Johnny Guaylupo was only 17 years old when he found out he was HIV-positive. While he’d struggled with depression throughout much of his life, after his diagnosis he saw his emotions take a dangerous turn.
“Me and my friends would say, ‘I’m going down. Everything’s just going down,’ ” he recalls about those volatile younger days.
In this case, Guaylupo says, “going down” meant thoughts of suicide.
“I started getting depressed about my diagnosis,” he says, “what to do about telling my family, my friends. I thought my life was over.”
After an argument with the older man with whom he was in a “bad so-called relationship,” he tried to kill himself.
Mental health professionals have long cried for the public to acknowledge depression as an illness akin to any serious physical ailment: one with defined symptoms, with prescribed treatment, and that can ultimately prove fatal. In the case of HIVers, this recognition is of vital importance because depression is the number 1 obstacle to antiretroviral adherence, professionals note, and is strongly associated with faster disease progression.
Over the years since the low point that almost led him to take his own life, Guaylupo has turned things around. While he says he still suffers from bouts of depression, none have been as severe as the one that nearly ended his life—thanks in part, he says, to a steady and fruitful relationship with his therapist.
“I know for a fact that it’s not easy, but it’s something that’s treatable, that you can work through,” he says. “It’s not really that hard. I mean, it may seem the worst. It may seem like everything is happening at one time. And everything at one time is hard for me, and I just want to grieve. But it’s not that serious—if you seek help.”
Today, he tries to help other struggling HIVers through his work in an adult day health care program at Housing Works, a New York City AIDS service organization, a job that the 27-year-old Brooklynite says provides him with a sense of purpose and structure he lacked as a teenager.
Yes, It’s Real
Some researchers state that as much as 40% to 60% of the HIV-positive population will suffer from depression at some point in their lives. Using a more rigid set of criteria than most, Glenn J. Treisman, MD, Ph.D., who is director of the AIDS Psychiatry Service at Johns Hopkins Hospital in Baltimore, estimates that at any given time about one in five HIVers is suffering from major depression and requires psychiatric treatment. Regardless of how they define a diagnosis of depression, most scientists agree that HIVers suffer from the condition at a rate four to five times greater than the general population.
Robert H. Remien, Ph.D., who studies the psychology of HIV at Columbia University in New York City, cautions against concluding that rates are so high simply because HIVers have every reason to be depressed. Rather, he says, depression and HIV engage in a complex, interweaving dance—each potentially influencing and exacerbating the other.
“Think about who is vulnerable to getting HIV,” Remien says. “They are often disenfranchised people because of their sexual identity, substance abuse, etc.”
These populations, he explains, are already primed for experiencing depression and might also have a family history of mental illness. Their depression could then cause a sense of apathy about their own well-being that leads them to take the sorts of risks that expose them to the virus.
Furthermore, Remien points out, people who are facing a new HIV diagnosis should not see the onset of major depression or thoughts of suicide as a natural and expected reaction to the news.
How Do You Know?
“In psychiatry, just like in the rest of medicine, diagnosis is everything,” Treisman says. “Treatment’s pretty easy—once you know what’s wrong.”
But with HIV patients, determining the source of an apparent mental health problem can be tricky. How can you know, for example, whether to blame HIV, depression, or antiretrovirals for your weight loss or fatigue? Also, some anti-HIV medications have specific mental health side effects. And research suggests that the virus itself may cause changes in the brain that lead to depression.
Marcya Owens, a 38-year-old from Madison, Ala., whose long-term struggle with depression has left her on disability, says she spent two years in a suicidally depressed state, at some times even psychotic, after beginning Sustiva, a common cause of mental health side effects for many HIVers. After her doctor switched her to an alternative medication, she says, her mental state improved dramatically.
“Then it got to the point where it was just plain depression but functional depression,” Owens says. “I was able to function.”
Treisman says the pivotal mental health question to ask is whether HIVers have experienced a loss of pleasure in their daily life from normally pleasurable activities. Known as anhedonia, this is a classic feature among depression symptoms. If the answer is yes, then you may be able to find a successful psychiatric solution. This can include prescription antidepressants, counseling, or other forms of mental health support.
