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What Living With HIV Is Really Like
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To say that living with HIV was a serious life adjustment would be the understatement of the century. My entry into life with HIV was frightening, chaotic, confusing, and overwhelming. Outside of navigating the health care aspects (such as finding the right doctor, identifying a successful treatment regimen, getting bloodwork and other routine necessary screenings done), there were also plenty of other things to consider. Coming to grips with and accepting an HIV-positive diagnosis is an ongoing, ever-evolving process. Add to that figuring out how to disclose your status to family, friends, etc. and it becomes an even more complicated and tangled situation.

Even more than 30 years after the onset of the HIV epidemic, sometimes I’m outright saddened by how little attention is given to the importance and the need for mental/emotional health services for anyone living with HIV, especially when it comes to newly diagnosed individuals. Looking back after nearly 17 years of living with HIV, I can see the stark contrast between how I handled the stressors and difficulties of being newly diagnosed in 2004 versus how I learned, over time, to address, acknowledge, and accept all that came with life on this side of HIV.

I began seeing a therapist in the spring of 2008 at the insistence of my HIV care doctor. While I had already been living with HIV for about 3.5 years by then, I had not yet overcome the hurdle of taking HIV antiretroviral medication for treatment purposes.

I can now see how my doctor at the time knew just what I was about to embark upon by starting HIV treatment. I have vivid memories of her very slowly (in the beginning) suggesting that I begin to think about seeing a therapist. Most of the time when she would mention this, it would go in one ear and out the other. After all, I wasn’t crazy, so I didn’t need to see a therapist (which was my thinking at the time).

Gentle nudges and mentions of therapy transitioned into not so gentle nudges from my doctor by early 2008, when the treatment aspect became more of a reality and less of a “consideration.”

As I recall, she explained to me that with beginning treatment and taking actual HIV meds, there would very likely be a mental/emotional rollercoaster of sorts that I would find myself on. One way to help manage all of that would be finding someone to talk to -- a medical professional who would be able to help me unpack and experience those feelings -- in addition to everything else my life encompassed at the time.

The reason I remember this period so vividly is because by March 2008, when I started taking a three-in-one combination antiretroviral treatment regimen, I would experience waves of negative emotions daily.

It was then I understood that the 3.5 years I had already been living with HIV were only the beginning. Once I started treatment, it was as if everything became even more serious, real, and heavy. I quickly started to grasp why my doctor had been so insistent about me seeing a mental health professional on a regular basis.

Within a month of beginning treatment, I found myself sitting in a therapist’s office starting a process that I now honestly don’t know how I lived without prior to 2008. As reluctant as I may have been in the beginning, that all quickly changed when I started to recognize a shift in my thoughts, feelings, and overall daily moods as my body continued to adapt and adjust to the new treatment regimen. After the first few sessions with my first therapist at that time, I began to look forward to the 50 minutes of private time I’d have allotted with him to talk specifically about me, my feelings, etc.

I share this recollection mainly because it was just one of many pieces that made up the jigsaw puzzle that is living life on this side of HIV. Much like everything else that makes up our shared life experiences, when it comes to HIV, the pathway to “smooth sailing” is paved with a lot of bumps, bruises, roadblocks, and discoveries. There will always be a lot to unpack, consider, work through, embrace, and accept.

For those of us in the driver’s seat of this particular journey, the ongoing work is to be unflinchingly honest with ourselves (and with those closest to us) about our needs, expectations, and most importantly, boundaries. In the long run, being extremely gentle with ourselves as we navigate a wellspring of the new and unfamiliar doesn’t hurt, either. 


Photo Credit: Westend61 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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