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Living for today
Young and HIV positive
Published Thursday, 12-Jan-2006 in issue 942
There simply is no easy way to begin this article. If for no other reason, it is because most of us have trouble reconciling what it means to be 21 and HIV positive – or 19 or 24 or 16. Statistically speaking, though, most studies – including those released by the Centers for Disease Control and Prevention (CDC) in Atlanta – indicate that nearly half of all newly infected persons in the United States are under age 25, and one-fourth are people under age 21. HIV-related illnesses are the sixth leading cause of death in the United States for those between ages 15 and 24. The CDC reports that, globally speaking, 6,000 persons between ages 15 and 24 become infected with the HIV virus each day. Each day! And in the United States, nearly a quarter go undiagnosed.
Terry Klein lives on the streets. He is 18 years old. His day was Dec. 13, 2003. Or, at least, that’s the day he believes he became infected. He managed to make his way into a bathhouse and “became the life of the party.”
“At the time, I remember feeling so beautiful,” says Klein. “All these men wanted me. It was this incredible skin-on-skin connection. I was being touched and kissed, and, well, what I thought was being loved.” Instead, Klein says, he left that night infected with HIV.
According to leading studies, such as those done at the University of California, Berkley, like Klein, for a large percentage of the gay population, their first contact with the gay community is through sex – either accidentally or with purpose. And the younger the person, the less likely he or she is to know what constitutes protected sex. And, like Klein, the younger the person, the more likely they are to put their trust in the more experienced persons involved.
“I couldn’t imagine that someone would actually [have insertive sex with] me knowing they were positive,” Klein says. “But, hey, that’s what being 15 and not knowing any better will do to you.”
Klein is unable to hold down a job or keep steady housing. He isn’t naïve, though, nor does he dwell in the land of self-pity.
Option 1: destruction
“It’s simple,” Klein says. “When you use drugs, no one is going to let you stay very long.” And he isn’t referring to HIV medications. Klein admits to being a frequent user of crystal methamphetamine. And most public housing facilities have a zero-tolerance policy on drugs or alcohol.
“I don’t figure I have that much longer to live anyway, so I figure live for today,” he says.
University of California, San Diego, has an Anti-Viral Resource Center that deals specifically with HIV-positive youth. Anthony Johnson is an intensive-case manager whose focus is the at-risk populations that may fall out of care due to psycho-social issues like drugs and homelessness.
“In our case loads, 75 percent of the youth we are seeing have a drug history,” Johnson says. “Mostly it’s crystal methamphetamine.”
And of those who come in and get tested and find out they are HIV positive, how many immediately see a wakeup call and quit their crystal methamphetamine habit?
“None of them are completely done,” Johnson says. “Not a one. Later on, over time and with therapy, with counseling, with understanding the effects it has on the body, there is a pendulum swing, and people begin to understand.”
According to Johnson, Klein is one of over 400 HIV-positive youth who are homeless or in need of housing in San Diego. For Johnson, this is a key element in treatment.
“Housing – and I mean stable housing – is one of the primary components in getting treatment,” Johnson explains. “It is hard to be on medication, to focus on your health care, if you cannot afford a place to live.”
Homelessness is multidimensional in the issues it presents, Johnson says. It is not simply the lack of some place to sleep, but also the lack of health and nutrition, organized social or recreational activities, as well as the increased levels of poverty and social isolation.
Klein’s case is not such an unusual case for Johnson.
“When a young person is diagnosed with HIV, we see a range of responses, some real extremes,” Johnson says. “I would say that about 10 percent of the youth we see go into what I would call a destructive phase. They do crystal, they party, they are not going to address the real issues at hand. They avoid medical care dealing with their HIV.”
Option 2: denial
However, explains Johnson, about 50 percent or so of those who fall between the ages of 19 and 25 and are newly diagnosed go through a period of denial.
“These young people are aware of their positive status,” Johnson explains. “They get their results here in the county, perhaps at UCSD; we meet with them right then and there. We might hear back from them within a week or so about a question and then that is it. No more follow-through, no further acting on this information, nothing.”
