Welcome to This Positive Life! I'm here today with Kali Lindsey. Today I'll be talking to Kali about living with HIV. He was diagnosed in 2003 and he currently lives in Washington, D.C., where he is the director of federal government affairs for the National Association of People With AIDS (NAPWA).
Kali, welcome to This Positive Life.
Can you tell our readers and listeners about your personal history with HIV? How did you find out you were HIV positive?
I actually found out that I was HIV positive because I made a random visit to the emergency room after I noticed a rash had developed on my torso. I came to find out later that that rash was shingles. As a result of me finding out that I had shingles, the doctor connected the fact that I was young, and shingles is typically a symptom that happens to persons that are immunocompromised [a reduction in immune system function that results in increased susceptibility to viral, fungal or bacterial infection]. He decided to offer me a test for HIV. After I gave my consent, he gave me my positive diagnosis.
About Kali Lindsey
Home: Washington, D.C.
Five years ago, at the age of 23, Kali Lindsey was numb with shock. "The day after I got my positive diagnosis, I was back at work, pretending like nothing had ever happened," he says. "I closed off from everybody." Three years passed before Kali was able to tell his family or friends about his HIV status. Today, however, Kali works to improve HIV policy in the United States as an outspoken advocate. "I would definitely tell [people who are recently diagnosed] that they should spend all of their time teaching themselves how to love themselves first," he says.
How old were you?
I was 23 at the time.
How long do you think you were infected?
The last time I remember getting tested prior to that was in 1999. There were at least three or four years between my last test and that diagnosis.
Do you know from whom you got HIV?
I do not know.
Did you realize that you had been doing things that were putting you at risk for HIV?
Not really. From my exposure to HIV prevention awareness, I was of the understanding that HIV was only a concern to promiscuous gay men and prostitutes and injection drug users. I was the kind of gay man who only got intimate with people that I was developing strong kinships with, and I wasn't really sexually active. I had less than six sexual partners a year, and I probably only had sexual encounters maybe once a month. I didn't think that I was at high risk for HIV because I wasn't connecting the fact that it was just unprotected sex that was a risk. I was connecting the frequency of the sexual activity.
I see. You've done prevention work since then, haven't you?
Do you find that notion very common? Do other people feel the same way?
I think a lot of that has changed more recently. I think around the late '90s, there were still a lot of fear campaigns and a lot of fear tactics used to encourage people to engage in safer sex practices, and to engage in prevention campaigns. A lot of people's view of AIDS was this very wasted appearance, with lesions. Everybody thought that you could actually tell if someone had HIV. Or at least that there was some way that you could know prior to [the sexual act] that you were putting yourself at risk.
Number one, I was young, so I really didn't think anything was going to happen to me. Secondly, I thought that if that ever did happen, then I would know and be able to make an informed decision, prior to being susceptible to HIV. Knowing what we know now, we know that you can't tell if anyone has HIV. You have to protect yourself regardless.
"I would probably say that it took about six months before I was able to deal with the fact that I had been given a positive diagnosis."
How long did it take you to process your diagnosis?
I would probably say that it took about six months before I was able to deal with the fact that I had been given a positive diagnosis. The day after I got my positive diagnosis, I was back at work, pretending like nothing had ever happened. I actually started on medication immediately after finding out my diagnosis because I found out so late after I had been infected. I was dealing with the side effects of the medication and coming to accept the fact that I had been given a positive diagnosis. But I wasn't at the point where I was ready to talk to people about it. I kept it to myself for about six months; I closed off from everybody.
What helped you finally get the strength to deal with it?
I got fed up with being alone. I got fed up with spending countless hours in my apartment contemplating it, trying to make sense of it all on my own. I wanted to reach out to someone that would help me think through this new aspect of my life and help me get past it.
Where did you find this help?
Actually, the Internet. I went online. One of the things that I did was that I just looked through all the profiles [on a networking Web site] for someone that actually disclosed that they had HIV in their profile. I wanted to engage someone in a conversation about how they dealt with it and about how I was feeling, if they were open to talking to me about HIV.
Did you find somebody who was up to the task?
