March 13, 2014
Driven from her mother's home due to family conflicts, Angelikah Demonikah lived on the streets, where she developed a drug and alcohol addiction. She received her HIV diagnosis at only 23 years old, after she got out of rehab and was beginning a new, sober life. Initially, she did not begin HIV treatment until her body was completely detoxified, but she's now on a successful regimen.
Angelikah hopes her story can help people reimagine who they picture in their minds when they think about people living with HIV. As a star of an MTV documentary about living with HIV, she showed people that many of the assumptions about who gets HIV -- for instance, only people of color, or only gay men -- are wrong, and that the virus that can happen to anyone.
As someone who has been on the receiving end of much help and love, Angelikah has chosen to pass that support on to others by pursuing a degree in social work, becoming an activist and living life as her healthiest self.
This interview was conducted in 2012.
Let's start from the beginning. When did you find out that you were positive?
In the summer of 2008.
So, a few years ago, now. Almost four. Wow.
Did you get tested just randomly?
Well, I always would get tested, like, at least once a year. But if I had multiple partners I would get tested like every six months. It was just kind of routine for me. So it just kind of happened in a routine checkup.
When you got the results, were you shocked?
Definitely. When I got my test results back, I had just gotten out of drug and alcohol treatment. I had only been out for, like, seven days. And I had changed my phone number and all that stuff, because I was trying to stay away from certain, you know, crowds and stuff like that, and keep myself out of trouble. And so the Health Department actually came to my door to tell me.
Yeah, it was pretty intense, because I couldn't just have my clinic call me. So this woman was suddenly at my door, asking for me by my full name. And I'm like, "Who are you?" And then she told me, "Well, you're HIV positive." And I was just like, "OK." Walked up the stairs, and then I fell to the floor. I felt like I was going to die. It was probably one of the most intense moments of my life.
So the doctor didn't tell you you were positive? The Health Department actually came to your door?
Yes. The clinic couldn't get a hold of me.
Because I had changed my phone number and all that stuff; so they didn't know how to get a hold of me. And so they just reported it, like they have to. And then the Health Department came to my address.
At that point, did you go back and get a Western blot to confirm your results?
They told me to do that the next day, but I had this state of mind where, well, I know this isn't a mistake. You know what I mean? And I kind of went into a downward spiral after that. That evening I ended up relapsing on meth, which was not good. But, yeah, I kind of just like went into a really bad place after I found that out.
Can you talk to me about your meth addiction prior to your testing positive?
I'd gotten into drugs a bit when I was a teenager. But then I had like four years where I was clean, and I had a normal life and all that stuff. And then, about a year before I found out I was positive, I ended up relapsing, after a friend's suicide. I spent a good six months, eight months, something like that, high and doing stupid things.
I tried to clean up again. Then I found out I was HIV positive, and I didn't deal with that properly. I dealt with that by going into another relapse. So that wasn't very good. But, since then, I've been sober for almost three years now.
Thank you. Thank you.
For you, did the drugs fill a gap, a hole? Was there something else going on in your life that made you turn to drugs?
Well, there was a lot going on, really. I mean, from the beginning, when I was I think about 12 years old, I got kicked out of my house for the first time. My mom married this man who was no good. Luckily, they are divorced now and she has a restraining order against him, and all that great stuff, because he was just not good. But, yeah. So, when I was young, I ended up leaving home early, and I ended up getting into a lot of trouble. You know, the whole homeless youth experience. Luckily, I didn't get pimped out or anything crazy like that. The worst that happened to me is I ended up developing some drug addictions. And I've been able to come out of that.
I don't really regret anything. I see everything as a learning experience. And so me and my mom have a really good relationship now. I go to her house every other Saturday and we have family dinners. Everything's really good now.
But back then, things weren't so pretty. There was a lot going on really early on. I think I used drugs as a way to escape all the feelings that came with that.
Talk to me about what being homeless was like. You were a teenager when this was happening. Where would you sleep? Where would you go? What would you do?
I stayed with people -- houses of like punk rock kids, who would all do drugs and stuff like that. And so the environments I was putting myself in -- the only environments I really could put myself in a lot of the time -- they weren't very good for me, obviously.
At the time, I made the best of it. It was a lot of fun; I'm not going to lie. It would have been nice to have been able to live at home and have this normal, stable environment. But when you're in a situation like that, especially at that age, it's like as terrible as it is, and as much as you struggle, there's this sense of freedom that comes with it, too. And so it was really bad and it was really good at the same time. It's the only way I can really explain it.
How old are you now?
You're 26. So, if you tested positive in ...
I was 23.