Joseph Carroll is 23, and was diagnosed two years ago after his partner disclosed his own positive status.
“But that was two years into our relationship, and by then I just assumed we were monogamous and we had both tested negative at the beginning of our relationship,” Carroll says. Carroll’s partner admitted to having slept with a number of men during their relationship; men with whom he frequently engaged in unsafe sex. When Carroll’s partner found out he was positive, Carroll says “he waited almost a year to tell me because he was so ashamed and afraid of what I would say.”
The Journal of AIDS published a study in April by the CDC that reported that in five of six U.S. cities, 77 percent of the gay and bisexual men who were HIV positive between ages 15 and 29 were unknowingly exposing their male and female partners to HIV. The CDC’s Young Men’s Survey took place in Baltimore, Dallas, Los Angeles, Miami, New York and Seattle.
Of those in the study who engaged in unprotected anal intercourse, 48 percent said they hadn’t used condoms because either they “knew” they were HIV negative, “knew” their partners were HIV negative, or perceived that their partners were at low risk for infection. In fact, among those infected, intercourse without a condom was more highly associated with having a steady partner.
And Carroll “knew” both he and his partner were HIV negative. Not to mention that this was Carroll’s first long-term relationship. Carroll’s experience falls into the 59 percent in the study who perceived themselves to be at low risk of being infected, because he was young, had previously tested HIV negative, had never been diagnosed with a sexually transmitted disease or infection, and was in a primary relationship that was understood to be safe and monogamous.
Nowadays, Carroll says he simply prefers to block it out.
“There must be a reason I was infected,” says Carroll, “but I’m not out looking for it. When I think about how it happened and all of that, I’m just too pissed off, really. And frankly, I think the side effects of medications and the pressures of all of the doctor stuff would be too much. I would prefer just to let sleeping dogs lie. So I would rather just live in a world where I don’t have to think about it. It was like having a bombshell dropped on me. I don’t want to be in the middle of that explosion. Some call it denial. I don’t. I call it a conscious choice to not deal with it. And that’s my right.”
The issue here, though, says Johnson, is that people like Carroll aren’t saying anything or doing anything. They are not getting medical care. They are not seeking social or psychological assistance. They have no idea what their viral load is or their T-cell count. Unlike Carroll, Johnson says this kind of denial typically only lasts about four to five months.
Option 3: balance
If 10 percent go into what Johnson describes as the destructive stage and around 50 percent go into what Johnson describes as the denial stage, where are the rest?
“Then there is the other half,” says Johnson, “who are right on it from day one. We get them in for an appointment within the first week, we begin health education, they are calling in with concerns, they are aware of their numbers and what they mean. They understand what safe sex is, and we begin discussions around disclosure, relationships, and coping with those issues that arise with being HIV positive.”
For Josh Royle, 21, that is easier said than done. Royle was diagnosed as HIV positive on Sept. 2 last year.
“When a young person is diagnosed with HIV, we see a range of responses, some real extremes. I would say that about 10 percent of the youth we see go into what I would call a destructive phase. They do crystal, they party, they are not going to address the real issues at hand. They avoid medical care dealing with their HIV.”
“When I was in high school,” says Royle, “I thought I would probably kill myself if I ever became positive. I mean, it seemed like such a death sentence anyway. It was the one thing I feared the most.”
In fact, most studies show that young people who self-identify as gay, lesbian, bisexual, transgender or questioning attempt suicide at a significantly higher percentage than other young people (somewhere between 25 and 30 percent, by most studies). Factor into that equation the news that you are HIV positive, and most researchers would agree that the number skyrockets.
In an article by Daniel G. Taylor called “Homelessness, Sexual Abuse, Family Rejection: HIV and Gay Youth Suicide,” Jaimey Michael-Richards, a genetics researcher, says: “The connection between HIV and suicide cannot be ignored. Many people with HIV do kill themselves, but it’s not simply because they have the virus…. Suicide is a topic people get into when they get sick, not when they’re diagnosed. Some kill themselves when they’re diagnosed with HIV, some months later, and some not until they are given an AIDS diagnosis. Often people decide to take themselves out when they are given an AIDS diagnosis. Often people decide to take themselves out when they get to a certain point. It’s when you lose your value of life. When I feel I can’t conduct a conversation, for example, that’s when it is time to go.”