Ironically, I did. I found somebody. The first person that I reached out to, even though our identities weren't revealed online, I later came to find out was someone that I went to undergraduate school with. We had never been intimately involved or anything. It was someone that I had hung around with and knew quite well, which made it even more comfortable for me to relate to him about what I was experiencing, because we already had a prior relationship.
Which Web site was this, may I ask?
"In the beginning, I didn't want my family to know because I felt like it would have been a burden to them, and they would have spent all their time just being concerned and worried about me."
It was Gay.com.
Who did you first tell in your surrounding circle?
He was the first person that I told.
By that time you had met him?
We talked online for a while before we actually exchanged identities. By the time we exchanged identities, we realized that we each already knew who the other was, so that made the in-person meeting much more comforting.
When did you first tell your parents or family?
I didn't tell anybody in my family or any of my friends until the summer of 2006. Right before I moved to D.C., I told my mother and my father that I had been dealing with this thing since 2003. In the beginning, I didn't want my family to know because I felt like it would have been a burden to them, and they would have spent all their time just being concerned and worried about me. I thought it was selfish of me to burden them with something that was my cross to bear. So instead, I kept it to myself so they wouldn't be worried about me. But in the end, I felt that it was better for them to know in the event that something happened to me when I moved to D.C., so that they wouldn't be blindsided with that information.
How did they respond?
My mother was really concerned. At the time, she really hadn't paid any attention to HIV. I was the first person that I knew that had HIV. I've never in my lifetime known anyone that has died from HIV. My view of HIV had been, you know, Pedro Zamora on "The Real World" [HIV-positive activist and member of the 1993 cast of MTV's hit reality show, who died of AIDS-related complications in 1994] or other documentaries -- things that I had seen on television. So when I found out that I had HIV, I had to learn everything about HIV for myself. I didn't have that friend or family member that I could relate to.
When I told my mom, she had a similar reaction, because of course we haven't had any family members that have dealt with HIV, so she had the same questions. She thought it was still a death sentence like it was in the early '80s, or in the early '90s, prior to HAART [highly active antiretroviral therapy] coming on the scene. She asked me what it meant: Was I going to die? How I was going to deal with it? After I explained to her about HAART and about how healthy I was still able to be and the positive outcomes that could happen if I remained adherent to my medications, she calmed down quite a bit.
Do you have brothers and sisters?
I do. I have a brother and a sister.
"A lot of my time was spent just trying to figure out how I could possibly return to some quality of life or regain some type of happiness in my life, in spite of having HIV."
How did they respond?
My brother and I have always had a very estranged relationship. He's significantly older than me -- he's about thirteen years older than me. Since we haven't really been close, he didn't react too viscerally to it. It kind of just went over his head. My sister was a little more affected by it; she was saddened. We're one year apart; we've grown up together. We affectionately call each other twins because we're so close. It significantly hurt her that someone so close was struggling with this type of health challenge. But in the end, she just wanted to be there for me, and wanted to make sure that whatever else I went through regarding HIV or any other aspect of my life, that I didn't hold it back from her and that I came to her so that she could help me through it.
The three years that you didn't disclose to anyone -- what were they like?
They were heart wrenching and they were extremely -- they were psychotic for me. [Laughs.] I spent a lot of time in my head. I spent a lot of time trying to figure everything out: from how I was going to be able to navigate life without people finding out that I had HIV, to how I was going to access services, to how I was going to keep my health records out of people's reach so nobody could figure it out, and whether or not anybody was ever going to love me again because now I had this additional burden to deal with.
It was already hard dating, being a gay man, not to mention a gay black man, having such a small community to date within. In addition to that, now I had this additional burden of having to tell everybody that I was HIV positive. Then having them look at me like I was this vector of disease that was waiting to decrease their chance and possibilities of happiness. A lot of my time was spent just trying to figure out how I could possibly return to some quality of life or regain some type of happiness in my life, in spite of having HIV.
You were still living in Detroit, Michigan at that time?
What was your job at that point?
At the point that I was diagnosed, I was working in the retail industry. I was in a management career, but I switched. I started volunteering at a local non-profit called AIDS Partnership Michigan about a year after I was diagnosed. Then, about six months after I started volunteering, they offered me a job, and I started working in HIV prevention full time. I was working there until the time when I moved to D.C.
