Why I Refused, Then Later Embraced, HIV Treatment
September 29, 2014
Sometimes, I just don't want to take my HIV pill. Even though the single-pill combination therapies, like the one I'm on called Complera [which combines rilpivirine, tenofovir and emtricitabine], are particularly easy to take and adhere to, taking my HIV pill is sometimes too much for me. It's just another thing to add to the list of life things that I get tired of doing.
I take it anyway, though. But that doesn't stop me from occasionally whining to myself, "I'm so over this HIV thing. Do I have to take it again?"
I know that it gives me more or less the same longevity as an HIV-negative person; I know that taking my pill will protect my sex partners and make it highly unlikely I will transmit HIV; and I know I'm among the vast majority of people who experience no side effects from it. I also know that my HIV medication and related health care are provided to me free from the state (like in most so-called blue states of the U.S.).
That last part is particularly important, because there is a direct link between adherence to HIV medication, which saves lives, and an HIV-positive person's overall social landscape. The U.S. National Institutes of Health says that non-adherence to HIV medications is oftentimes the sum total of multiple "behavioral, structural, and psychosocial barriers" including "depression and other mental illnesses ... low health literacy, low levels of social support, stressful life events, high levels of alcohol consumption and active substance use, homelessness, poverty ... stigma, and inconsistent access to medications."
For about a year after my HIV-positive diagnosis, I refused HIV treatment. At the time, I insisted that I had every right to make personal medical decisions for myself; while certainly true, this really was more of a rationalization for inaction in my case. In my case, this inaction was rooted in low self-worth and fear, and it was exacerbated by regular drug use.
Paradoxically, I coped with life, including my HIV status, by escaping with drugs and sex; but, by using drugs, my life got much worse. Gradually, my drug use increased the barriers to HIV treatment for me exponentially, and by the time I decided to go onto HIV treatment, I was homeless and my CD4 count was just around 300. Ironically, despite my having privileges like education and access to health care, I still managed to put myself on society's margins.
Where there is a self-destructive will, there certainly is a way. For gay men in particular, an HIV-positive status isn't just depressing: It's incredibly demoralizing. It means you "didn't pay attention" to all those safer sex ads in LGBT publications, you "didn't value your life" like those safer sex posters indicate in health centers. At least that's the stigmatic nonsense that ran through my head for a long while. So, I avoided treating HIV altogether because it allowed me to play with the idea of never having seroconverted in the first place.
That's to say it felt more normal, because becoming HIV positive after an entire life of being HIV negative feels strange. And, despite all the evidence indicating one's value as a human being, one's innate right to compassion, love and empathy from others and most importantly one's self, one still might have a case of the, "Yeah, buts."
"Yeah, but if I only wore a condom." "Yeah, but if I didn't use IV drugs." "Yeah, but if he didn't, we didn't." "Yeah, but whatever." I know I certainly had a case of the "Yeah, buts" for some time after I seroconverted.
I didn't have to think about this when I didn't take my pill. I wasn't reminded of my status on a daily basis. In an odd way, it almost felt like I was still HIV negative. Not quite, but almost, because I knew that bad things were going to happen the longer I ignored it. I ignored it anyway, though, and that is OK.
See, everyone has their own process, and everyone deserves the right to go through that process with nothing but support from friends, family and medical providers.
Still, there are obvious downsides to refusing treatment, including death, and it's important to understand the difference between offering guidance to HIV-positive people not currently accessing treatment and outright stigma-rooted finger-wagging.
"What about your partners?" one physician asked me during that year I wasn't on treatment.
"I can barely take care of myself, why am I supposed to be the guardian of other adult human beings?" I quipped. I wasn't really joking either, and I still feel some sense of knee-jerk offense at the notion I'm supposed to be on treatment for anyone but myself. Particularly if I disclose my HIV status to my partners, what obligation do I have to shame myself into medicalizing my life?
HIV/AIDS activist and author Sean Strub agrees, and he's succinctly stated that the "coercive" disrespect for "individual autonomy" by way of guilting or prodding individuals into HIV treatment opens the door "to tyranny, paternalistic or otherwise."
He's right, too. After I became HIV positive, the last thing I wanted to hear or see from a society that demeaned, marginalized and brutalized me as a queer man was more tut-tutting my way. Strub went on to say that "it is wrong for anyone to assume everyone who has HIV 'should' be on treatment in order to reduce infectiousness."
The notion of going onto treatment for others didn't matter to me whatsoever. What got me onto treatment was the idea that I was doing so for myself. Later, another physician put it to me bluntly that, even if my body was able to stave off opportunistic infections for awhile, it's possible, not likely but possible, that without treatment I'd develop AIDS-related dementia. That stopped me dead in my tracks: Losing my life to HIV or AIDS was acceptable to me. Losing my mind was where I drew the line.
When I started treatment, I grumbled a bit about it. I looked for side effects, and I blamed gaining weight on Complera. "Josh, that's not a side effect of this medication. Your weight gain is attributable to peanut butter," my doctor said. We both laughed, I shook my fist at the heavens and I continued to take my pill.
On good days, adhering to my pill is a positive affirmation of my life, an exercise in self-love. On bad days, it's just a pill I need to swallow, not terribly bitter but as mildly annoying as having to shave or tie my shoelaces every day. It's yet another thing to add to my list of things, but I do it anyway.
Curiously, when I consistently began to take my pill, I started to do other things that supported a healthy life. It didn't happen overnight, and it took a few field trips into self-destruction before I came around, but the point is that I eventually came around.
I eventually stopped using all drugs and found myself in recovery. I started to work out again. I began balancing proper nutrition along with my penchant for peanut butter. It was only attributable, though, to the compassionate and nonjudgmental viewpoint of that doctor who convinced me to go onto treatment coupled with my own acknowledgement that I have a right to exist.
Today, the physician who got me onto treatment is still my doctor, because she focuses on what's best for me -- not what's best for society, not what's best for public health, not what's best for the next HIV/AIDS fundraiser, but what's best for me.
And, when you have folks supporting you no matter what, it's a lot easier to start loving yourself.
Josh Kruger is an award-winning writer and commentator in Philadelphia. His work often focuses on HIV/AIDS, cultural stigmas and social problems. You can follow him on Twitter @jawshkruger.
Copyright © 2014 Remedy Health Media, LLC. All rights reserved.
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