You were 23. That's a lot for a 23-year-old to have to deal with.
You said you relapsed on meth that night?
Yes, I did.
How long were you doing drugs after your diagnosis?
It was about a year. Even though I dealt with finding out I was positive by relapsing, ultimately, my HIV-positive status helped me get it together and like keep it together. That's just how I look at it. Because about a year after I found out and I relapsed, I started developing a really bad reaction to the drugs I was putting in my body.
I didn't know what it was at first. I was getting really bad skin problems. And I went to I-don't-know-how-many doctors. I saw a dermatologist. They did a biopsy. And they all told me it was an allergic reaction to something. I was like, "Well, what am I suddenly allergic to?"
And then I saw my acupuncturist. She was like, "You're allergic to those drugs you're putting in your body. It's not organic. Stop doing that," and all this stuff. And she did detox acupuncture on me. I told her I wouldn't get high anymore. And I stopped getting high. She told me my skin would get worse before it got better, and it got worse really quickly. And then it got better. And it's been better ever since. I don't touch that crap anymore, and it's stayed better.
I mean, it took me realizing that it was going to kill me, that it was destroying me. My skin was literally about to fall off. It was really, really, really bad. People thought I was picking and stuff because meth users tend to pick their skin. But I wasn't. It was an allergic reaction. And it was just covering my body. It was really disgusting, to be honest. It was really gross.
When did you get linked into care? When did you go back and get the confirmation test?
Oh, I didn't. But I did get a doctor pretty quickly.
So, even though you were on drugs, you were still ...
Yeah. About a week after I found out, I ended up in the psychiatric unit, because I just couldn't take it. I kind of lost it and so I checked myself in. I got linked up with care there. They hooked me up with a doctor, who I still see to this day. He's amazing. I adore him. Yeah, and I got hooked up with everything I needed to.
And also, luckily, like a really good friend of mine, Ryan -- the day I found out -- I called him up. He sat down with me and he pretty much gave me my "welcome to AIDS" book -- you know, all of the resources I needed. He's a friend of mine who is also positive. So he was able to give me that support that I needed at that moment.
It's like, even though I kind of flew off the deep end, I still knew that there were people in my life that understood and that cared, and that knew what I needed, if I needed help.
When you got your labs for the first time, what were your counts? Do you remember?
I remember that my viral load wasn't very high. My CD4 I don't remember off the top of my head. I don't think about this as often as I used to, I guess. They weren't bad, though. I mean, I've heard of people with a viral load of a million. Mine was probably 4,000, or something like that. And my CD4, I think, was like, I don't know: 500.
Well, also, you hadn't had the virus for a really long time. A lot of people are late testers. And by that time, the disease has been in their body for a long time. You say you got tested every year, every six months. So you probably hadn't had the virus very long.
How quickly did you start treatment?
My doctor didn't want to start me on treatment until he knew that I was going to be consistent with it. Because I've always been honest with my care providers about if I'm using drugs or not, and all of those things, he didn't think it was a good time for me to start medications. So pretty much we waited until I had almost a year of clean time under my belt. And until my counts dropped low enough to where he thought it was necessary. But he wanted to make sure I was stable and that I wasn't going to miss a bunch of doses and end up resistant.
Who was your support system during this time? Who did you disclose to? And what were the thoughts that were going through your head when you got clean and were ready to deal with your diagnosis and disclose your status?
Well, see, the thing is, even when I was on meth, I was very, very open about it.
The first day I found out I told everybody that was in my social circle. I called my mother and my brother and I told them. The only person I didn't tell right away was my father, and that was because I didn't want to break his heart. But I told him when I was in the psychiatric unit, about a week after. So I've been really, really public and open about it from the first day, from the get-go.
What was their response?
A lot of people in my life were really supportive, because of the social circle that I was already in. I spent most of my time back then, and even now, with recovering drug addicts and a lot of men who have sex with men. There's a high percentage of people in my social circles that are HIV positive, or are very informed about it, even if they're not.
So, for me, it wasn't very hard to do that. I was lucky in that sense ... even though that's actually kind of sad, when I think about it. I was lucky in that sense where I could just be like, "This is what happened to me today. This is fucking shitty. It's terrible. And this is how I feel." I was able to just put it out there.
In a way, it was a defense mechanism for me, because I kind of like put it on blast. Like, if I scream this at the rooftops, then nobody can use it against me.
But at the same time, like, I don't know. I had seen a really close friend of mine -- the first person I was actually ever close to that was positive -- I saw how they were really careful about who they told, and how people did use it against them. People would tell their secrets and it would like mess with their life. I had watched that happen back before I tested positive. And from the first day I decided I'm not going to let anybody take that power from me.