What did you find rewarding about working in HIV prevention?
I found it rewarding that I didn't necessarily have to feel alone anymore. I got to meet other people living with HIV, and the wealth of knowledge that I learned during the time that I was in that field was extremely beneficial.
I learned all kinds of things about my body -- I learned about my medications and I learned about the social and the structural factors that affect people with HIV. I learned about some of the new things that were coming down the pike that weren't necessarily mainstream or available to the public yet.
I learned about vaccines -- the constant struggle to produce a vaccine that would eradicate or at least reduce the possibility of people getting HIV. I also learned about some of the new medications. Such a wealth of information. Not to mention the fact that I was able finally talk about my status with people. Being in the HIV/AIDS field, people weren't scared to talk to me, or to touch me, to hug me or touch my hand, because they knew that HIV wasn't transmittable that way.
Did you find other people in your world who were afraid to touch you?
Yes. One of my horror stories was, when I went to my first infectious disease medical appointment. After finding out that I had HIV, the nurse put on double gloves! She was very clinical when she talked to me and when we talked about HIV, she asked me how I got it. I told her I got it through unprotected sex. She asked me if I was surprised by the result, and when I told her that I was surprised by the result, she reacted like: "You're kidding, you had to know you were going to get HIV, you're a gay man." She made it sound like it was typical that I had HIV, because I was this gay man, so it was going to happen to me anyway!
"I've adopted new friendships with people that have a more welcoming and appreciative concept of people with HIV, and are contributing to a more positive health outcome for me as opposed to weighing me down with negative judgments."
She wasn't very compassionate.
Not at all! Not at all.
Was this an infectious disease specialist?
She was an infectious disease nurse, in one of the most respected hospitals in Michigan. I was really disturbed by the fact that she kind of treated me as: You deserved it, because you're a gay man.
At that point, you didn't complain. But at this point, would you?
At that point, because I had private insurance, I took the liberty of switching my infectious disease doctor. I didn't go back to that clinic, but I didn't lodge any formal complaint or anything like that. Looking back in retrospect, I probably would have said something to the infectious disease doctor, at least to someone, so that people that came after me would not have had to deal with that same type of treatment.
How soon after being diagnosed did you see a physician?
When I was diagnosed, I was hospitalized, as a result of the shingles having spread into my spinal cord and manifested itself into viral meningitis. I spent a week in the hospital. Once I was released, I returned after a week and got my results from the doctor who was treating me while I was in the hospital. A week after that I was in the doctor's office at my first infectious disease appointment.
What was your baseline? What was your initial CD4 count?
Two hundred and fourteen.
Do you remember your viral load?
It was, I believe, 180,000.
I guess they recommended treatment.
Yes, because I was so close to the 200 mark. Being immunocompromised, they definitely recommended that I go on Bactrim [to prevent pneumonia], of course, right away, and to get my CD4 cell count back up they recommended that I go on antiretrovirals immediately.
What was your first regimen?
The unfortunate regimen of Sustiva [efavirenz, Stocrin] and Combivir [AZT/3TC].
Why was it unfortunate?
Because I had tremendous night sweats. I took it right before I went to bed and immediately after falling asleep, my entire bed was wet.
What else happened?
I had these crazy dreams. I saw myself running through all of these very vivid environments; running from things that were trying to kill me, running from things that were chasing after me. All of these crazy dreams that I would have would wake me up in the middle of the night.
I remember waking up from these dreams and still feeling like I was in the dream even though I was in my bedroom. I would still feel like I was in the process of running away from all of these things that were trying to get me, until I eventually shook out of the dream.
Wow. How long did you stay on that regimen?
I stayed on it for about three weeks. One of the things that eventually made me decide to tell my doctor to switch me off of it was the fact that it left me with such a stupor throughout the day that I felt like I was numb while I was at work. It was hard for me to keep my equilibrium. I felt like I was waving back and forth and I was going to fall over at any point. I was kind of dizzy and nauseous. As a result of that, I really felt like it was hard for me to concentrate on my work, so I asked them to switch me to something that was a little bit more tolerable.
What was your next regimen?
It was Kaletra [lopinavir/ritonavir] and still Combivir.
How did that work out?