Royle believes his infection happened one of two ways. He was dating a guy at the time who assured Royle that he was negative, even though he knew he was positive. Royle, like many young people, trusted his boyfriend, and they had unprotected sex. The other possibility, Royle explains, is that he was raped in Los Angeles. Royle never reported the rape. He was sick in bed for eight days straight. In fact, after the fourth or fifth day, he couldn’t even get out of bed to go to the bathroom.
“It’s unclear which it was,” Royle says. “It had to be one or the other – or both.” Between the two, Royle says the fears were enough to drive him back to his thoughts of suicide in high school.
However, suicide wasn’t his course of action.
“I said to myself, ‘It’s alright. It’s not the worst thing, and it’s going to be a difficult life adjustment, but nothing is impossible,’” Royle recalls. “I’m still the same person; I just have to be more careful.”
By that, Royle isn’t talking about sex.
“I have to start taking better care of my body,” he says. “I have to be able to recognize signs of problems or changes within my body. I have to build up my defenses for those who might be closed-minded. I have to educate myself and others.”
The real heroes, says Jerry Turner of San Diego Pozabilities, a social group for HIV-positive men, are the young people who are able to struggle through either their initial destructive or denial stages – stages he avers every person has the right to go through – and then find a balance. Like Royle.
“Being young and positive is devastating,” says Turner, 61, who was diagnosed himself in 1985. “I don’t care whether you’re talking about the ’80s and ’90s, when being diagnosed meant you had only a few months to live, or whether you are talking about today. Fears that young people have are the same: horrible social stigmas, lack of social systems, and lack of awareness of HIV services and organizations.”
The moment you hear the words
“At first you are so raw psychologically,” says Rafael Acevedo, who was diagnosed three years ago on Dec. 9, 2002, at 27 years old. Acevedo is very open about his fears of learning his status. “I was afraid of the burden to my body and mind. I wanted to avoid hearing those words at all costs.”
After all, says Acevedo, he had been tested every six months or more since he was 18 years old, and he had only been with trusted, loving men. Like so many young people, he believed he was invincible.
The CDC ranks California as ninth in the nation for sexually active adults who have been tested for HIV, reporting just at 50 percent, but California doesn’t even fall in the top 30 of states whose sexually active adults have been tested for HIV in the last 12 months, at around 34 percent.
And while there are lots of reasons these numbers could be skewed, says Johnson, there is no arguing the fact that a large percentage of people – mistakenly – believe they are not at risk, or are simply too afraid to hear the diagnosis. And this, researchers say, is what is propelling this epidemic.
People get tested for various reasons, some because they follow the recommended guidelines to get tested every six months. These are the ones who may fear waiting for their results, but who assume they will be negative. For others, their results are feared in a far more intense way. For some, it’s because a condom broke. For others, like Royle, it could be due to rape. Others end up sick and in the hospital with flu-like symptoms.
Regardless of the expectation, reactions are as varied as the individuals receiving the results.
Acevedo says he was emotionally frozen when he learned of his status. He explains how he turned that emotional freeze into education.
“I allowed my brain to take over,” explains Acevedo, who has a master’s degree in counseling and is the co-founder of San Diego Young Positives, a social group for those who are HIV positive between ages 18 and 35. “I needed to know what my antibody load was, what an antibody test versus a viral load test was. Where are my resources? Who should be my physician? I wanted to get my hands on every piece of education I could. But I wouldn’t allow myself to feel anything.”
Justin Newman’s reaction was entirely different. He is 24, and was diagnosed last year in March.
