Washington Blade - October 1, 2004

HIV IS NO BIG DEAL any more.

You've noticed that guy at the gym every day. He takes long lunches, relaxes at the coffee shop every afternoon, and then tools over to the mall to fill the trunk of his new BMW Z-3 with lots of purchases.

Doesn't seem like such a bad life.

Maybe catching HIV now would be a relief. You'd just pop one of those new high-octane medications each morning with breakfast, then claim disability so you could quit your frustrating job and live off the state.

I've heard guys say things like this. Maybe this helps explain why, after a decade of holding steady, new HIV infections in gay and bisexual men rose 17 percent the past three years.

So I decided to ask some of my HIV positive friends what living with HIV is really like these days. This is what they had to say.

THAT LAZY-PACED LIFESTYLE that seems enviable is actually a result of being tired "a majority of the time," Alan from Fort Lauderdale tells me.

Ted in Smyrna, Tenn., says that his fatigue often immobilizes him for "days on end." Bob in Little Rock has only had HIV for one year, but already reports "fatigue, night sweats, extreme sensitivities to heat and cold, and depression."

Besides exhaustion, these guys face a wide range of complications, both from HIV and from the medicines that fight it.

David in Miami, HIV positive for seven years, describes an embarrassing and frequent "drug rash" that appears on his face.

From New York City, Larry complains of memory loss, depression, fatty lumps, numb feet, and migraines for days.

Alan jokes about another medicinal side effect. "Thanks to years on AZT, my round ass is now flat, with a double chin!"

Several of the guys I spoke to mentioned more embarrassing symptoms.

John in Pittsburgh, who has been positive for five years, has "neuropathy in my bladder, causing embarrassing urine leakage."

Nate from Fort Lauderdale describes "carrying around an extra pair of underwear and wet wipes in the car."

Ted calls these common bouts of diarrhea "med farts." He's had to learn "all the clean rest rooms on habitual routes for an emergency stop."

ALL THE GUYS I SPOKE TO HAVE FELT socially or sexually rejected by other gay guys because of their status.

John in Philadelphia says that some guys actually just turn and walk away when he reveals his status.

Ted adds, "Neg guys describe themselves as clean, so what does that say about how they view us?"

Alan flinches when he reads "Web-based personal ads that say 'HIV neg. UB2.'"

Nate adds grimly, "I've hear people say in front of me, not knowing that I'm HIV+, that poz men spend money, drink, and screw around more because they aren't going to live much longer."

The fatigue that HIV causes and the rigid medication schedule required interfere with everyday activities.

Nate and his partner "count our pills over weekends, upcoming holidays or trips to see if we'll need extra medication."

Alan is careful to "drink water all day long to avoid kidney stones that the medications cause."

Dave says "twice a day, about one-half hour after I take my meds, I become unable to concentrate. The effect on my professional life has been serious."

Though AIDS deaths have dropped by 80 percent since the introduction of protease inhibitors, these men tell me they nervously monitor changes in their bodies.

Nate will sometimes "forget something and get very upset about it. Nobody realizes that you are in fear of getting early dementia."

Ted put it bluntly: "No one with HIV can escape the fact that any new symptom may be the start of the end."

True, some HIV positive guys living on disability have lots of free time. But whether newly infected or long-term survivor, all of the guys said that the symptoms, side effects and fears they feel daily are nightmarish.

They revealed the most scary and embarrassing moments of their own lives in hopes of saving anyone else from the "glamorous" life with HIV.

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