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Opinion

Why I Refused, Then Later Embraced, HIV Treatment

September 29, 2014

Josh Kruger

Josh Kruger

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."

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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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This article was provided by TheBody.com.
 
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Reader Comments:

Comment by: Amy (Dallas) Thu., May. 26, 2016 at 2:51 pm UTC
Thank you for sharing your story. I just got tested, never have before and I'm 28 with about 30 partners and only about half I used protection. I'm just preparing myself for the worst as a coping mechanism but I've read several stories from hiv infected people. Yours is my favorite and it gives me hope. Thank you for sharing, please pray for me.
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Comment by: Greg S (Denton, TX) Wed., Jun. 17, 2015 at 2:18 pm UTC
As a person who has lived with HIV for nearly 30 years I am very happy to take my 2 pills a day. I nearly died last year due to opportunistic infections. Getting well is about me. Being sure I don't infect anyone else is my moral duty. I care about everyone who is HIV, positive or full blown AIDS like I have. I also care about those who are at risk. Living with HIV/AIDS requires behavior changes. I too at one time was not very adherent to my med schedule. A near death experience changed that behavior. New breakthroughs recently have given me hope that there might be a cure before this stupid disease gets me or the normal end of life occurs. 30 years ago there was no hope. Today there is.
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Comment by: Me (MM) Wed., May. 20, 2015 at 4:54 pm UTC
"I know that taking my pill will protect my sex partners and make it highly unlikely I will transmit HIV"... but you still take the risk of infecting others?
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Comment by: BAW (Charleston, WV) Thu., Nov. 20, 2014 at 2:25 pm UTC
As a diabetic, I feel the same way about taking my blood sugar pills and injecting my insulin.
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Comment by: David (Dallas, TX) Wed., Nov. 19, 2014 at 6:55 am UTC
While no one should force you into treatment, you obviously didn't live through the worst of the AIDS crisis. I stopped counting how many friends I lost when the number passed 50.

You may not have needed drugs to keep you alive for a period of time. Some people are long-term survivors. Others not so much and gambling with your life is your decision, but, as your doctor pointed out, you put the lives of others at risk.

I hope this piece helps others who don't remember that HIV can be deadly and that treatment wasn't always available. But I'm sorry if I find your whining immature and, quite frankly, ignorant.
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Comment by: Tony Lee (Atlanta, Ga) Tue., Nov. 18, 2014 at 10:35 pm UTC
Man take some Vitamin D3 organic and Emergen Vitamin C and drink Alkaline water and get healed and delivered.
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Comment by: Shane (Watertown, WI) Mon., Nov. 3, 2014 at 6:04 pm UTC
I'm a 19 year survivor of HIV and even though I'm only on 3 daily pills for it plus 2 for side effects and medications for anxiety and depression I still wish I didnt have to take them and I'm not the most adherent person around I'm just fed up with this whole HIV thing.
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Comment by: Mark Seydel (Warrington, PA) Thu., Oct. 30, 2014 at 11:39 am UTC
Josh,

I feel the same way. It took me 15 years and a T-Cell count of 68 to go on meds. I'm glad I waited and didn't cave to the pressure from society. I fell I am healthier for it today.

Great article. Thanks.
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Comment by: Wanderin Poet Wed., Oct. 29, 2014 at 5:02 pm UTC
That you are selfish enough to risk your partners life by rationalizing it as not being your choice, but societies is evidence to me that you need institutionalization.

Don't take your meds, I don't care. But don't risk others lives. That's incredible to me.
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Replies to this comment:
Comment by: James (Detroit) Thu., Oct. 30, 2014 at 12:09 am UTC
I don't know about that. It's not like HIV/AIDS is a disease no one talks about any more. It IS up to your partner to protect himself as much as it is your own. You know the risks, I know the risks and personally I treat every contact like hes HIV positive. Why everyone isn't doing the same is beyond me: what is incredible to me is that anyone is still getting AIDS.
Comment by: Melinda (Florida) Tue., Nov. 4, 2014 at 5:50 pm UTC
I agree with Wanderin Poet.


Comment by: Nancy (LA) Tue., Oct. 28, 2014 at 3:57 pm UTC
I don't have HIV/AIDS but I do have my issues, and I don't think that I've ever contributed my self happiness to reasons why I should remain on my medication, I've always thought about everyone else in my life, so that I wouldn't be a burden to them. I still find myself conducting negative habits, just to get me-away from me, if that makes sense. So sounds like I need to probably focus or find more reasons as to how staying on treatment would best benefit me.
Vet/OEF VII/IX
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Comment by: phillip r. (Los angeles) Sun., Oct. 5, 2014 at 7:52 pm UTC
@David/Tom I'm so sick and tired of this Now called 'TeamPharma thing. It's like the HIV doesn't cause AIDS movement in the 90's by some crackpot 'professor' I was found to be poz in 1984, 6mos after the FDA approved the test at the UT Dental school. Started meds 01/90. Yep, AZT 3X daily. Took them all as they came along. It shows, no butt, small hard belly. I can't go back and un-take all those meds. So what?
we're talking 30yrs poz here. That Dr in Houston told me a couple at most. Did some quick thinking at times and even subterfuge to keep myself covered for meds until I finally had to make the move to SSDI. Even that was a 'Last Resort/Life Boat' only option left move. Look, not EVERYONE gets EVERY symptom of HIV. That's impossible. Re neuro complications. R U speaking of psych or physical? I have minor neropothy in my feet. So do Diabetic PT's I have Heart disease. So did every one of my Fathers brother's and sister's. HIV maybe made mine show up a little sooner. I had both hips replaced due to bobe degeneration. HIV had nothing to do w/that. Have had asthma since a teen and since my late 20's have used Prednisone on untold times to control asthma flare's. So yes please, give me Big Pharma AND big Hospital Systems. I could well be at least the Two Million Dollar Man by now. Me. Ha! BTW, Thanks Gus Cairns, there's 1000% too many Josh's still out there needing to come in. .
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Replies to this comment:
Comment by: Tom Wed., Oct. 29, 2014 at 3:18 pm UTC
You're not actually trying to pretend that the interests of our business model of medicine and your own survival have been anything but coincidental, are you?


