My Year as an HIV Patient

April 19, 2012

In 2011, I was “diagnosed” with HIV.   It happened at a clinic during a regular checkup.  I swabbed my mouth, answered some routine questions and returned to the lobby to await my ELISA test results.  I don’t remember her name but, a few minutes later, a serious-looking clinician called me back into her office.  I could tell she had prepared to tell me something serious that she was about to lay something heavy on me.

THE DIAGNOSIS

I imagined the different ways she could phrase it.

“Your test has come back positive.”

“I’m sorry, but you’re HIV positive.”

“Your saliva tested positive for HIV antibodies.”

All of the options contained the word “positive” but I knew that there was nothing positive about this.

She closed the door behind me and sat down in a chair next to me.  I was already numb.  I felt like I was floating.  I don’t remember exactly what she said, but it was prefaced with “Um…” The told me The News. I didn’t say anything for a long time. She then asked me, “What’s going through your head right now?”

An ex-boyfriend had an experience with a false positive. Friends of mine had had false-positives.  I’d read all about false-positive HIV tests and how prevalent they actually were, in spite of claims to the contrary.  She was ready to diagnose me – to usher me into some other world where I had to take drugs, check a box of medical conditions on patient forms and possibly never find love again for the rest of my life.  I would not be taken so easily.

I told her that I wanted another test.

This time it was the ELISA rapid blood test.  She pricked my finger and squeezed several drops of blood onto the next test.   She said that I was going to be okay.

“Because of the new HIV drugs,” she said, “people are living almost complete lifespans now.  This doesn’t prevent you from living a full, productive life…”

A few minutes passed. She looked at the test.  “The bands are already appearing.  This is going to be another positive.”

I asked weakly, “What about the Western Blot?  Don’t you need that to confirm?”

She shook her head and said, “Two positive ELISAs are pretty much a guarantee.”

And that was that.  At 25, I was “HIV positive.”

I could barely feel my body. Even my thoughts felt numb and far away. She asked me if I needed to cry.  She said it was going to be OK.  I made a vague but genuine statement about how it was time to take control of my life and make sure I accomplish my goals.

Her office was in a smaller STD satellite clinic of a larger HIV clinic, whose advertisements are posted throughout Los Angeles on walls, billboards and buses.  By night, the clinic tested men for gonorrhea, syphilis, chlamydia, and of course HIV.  By day it was a crowded, bustling HIV clinic checking people’s “viral loads” and “CD4 counts,” while dispensing the various medications to “fight the virus.”  When you test positive at the STD clinic, you get conveniently ushered into the HIV clinic and quickly walked through everything. It’s hard to notice that things seem off. But that would come a little bit later.

I was still in her office.  I had just been told The News. If I really was “HIV positive” – and there was nothing I could do about that – I wanted to be sure that I didn’t have anything else.  If I had any other diseases, they would be easy to kill – easy to control. I went through with the rest of my STD testing.

I passed the receptionist.  We had cheerfully chatted several times during the past year but this time, but this time he had fear and empathy in his eyes. He had been told.

In the bathroom, I peed into a cup. I returned to the waiting room, now empty, and I sat alone until called for another blood test – this time for syphilis.  The clinic had closed but remained open to accommodate my case.  The nurse, a Latino man who I had also chatted with during my previous visits, called me into his office.  I sat down gingerly in the chair before him, my entire body still numb and now stiff.  I couldn’t focus on anything.  Everything was blurry unless I willed it not to be.  I felt bare hands on my arm as he prepped the vein.  He wasn’t wearing his latex gloves.

“Don’t you tune out,” he told me gently. “You stay strong. You focus. You’re gonna be OK.  Trust me.”

I noticed the biohazard tattoo on his forearm when he stuck the needle into my vein.  He exposed himself to my blood because he wasn’t afraid of it.  It was a comforting gesture – that I was not some kind of leper now. That I was not alone.  But it also meant that I was like him.  I had joined the fraternity of HIV-positives.

That was last year.  I was 25 when I tested HIV+ in that clinic in Los Angeles.

GROWING UP

When I was 7 years old, I lived on a gravel road across from a cornfield in central Illinois.   Back then, HIV/AIDS was something I saw pictures of on TV and heard about on the news.   Our teachers told us about AIDS at school.  They described it as a bug that makes you thin and tired and covers its victims in sores before you die, quickly.

When sex education began in junior high school, we were shown pictures of horrible STD infections and told the only way to prevent this was to not have sex before marriage.  This was especially the case with HIV.  My teachers said that the virus particles were proven to be so small that they could slip through the microscopic holes in latex condoms and infect you.

Later, in high school, I went through that whole process where I realized I was gay.  I made new friends who accepted me.  I realized that I had dreams, goals and creative aspirations.  I became the first person in my family to attend college.  Doing so in Chicago gave me the education in the arts I needed to achieve my goals AND actually let me meet other gays.

Even though I was gay, and it was part of our “culture,” HIV never really entered my consciousness in a meaningful way until I moved to Los Angeles three years later.  I’ve found out that a lot of guys here “have” it.  And there’s a lot of fear of “getting it.”