That was still [laughs] very hard to tolerate because Kaletra has extreme gastrointestinal effects so it kept me in the bathroom quite frequently. Having to run to the bathroom frequently was also hard to manage in a work environment, since I had to be available to customers on a regular basis. Again [laughs], I needed something that was a little more tolerable for my work environment.
How long did you stay on that regimen?
I stayed on that one for a little bit longer. I think I stayed on that one for about a month to six weeks.
And then what happened? [Laughs.]
Then I switched again to a combination of Epivir [3TC, lamivudine], Viramune [nevirapine], and Viread [tenofovir]. For the first time, I was on a treatment that I had little to no side effects from. [My physician] gave me some Compazine [medication designed to prevent or relieve nausea and vomiting] because there was some initial nausea that I was experiencing. But other than that, it was pretty well tolerated. I was actually able to take that one [regimen] without any side effects.
Is that what you're still on now or have you changed?
I actually, about a year and a half ago, went through a little depression moment and I stopped taking my medications. I just didn't want to deal with having HIV anymore. When I eventually went back to the doctor and told him that I hadn't been on my medications for a while, he checked my blood work and he switched my medication because he said I had probably developed some immunity to it.
So you had HIV drug resistance.
To the Viramune I bet.
Yes. So he switched me again. And now I'm on Truvada [tenofovir/FTC] and Epzicom [abacavir/3TC, Kivexa].
You were on Epivir, Viramune, and Viread for how long? Do you remember?
That was 2003 to 2006, so three years.
Do you have any noticeable side effects from Truvada and Epzicom?
Every once in a while I get a little nausea and I lose my appetite. But for the most part, I don't really have any side effects.
How did you find your current doctor?
I actually looked him up online when I moved to D.C. D.C. fortunately boasts a wealth of infectious disease doctors. Mostly because one in 20 people in D.C. are infected with HIV, so there's no shortage of infectious disease doctors in the area. [His practice], also, was in the Dupont Circle area, which was very comforting to me because not only are they knowledgeable infectious disease doctors, but they're also knowledgeable about dealing with patients who identify as GLBT, or gay, lesbian, bisexual and transgender.
Which place is this?
Dupont Circle Physicians Group.
"Most people who want to believe in conspiracies are going to continue to want to believe in conspiracies. It's not my, or anybody else's job -- I don't think that it's even within our power to be able to change those persons unless they want to change."
So they're very gay-friendly.
Yes, right in Dupont Circle, which is a very gay-identified neighborhood in the District of Columbia. So not only was I able to talk to my doctor about HIV, but I was also able to talk to him about other concerns that I had -- health wise, with being a gay man.
They're very open then.
Yes, he's willing to talk to me about anything.
Great. Do you think your doctor treats you like a partner in terms of making decisions?
Absolutely. One of the things that he chastised me about was the fact that I decided to go off of my regimen and not talk to him about it. He definitely wanted me to come to him and have a conversation about it so that he could have been with me during that decision process, instead of me just going independently on it. He said that if that was something I wanted to do, then he could have coached me through it as opposed to getting to the point where he had to switch my medications. He encourages me to be very conversational with him so that we can make decisions together.
Do you have a particular health regimen that helps you stay well? Do you take vitamins, do you exercise a lot, do you juice?
Actually, I don't. I'm actually bad in that department because my doctor has been telling me for years and years that I need to start working out, or start doing things to help improve my health outcomes. Fortunately and unfortunately, I've been blessed with a high metabolism. Because I don't gain weight, I haven't motivated myself to work out. I don't see the pudge coming on or anything like that, which normally motivates most people to get into the gym. But I've been investigating additional options for working out that are less repetitive, like doing yoga or swimming or playing volleyball on a regular basis. Something that isn't necessarily working out, but that's still getting my heart rate up and giving me a chance to get some energy expended.
I wanted to go back and talk a little bit about the kind of work you do. Living with HIV, don't you get sick of talking and thinking about HIV?
In the beginning it was a really healing, educational experience. But do you sometimes yearn to be in a different field?
