Thriving & Living With HIV: Nathaniel Holley's Story

Patient InsiderHi, I'mNathanielI’m not surviving -I’m thriving living with HIV.

My life changed in that moment

When I got my test results, it was like the person that I was before died. I felt like all I had achieved went down the drain in a second. And my question was: what do I do now? I didn’t know. For that first year, I didn’t tell anybody.

Finding a local organization saved my life. I was in treatment. I was undetectable. Through educating myself, I gained a new sense of self. I shed that heaviness and started to share my story. I didn’t want to live separate from what my reality was. This is my reality, and I want my reality to shine through.

Don’t let stigma kill you.

Building my circle of care

I grew up in a house with two women. So when it came to my body, I didn't talk about it. Going to the doctor as a child, my mom would be right there. I wasn't asking questions. I was like, "Child, I'm fine. Take my temperature, hit me on my knee, and let me go."

So I didn't realize that my doctor is part of my circle of care. I needed to ask questions.

Not every doctor is perfect, and not every patient is perfect. We have to try on both ends. There is medical mistrust – barriers we carry when we walk into a doctor's office. Has this been tested enough? On my demographic? Unconscious bias can create a negative first experience. And as patients we have to let the doctor know what’s happening. They have the tools to put it together, so tell them if you’re waking up in the middle of the night, if your urine is too dark. Something may be out of whack and they need the full picture to help you.

I ask my friends, did your doctor ask you this? Did your doctor ask you that? No? Okay, put these questions in your phone for next time. When you leave out the doctor’s office, you should know: where your cholesterol is, your A1c, your CD4. You need to see what your immune system is doing. Understand it, so you can look at your labs and ask, “What do I need to do? Change my diet? My sleep pattern? What do I need to shift?”

I encourage you to continue to try to find a doctor you feel comfortable with because you're worth it. Your life and your optimal health outcome are worth it.

Finding the right treatment

I was on three pills every day, paying out of pocket, but I just thought that was what I've got to take. I didn't know there were options.

Through working in the HIV community, I realized there were newer drugs. We owe it to ourselves to take advantage of those advances. I told my doctor, "I want to try one of the new drugs.” I was specific. Honestly, it was game-changing. I was back to myself.

Look, if you're stuck in old information, you're going to be given old information. So I need you to update just a little bit, sis.

Counseling changed how I saw myself

Counseling sessions not only helped me deal with my diagnosis, but all the things that led me to the diagnosis.

My therapist gave me homework every session, like go take a walk by myself and envision what I would want my ideal life to be – even if HIV wasn't a factor. She encouraged me to dream.

So if you need to go see a psychiatrist or therapist to help balance you out so that you can show up as your best self, then girl, please go do that. I encourage that, because we have these tools around us.

You don't have to let stigma kill you. You can still be desirable, you can still be loved, you can still be successful, you can still be a change-maker, and you can still be a dreamer. All of that while thriving with HIV. Tell yourself, “I'm not subjected to just deteriorating with this. I can still live a great life. I just have to want to.”

Own your HIV care

Let's figure out different ways to take care of ourselves. We have tools we can use all around us. Let’s figure it out. Without options, you can feel very overwhelmed. And that’s dangerous because when you feel hopeless, that’s when treatment adherence becomes an issue.

We have come such a long way. There’s going to be a time when we may not have this treatment fatigue, but for now, this is how we love ourselves. And if you love yourself like I love you, then you will take care of yourself the way I would take care of you.

You can still be loved – all while thriving with HIV.

My Reading List

Be a resource. Know what's going on. Here’s where I’d start.