And so, like you said, you had a lot of support from your friends.
I'm really interested in your love life, and dating. How has that been?
It's been really good. Today is actually my one-year anniversary with my boyfriend that I'm with now.
Thank you. But, yeah, my love life's going really well. I'm very happy.
So your status didn't scare him away?
No. Since I found out I was positive, I've had three relationships. And all of them were serodiscordant, or magnetic. And, yeah, every single person that I've dated has been really, really cool about it.
My boyfriend I'm with now: I didn't think he knew already. I mean, a lot of people already knew, obviously, because I did that documentary and I've done magazine things. So it's like I think people know, especially if they're on Facebook.
But I didn't know he knew, because we weren't Facebook friends yet, or anything like that. Then we wanted to sleep together and beforehand I was like, "Well, I've got to tell you something. And you have to think about this."
And he was like, "I already know." He was like, "I stalked your Facebook."
And I was like, "Oh, my God. OK. So ..."
He was like, "I've already thought about it."
And I was like, "Oh, OK." So, we still had that conversation, but it took all that pressure away. Because I was like, "You already know, and you still took me out."
Have you had guys who didn't want to date you because you were living with HIV?
I've had one person who was weird about it, and that was back when I was a drugged out mess. It would have been the worst mistake one-night stand of my life. I'm so, so blessed they were ignorant because, oh, my God, what was I thinking? Their ignorance actually saved me the embarrassment, in that situation.
So, yeah. But that was the only time. I don't know if it's because I'm a good judge of character or it's how I approach the topic ... And I think that has a lot to do with it, too. Because I think if you're afraid of your own status and if you put off an energy of expecting rejection, that's most likely what you're going to find. But if you're confident about it and you're informed, and you have information to give people if they have questions, and you don't view yourself as a diseased pariah -- you know what I mean -- and if you can put it out there like that, I feel like people are going to receive it a lot differently.
So you talked about that you were in a documentary. Can you tell me a little bit about what that documentary was, and where it was? And like what station, or what network?
I did a documentary for MTV a couple of years ago. It was called Me, Myself and HIV. They filmed me, and then they filmed also this man, Slim. He was from Africa, and I'm from the U.S. And so they filmed both of our lives. It was like an hour long.
It was just ultimately about us functioning with the relationships in our lives, living with HIV. It was an interesting experience. I'm glad I did it. My life is a lot different than it was then. So it's weird like.
How was it different back then than it is now?
I was only like a year into my recovery. I had just started college for the first time. I was dating the first guy I dated since I found out. I don't know. It was just a lot of things. I feel like I was at a place in my life where I was finally gaining stability and confidence, and even though I was as old as I was -- I was 24 at the time -- I feel like I was just entering adulthood.
Things have changed a lot since then. My life has changed a lot, and matured a lot, and I've grown a lot. I realize my potential a lot more than I did at that point in my life. And so, for me, it's like a milestone, in a way. But it doesn't define me, in any way, if that makes sense.
MTV, that's a pretty big deal. How did it come about that they found you? Or did you find them? What was that process like?
So this woman from the production company, Firecracker Productions, who lives in the U.K., she contacted me via Facebook because I've always just been kind of activist-y on there in the HIV community. She asked me if I would send them like a couple-minute video that she could show to the rest of the producers and the people at MTV. And, I don't know, they wanted me to do it. I think it was within seven days; they had flown out here from the U.K. and started filming. So it was like all really fast.
What was the response when it came on television?
Really good. I've had so many people from all over the world contact me. I guess the biggest impact it's had on my life, like in a meaningful way, is when I've had people reach out to me and tell me they just found out they were positive, and they haven't told anybody, and they don't know what to do, and things like that. People I don't know from halfway across the world are reaching out to me and telling me these things. You know? And I always make an effort to reach out back.
Because I feel like, if you're going to do something like that, you're not doing it to get your face on MTV; you're not doing it for the wrong reasons. I feel like that's something you should do for the right reasons. And those reasons are to give these people somebody they can trust, and can talk to, and can ask questions to. And so, I mean, that's the biggest thing.
I've had, I don't know, probably hundreds of positive reactions from people I haven't even met. I've only had one negative reaction when it first came out, and I just ignored that one because, actually, I don't know you, and I don't care.
A hater is going to hate, right?
I've been writing about HIV and interviewing people living with HIV for about six years, and it's very difficult to get younger positive people to disclose, or to speak publicly about the disease. A majority of the interviews that we have on our site are with people that are over 30. Why are you the rarity? What is it about you that you were willing to speak out at an early age?
