Clean, Sober...and Medicated?
From painkillers to medical marijuana, HIV meds can pose a tough challenge for people in recovery.
remembers feeling on edge as she walked into her doctor's crowded
office two years ago. A statuesque hospital housing manager from the
Bronx who's been HIV positive since 1989, Elaine, 47, had something to
tell her doctor: "The pharmacist says my Norvir's now only in liquid.
Liquid? That's nearly a spoonful of alcohol per dose." Then, after a
pause: "I can't drink alcohol twice a day." Elaine's doctor reminded
her that the Norvir was working, and that another drug might not be as
effective. Elaine looked at him. "I am an addict," she said. "You
didn't know me when I was using." Her doctor pushed. After 13 years
sober, he asked, couldn't she handle two teaspoons of alcohol? "You
don't understand," Elaine said. "It's like an allergy. You never get
past it. I can never have just one drink because once I start, I'm off
to the races."
Elaine first told me this story over the
phone. She'd searched out pharmacies that might have the old,
alcohol-free form of Norvir. She'd scoured the web and even used all of
her doctor's capsule samples. But then it was liquid or bust. Not
knowing how to help, Elaine's doctor referred her to me, since I was
then running a counseling program at GMHC for substance users and in
I began to hear more stories like
Elaine's: Some aspect of HIV treatment was threatening people's ability
to stay clean. Given that 16 percent of HIVers were infected through
sharing needles, once you factor in the use of alcohol, cocaine and
other drugs, the proportion of people with HIV who are in recovery is
undoubtedly high. And since meds for pain, wasting, depression, anxiety
and even HIV itself could pull the rug out from under years of
sobriety, Elaine's treatment-or-recovery dilemma can hardly be
uncommon. One person spoke of feeling high from Sustiva; another of how
injecting human growth hormone (Serostim) for wasting was far too
reminiscent of shooting heroin. Many were struggling with whether to
take painkillers for crippling neuropathy or use medical marijuana to
spark the appetite. As I knew from my own painful bounces in and out of
detox, recovery is a fragile victory. Taking prescribed meds that might
threaten it is no joke.
Denise, 50, is an HIV positive mother
of two living in the Bedford-Stuyvesant section of Brooklyn who's been
in recovery for 10 years. She dreads ever having to face one of these
tough treatment choices because of what she went through with a friend
who's also positive and in recovery. "He was heavily sedated on
morphine," she recalls, during a bad case of tuberculosis. "Even while
confined to a wheelchair with terrible neuropathy, he relapsed back to
heroin." Eventually, he started his recovery process all over again,
she says, and this time was able to stick with the prescribed morphine.
But the episode haunts her.
"I always have to work out whether dealing
with my medications is violating my sobriety," says Tom, a 54-year-old
former cab-company manager from Denver, who got HIV a decade into his
24-year recovery. He says that Alcoholics Anonymous (AA) meetings
provide him with support for his ongoing effort to stay sober and help
him focus on gratitude "that's medicine for me, too." But one of AA's
slogans, "Keep it simple," he just can't follow: Tom is on high doses
of a potentially habit-forming painkiller, OcyContin (time-release
Percocet, a mild opiate), for his neuropathy and Wellbutrin
(bupropion), which has stimulant properties, to treat depression.
Sometimes he wonders, "Have I slipped?"
Denise, Tom and Elaine are a few of the
millions of people across the country who say that AA was the only
thing that saved them when they bottomed out. For them, treading on any
of its basic principles of sobriety can be terrifying. One woman, who'd
tried to stop using drugs countless times on her own, calls AA "my
second leg," the one thing that finally enabled her to quit.
Alcoholics Anonymous, and its sisters,
Narcotics Anonymous and Cocaine Anonymous, have inspired this kind of
loyalty in part because they are the only drug treatment programs
organized by drug users themselves. Founded in the 1930s, when
alcoholism was widely considered untreatable, AA -- the mother of all
self-help groups -- is nearly as available as alcohol and drugs.
Through its famous "12 steps," AA encourages members to give up trying
to control their drug use on their own, and to instead embrace
spirituality and help from others, through telling their own stories at
meetings, listening to others and speaking with volunteer "sponsors"
they can turn to day or night. (Participants also commit to anonymity,
the reason no one interviewed for this story used his or her full
name.) At the moments they feel the most isolated, self-hating and
helpless, many addicts have found in 12-step programs an acceptance by
other recovering addicts that is like coming home.
