When I tested positive in the spring of 2005 it felt like the end of the world. HIV was this boogie man that I had been taught to hate and fear since before I really understood how sex worked, and suddenly this monster was inside of me. I was sure that I had been handed a death sentence. Not only was I going to die, there was a part of me that wanted to die. Because who could love a man with a monster living inside of him? How could such a man ever find happiness? That was almost seven years ago, and my life clearly isn't "over." I have great friends, an adorable dog, and an awesome fella who loves me. But to get here I had to walk a long hard road littered with guilt, depression, and more than a little self destructive behavior. It's my hope that the advice below, lessons learned the hard way, might make your life a little easier.
- Your life has become more complicated, but it isn't over. In fact I'm happier and healthier than I've ever been. Which isn't to say having HIV is "easy," it isn't. There are pills to take, and doctors to visit, and more than a few awkward conversations ahead of you. It's gonna be some work, and at times it going to suck, but it's manageable.
- Go to the doctor. After getting tested, this is probably the single biggest hurdle facing the newly diagnosed. I know how intimidating that first doctor's visit can be, but it is the first step to taking control of your health and your life. Your testing facility probably directed you to a doctor in your area, if not your local LGBT center should be able to direct you (if you don't have a local LGBT center, please consider point of advice #7). After your diagnosis you are probably going to be in a state of semi shock for a while (i think mine lasted months) so bring a note pad to your first visit and/or ask the doctor if you can record the meeting so you can go over it again later. You should also be prepared to give blood, lots of blood. Get used to it, this is going to be a regular event.
- Decide if meds are right for you. Some people want to put off taking antiretroviral drugs as long as possible, and others might start medication right away. Unless your numbers are bad (i.e. your viral load is very high, or your Tcell count is very low) the choice will be largely up to you. This can be a very contentious issue, with both camps making very passionate cases. I started taking meds almost a year after my diagnosis, largely because I was in a relationship with an HIV negative man, and i wanted to minimize his risk. But this is a very personal choice that should be made between you and your doctor, and i would never presume to advise anyone one way or the other.
If you do decide to start taking meds, remember that it's a commitment. To be really effective your pills will need to be taken every day and a regular time. If you skip days, or take your medication erratically your virus could adapt and your doctor will have to put you on a different (often more complicated/pill heavy) regimen.
And don't let poverty or a lack of insurance keep you from treating your HIV. ADAP (the AIDS Drugs Assistance Program) was designed with us poor kids in mind. But be advised, many states have waiting lists (see #7).
- Decide who to tell, and when. As far as I'm concerned you have an ethical obligation to disclose your HIV status before having sex with them (and in many places, a legal obligation), even if you are using a condom and you have an undetectable viral load. If you don't disclose, and they find out (and they will), they will feel betrayed. Which will be all the more agonizing for everyone involved if you guys have started to have feelings for one another. ... You should also tell anyone you've had sex with in the last few months, even if you think they have nothing to worry about. The conversations might be awkward, but they will most likely appreciate the heads up. Other then that don't feel any pressure to tell your friends or family until you are ready. But know that it is in people's nature to talk. So once you start telling people, word will get around.
- Be prepared for rejection. It's shitty, and it hurts, but it will happen. And when it does try and understand that it's not you he's rejecting. He's (probably) not a bad guy, he's just scared.
- Find your peers. I know how scary and isolated you feel right now, but you are not alone. Seek out other poz folk who you can relate to, who you can talk to. Any fair sized city will have multiple groups you can join. Check with your LGBT center (and once again, if there isn't a LGBT center close by, consider item #7)
- Consider making a move to a big city. I would say this to any HIV+ person living in any area to rural or impoverished to have a LGBT center, even if your state doesn't have a waiting list for ADAP. Any urban center with a high concentration of gay men will; Los Angeles, New York City, or the San Francisco Bay Area have the largest poz populations and the best facilities for dealing with HIV health issues.
- Don't let the virus get past you. As devastating as it is to find out you are HIV+, that's fuck-all compared to the guilt and heartbreak of knowing you gave it to someone you love. Having HIV is a serious responsibility, and we have a sacred duty to keep it out of the bodies of our loved ones, and our community.
- Forgive. Forgive the one who gave it to you, and forgive yourself. This is the way things are now, and no amount of anger or blame is going to change that.
- Have hope. Not only has one man been functionally cured of HIV, there are several potential (more practical) cures over the horizon. This is an amazing time to be alive! And I have every hope that we will see the end of AIDS in our lifetime. Until then, take care of yourself, and let the people who love you take care of you too.
Brenden Shucart is a blogger who lives in Los Angeles. He's also on the board of Project Inform. Go to The Gentleman Adventurer's Guide (brightyounggentlemen.blogspot.com) to read more.