I've always been that type of person. No matter what it's been about, I've always been the person who has been like I'm going to be who I am, regardless of what anybody says or thinks about it. And I've always been the kind of person who, I would rather have five true friends in my life than a hundred people that pretend they like me. I think, for a lot of people, it's harder to put something out there that you're afraid that people are going to judge you for, and attack you for.
But, ultimately, I guess it's in my nature to. I mean, I'm going to school for social work; it's in my nature to do things for the better. When I go to sleep every night, I ask myself if I'm leaving the world a better place than I found it, and if I'm alleviating suffering more than I'm creating suffering.
And so, for me, I guess, the biggest part of it is just knowing that the more people stand up and are open about their status, the less stigma there is, and the easier it is for the next person to stand up and be open about their status and things like that.
And I feel like young women especially aren't a demographic that's really represented as much. We're not thought of as the ones that can be HIV positive. So it's like there's even a little bit more shame around it ... because it's not supposed to happen to us.
And so, I want to be that person that people can look at and go, "OK. I don't have to feel like I'm all alone in the world," if that makes sense.
In an interview that I did with Jack Mackenroth a couple of years ago, he said, "When I tested positive, I just didn't think I could achieve any of my dreams. ... I was so wrong." In other words, being diagnosed with HIV doesn't mean that you can't do the things that you want to do.
You said you're going to school for social work. At any point when you were diagnosed did you think that this would never be a reality for you, to go to school?
No. It's something I've always wanted to do. It actually made it more of a possibility. Because the thing is, even though I always wanted to get into social work, I was never sure exactly what I wanted to do with that. Having to experience HIV firsthand like this, it really, really made me realize that that's the population I want to work with, and that's what I want to do.
You said that you're an activist in your community. Can you talk to me about what that activism looks like? Is it through a certain organization? And what demographic does it serve?
It really depends. Right now I'm doing a lot of things. But one event that I have coming up is, I'm doing Dining Out For Life.
Right now I'm kind of really, really involved in school and things like that. But I just got my internship set up for next semester, which I'll be doing at the Aliveness Project, which is a Minneapolis-based community center for people living with HIV that provides different resources. I'm going to be interning under the prevention and outreach director there, and so I'm really excited about that.
That's great. Let's switch gears and talk about the medication that you're on. How is your regimen working?
It's a lot easier for me now to remember. It's become more of a routine. Now it's second nature to swallow a pill before I go to bed. And it's actually helped me in a few ways, because I'm not supposed to eat within a certain amount of time from taking it. It helped me stop late-night snacking, which has been good for me in other ways.
And it's helped me develop more of a routine -- like going to bed at the same time, and not eating past a certain time. It's been good for me.
In the beginning, was it a little harder to adhere to your medication? Are there any tricks or tips that you use to help you adhere?
Well, in the beginning, I never missed any doses. I've always been really good about that. I still don't think I've ever missed a dose. But in the beginning I was going to bed at random hours of the night. And so the window I was taking it in was like a five-hour window, instead of a two-hour window. And so I mean it was a little more chaotic. I would remember to take it, but my schedule was crazy, crazy back then.
So it's actually helped you regulate your own schedule.
Yeah. It's helped being in a routine and having a better sleeping schedule.
Do you have any side effects from your medication? Like vomiting or bad dreams?
No. I used to have the really, really vivid dreams when I first started it, but I don't have those anymore.
And so, altogether, how is your health? Your numbers are good? You're good?
Yeah. I've been undetectable since just a couple months after I started my meds. That's been forever, now. And then my CD4 is slowly climbing, so that's getting better. But, yeah, I haven't been sick in a long time. I feel really well. I've been exercising every day. I eat better than I ever have in my life. I take care of myself better because I feel like actually I have to now, and so it's gotten me to do that. I feel better than I ever have.
What's the relationship like with your doctor? And how important is it for you to have the relationship that you have with your doctor?
My relationship with my doctor is amazing. My doctor is such an incredible guy. He's just hilarious, and charming. He's been doing this forever -- since the '80s. So he knows what he's doing. But he's also really personable. Like, after I did the documentary, he had a wrap party at his house for me. He invited me, my boyfriend at the time, and the crew for the documentary to his home. And him and his girlfriend made us all dinner. It was really nice. So we have, probably, a more personal relationship than a lot of people do with their doctors. But it's definitely still appropriate.
And so you're very honest with your doctor about your choices, like what you're eating, what you're doing?
Oh, yeah, definitely.
Because a lot of people are afraid to tell their doctors the truth. And it's just so important that you're honest.