Denise tells the story of her first day, 10
years ago, as if it were yesterday. She was leaving detox when a
staffer said, "Take your bags from the hospital and go straight to a
meeting. They're going to cheer for you," she recalls. "And I'm like,
'Yeah, right.' I hadn't heard anything good about myself in a very long
time. But when I went into that meeting and I said, 'My name is Denise.
I'm an addict. I just got out of detox and I have one day clean,' those
people jumped up in the air. It was thunderous applause." Denise had
found a roomful of people who knew what she'd been through -- and were
there for her. Even better, Denise says, "I found the same acceptance
around HIV as I did around being sober."
Through such support, newcomers learn
to rely on others for help and to respect the knowledge they've gained
from their own experiences -- techniques that also help many former
users to cope with an HIV diagnosis. "When I found out I was positive,"
Elaine recalls, "I had the foundation of five years' recovery. With
HIV, I had a choice to 'Fuck everything and run, or face everything and
recover.' That's a slogan straight out of NA and it sure as hell
applied to my diagnosis."
For Joe, 44, a tall, wry Midwesterner
with a punk rock past, AA meetings held his life together at a time
when everything was falling apart. He'd just been through the AIDS
deaths of an entire circle of close friends in San Francisco, a felony
drunk-driving conviction in Los Angeles and the sting of being dropped
by a boyfriend when he learned Joe had HIV. Joe packed up for New York
City to start a new life. "I was shell-shocked," he recalls. "I went to
two meetings at noon, grabbed some lunch, then to a 4 o'clock meeting
and to work at night word-processing. That's how I stayed sober and out
This extremely structured life also gave him
the grounding to handle a series of life-threatening health challenges.
In the space of a month, he got CMV (cytomegalovirus)-related pneumonia
and MAC (Mycobacterium avium complex). He served as his own home nurse,
managing four to six hours of IV infusions of ganciclovir and foscarnet
each day for the CMV, and did his own wrangling with insurance
companies. "It was about putting one foot in front of the other and all
these little slogans of AA," Joe says. "If I hadn't been sober, I
couldn't have made it through what I did."
With recovery so essential to survival,
questions emerge: Can HIVers maintain their sobriety, even while taking
medications that may threaten it? And can people in this situation
continue to get support from others in recovery who may see what
they're doing as a relapse?
Joe's experience offers some hope. When he got
sick in 1995 and started losing weight, his doctor told him he had to
start eating or get on a food tube. After Megace, a hormone-derived
appetite stimulant, failed to work, Joe tried Marinol, the chemical
version of marijuana, a prescription drug, but it made him feel
paranoid and unable to function. His doctor encouraged him to consider
the real thing. "I talked to all these people in recovery because I was
afraid if I started smoking pot, I would start doing other drugs
again," Joe says. "But they promised they would tell me before that
happened." When he tried marijuana, he says, "I was surprised. I always
thought medical marijuana was an excuse to smoke pot, but it actually
worked. With all these HIV drugs I take, I'm always nauseous, as if
there's a hard shell around my stomach. The pot relaxes that." He got
his appetite back and began to gain weight.
But, of course, the pot got Joe high,
too. "It had been 12 years since I last smoked and I got stoned really
easily. The first time I came down I put on Grace Jones and picked up
my cat, who put his paws around my neck, and we started just dancing. I
thought, 'Uh-oh, that was really nice.'" Over time, he learned to limit
his doses; enough to perk up his appetite, but not so much that he got
super stoned. "I learned to smoke not five hits but two or three -- and
that was enough," he says.
The plot thickened in 1997, when Joe
began to experience neuropathy and his doctor prescribed Percocet: How
would he maintain both sobriety and functionality? "I was worried about
taking painkillers every few hours each day," he says. "I was afraid
this meant getting addicted." To stay on top of whether his physical
dependence on this essential med had slipped into the old-style
cravings he fought so long to kick, Joe used a method he developed with
pot. He "bookended" at every step with his doctor, therapist and
friends in recovery: "I talked everything through with people at either
end -- I checked in before I did it and again afterward. The way I did
drugs before, I was very secretive: I did heroin with one friend, speed
with another and then went home for a six-pack. My friends didn't even
know I had a drug problem."