Owens says she has found better footing through not only a friendlier anti-HIV medication regimen but also a different antidepressant prescription. And while she once thought her family would be better off without her, today she lives for her family members as well as her faith.
“My family is so awesome,” she says. “Then again, so is my relationship with God. You have to have something of a higher power to get through the hard days. If you don’t have something to hang on to—whether it’s, in my case, my children—then the depression’s going to get the best of you.”
On Top of It
Naturally, many facets of living with HIV can and do cause depression. Which is all the more reason why, experts say, HIVers should be hypervigilant about developing effective coping skills.
Ken Howard, a licensed clinical social worker with a therapy practice in West Hollywood, Calif., and an 18-year survivor of HIV himself, blames what he calls “an era of profound HIV stigma” for much of the anguish in the HIVers he counsels.
“These are people who have perfect health, who are feeling well, who are looking and feeling fine,” he says, “but they’re feeling depressed because they feel like they are forever damaged goods. In some cases what they experience is not just ‘I don’t want to sleep with you because you have HIV’; it’s ‘I don’t want to know you because you have HIV.’ ”
Randal Province, a 48-year-old who lives in a suburb of Memphis with his HIV-negative wife, knows about that kind of reaction from people. On disability because of an injury, he says gastrointestinal side effects from his anti-HIV meds make him afraid to venture too far from home.
But stigma that stems from his having HIV has played a cruel hand in furthering his isolation. Afraid of how the local community would react to his serostatus, he’s told only his close family and one friend that he has HIV, and even that has proved to be too wide a circle of disclosure. A few years ago his brother, a well-educated businessman, served him Thanksgiving dinner on separate dinnerware from the rest of the family—which he then disposed of after the meal.
But he’s quick to put the brakes on that kind of thinking when he realizes it’s going on.
“It’s like, No, I’ve got to take care of myself. If nobody else cares, I do,” he says. “Because nobody else looks at me in the mirror every morning—as scary as that can be for me some days.”
Province also tries to maintain a rosy attitude, he says, and to share it with others.
“When I leave the house—going to the grocery store or whatever—I always try to do something nice for somebody else while I’m out,” he explains. “It may be holding the door for somebody or helping them carry out their groceries. I make it a point to bring some kind of positive impact on somebody else’s life. And in doing so, it makes me feel better about myself and brings my emotions up. It feels good to say, Yeah, I am a good person, and I can do something to help other people, no matter what’s going on with me.”
Owens says she would seek a sense of community in her church because of her strong religious beliefs, except for the profound stigma she’s suffered there both because of her being HIV-positive and because of the mental health struggles that she’s been through. So outside of watching sermons online, she’s found another outlet for her spirit—working as a speaker, educator, and advocate for HIVers in the communities where she and her husband, who’s in the military, have lived.
“I’m 38 years old, and I have so much left to give!” she says. She adds that she finds solace and kinship among those she jokingly calls the “degenerates,” the other HIV-positive members of her local AIDS support group.
“The same way you work the program with HIV, you can work it with depression,” she notes of the multitude of support groups out there for both issues. “You just need to broaden your support system. In every community, no matter how large or how small, you can still find support.”
Therapist Howard seconds that notion: “A person living with HIV needs comprehensive services. They can have a blood draw, they can have a pill, but if they don’t have a case manager to help prevent them from being evicted, and if they don’t have a therapist to help them with all the stress, then just having an undetectable viral load is not going to get that person to be successful.”
Back in Brooklyn, Guaylupo says one way he finds success in battling his depression is to resist his old temptations to up and quit what he’s started. As a teenager, he admits, he abandoned his long-term job at McDonald’s on a whim one day, and later he dropped out of college shortly before he was set to graduate.
“I don’t give up on my job now,” he says, contrasting his present and past. “I’m not done with school, but I’m still doing it. I took off two semesters, but I’m planning to go back.”
He also says he has to fight the darker days, which sometimes make him want to lock himself in a room and throw away the key. Now, he says, he’s learned to make healthier choices.
“Whenever I feel stressed-out or depressed or down—to the point I sometimes just want to scream—I can contact my therapist or one of my friends and just let them know what I’m going through. Even though I’m going to feel down, I feel a little better if I talk about it.”