Billboards all over the city warn the same thing.  One of them features a pile of drug paraphernalia along with the text: “Party too hard? Get tested.”

There’s a similar one featuring empty, overturned martini glasses with a line about having “too wild of a night.”

Billboards that target Hispanic and African-American communities talk about the importance of knowing your status.  Actors and athletes use carefully scripted marketing techniques that urge minority men to “Man-up,” as if being tested is somehow an act of machismo.

Here in LA, I’ve become aware of a whole culture of sexual guilt pervading the gay community, creating some very interesting attitudes among those who are sexually active.

There are the ultra-vigilant types who will never have unprotected sex with anyone, ever, sometimes even long-term monogamous partners.

  • Some guys deploy strategies to try and outsmart the virus but still have their fun. 
  • Others don’t really care whether they get infected or not.  They just don’t ask and let fate run its course. 
  • And then there are the guys who want to get infected.

Regardless of the attitude adopted regarding sex and HIV, all of them have one belief in common: contracting HIV is either worrisomely probable or absolutely inevitable.

In the case of the ultra-vigilant guys, fear is the obvious motive behind their attitude.

Fear is also obvious in those who try to outsmart the virus.  An ex-boyfriend once told me, “I’d be so mad if I ever tested positive.  I’ve been so, so careful about it…” As if his life were a race where the goal was to make it to the finish line without ever testing HIV+, with each quarterly HIV test a waypoint along the journey.

Once, a friend called me crying after a condom broke while he was having sex. I took him to the emergency room to get the PREP pills – a month long medication regimen that can supposedly prevent HIV infection if begun within 72 hours after infection.  He was terrified the guy he was with had HIV, even though he said he didn’t.  My friend paid $1,700 out of pocket for the visit and the drugs.

A few weeks later, a mutual friend and I joined him for lunch to see how he was doing.  He was sick from the drugs’ side-effects and seemed broken.  At one point, he dramatically stated, “I wish I could just get infected so I don’t have to worry about this anymore.” My friend and I busted him for adopting such a self-destructive attitude and that was the end of that. I hope.

There are the guys who react to the inevitability of getting infected by letting fate run its course. They ask for a partner’s HIV status, take his word for it and go about their business.  Another friend once said, “If they lie, I can’t do anything about it.” Some guys don’t even ask.

Last is the rarely mentioned subculture of gay men who actively seek HIV infection.  They view the inevitable HIV infection as something to take charge of – to attack it head on.

PARANOIA

Three months after my ex-boyfriend and I tested negative for HIV, we began to have unprotected sex.  I was 23 and it was my first significant relationship.  I fell in love very scarily, overwhelmingly fast.  We both assumed early on we would eventually get “married” (to whatever legal extent possible).  I had never met anyone like him – never felt I understood someone so well.  He was ambitious and sensitive, sometimes wise, usually worldly and always fun.  And I found him incredibly, incredibly beautiful.

He had a strange, nagging fear – one that he regularly expressed to me.   He was worried that one of us would end up being HIV+ and infecting the other.  He said that it was something that had happened to several of his friends.  He had heard stories about it.  This fear was in spite of the fact that we were monogamous.

I don’t suspect he ever cheated on me.  I don’t suspect there was guilt behind his fear. But he constantly expressed a worry was that we would infect each other and be stuck together forever.  The statement was weird, annoying, persistent and unsettling.

It happened six months into our relationship.  He had his regularly scheduled HIV test and, afterwards, behaved differently.  Three days later, we woke up in the morning around the same time.  He was unusually cold.  He said he had something to tell me.

“We’re going to be stuck together forever.”

I knew immediately what he meant.  I freaked out.  I went and got tested that day. My rapid ELISA came back negative.

Fighting ensued. I demanded to know how he got infected. He said he hadn’t been with anyone else. I believed him.

I had read and been told by friends about the possibility of false positive test results. It had happened to them. It had happened to their friends. My boyfriend admitted he had just gotten one rapid ELIZA test.  I demanded he go and get a confirmation test – that it didn’t make sense that he would test positive but I would test negative.

I was terrified and confused.  He wanted me to read pamphlets about “sero-discordant couples.”  I wanted to know why he was so sure he had HIV, and more importantly, why he was so READY to have it.  He wanted me to read literature about how it wasn’t so bad to be HIV+.

He said, “Most guys just take a pill a day and they’re fine…  It’s fine.”

For two weeks I waffled back and forth between compassion for “his condition” and distrust of his completely illogical behavior and the fact that the fear he expressed for months had somehow become a reality.  He finally, finally went back for another HIV test. At the end of our two weeks of fighting, he got the results back that he was HIV negative.  It had been a false positive.  But I was done with his craziness. We were done.

INFECTIOUS LIES

Even though I was free from living with his constant fear and erratic behavior, I fell into a depression for the next year.  In addition to losing all the intimacy I had come to know and the future I thought we were going to have together, I was barely scraping by financially and worked at a humiliating corporate job that was diametrically opposed to my values.  I couldn’t focus on my creative outlets. In lieu of drugs and alcoholism (fortunately I’ve never had a desire to abuse substances) I became incredibly promiscuous and sexually reckless.