Absolutely, every day of my life. I wake up and I'm like, I live HIV twenty-four hours a day, seven days a week. I get really sick of talking about HIV and AIDS a lot of times. You know, sometimes I feel like I can't escape it, especially when people know that I work for the National Association of People With AIDS [NAPWA]. I become this person that always has to talk about HIV and AIDS. Sometimes I do just want to run away from it and isolate myself from it.
But I also appreciate the fact that for so many people in their work relationships, because of stigma and discrimination, they can't be out at work or can't be out in their family environments, or can't be out in their home environments. So I appreciate the fact that I am able to be out for them when they can't, and advocate on their behalf, when they don't feel empowered to do so.
I want to go back to relationships. How have your relationships with your family and friends changed since you were diagnosed? Now that they've assimilated your diagnosis, have those relationships changed in any way that you've noticed?
My relationship with my family hasn't changed, because I've always had a very supportive and close-knit family. That hasn't changed at all. A lot of my relationships with my friends did, however -- a lot of my friends that had prejudgments about people with HIV. For instance, a lot of my friends felt that HIV only happened to people that were irresponsible or people that didn't take care of themselves. A lot of my friends also had this very bad habit of calling people with HIV "sick," or talking disrespectfully about HIV.
I have kind of pulled away from having those people in my life. I've adopted new friendships with people that have a more welcoming and appreciative concept of people with HIV, and are contributing to a more positive health outcome for me as opposed to weighing me down with negative judgments.
"Unfortunately, though many people think that the gay community is this very welcoming community to people with HIV, I find that the gay community is actually the exact opposite."
What's the best response you have ever gotten from telling someone that you were positive?
"Thank you." [Laughs.] Fortunately, one of the things that I've been exposed to, as a result of my current occupation, is going out and openly disclosing to an audience of people. People will come up to me and actually thank me for telling people that I was HIV positive, because they found that it empowered them to hear somebody else say it even though they couldn't. It felt good for them to be able to see someone express their HIV positivity in a spirit of not being ashamed about it; in a spirit of helping other people to deal with the reality that there are HIV-positive people that look and sound and act like everybody else. They felt that need to have that expressed, but they knew they couldn't express it themselves.
What's the worst response you ever got?
The worst response was: "Are you gonna die?"
Wow. What did you say?
After I regained my composure, my first reaction was -- dumbfounded. I just looked stunned, like: Are you kidding me? Do I look like I'm going to die?
Unfortunately, due to my occupation, I immediately launched into this education type of mode. I immediately wanted to tell them about HIV, and the reality that the medications really don't contribute to a death sentence anymore. People are living long, productive lives, and they're able to manage a quality of life if they get diagnosed and get on treatments and stay adherent to their medications and have regular visits with their doctor.
Also, I really got turned off by the person, because I'm like: If you're not even ready to deal with the fact that HIV is a reality and that you need to be more sensitive to people with HIV, then I'm not quite sure that this conversation needs to go any further.
Related to that: Do you come across people who believe in a lot of the myths about HIV: that HIV doesn't cause AIDS, or that it's a conspiracy from the government?
Who do you come across that says that? Is it just a lot of different people? What do they say and how do you respond?
Unfortunately, there are a lot of people, especially minorities, who are still very distrustful of health departments and Western medicine and health care organizations because of things like the Tuskegee experiment and all kinds of mistreatment that has happened in the past. In fact, I was on a radio interview for National HIV Testing Day where an African-American gentleman from Michigan said that HIV and AIDS are disproportionately impacting the black community. He felt that it was a conspiracy to attack the black community and it was something else constantly presented as one of the reasons why the black community can never fully self-actualize.
My response to him was: Yes, it is a major concern for the black community, and one of the reasons why it's a major concern for the black community is because we're not moving past this period of mistreatment and taking advantage of information related to health outcomes. Black people tend to be the last people to go to the hospital because of our distrust. Because of it, we tend to be diagnosed later. As a result, of course, the medications don't work as well for us, because they have to work much harder to improve our health outcomes than if we were diagnosed earlier.
If we invested more in health fairs, and took the time out to get tested for HIV and get tested for things like diabetes, and improved the way that we ate, and stopped thinking of so many things as conspiracies, it would really improve the community health outcomes overall.
Do you find that people are satisfied with that answer?
