Taking Back Our Lives
by Mark Leydorf
How people living with HIV—at high risk of suicide—vanquish thoughts of death.
“I don’t believe in tragedy,” Nate says. “It’s a powerless, helpless frame of mind.” A New Yorker in his late 40s, he’s been positive since around 1986 and sober from drugs and alcohol for 13 years. Tall and handsome, Nate has a wry sense of humor and a sage way of closing his eyes before he answers questions, as if listening for a distant radio signal. He has a survivor’s optimism. He’s lived through childhood abuse (which he repressed for decades, until therapy helped release the truth), the AIDS crisis and getting his own HIV diagnosis, as well as a long struggle with addiction. Yet his drive to live is palpable. You’d never guess, talking to him today, that he tried three times to kill himself.
That’s the thing about suicide. Even when the warning signs are all there, the prospect is so unthinkable that friends don’t see it coming, or don’t want to see it coming. Nate asked to remain anonymous for this article. He is studying for a degree in social work and is more discreet about his history than he used to be. “Talking about my suicide attempts has been my shtick since I got sober,” he says, laughing. “I’m kind of sick of it.”
It’s quite a story. Although Nate fits virtually every risk factor, he has never felt like a statistic. “What I do with all those little bits of data is up to me,” he says. “It’s the only control I have—my perception of those checked boxes. Each one can make me a richer, fuller person more capable of expressing love. Or they can just bury you.” He adds, “They’ve buried a lot of people.”
Nate knows he’s lucky. According to a Swiss study published last year in The American Journal of Psychiatry, people with HIV remain more than three times likelier to commit suicide than the general population, though the HIV-positive suicide rate has fallen by half since the advent of HIV combo therapy. In 2008, a survey at clinics in London and Brighton found that one in three positive people had suicidal thoughts during the previous week. In the United States, one study found that 20 percent had considered it at some time.
While many people with HIV in this country and around the world still struggle with AIDS and opportunistic infections, many others—those with access to meds and good health care—could live to a ripe old age. We have retaken life. Why then do so many of us long for death?
Round up the usual suspects: In the Swiss study, stigma, discrimination and social isolation—leading to or compounding anxiety, depression and substance abuse—were major factors. Suicide rates remain highest among older people—men, IV-drug users and people with advanced HIV-related illness, lower CD4 cell counts or poor HIV-med adherence. This at least suggests that HIV therapy might continue to reduce suicide rates over time.
Even so, says New York City psychiatrist Bruce Kellerhouse, PhD, many people who lived through the worst of the AIDS crisis are still suffering from post-traumatic stress disorder (PTSD), which makes suicide more likely. Kellerhouse sees many patients struggling with the problem. “For men over 50, the narrative is filled with loss. Whereas guys in their 30s and 40s, that’s not so much the case. Forty-five seems to be the break-off point.”
Suicide among younger people living with HIV is more often related to substance abuse. This is especially true of gay men using crystal meth. The newly diagnosed are also especially vulnerable. “The question is, how traumatic is it to receive a diagnosis? And what is it like to live with that?” Kellerhouse says. “For some it’s a walk in the park, but for others it’s difficult. There is no uniformity in post-test counseling and follow-up. People may get a little bit of counseling, and then they are out the door. We need intensive post-test referrals and follow-up.”
Unfortunately, in the rush toward rapid HIV testing, the trend seems to be in the opposite direction. The Centers for Disease Control and Prevention’s website stresses three points for counselors: Explain the meaning of a positive test; emphasize the importance of a confirmatory test and follow-up visit for results; and urge people to avoid transmitting HIV while awaiting test results. Not terribly helpful for the shocked, frightened, despairing person just hearing he or she has HIV.
After years of hard work with a therapist and the New York City support group Friends in Deed, Nate has come back from the edge. “The therapist began by saying, ‘I want to get old with you. So if you don’t go to AA tonight I won’t work with you.’” He laughs. “Pretty tough statement to someone with bandaged wrists!” That firm approach, he says, was just what he needed. “I was ready.” (For more on preventing suicide, see “How To,” below; for more on how Nate healed himself, click here.)
Nate is not immune to morbid reflection. When he remembers the many friends he lost to AIDS, he can feel the old despair. “When I think they got robbed, they suffered…. But when I believe they’ve just ‘moved on,’ I’m less down.” On the whole, he exudes confidence and even joy. Asked what he would say to his lost, younger self, Nate barely pauses. “Hang on,” he says. “You don’t know everything that’s possible.”