“My doctor had already told me it looked like an HIV infection,” Newman says. “He said, ‘We don’t know, but we can’t rule it out. That’s more than likely what it is.’ At that moment, I was like, ‘Oh my God, I hope not.’ But somehow I knew. I remember having protected sex with this guy and the condom broke. He was bleeding everywhere. I wasn’t worried at first, because he had told me he was negative anyway. After he saw that, he admitted he was positive. But I was hoping for the best. When I came back in for my results, I didn’t know what to say. I was literally speechless for about an hour. It was one of the most awkward moments of my entire life.”
But don’t mistake Acevedo or Newman’s current states of mind with their initial reactions. In fact, if there is one thing that all these young people seem to have in common, it is that who they are today is an evolution from the moment they learned their HIV status.
“For the first year, I felt like I was a walking disease,” Acevedo says. “I felt like it was so obvious that I had HIV, that I had this contagious and deadly disease. Coming to grips with that was like coming out all over again.”
For Royle, after being sick and in bed for eight days, he went to get tested. His test was negative.
“That was on the 23rd,” Royle says. “I knew it was wrong. I went back to the clinic and was [re]tested, and sure enough I was positive.”
Coming out all over again
Shane Frey, 24, who was diagnosed on May 13, 2004, would be one of Jerry’s heroes.
Although diagnosed in 2004, Frey says he knows he was positive long before that.
“I just know,” Frey says. “The play that we had was capable of exchanging the virus, and the last time I had tested I was negative. The guy I was playing with says he was negative, and I would like to take him at his word. I was very close to this person, and he wasn’t the kind of person to lie. I only found out later that he was positive.”
The fact is Frey wasn’t surprised at his diagnosis all.
“At the time, I was using drugs heavily,” he says. “It was so irresponsible and I just didn’t care. I was young and coming to grips with being gay. I was abused as a child, and I didn’t have the best self-image. I had an abusive, alcoholic stepfather who kept telling me I wasn’t good enough. You hear that long enough, it gets to be in your head. That made me believe I was something less than I actually was. And then to realize I was gay. I guess I was slowly trying to commit suicide. The drugs and the sex were just my own way of doing that, I guess.”
Adam Fisher is 21 and he was diagnosed at 17 with HIV. He is what one might call a “bug chaser” or a “charge chaser.” Fisher says he will “celebrate his fifth anniversary as positive this spring.” When Fisher was first coming out, he says he noticed that all the nice men, the men who seemed to care for him as a person rather than a young surfer, all had one thing in common – they were HIV positive. But, Fisher recalls, they were unwilling to date someone who was negative.
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“There were too many emotional issues with being sero-opposite,” says Fisher, who continues to date only HIV-positive men. “I tried really hard to understand why someone wouldn’t date me just because I was negative. So, basically, I decided I would just become positive.” In a way, Fisher argues, he needed to be positive for his own happiness.
Fisher is unflinching – and unapologetic – in his decision, and says he went to a lot of trouble to become positive. Drugs, bathhouses and sex parties were part of his normal routine. He would get tested every few months to make sure.
“I wasn’t completely stupid,” Fisher says. “I knew I wanted to be positive, but I didn’t want to die. I needed to know as soon as possible so I could start my medications and things.” What Fisher needed was to belong to that group of HIV-positive men. It was, he says, like “wanting to get into a country club and realizing you’re black.”
But Shane Frey wasn’t deliberately seeking to become infected – at least not on a conscious level.
Frey explains that accepting his diagnosis was part of his path toward enlightenment. In short, he says, “I had to grow up fast.”
Frey, who is now in recovery and no longer uses illegal drugs, finds that his diagnosis has helped him become the person he was to become.
“You reach an age where that inner child is still inside you as an adult, and you are trying to block out all the bad stuff,” Frey says. “And you say, ‘I’m not any of those things.’ Having a life-threatening illness that few others have makes you much more aware of who you are supposed to be.”
Unfortunately, says Frey, the young man who infected him passed away three months ago.
“He couldn’t stop doing crystal,” Frey says. “So eventually it ate him alive. He was an amazing, loving person who was swallowed by addiction.”
