Ask Angelo - Angelo Pezzote
Plus Do You Believe In Life After HIV?
I have been living with HIV for nearly twenty years. Like many, I thought I would be dead by now. Instead, the new drug protocols have kept me very healthy. However, I don't feel joy about my "second chance" at life. I am more depressed, anxious and scared than before there was any real hope for long-term survival. Can you help me sort this out?
Signed, The Living Dead
Dear The Living Dead,
While it is difficult to generalize based just on this information, I'm suggesting that you may be suffering from a "Lazarus Syndrome," named after the Biblical figure Christ raised from the dead. Mark King, former Director of Education and Communication for the southeast's largest AIDS service provider - AID Atlanta, wrote a good article about this, "Lazarus Gets A Third Wind," for Body Positive Magazine in the May 1999 issue. Based on his article and a personal interview I conducted with a person suffering with HIV related Lazarus Syndrome, here are some important points about it.
Protease inhibitor therapy has helped to increase the life spans of many HIV-infected people, only to leave them attempting to adjust to what is, for many, life after death. You point out that medial science has given you a "second chance," but it sounds like you may still be waiting for the other shoe to drop. This makes sense given that you may be shell shocked and lonely, perhaps having seen your partner, young friends and cohort groups die from AIDS. Now older, you may find it difficult to reengage socially to build new support systems. You may face financial difficulties. Your disability benefits can be shut off. You may lack work because no one will hire you after having been out of the workforce for several years. You may face paying off huge debt that piled up while you were waiting to get sick and die. How's all this for your self esteem?
While the regimen of protease inhibitors and other medications does not appear to directly cause the Lazarus Syndrome, the effects of facing life anew under these circumstances can lead to depression, anxiety, isolation, substance abuse and suicidal ideation. The Lazarus Syndrome is, therefore, tinged with the irony about just how cruel AIDS can be. The first time something akin to the Lazarus Syndrome was defined was after the Holocaust. Many camp survivors bore not only guilt for surviving, but also an inability to get on with the future due to the horrors they had endured. The landscape of AIDS has also been horrific and the horizon is uncertain. But as we respect the memory of those who have died, we also must respect ourselves by remembering that we have a choice no matter what our HIV status - to live life meaningfully on it's terms with all its fears and anxieties, or to give up overburdened. What can you do?
Obviously, seek help from an AIDS service organization. Get counseling with someone who is familiar with the Lazarus Syndrome. Consider HIV group therapy or asking your therapist to start one designed for those so afflicted. But, as you yourself infer, it's time to get on with living. To help sort it out, here are some other considerations.
Work: In evaluating your work/life options, keep a daily health log so that you can measure your average health responses over a course of time to determine how many hours you can manage at work. Also, consider volunteering for a while to help get you back in the swing of things. If you can work, do so. Holding down a job is productive, provides routine structure and socialization.
Relationships: Are you hanging on to someone who you had planned on being your caregiver? Are you with another Lazarus Syndrome sufferer because misery loves company? Or have you shut down and it's time to rekindle the fire? Maybe now is the time to start renewing, reengaging and dating. Certainly if your symptoms are amplified by loneliness, you need some sort of meaningful contact that helps you feel more intact. It may be tough and discouraging, but remember the pay-off. Start small by taking care of yourself and flirting with someone for example.
Sex: Renewed health also may mean a renewed sex drive. But it's not a time to forget that sex must still be negotiated in the face of HIV. "Don't ask, don't tell" shouldn't apply anywhere. Instead, when deciding when and how to disclose your status to partner, take time to remind yourself that you are making an active choice to protect others from becoming infected. That goes for partners who also are HIV+ too. A positive person can't just infect a negative person. Positive persons with more virulent strains of the virus also may re-infect another positive.
Medication: Some Lazarus Syndrome patients stop taking their HIV medication for long periods of time. For some it may be an act of defiance. For others, an attenuated form of suicide. Besides risking full-blown AIDS, stopping medication can expose you to potentially drug-resistant strains of the virus if you are sexually active no matter how safe you play. Seek a reputable psychiatrist for a medication evaluation like an antidepressant. The goal is to maximize your emotional life without weakening the potency of your HIV cocktail.
I am a 33 year old gay man who was in a relationship that suddenly went bad. All signs were good. We discussed everything openly including our affection for one another. Quite literally, one day the guy was talking about how much he wanted to see me and the next day he vanished. It's hard for me to believe and he has really hurt me. I was starting to have deep feelings for him when he just vanished. It took me so long to be open to him only to let him go.
Signed, Disappearing Acts in Chicago
Dear Disappearing Acts in Chicago,
I am sorry you were hurt by someone who seems afraid of real intimacy. Ironically, people do run away from love to protect themselves from more pain. For in love we become vulnerable and risk being hurt. The bittersweet truth of relationship is that we have to risk our hearts to love. But it's love we need and love that heals us.
Deciding to trust someone involves balancing your life experience with their character, reputation and track record with you. Yet in the end all trusting has a degree of unknown risk. It requires great faith in the person you are trusting. This is particularly true for fidelity. That may be why it is referred to as being faithful. Ultimately, trust is a precious and beautiful gift of faith that we give another person. It is the foundation of any relationship. Without it, a partner is likely to feel suffocated.
We release people everyday and trust them. We cannot keep an eye them 24/7. We do not own them or control them. Each day we let them go. Hopefully, they decide to come back to us each day. The best relationships are those where both people are there because they really want to be. Would you really want anything less? I recommend "How To Recover From A Breakup" in my Ask Angelo archives at www.AskAngelo.com. When you are ready, my wish for you is that you can choose to give that gift of trust again, giving another partner a chance to heal you
The Gay Man's Therapist
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