind you, those same people are our coworkers. While that is happening, we are testing, doing outreach, attending trainings and conferences, and continuing the effort to end the epidemic. We have a lot of shit going on, basically.
Day in and day out, you’re trying to be a resource to someone with the same chronic condition as you, yet the story of longevity to a healthy life may not be the same. That person may not have hope or drive. Hell, that person may not want to take a pill once a day as a reminder they have HIV. What do you do then? You can’t make it all about you and how you handle your diagnosis if you’re trying to practice holistic care. So, what do you do? You meet that client where they’re at, which may be uncharted territory. In that instance, you need to check all the privileges you’ve been afforded at the door, like I had to learn to do. Dealing with this disease is a case-by-case basis. Everybody—and every body—is different.
For me, when a client gets that initial result and they go into shock, it puts me right back at that clinic table. With water in their eyes, they look at everything but you. This is followed by a multitude of questions, ranging from, “When am I going to die?” to, “Who do I have to tell?” and, “Are you sure there isn’t anything wrong with the test?” You answer them to the best of your ability, with the intention that your vulnerability and transparency give them the same vision of hope you see. Again, for some, that may not be realistic. You can preach undetectable equals untransmittable (U=U, which as of late has had its own uphill battle in the community), but that positive message may conflict with the scary reality of HIV nondisclosure laws, depending on the state you’re in. It’s regular protocol that once a person tests reactive to HIV, that the counselor must inform them about the laws put in place dating back to the late ’80s and early ’90s that say if you don’t tell a sexual partner you have HIV, you can be sent to prison. Yet again, we’re supposed to prepare them for the societal stigma placed upon HIV that we ourselves, people living with HIV, face everyday and still must find new ways to combat. We just presented another barrier we have not collectively broken.
The client in front of us—their life just changed in under an hour. In that moment, we want to give them all the resources, knowledge, testimonials, and referrals that we have, to the point that it is overwhelming. In doing that, we sometimes can forget to ask, “How are you feeling?” If we’ve been doing this work a long time, it ends up sounding like a record player on repeat, with no empathy or client-centered conversation.
Truth is, I’m tired. I walked away from the public-health field for a year to focus solely on my art. When I moved to Atlanta, that’s when shit got real. That’s when I came face to face with every single barrier folks living with HIV in the Deep South experience. It was stressful, heartbreaking, and enraging. It made me question why agencies don’t prioritize people living with HIV. We are the experts! But simultaneously, we are the scapegoats, tokens, poster children, and employees (which holds more weight than being a client, and more liability). I wanted something for people living with HIV that I didn’t want for myself at the time. I couldn’t get comfortable between a rock and a hard place.
Acknowledging Your Own Struggles Is the Best Way to Empathize With Others
What I’ve learned over the course of my time living with HIV is that in order to do this work, we must become whole, healed, and constantly hold ourselves accountable in order to walk alongside our community in this fight with the realization that sometimes this work isn’t for you. Self-care is constantly preached in this profession, but admit it: We are the worst at self-care. We take our work home with us, because we are the work. We are the client in one way or another. That’s why it’s imperative to keep yourself full and let people know when you need to be filled. Therapy is a must for me nowadays, and social media breaks or unplugged moments are needed from time to time.
Aryn Prince, the media marketing strategist at He Is Valuable, Inc., said, “Taking this moment to acknowledge the brave space we are forced to create regarding navigating relationships, friendships, careers, and health. The HIV epidemic stole many of our possibility models from us, and we are reliant on peer guidance to understand healing justice.”
That made me realize that all we truly have is us, community. Yet even with all of us, there’s still folks who feel alone. Who feel burdened by this diagnosis but still want to put up a fight to end AIDS. Most of us got into the fight, publicly or privately, with no toolkit—which made us grow up, fast. Healing is one hell of a process, especially if you’ve never grieved properly. You can’t heal what you don’t reveal.
It’s never easy to get bad news. It sucks to be the messenger of it, too. In a sense, I’m thankful that I can be some sort of possibility model to a person newly diagnosed with HIV. Some days are heavy, some days are draining, and some days are fulfilling and purposeful. But my best days are days when I tried my best to make a difference in someone’s life after making a difference for the better in mine. I’m no walking manual on how to live and thrive with HIV, but I am an example of what HIV looks like while not forgetting the shoulders of those I stand on who have died in this fight, so that one day, we no longer have to give those positive results—or receive them.