Comment by: Mark S. King (Baltimore, MD) Wed., Oct. 1, 2014 at 10:12 am UTC
Funny how differently people can view the same words. Not only does Josh only mention his particular medication in passing within a fairly long article, his entire point is that taking meds has got to be an individual choice based on that person's ability to properly take care of themselves. And his journey with HIV sounds anything but "easy."

This is a thoughtful and well-written rumination on how taking our meds affect our attitude toard living with the virus, and I learned some things here. And hey, anyone who quotes the always thoughtful Sean Strub is okay by me.
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Comment by: Gus Cairns (London UK) Wed., Oct. 1, 2014 at 9:29 am UTC
Wonderful piece, moving and covering the issues in a really honest way. I love the way that you understand that putting off treatment was associated with denial and low self-worth but that also pushing you into it wouldn't have made any difference. You needed that year to come to terms with your status. Doctors too often try to strongarm patients into treatment, because of their training but patients who start reluctantly won't adhere. I speak as someone who 'sacked' my physician in the bad old days when he kept trying to get me to take AZT.
At the same time, while I agree with Sean that "it is wrong for anyone to assume everyone who has HIV 'should' be on treatment in order to reduce infectiousness." I've also come across the opposite situation, where people with high CD4s get refused treatment who want it to protect their partners. Wanting to render yourself non-infectious isn't just an act of social altruism: it may also be experienced as a profound liberation by some people with HIV from guilt, anxiety and the obligation to disclose, and that, as well as consideration for my own health, was certainly a major motivator of mine for not coming off treatment.
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Comment by: Tom Wed., Oct. 1, 2014 at 9:03 am UTC
The sad thing is David, that Josh is one of the more nuanced members of TeamPharma. Despite his obvious financial needs, he's one of the few I don't personally believe is literally receiving a large check from a drug company. There are people in that camp who don't even acknowledge why it's wrong to suggest we should all be on medication for other people's benefit. I've actually seen one internet superstar post a comment on the web page of someone who was forced to forgo medication, proclaiming ARVs are important to "protect (his) partners". As if, you know, the whole "avoiding AIDS and dying" thing were somehow a secondary concern, and this guy needed more motivation than his own health to get back into these overpriced shackles.

Yeah, Josh is provincial (going on about how easy it is to get HIV care when for most of us it is not). Yeah he's deluded (insinuating that medication in and of itself stops the neurological complications of HIV). Yeah he ignores the potential complications of a post-condom world as if its all no big deal, stigmatizing HIV as a unique disease along the way. At the end of the day, he at least shows significant capacity for independent thought and compassion towards those of us who actually have the virus. That's light years ahead of what the rest of The Movement has become since morphing gears into a glorified informercial for antiretrovirals.

"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." This quote needs repeating. If a physician trots out concern for other people, fire them immediately. They are a terrible doctor as you are paying for your healthcare, not other people. Until "Other People" start giving a sh!t about you (which ain't gonna happen when you're poz), you have no obligation towards altruism.
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Comment by: David Tew (Shalimaf, FL) Mon., Sep. 29, 2014 at 9:11 pm UTC
Sorry, but this "testimonial" reads like an advertisement for a product. It's simply untrue that being HIV-positive is this easy. HIV is a terrible disease, and meds don't allow one to live the life of a person with HIV. That's just simply not the case.
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Replies to this comment:
Comment by: Gregory Freeman (Melbourne Australia ) Thu., Oct. 2, 2014 at 9:33 pm UTC
I agree, with you David. This sounds, like an advertisement from Team Pharma. HIV is a terrible disease, combined with many new diagnoses that are co-infected with Hepatitis c. Here in Australia - There is a certain level of care, provided that you agree to being a guinea pig and when you attempt to live a HIV lifestyle, clearly as Josh illustrates, in his piece, It becomes a monotonous lifestyle. I found, that HIV providers, here in Australia, sound very much like the illustration, that is provided, by Josh, in that a lot of tut tutting, occurs and guiltily into medication regimes. then comes the other HIV positive people in Victoria Australia. Which these people are whole other matter of admonishment.


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