Like Bear and Jerry I'm a member of the Methuselah club. Diagnosed in 1985 at the height of the AIDS panic -- and trust me That's a Story and a Half. As best as we can figure, I caught it between the fall of 82 and spring of 83. Like others, I also got the "go home and put your affairs in order" speech. Certainly my experiences were very different than yous will be.
I can relate to the "I'm going to die" thing. It really wasn't until about 2000 when we really knew the multi-drug "cocktails" were truly working, and that we might live out close to a normal lifespan. Before that, every news story that mentioned life expectancy told me "You should already be dead!"
How things have changed. I've recently seen reports that we Pozzies may actually outlive the average man. Why? Because we tend to be more health conscious, and take better care of ourselves. We see doctors regularly, and if we note some change, we point it out, and it's addressed. The average guy sees his doctor once a year, ignores that there is something different, and hopes it will go away. He may not even mention it to the doc until it gets really bad.
I've done a lot of peer counselling with newly diagnosed guys. In my experience, it seems to take about two years to get comfortable with the diagnosis. Before that, every sneeze, every cough, every cut that seems to take too long to heal, brings up the "Is that IT" thoughts. And the "I'm going to die - My life is over" mind frame pops in frequently. Eventually it really does become just a part of you - like the color of your eyes. I'm not being trite. It will always be there, and affect some things you do. It just won't be at the top of your mind all the time.
You go through bouts of beating your self up, and other times when you are totally OK with it. They will resurface again and again over the years, but they won't be as bad as they are now. It really IS a grieving process and takes the amount of time, that is the right amount of time, for you. Everyone is different.
I'm going to start by saying try changing some of the internal talk. When the "BAD ME" stuff comes up, try to replace it with something better. Remember, you were Responsible enough to get yourself tested. You are Taking Care of yourself. You are seeing a Doctor regularly. You are going to go on Meds. That is also something very Responsible, because, as you pointed out, it makes you far less likely to pass it on. In the developed world this hasn't been a "deadly disease" for a long time. Yes - dangerous if left untreated, but otherwise a chronic manageable condition. Scratch the "deadly" from your mind.
Thankfully I live in a place where I receive my HIV meds at not cost. I can't imagine the mental and financial stress you guys in the US face. I know I would probably have perished long ago, if I'd had to pay for them.
Undetectable is the ideal goal, and most people get there within six months. Not everyone does. We have to be careful and not stigmatize the guys who aren't there. Their particular variant of the virus, problems with side effects, or adherence due to "life situations" can cause it. But they are still part of US - The Poz Guys.
Do you want to know how routine the meds can become? I had to go to those 7 daily dose pill cases. I was having trouble remembering if I'd taken my meds, even though I already had. Taking them was such a non-issue that I didn't even remember doing it. Maybe it's old guy brain, or because I just take them without thinking about it. They stopped being a daily reminder of my status a long time ago.
On the subject of a "cure" that's debatable. HIV hides in so many differnt places in the body, they may never be able to totally clear it out of our systems. They may get to a "functional cure," where the virus is still there, someplace, but not reproducing, and no need for daily drugs.
Think carefully about which family and friends you tell. You really never know how someone will react.
Unfortunately there are places where you will have to reveal your stats for the rest of your life. Every time you have a new doctor, dentest, or any kind of medical procedure it comes up. As we get older we have more and more of those kind of tests. Medial staff who you think Should know something about HIV, know nothing. They always want to know what medications you're taking. So it comes out in that.
For example, three weeks ago I got second degree frostbite on six fingers (yea brutal winter here too). I called the provincial health line and spoke to a nurse. Needed to ask, should I go to emergency now, or just see my family doc tomorrow? List all the meds (I take other stuff too - antidepresants, high blood pressure . . .) "What are you taking the antiretrovirals for?" Which of course led to a whole other series of questions. CD4 count just over 500. "Have you ever been told you are imuno-compromised?" Explain to the nurse that docs don't condsider it a problem till CD4s fall below 200. Then "Oh - I have to go talk to my supervisor." Arm yourself with enough knowledge to educate the medical staff you deal with. (Yes the fingers are healing, but damn they hurt with all this typing I've done.)
Ever new doctor you see will ask, "How many people have you had sex with?" I used to answer with a guess. I've recently decided IT'S NONE OF THEIR FUCKING BUSINESS. Next time I'm asked, I going to retort with "How many have you? Does this question have any relevance to the topic we're discussing? Is it just pruient interest on your part? Are you trying to imply I must have been a slut? People who have only ever slept with one person can get it. I know a guy who has slept with 10 people, but only twice without a condom. He was the less risky insertive partner (top), and he's now Poz." That should shut them up.
One issue that will probably never go away is fear of disclosure, and feeling ostracized by the Stigma. Browsing a hook-up website can be like flogging yourself with a mace and razor wire. I've certainly had nights where I was almost in tears with "nobody will ever want me" thoughts. All the "Clean U B 2," "Unclean," "D & D Free," "Healthy," "Hygenic," "Neg Olny," Turn Offs listed as "Poz guys" and "Diseased" -- It grates on your nerves. They objectify and dehumanize us as just "The Infected" "A Disease" - not human at all. Though I admit I did at least get a smile out of "Walking Petri Dishes."