No. [Laughs.] Most people who want to believe in conspiracies are going to continue to want to believe in conspiracies. It's not my, or anybody else's job -- I don't think that it's even within our power to be able to change those persons unless they want to change.
One of the things I learned when I was getting my degree in psychology is that there is this theory of "reasoned action": People are going to believe what they want to believe unless they receive a very compelling reason to change their mind. Until something happens in someone's life that convinces someone that he or she needs to change this conspiracy way of thinking, this person is going to continue to be resolved in believing that there is a conspiracy against him or her and the rest of the black community.
Hopefully, there are other black people who want to take responsibility and want to take control of their lives, and want to acknowledge that HIV is a serious health threat to people who aren't willing to participate in HIV prevention messages or get tested for HIV. Hopefully, they'll get tested, get the results, and make better, more positive health decisions for themselves.
Now I want to ask a little bit about your love life.
The nonexistent love life?
"Don't waste your time trying to convince people to love you _in spite of_ your HIV. Love yourself and people will see that you love yourself and be attracted to you as a result of that."
Do you have a partner currently?
I do not.
How has dating changed since you were diagnosed?
I've become less tolerant since I was diagnosed with HIV. I have always been and I will continue to be a very hopeless romantic. I definitely see more investment in really developing a relationship with someone than I do in just taking part in a one-night sexual encounter. I'm always going to be the relationship-oriented person, the person who believes in unrequited love. I'm not necessarily interested in trying to convince people of my self-worth after being diagnosed. I have very low tolerance for people who think less of me because of my HIV status.
I really don't tolerate a lot of the negativity or the hoops that people want to put you through in order to date them. I really just reserve myself for people who are willing to take the interest in getting to know me and accepting the full me. If they are willing to take an interest and spend the time in really exploring a relationship with me, then I'm more than willing to meet them and go the distance with them. For people who are afraid of me because I have HIV, or want to treat me as this vector of disease, I'd rather not be bothered.
Do you find that there are a lot of people in that group? Or are there a lot more welcoming, understanding, tolerant people?
Unfortunately, though many people think that the gay community is this very welcoming community to people with HIV, I find that the gay community is actually the exact opposite. There are a lot of gay men who, because of a lot of HIV prevention messages, fear people with HIV. They think that the best HIV prevention method is to avoid people with HIV.
Because I so readily disclose and I'm not ashamed of my HIV status, I find that more and more gay men are repelled by me, and don't want to necessarily invest in starting a relationship with me, which is OK because it's based in fear.
Unfortunately, the reality is that a lot of them end up positive themselves, because instead of protecting themselves regardless of someone's HIV diagnosis, they just avoid people that disclose having HIV.
They're with -- I heard a term the other day -- "mythologically negative" people.
Exactly. They are with people who don't know their status, or who tell people that they're HIV negative. The reality is that some people don't tell the truth and other people just don't know. It's not a reliable HIV prevention strategy, to avoid people with HIV as your method of avoiding becoming HIV positive.
How soon after you meet somebody do you disclose that you have HIV?
Unfortunately, because of my job, most people know [laughs] before I meet them. Usually I disclose my HIV status pretty soon, within the first conversation or the first meeting. It's something that I talk very openly and candidly about. I don't really want to really invest a lot of myself or my time if it's going to end up ending anyway, so I usually bring it up very early on.
What would you tell somebody who was just diagnosed with HIV? What would you say are the first couple of steps they should definitely take to be able to survive the rough beginning?
I would definitely tell them that they should spend all of their time teaching themselves how to love themselves first. Self-love is probably the best health improvement outcome that I've learned for myself. Don't waste your time trying to convince people to love you in spite of your HIV. Love yourself and people will see that you love yourself and be attracted to you as a result of that.
Surround yourself with people that have your best interests at heart. If people think negatively about you being HIV positive, or don't understand who you are or what you're going through, then there are definitely people out there that do love you regardless. There are people who are willing to help you through whatever you're going through at the moment. Spend your time investing in those people and don't waste your time with those people that are negative.
That's great advice! With that, we have to bring the interview to a close. Kali, it's been such a pleasure. Thanks so much for taking the time to talk with me.
This transcript has been lightly edited for clarity.
Click here to e-mail Kali Lindsey.
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