The person most grateful for Frey’s courage in standing up to his trials is his mother, Cherrie Cusumano.
“We had talked about the fact that he might be positive for awhile, even before he was actually tested. After he decided to go in and get tested, he called me. At first I was shocked,” Cusumano says. “I thought he had AIDS. I didn’t know the difference between the two. I was devastated that he would die right away. But we became closer, and we are spending as much quality time as possible together.”
Cusumano’s primary fear is that she might have to bury her son.
“It’s pretty unfair, really,” Cusumano says. “That is not how it is supposed to be, but I think about that all of the time.”
Frey recalls that this concern – of a mother having to bury her own child – was the first thing she said to him when he disclosed his status.
“She looked at me and said, ‘If you die before me, I will kill you myself,’” Frey says. “But I have a great sense of my life. I’m not going to die before her.”
“Family and disclosure is a very difficult thing,” Johnson says. “The age group we’re talking about, most of them are still living at home or going to school and somehow being supported by parents. Disclosing your status brings back all of the gay connotations and emotions the parents went through the first time.”
The question is, then: Are the parents strong enough to handle this “second coming out”?
Frey’s mother is. In fact, Cusumano has become one of her son’s leading advocates, and, by default, one of HIV’s most outspoken moms. Cusumano was determined to become educated about the virus. After all, her first reaction was that her son had AIDS and that he would be dead within a matter of months.
Two years later, Cusumano is still learning – and talking.
“I don’t think this is being taught in high schools properly,” Cusumano says. “How else do we explain how rampantly it’s growing? Even I get tested every six months now. And I tell everyone I know to get tested. I stress the education element.”
Cusumano isn’t playing around, either. “It is so important to me that people understand my son, my Shane, is normal. He just has HIV. He’s not a leper, and it really angers me when people label him. I know how they feel. I used to be uneducated. I used to worry about what would happen to me or others in my home if Shane left a comb lying around. But you have to become educated. I want to know what the symptoms are going to be in the beginning, the middle and the end. I want to know what he is going to be going through. Doesn’t every mother feel that way about their child?”
And Cusumano takes some of her courage from her son.
“My son is open about being HIV positive,” Cusumano says. “If he can be that brave, then so should I. I tell everybody. I am constantly on the lookout for something to help him. If I see a new product out, I find it and make them send it to my son to see if it will help him.”
Beyond just education and love, Cusumano offers her motherly advice, too.
“I try to encourage him to be honest,” Cusumano says. “I remind him how he got it, about the guy who was not honest with him. I want him to live with his integrity. If there’s a relationship or sex involved, I want him to be upfront with that person. It is so important to live an honest life. Surely, that is something Shane has learned from this experience. Maybe we can help others through our family’s experience.”
Royle’s parents are supportive, as well.
“My parents were kind of glad to find out,” Royle says. “All they knew was that I was really depressed and had stopped going to work. They were relieved. It was something they could handle. It was a disease they could understand. And they then understood the depression wasn’t uncalled for.”
Like Frey, Royle says he simply had to take the love that he could get and turn that into energy that would propel him forward.
What does life look life for Royle? “I have a lot more hopes. I didn’t used to like myself. I have learned to care about myself and for myself. I have a place that I now can fill with love. There is just too much potential. I don’t know how long I will live, though I have always thought it would be a long time. Now it is more questionable, less definite. But at least now it doesn’t scare me. I am not afraid of dying. But I am not afraid of living, either. In the next five years, I am going back to school to study theater. I know this sounds silly, but I will be on Broadway one day.”
Well, says Carroll, nothing could sound less silly. “Can you imagine any Broadway star not saying that?”
In fact, studies show that most people living with HIV are living much longer, fuller lives compared with 20 or even 10 years ago. Advances in medication and education have made it possible for people like Turner to be living productive lives 20 years after being diagnosed.
“Life has changed a great deal for people newly diagnosed,” Turner says. “It certainly isn’t universal, but by and large, people are living much longer lives than we who were diagnosed in the ’80s or ’90s ever hoped to live.”