My doctors can't help me the best that they can unless I'm telling them the truth about everything. That's how I've always looked at it.
After you tested positive, did you ever seek out support groups, or ASOs, for emotional and mental support? Counseling, anything like that?
No, it's not really my bag. My case manager told me about a couple when I first hooked up with her. She's one of my idols, actually. She has a kind of like dry, sarcastic outlook on life. And I kind of have that in common with her, in a way.
So she's like, "You could go to these support groups. But I'm not sure if ..." I go, "No, that's not my thing." Yeah, I'm a little bit too bitter for that kind of thing.
Do you know who you contracted HIV from?
Yes, I do.
Have you confronted this person at all?
No. I know for certain they knew they were positive beforehand, and they didn't say anything, which is, in my opinion, not the right thing to do. But I still take responsibility for my choices. And so I don't have like hatred, and anger, and blame going that way: "Oh, poor me. Why didn't this person tell me?"
You know, I don't think that was the right thing for them to do. I think that's actually a pretty crappy thing to do. But, at the same time, I take responsibility. And I don't feel any need to confront this person because they know that I am positive now. They knew they were when we hooked up. I'm sure they know. And if it didn't bother them to do it in the first place, I'm sure it wouldn't affect their conscience now.
And I just choose to live a different way than that. I've never hooked up with somebody and not told them. I've never. I would never dream of doing that. So I guess, if anything, I got from that is to not be that type of person.
What would you say to young women who are your age, or even younger, who are afraid to get tested for HIV?
The biggest piece of advice that I could give is there's never any reason to be afraid to test. There's more of a reason to be afraid to not know. Ignorance is not bliss. You should be much more afraid of not knowing your status than you should be of knowing, because then you can't take care of yourself. You can't get the medical attention that you need. You can't prevent spreading it to other people. You can't do those things unless you know your own status.
And then, on top of that, just watch out for yourself. Because -- I know from experience -- no matter how much a guy doesn't want to use a condom, or if he doesn't tell you he has something, he could have something. He could even know he has something and he's just not telling you. It can happen to anybody, really. It's not something that just happens to these certain groups of people. I don't care who you are, HIV does not discriminate. This can happen to you.
So protect yourself. And don't expect anybody else to protect you.
Yes. Because, and I'm just going to be really honest, when we look at who the face of HIV is, it's not really yours.
And so I feel like a lot of people who look like you have this misconception that "this can never happen to me." That "this is not my problem" and that "I could never possibly get HIV."
Exactly. It can't happen to them. They're not gay, they're not a sex worker, they're not a junkie, and they're not a minority. So they can't contract HIV. Well, you know what? That's a load of crap, obviously.
And like I was saying before, that's one of the reasons I am so public about it. Because I want other white girls to look in the mirror and say, "Hey, guess what? I need to go get myself tested."
I'm not surprised that there are people who believe it's not going to happen to them. Because it just may never happen to them, but that doesn't mean it's not impossible.
Exactly. It's possible to happen to anybody. And it's just as likely to happen to, I don't know, a middle-class girl from suburban America as it is to happen to anybody else ... depending on their actions, and behaviors, and choices. All it takes is one mistake. You know? That's all it really takes.
So it's all about protecting yourself as much as you possibly can, and getting tested routinely.
And what is your advice for people who are newly diagnosed?
Well, for one, I would have to give the advice that was given to me. First and foremost, do not force yourself to process it any sooner than you are ready. Do not feel like you have to accept it, and come to terms with it, overnight, because that's not going to happen. It's a process, and it takes time.
The other big piece of advice I would have to give is, just remember that this is not the end of your life. This is not the end of your world. This could actually be the beginning of your life, as it turned out to be for me. So just take care of yourself. Because your existence is appreciated. And treating yourself even worse isn't going to make things any better.
My final question then becomes: How has HIV changed you?
Oh. It's made me actually have to care. It's given me a reason to treat myself with respect and dignity. It's made me more compassionate. And it's just made me more aware of what I put into my body and how I treat myself, really, is the main thing.
Actually, I have one more question: Where do you see yourself in 10 years?
In 10 years ... that's a long time for me.
I know. It's a hard question.
That is a hard question. Hopefully, I'll have my master's degree and I'll be a case manager for people living with HIV. I don't know where I want to live then. I might not live where I do now. It would be nice to get out of here someday. Hopefully, I'll still be with my charming boyfriend. And hopefully, we'll have a house and hopefully my chickens won't be dead yet and maybe I'll have a baby or two. And, yeah, I don't know. I just want a happy, calm, chill life.
Well, I'm pretty sure that's what will happen to you, then.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com. She is currently the health reporter for BET.com.