OH: Life With HIV

I conducted an interview with a man who is HIV positive. He agreed to do so only under the condition that his name and information remain confidential. He will go under the pseudonym of Al.
Al is a 26 year old gay, white, male living in Chicago. He moved here from a small town in the Midwest 6 and half years ago. He first tested positive for HIV 4 years ago at the age of 22. He now has his own apartment, works, and goes to school at the collegiate level.
Q & A
Did you know about HIV as you were growing up in your younger years?
• “I didn’t know too much about it. They talked about it a little bit in school, but didn’t know much else about it.”

What was your initial reaction when you tested positive?

• “I wasn’t too surprised because I was, kind of, already [prepared] for it”…”I sort of already knew because I was with my ex boyfriend, and somebody had told me that he was HIV positive and that I should get myself tested.”

How long were you with your ex boyfriend at the time?

• “We were together for 2 and a half years.”

Did you expect something like this from him?

• “I was really involved with drugs when I was with him. When I asked him if he was HIV positive before we had unprotected sex he actually told me he didn’t know. I just took that as ‘Oh he probably just had unprotected sex once and hasn’t been tested since so that doesn’t mean he’s positive… just that he doesn’t know.’ I was young and immature, and on drugs so I just interpreted that as he didn’t have HIV instead of saying to myself ‘this is a risky situation.’ I didn’t realize the risk I was putting myself into.”

Are you on drugs now?

• “No. Not anymore. I’ve been clean now for three and a half years.”

How did you get tested?

• “I actually was scared to go [to a clinic] to get tested because I was ashamed because I already [suspected] what the results were going to be so I just did an ‘at home’ test.”

What is an ‘at home’ test?

• “Basically you buy [the test] at any pharmacy such as Walgreens, and you take it home, prick your finger, and blot blood on three circles. Then you just mail it off through fed ex. They give you a prepaid envelope and everything. Then you call in one or two weeks for your results through the phone. It’s anonymous.”

Once you found out your results, what was your next step?

• “They told me that I should get a hold of a physician or somebody who dealt with infectious diseases, and take further actions. I talked to a few close friends about it who I knew were HIV positive as well. I actually went to a walk in clinic that’s for gay and lesbians in Chicago called Howard Brown. I had labs done, and went on the internet to do my own research about it and about the different forms of medication for it. There was actually one particular study that was testing a new anti-retro viral medication that I was interested in. After I got my labs done I actually applied for the study. The study would accept me, but my doctor didn’t recommend I start taking medication at that point. They said it was completely up to me, though. But they recommended against it so I didn’t [participate in the study].”

Why would a doctor recommend not starting medication immediately after testing positive?

• “HIV is a progressive disease, and when it’s new in your body it doesn’t cause much harm right away. It replicates pretty quickly, but as long as your white blood cell count is high enough that you’re not in immediate danger of illness then they don’t recommend starting [medication] right away. See, once you start it you can’t stop taking them. If you mess up and don’t take them the way you are supposed to, or even just after a long period of time, they just stop working as effectively. Therefore, it’s better to start them when you need them then to take them right away.”

Did you ever start to feel depressed or have a breakdown eventually?

• [He pauses to think about the answer for 10 seconds.] “I think it hit me more after I stopped using drugs, and realized [the significance it had]. I never really had a ‘breakdown’ but I think I realized the severity of the situation.”

Had you not stopped using drugs, what implications would that have had to your health in regards to having HIV?

• “I know of people who have continued using drugs after testing positive. What I used was Crystal Methamphetamine. It’s very bad for you to use with the anti-retrol viral medications. It diminishes the effect [of the medication], and your body already has high toxic levels because of the medication. To add drugs on top of that can be very hazardous. I know people who have continued this unhealthy lifestyle and have died of cancer before dying of HIV. Although, it’s not only the toxicity levels of the drugs mixed with the HIV medication, but it has a lot to do with your lifestyle. You’re up for hours on end, your mind is not where it should be, and you’re not eating the way you should. Your body needs to have the proper nutrients, and using drugs specifically impedes that. Especially with party drugs. You won’t remember to take your medications, or you’ll take it really late. Living in this sort of behavior of skipping doses can cause the medication to not work effectively anymore. ”

How do you feel today?

• “I feel like the world is in my hands now. Before, when I was on drugs I felt like I could accomplish anything, but I didn’t accomplish nothing at all. Now, being off drugs and being an HIV positive person, [I’ve learned] that I can achieve my goals. See, I know that HIV is not going to kill me in the next five, ten, even twenty or thirty years.”…”Now, the average life expectancy is over thirty years from the day you start taking your medication. And that’s today. What is it going to be thirty years from now? There will probably be a cure! I don’t live life day by day thinking about when I am going to die. I can easily die of a car accident or plane wreck before I die of HIV [complications]. So yeah, overcoming all the adversaries that I’ve had to overcome I feel like I can achieve anything I set my mind to.”

Have your dating patterns and relationships changed because of your HIV status?

• “Mmmm…. Yes. To a certain degree because when you are dating somebody you have to disclose [your HIV status] to them. I mean, you can’t have sex with somebody, even if it’s [protected sex], without telling them about your status. So yeah, it definitely has made a change.

“You usually want to disclose early on, and if it’s too early there really isn’t a chance for you to develop some sort of… care for that person. It’s easy for them to just push you off to the side because they haven’t really formed any strong, personal attachments. This is especially for younger people who are not educated about HIV, how it works, and how you can protect yourself from it. Mixed status couples can actually have a long relationship with their status not changing… one being negative and the other being positive.”

What is the most difficult part of being HIV positive?

• “I think it’s knowing that you could have done something to prevent it, and you’re never really going to be able to feel 100% safe again in a relationship. There’s always going to be, even if small, that thought in the back of your mind. Also, just remembering to take your medication everyday and at the same time. Usually, it becomes routine and it’s like nothing. Sometimes you forget, though, and you get all worried like: ‘what will my next labs say?’”

Does your family know about your status?

• “No. That’s another thing. My family not knowing such a huge thing about my life is difficult. I feel that I will outlive my parents, though, so I don’t need to tell them. [If I do] they will just think I am going to die and it will really hurt them. The hard part about disclosing your status to people is them not understanding, and having them think right way that I’m going to die soon or that I’m really sick. They’re not really 100% educated about it and they’ll freak out, and be afraid to kiss me on the cheek, or give me a hug.” … “That’s not how you can transmit the disease. It can only be through an exchange of a concentrated amount of the virus in your blood, breast milk, or semen. There are actually new studies that say if you are undetectable because of taking your HIV medication (which means there are less than 40 copies of the HIV virus per ml of your blood), if you are currently taking meds, and don’t have other std’s then you are not an infectious person. I just read about this [study] on the internet. It was in Switzerland actually. They are really advanced in HIV research.”

Do you consider yourself to be a healthy person today?

• “Yes. I am undetectable and my cd4 count is high. A [person without HIV] is considered healthy and normal with a cd4 count between 600 to 1000 per ml. Mine is actually 1280. While on medication I am actually healthier than the average person in terms of my immune system.” [He smiles.]