And those differences, says Turner, leads to some very positive social and emotional changes.
“I cannot change the fact that I am HIV positive. I can only change how I react to being HIV positive.”
“One of the biggest changes is how people view their money and health and future,” Turner says. “When our community was first learning of this disease, people threw their hands in the air and awaited death.
“And doctors don’t just sit there anymore, either. They know how to handle the issues, both the medical and psychological. There are more choices, and the doctors and support groups are putting them forward. This difference in social and emotional changes leads to new expectations. And these new expectations lead to a new courage. Now a person can be diagnosed with HIV and still look forward to a healthy future, given the right approach. In many ways, it’s just not a death sentence anymore.”
But don’t say to Frey, “Well, at least it isn’t a death sentence anymore.”
“That is the most negative thing for me to hear,” Frey says. “Imagine having cancer, being sick every day, and being told, ‘Well, at least there’s chemotherapy.’ Don’t tell me HIV isn’t a death sentence anymore. It threatens my life every day.”
Royle agrees.
“Everyone says that when they first find out,” Royle says. “I hate that expression. It makes me sick. Because I’m not through mourning my loss, and having it trivialized is really difficult for me to bear. Being diagnosed with HIV was the most important thing in the world to me, it was the thing I feared the most, and when it happened, I was dumbstruck. So to trivialize that with those simple words in unforgivable.”
The loss Royle refers to isn’t the loss of his T-cells or his HIV-negative status.
“I guess you could call it the loss of my innocence, my naïveté, my optimistic, playful youth,” Royle says.
That’s a pretty grown-up answer for a 21-year-old, says Johnson.
“Being diagnosed with HIV is a life-altering experience,” Johnson says. “It puts someone in the position of acknowledging their own mortality. It’s a grieving process, where you are grieving a loss of lifestyle.”
Newman says he knows the grieving process well.
“I had never thought of myself as ever being positive,” Newman says. “In fact, I was one of those guys who if someone hit on me and I found out they were positive, I would turn [them] down because of their status. Now it puts me in their place. It’s opened my eyes.”
Newman says he is still getting used to being positive.
“I was never one of those people to rely on medication for anything,” he says. “Even if I had a headache, I wouldn’t take aspirin. Now I have to take extra steps, like taking the time out of my day, every day, to remind myself to take my medications. I used to hardly ever go to the doctor, and now I go literally every month. I can’t eat raw fish because of the bacteria. I used to work in construction, putting in 12-hour days, and never be tired. Now, at most, I can pull six hours before I get tired and need a nap.”
Rick Linell is 22 and was diagnosed a little over a year ago. He talks about his life changes, and sums it up like this: “You know that book called Don’t Sweat the Small Stuff…and Everything Is Small Stuff where it tells you to not worry about little things? I think that’s bullshit. Frankly, after being told I have HIV, the small things are all I have control over these days. The big stuff – death, dying, family rejection – I have no control over those. But whether my fries are crispy, now that I can control. And when you’re dealing with something as out of control as being 20 years old and diagnosed with HIV, buddy, you better believe you need to have some control on something, or you’re likely to go insane.”
Newman is really clear about his biggest fear: He doesn’t want to be a burden on anybody else. In fact, Newman says he hasn’t really dated since he was diagnosed.
There are a lot of reasons why people might not date immediately after their diagnosis, says Johnson. For one, they may not feel attractive, either physically or emotionally. It may depend on how they were infected. If it was a very negative sexual experience, like rape or deception, the whole idea of intimacy may be a factor. Also, disclosing one’s status can be a very vulnerable experience.
Newman is not alone in that area.
Chris Gomez was diagnosed in 2001. He is 26 years old now.
“Dating is a tough cookie,” says Gomez, a former Center board member. “When I was first diagnosed, I viewed myself as damaged goods. I was a hopeless romantic, a Latino who was brought up to be in a monogamous, straightforward relationship. But then I became uncertain of how long I was going to be here, and then there was the whole question of when to tell someone you’re positive. In the beginning, before there is time for an attachment? Or do I wait a few weeks or months after we have a chance to get to know one another?”
