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Heart-to-Heart: Mike's Story

In his own words, Michael shares his personal journey as a young man living with HIV.

I never really considered myself to be sexually "high risk." Throughout undergrad I was engaged in the LGBTQ nonprofit world pretty consistently. I was a gender studies major, LGBTQ studies minor, and had a role in our peer health education program. I was keenly aware of many of the health challenges facing LGBTQ folks, engaged in dialogue with peers around sexual health, and was consistent in maintaining safer sex practices in my personal sex life. In my circle of friends, I was the “overly cautious” one when it came to sex—the “uptight one” even.

I became infected with HIV in early 2012 while living in the UK. I was not diagnosed, however, until almost a year later in early 2013 while living in Atlanta. I was new to Atlanta and had decided that it had been a while since I had a routine physical, so I determined that I would start off fresh in Atlanta and get a whole blood panel done and just feel good about knowing I was healthy. Nothing about my sexual encounters over the past year prompted me to get tested—I truthfully never thought I was at risk or even needed to be worried. Yes I was sexually active, but I was safe in my sex life—at least I thought. I chose a primary care physician who was located right around my house. Ease of convenience was my guiding principle; I did not really inquire much about the doctor to see their record or history on working with LGBTQ* patients.

I remember getting a phone call asking me to come back into the office as the doctor wanted to talk about my blood work with me. I was convinced that it was something related to high blood pressure, as it runs in my family. The doctor dropped the bomb on me pretty quickly.  I was stunned. I ran through my sexual partners in my head quickly.

When had I been unsafe? Who could the partner have been?  Could the test be wrong? It had to be wrong!

I remember the doctor kept putting her head in her hands and sighing heavily. She really did not say too much but just sort of seemed confused about what advice to offer. She informed me that we needed to do some more blood work and had the phlebotomist come back in. Not once did she ask whether I was alright, whether I had support or someone to talk to, or someone to connect with. She probably spent a total of five minutes in the room with me before sending the phlebotomist in to take some more blood. The phlebotomist was the first person to ask me if I would be okay. Even having that one person sympathize with me and check in about my feelings was validating. Reflecting on the experience, I am pretty shocked by how the primary care doctor handled the situation. Was she not culturally competent? Was discussing HIV with me something she simply did not know how to do? Was she uncomfortable in the setting? At the very least, I was a 23 year old person receiving an HIV diagnosis in a new city with few friends and no family. She spent zero time gauging my feelings or thoughts or even my knowledge on what it meant to be HIV positive.

Given my educational and personal background, I had a working knowledge of HIV and knew that this was by no means any sort of death sentence and that, once medicated, I would still live a full, active, and healthy life. But what if I had not had this knowledge? What if this was my first time ever really thinking about HIV and what it means and how it would affect my life?  In reflecting on the experience, the actions of the doctor were pretty appalling to me and made a frightening and isolating experience only more frightening and isolating.

I remember getting to my bike and just crying. Who could I call? Who could I talk to? Should I open up to my family? Should I call a good friend? I had no one to talk to in Atlanta and no shoulder to really cry on or get support. I had already made it a year being positive and healthy. Could I just ignore it and keep on living as I had been? Could my positive status just be my personal secret? The first few weeks after learning my status, I felt alone and isolated. I was working at a restaurant at the time and my solution was to just consume myself with work, try to be around people as much as possible, and spend as little time alone as possible. Alone time = time to think. I didn’t want that!

Learning more about HIV also required thinking about it. I remember wanting to seek out more information, educate myself more, but even typing HIV into my search bar made me feel sick. Reading articles about HIV made it all feel too real. I remember seeing POZ Life magazine at a local bookstore. I wanted to pick it up so badly but it felt as if every eye in the bookstore was on me. Picking up the magazine felt like an admission of guilt, alerting everyone in the space to my positive status. Even gay spaces suddenly felt foreign to me. Spaces where I had felt free to be myself, where I had celebrated being open as a member of a community that celebrated the diversity in everyone suddenly felt unwelcoming. My positive status, still my personal secret, felt like a marker of difference, something that pushed my worth as a gay male far, far down the hierarchy of gay male value. There was a deep-rooted feeling of shame connected to my positive status, internalized and omnipresent that I carried with me into every space of my life.

After the experience with the first primary care physician, I decided to reach out to an HIV specialist. I got connected with Pride Medical, the LGBTQ* primary care doctor in Atlanta. I had insurance and was able to be connected with this quality care—a privilege that many young people do not have. The folks at Pride Medical were amazing. They actually spent time with me talking about my feelings, making sure I had support and people to talk to, explaining the tests they were doing and how HIV works in my body, spending an hour with me in the room talking through everything. They validated my feelings of isolation and fright and helped me, through education, begin to move past the feelings.

I become more comfortable talking about HIV, more knowledgeable as to what was happening in my body, and confident in my ability to maintain my health and continue to thrive.

One of the tricky bits, which did not come out in the wash until later, was how insurance actually worked. I was clueless, to be honest. After receiving my diagnosis, my first thought was "get to a gay doctor, get to an HIV specialist." I did not explore my insurance coverage and what doctors were in-network and out-of-network and what the associated costs would be. Turns out, Pride Medical was out-of-network, with an accompanying annual deductible in the thousands. Learning to navigate the healthcare world was something new to me and something that I am still learning. I wish I had the knowledge to be a more critical consumer of healthcare early on and would have been able to critically vet my physicians for an LGBTQ*-competent doctor and be competent to navigate my insurance to ensure I was staying in-network and not accruing loads of insurance debt.

I remember when first learning about my status, my first thought was to blame someone other than myself. To point to a partner and say "they gave it to me!" thereby absolving myself from all responsibility. I remember thinking "well guess I am just unlucky!", yet another tactic to remove myself from any agency in the actions leading to my positive status. I have come to not only accept my positive status, but to embrace it. Embrace it as a platform to be able to tell my story, to educate, to inform, to help challenge the misconceptions the misinformed have about what it means to be HIV positive, and to what it means to be both HIV positive and a young person in 2014. That deep-rooted shame I experienced as a frightened, isolated HIV positive young person has taken time for me to confront and grow past in my personal life. I’ve educated myself, took control of my health and the virus, and have emerged a stronger person. I can say, with certainty, that HIV has hit a dead end with me. I hope that in sharing my story, HIV does not begin in another.

Click here for information on the HIV youth movement.

Click here to read Tranisha's story.