I went and got tested for HIV and STDs regularly. I was actually worried each time though. Every visit ended with a sigh of relief. “Still negative. Thank God. Still negative.” But that only lasted for a year.

I became infected by the idea that I would get HIV before I ever actually got infected: Or more accurately, supposedly infected.

It’s arguable that homosexuals are statistically more self-destructive than heterosexuals, with rampant hardcore drug-use, higher suicide rates, etc. I won’t explore this, but the obvious culprits of early experiences as a social outcast that are common in the gay community – as well as a higher probability of gays having an artistic or creative temperament – paint a pretty solid picture of why this might statistically be the case.

However, after becoming exposed to, horrified by, and participating in the gay Babylon of West Hollywood and all of the decidedly un-Christian things that happen there, I was also surprised to learn that my heterosexual peers were having too much fun, with too many people, as well.

Gays have several terms for unprotected sex, but frat boys I’ve spoken to universally seem to prefer the term “raw-dogging.” And it’s a very, very common practice.

A girlfriend of mine recently admitted, “Yeah, before I settled down, there was a three day period where I fucked, like, five guys and took loads from almost all of them.”

Another friend had a sordid affair with a bi-sexual guy of questionable cleanliness.  While being grilled about the details, she admitted she never used a condom with him, and a girlfriend gasped, “You HAVE to get an HIV test.”  I got the impression the test was never taken. But I know that three years later my friend is showing no signs of AIDS.

Another friend of mine was embarrassed to admit that her main form of birth control was the pull-out method.  But somehow it’s worked for her for five years. And based on other conversations I’ve had, I’m led to believe that straight people are categorically having far more unprotected anal sex than any gays I know.

I bring this up because even though both the gay and straight youth of today are engaging in the same type of irresponsible promiscuous behavior, only in the gay community is it accompanied by the fear of catching “it,” and constantly having to check for “it.”

There is no actual gay handbook but, if there was, there would be a whole chapter on the importance of testing for HIV every three to six months. This rule is enforced both by gay peer pressure and all the marketing directed at us.  Most heterosexuals live their lives without ever having an HIV test; and there is certainly no social pressure to constantly get checked even when they are sexually active.  In Illinois, there was a brief period where HIV tests were required by law before granting a marriage license.  But because there were so many “false positives,” the policy was eventually ended.

The CDC has even announced that an HIV epidemic among American heterosexuals is just never going to happen.  But for some reason – and this is public policy – the ONLY people who need to worry about HIV are homosexuals, IV drug users and everyone who lives on the African Continent.

This is only the tip of the iceberg of suspicious HIV facts: facts that I have observed first-hand as an HIV patient, and as an observer of a social marketing strategy that specifically targets homosexuals and ethnic minorities.  The marketing strategy has constructed the following reality:

1. There is a deadly virus affecting only your peers that you must constantly verify you are not infected with. This is true even if you practice safe sex.

2. If you become infected, there is no cure for the virus (but there will be – soon!), and this is something you will have to live with for the rest of your life.

3. The only way to treat the virus is to take anti-viral drugs until the day you die.

4. There is no alternative to this form of treatment (even though mainstream scientists have never put much effort into finding such an alternative – and even though there ARE alternative treatments).

5. If you take these drugs, you will be able to live a long, normal life.

6. If you do not take these drugs, you will develop AIDS and die.

Since my HIV doctor told me I was HIV positive and told me that I needed HIV drugs to survive, I have found a wealth of evidence that every single facet of this manufactured reality is either grossly skewed to support the agendas of drugs companies who are making billions of dollars each year from what they call “disease management,” or simply false or unproven.

In the next entry, I will talk about my experiences with several L.A. HIV clinics, discuss the dangers of HIV drugs, my introduction to “HIV dissidence” and my exploration of alternative HIV treatments (some of which recently started to “work” for me according to HIV science).  I also plan to write about the ridicule I’ve endured from friends when I’ve shared these observations, the unfortunate amount of double-think exhibited by several HIV-positive friends on HAART, and fear of being treated by normal doctors because they’re not HIV specialists “can’t possibly understand my disease.”

I also plan to discuss my current and future work with OMSJ on this blog.

If you’ve tested positive for HIV, as I have – above all else, you must educate yourself, develop discernment and muster the personal authority to make your own decisions about your health and how you are going to proceed with your life.

One of the most confusing things about all of this is that your doctor, your friends and your family are all going to give you advice based on information that a large body of evidence is showing to be erroneous or false.  Even more confusing is that this advice (especially by friends and family) is being given because they care about your health. (Honestly though, especially if you’re at a free HIV clinic, your doctor is probably just concerned about getting you on HIV drugs to assure their organization continues receiving funding.)

By sharing my journey for the past year I hope my experiences and insights help you make the more informed decisions about your lives and give you a knowledge-base to ask questions right off the bat that I haven’t gotten around to tackling yet.

I welcome questions and urge you to write to me through the comments section of this blog or ask questions through OMSJ’s forum.

See also One Mother’s HIV Nightmare, OMSJ Intervenes – One Man’s Story, Selling Death and Drugs: HIV Patient Tells His Story

 

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