For Kaleb James, co-founder of San Diego Young Positives, the answer is simple.
“I tell them straight-up,” James says. “It weeds out the bad guys.” James rarely beats around the bush in any conversation. He moved to San Diego from a small town in Utah called Milford the day after he graduated high school. James’ parents disowned him after he disclosed he is gay, and he moved to San Diego with $600 and a fierce determination to succeed in life.
James works as a manager for a radiation and chemical safety services company and models on the side. There is little about the James you meet today that would reflect the fear, loneliness and disappointment of the teenager who arrived in San Diego from a graduating class of 30. There is little in James’ swagger that would tell you the pain experienced in losing every one of his friends when he disclosed to them he was HIV positive. Like many young men who sero-converted, James was in a relationship with someone who said he was negative but knew otherwise.
“I was more hurt about having been lied to and deceived than I was about having been infected with such a horrible disease,” James says. “I cannot change the fact that I am HIV positive. I can only change how I react to being HIV positive.”
For James, that means being upfront and honest from the get-go.
“A lot of people are shocked to learn I am HIV positive,” James says. “I hear things like: ‘You don’t look sick,’ or ‘You are too young.’ I guess the point is: HIV doesn’t discriminate.”
For many positive young people, there are a lot of reasons why it would make sense for two people who are positive to date.
“When I was diagnosed, I thought, ‘OK, now I can only date poz guys,’” Gomez says. “They know my pain. But then there are so many other issues, too. You could have different strains of the virus, and many guys who are positive figure it is OK to have unprotected sex with other positive guys. There is still so much education to be had. So I treat each relationship with respect.”
For others, that kind of self-confidence doesn’t come so easy.
Paul Morgan is 25 and was diagnosed at age 18. Since his diagnosis, he has never had sexual relations with another person.
“It is one of two things, or likely a combination of both,” Morgan says. “On the one hand, I simply cannot stand there and tell someone that I am positive for fear of the look on their face. And on the other, just the very outside chance that I would give someone this disease – and yes, in some ways I mean the virus, but in many other ways I mean the daily burden of living with my own mortality at such a young age – is unbearable.”
According to Johnson, Morgan is not such an uncommon case. About a quarter of all newly diagnosed young people go into a period of abstinence, either for lack of sexual desire or for fear of infecting someone else. This is common for about a year or so, Johnson says. After that, a quarter of those individuals will continue with abstinence.
Royle, who, like James, lost a lot of his friends when he disclosed his diagnosis, likely understands Morgan’s feelings.
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“My friends weren’t well-equipped to deal with a friend becoming positive,” Royle recalls, “partly because my recent behaviors mirrored their own. They questioned a lot of their own decisions. That’s part of my issue with dating, I think – the rejection element. I haven’t had a boyfriend in two years, and I don’t do much dating. I have to focus on me.”
Part of that, says Johnson, is the psychosocial factor that there simply are not a lot of groups geared toward youth and the socialization element of HIV-positive young people socializing with other HIV-positive young people without the therapy element involved. That is, just young people having a safe and fun environment to be themselves.
For Avecedo and James, that is the exact reason for San Diego Young Positives. The group was originally formed as part of San Diego Pozabilities, but has since split in order to provide a space for young people to socialize with men of their own age. San Diego’s Imperial Court serves as the fiscal agent for the group. Avecedo estimates membership to be about 100.
Living for today
For many young people who find out they are HIV positive, they have worked the seemingly forced need for maturity to their advantage. Avecedo, Gomez and James are testaments to this. Others are dealing with their diagnosis in a way that is relevant and meaningful for them, if perhaps not what most experts might recommend. Klein, Carroll, Linell and Fisher are all testaments to this. Others might still be looking for their place, like Newman, Frey and Royle. Interestingly, though, the phrase “I’m living for today” seems to come up frequently, regardless of the person with whom you speak. What is interesting is the definition – or application – of that expression.
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