I'm not proud of the fact that I sometimes play "Don't Ask - Don't Tell." I have never lied if I've been asked, but I don't always bring up the topic. With every hookup I go through complex mental math. What's my level of self confidence today? Can I handle a really nasty rejection? Will it make me feel like I want to throw myself off a bridge? How badly do I want this hook-up to happen? Do I desperately need that life affirming human contact, even just a cuddle? If I'm thinking "it might be fun, but I'm not really into this guy," I sometimes use revealing status as an escape valve. How much do I trust the guy? Will he start a whisper campaign with my most personal, private piece of medical information? How much do I like this guy? Don't take that as "if I don't like a guy I won't tell him." If I really like the guy, and I really want to get to know him better. If I think there is potential for him becoming a true friend, a regular fuck bud, or the all illusive relationship material, I feel I MUST tell him before the first time. If I wait till later, I think I loose all credibility for being trustworthy, and destroy any potential for taking it further. If it is defiantly a one night stand, I probably won't tell him.
Behind the keyboard it's relatively easy to say you're Poz. It still ties a knot in your guts. As soon as you do reveal, recognize that you most likely not getting any play time. Be mentally prepared to switch to education mode, because the ignorant slob doesn't know a thing.
In person it's much harder. I've seen intellegent, reasonable, logical, educated people, turn into raging assholes when it's brought up. But no matter how gently they let you down, it stil wounds. I hit back with: "Next time a guy tells you he's Poz, before you give an answer, say 'Thank you! I know that was very difficult for you to tell me.' There are only two reasons a guy will state he is POZ. He is showing his respect for you, and hoping to earn your respect in return." If you I got rejected, I add "Clearly you're worthy of neither!"
Watch this
to see how revealing status conversations usually go. You might not find it BB friendly, but it really shows the Neggie circular logic. (Can't fallow the link? Search YouTube for a video called DDF.)For some reason the first thought that enters the mind for a large portion of Neggies is "You're mad as hell at the world for getting HIV, and you're trying to get even, by infecting as many people as possible." I always wonder about those guys. Is that what they'd do if they got it? They thought of it first. Remind me again, which one of us is supposed to be the sociopath?
The real truth is, it is the "Clean U B 2," D & D Free," haven't been tested in over a year (or maybe never) guys, who are Poz and don't know they are Poz, that responsible for about 85% of transmissions in our community. About 10% are from guys who know they are Poz, but are not under treatment. Virtually (and maybe even totally) none are from undetectable guys.
On Monday of this week the preliminary results from the European "Partner" study were present CROI 2014. (Conference on Retroviruses and Opportunistic Infections)
The European based Partner study is following a large number of couples in mixed HIV status relationships. We sometimes get cutesy and call them Magnetic couples, because it's a relationship where one person is HIV Positive and the other is HIV Negative. The medical terms used to describe them are Serodiscordant or Serodivergent. The study includes both gay and straight couples. Before this study there was very little research of HIV in gay relationships or anal sex, and none with enough data to draw statistically significant conclusions. All of the Pozzies in the Partner study have an undetectable viral load.
NONE of the HIV Negative partners contracted HIV from their Poz partner, in the first two years of the study. With an estimated 16,000 gay guy bareback fucks (and 14,000 straight ones), ZERO Negative partners caught HIV from their Positive spouse. Including the straight couples, with a cumulative 894 Years of couple following up, there was not a single transmission from the Poz mate.
Based on the number, and type of sex acts, had the Pozzies not been under treatment, the researches would have expected 86 (30%) of the neg partners to catch HIV.
Before we celebrate that as a carte blanche in BBing with neg guys, they are about 95% certain -- their "best guess" is we are 0% likely to transmit. They don't have enough data to get that certainty higher, especially for Poz top cum dumping in a Neg bottom. The outside edge of that statistical certainty means, there is a 32% chance of the Neg bottom becoming Poz withing 10 years. They need 450 more European gay serodivergent couples, and study until 2017 to get that certainty higher. They will probably Never be able to say absolutly zero chance.
But it does gives us hope. And it will give us BIG GUN ammunition to figt back against the Stigma.
There is a certain irony in the fact us guys, who the neggies are most afraid of, are probably going to turn out to be the ones least likely to infect them! Our status is 100% known verses all the "think they're neg" guys. Many of them don't test regularly, if ever.
Fifty percent of the guys who have ever been tested, haven't been tested in over a year. 20% have never been tested. In the guys under 25, 40% have never been tested.
The only person whose status you can be 100% certain of is the guy who tells you he is POZ!
Stick that in your pipe and smoke it, Pozaphobes!
Ok - So I went on a rant. Sorry! (How Canadian of me to apologize.)
Poptronic, I've got lots of knowledge and lots of resources. If you want to chat sometime, let me know.