How to: Fight for Life
Help a Friend
If you suspect a friend or relative is suffering, Bruce Kellerhouse, PhD, says, act before there’s a crisis. “People who show obvious signs of suicidality, you get them help. You don’t leave it up to them. You walk them to the clinic, to the ER.” In less obvious cases, he says, discuss the danger openly.
In 12-step programs and other support groups—and with loved ones—listen for helplessness. “Do people feel hopeless—about recovery from substance abuse? About HIV? Some profound sense of despair sets in, and problems don’t seem solvable,” Kellerhouse says. “For people who are [relapsing], talk about the real danger in that—apart from screwing up your life, your meds, there’s a deeper, insidious hopelessness that can set in.”
Nate, who has HIV and has survived suicide attempts, agrees: “People going through difficult times more often than not just want to know someone is listening and honestly comprehends what they’re going through,” he says. “Rarely is there a better message to offer than, ‘I heard what you said.’”
If you feel like giving up or you just can’t get out of bed, seek help sooner rather than later. Take your needs seriously.
- Join a support group. A local AIDS service organization (ASO) or clinic can help you find a group. Or search for services in your area at directory.poz.com.
- Find a therapist. Get a referral from your doctor or your local ASO. Or call the National Alliance on Mental Illness helpline at 800.950.NAMI (800.950.6264).
- Call for help. In a crisis, phone the National Suicide Prevention Lifeline, a 24-hour, toll-free service available to anyone in suicidal crisis: 800.273.TALK (800.273.8255).
- Reach Out. If what you’ve been doing—staying home, avoiding people, sleeping—isn’t working, do the opposite. Make a call, send a text. Let someone know you need to talk, you need a friend.
Search: New York, suicide, The American Journal of Psychiatry, Alcoholics Anonymous, Bruce Kellerhouse, Post-Traumatic Stress Disorder, PTSD, substance abuse, crystal meth, CDC, Friends in Deed
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comments 1 - 6 (of 6 total)
Roger, , 2012-02-06 23:17:11
As the Intake Coordinator for a metro area, I received referrals post-test counseling. In the capacity, I further collected information in order to connect the person to an appropriate case management provider. It's imperative that all state prevention and care programs have a linkage to care program; such as with KC Free Health Clinic in Kansas City.
Christopher Murray, New York, 2011-12-30 11:37:46
I appreciate Poz reminding us in Mark Leydorf's sensitive article on suicide that HIV still packs a wallop emotionally and that with other risk factors, like substance use, domestic violence and depression, people with HIV are at greater risk of potentially falling into the pit of despair. This remains why being part of a supportive community of peers is so important for HIVers. It helps inoculates us against the worst potentiality of isolation. Well done!
HammyJ, , 2011-12-29 19:54:50
Im 52-poz for 22 years-never thought I would live this long.I struggle now with suicidal thoughts daily.Im in a limbo where Im not going to go away anytime soon, but really dont have the energy to do full time work.I cant buy a date, even though I dont look ill, and think im in pretty good shape for a poz 52.I keep thinking-Is this as good as it gets?.Yet I think of how lucky I am compared to my peers who passed before effective drugs came along.
JJR, New York, 2011-12-29 13:26:41
Great article! Nate sounds like a wonderful guy. I've found that men who lived through the AIDS crisis (perhaps I should add "in urban areas"... maybe not), like people who survived other mass traumas (the holocaust, for example) have a similar gravitas about them as well as an aura suggesting that by embracing the mysteries of life, including its tragedies, one opens a door to the richness of life.
a moreno, New York, 2011-12-29 02:34:29
For almost 2 decades several of my friends & most of my sex partners were poz, as neg I faced my fear of HIV, I opened my acceptance by loving them. I wasn't afraid of HIV. A year ago I tested poz. I took responsibility for myself, my risks.But I knew I could survive. I definitely was scared, but I was inspired & supported by those before me. To be anything less would dishonor those I loved. I understand thoughts of suicide but I believe in a better option, to live. There's always hope.
Peter, New York, 2011-12-28 15:28:57
comments 1 - 6 (of 6 total)
Well laid out and glad that Nate has found the strenght to move forward. Only one comment, as one over 50, my life is not filled with loss but is an integral component of my being and recognizing the loss of many friends is both sad and sweet. It is just another part for us who are older to deal with.