Then, last year, Joe's neuropathy got so
painful he couldn't walk to the corner store. "I went off the Percocet
and went on a fentanyl patch [a stronger opiate], but on that I
couldn't even get out of my Barca lounge. When I found myself nodding
off in an AA meeting, that was it." His doctor prescribed methadone,
which completely killed the pain, but left him feeling depressed. After
trying all three opiates, Joe says, "I decided I would rather put up
with some pain in order to have a clear head." He went back on
Percocet, which reduced but didn't eliminate the pain, and added a
pain-management course, fatty-acid supplements and acupuncture, which
helped him cope.
New York City HIV doctor Howard Grossman
suggests looking at the end result -- what the prescribed medication
allows each person to do. "With drug abuse," Grossman says, "the drug
often reduces normal functioning. On the other hand, prescribed
antidepressants, anti-anxiety drugs or, in the case of neuropathy, pain
medications may allow the person to continue normal functioning -- even
some things as basic as walking." Grossman says patients in recovery
need to become attuned to the difference between dependence on a
prescribed med for day-to-day functioning and "self-medication," that
cycle of constant craving and ever higher dosing that signals abuse.
AA did publish a pamphlet on the use of
mood-altering meds ("Medications and Other Drugs," available at
212.870.3400) that underscores the difficulty of managing prescription
drugs, but it offers little advice. (For POZ's tips, see
"Between Recovery and a Hard Place," page 63.) And these tricky issues
rarely come up in 12-step meetings, even in the many gatherings
oriented specifically to HIVers. The half dozen people POZ spoke with for this story were so afraid they'd be seen as having
relapsed that each of them has chosen, so far, to remain silent about
their private debates over HIV-related medication -- at least inside AA.
Finding other places to talk over these
negotiations has been one of Joe's greatest challenges. "I don't go to
meetings as much as I used to. If I went, I'd want to tell people I'm
on these pain drugs and that I smoke medical marijuana, but I don't
want people pouncing on me, saying I'm not really sober," he says. "I
once saw that happen to someone who talked about antidepressants in a
meeting. So I go to meetings maybe once a month and I don't share. And
yet I still have to find ways to break the isolation."
Once Elaine bit the bullet and went on
liquid Norvir, she too, cast a wide net in search of support. While her
AA attendance didn't flag, she relied instead on individual friends in
recovery to keep those two daily spoonfuls of alcohol from becoming
more. "When I tell my story in AA meetings," she says, "I always
mention my HIV status. It's very important for women to hear my
experience and know it's not a death sentence. But I don't go into my
treatment questions, like the Norvir. I don't want someone in AA making
my treatment decisions for me, and I don't want to set myself apart in
AA. I got my foundation for managing all of this from AA, but I learned
how to take the best from AA and leave the rest."
Joe has turned to a handful of friends who
have a respectful take on his use of pot and painkillers. "I'd rather
see Joe slightly stoned in a life where he's concerned with being sober
than wasting away," says Eileen, a friend of Joe's whose been in
recovery herself for 16 years, whom Joe describes as his unofficial
sponsor. "What's desirable here is to be alive, not just sober. It's
something you have to come up with yourself, but, hopefully, as your
sobriety progresses, you know the difference between taking meds to
avoid living in incredible pain and choosing to be high because that's
a place you'd rather be."
Recently, after Eileen and Joe attended
a meeting together, Joe told her, "This is the kind of meeting where
I'd like to raise my hand and talk about my pain pills and pot
smoking." Eileen was skeptical. "You have to be selective about
something as precious as your sobriety and your health," she says
carefully. "You have to pick your battles."
Psychologist Philip Spivey, former director of
an alcohol and drug treatment program in New York City, says the
challenge is to stay aware that HIV-related drugs like marijuana or
Percocet could actually lead to a relapse, while learning to trust
yourself on tricky life choices. Spivey cautions about the very real
possibility of "playing games with yourself" as you walk that tightrope
"between making a sober assessment of the benefits and costs of taking
a potentially lifesaving medication as a last resort, and talking
yourself into an old pattern of drug abuse where you are minimizing
possible danger or masking a craving."
J. Kevin Rist, MD, a psychiatrist in HIV
Services at St. Mary's Hospital in San Francisco, says, "As a person
with HIV in recovery, you need to be especially well-informed about the
drugs you take -- including the potential impact of each on your
sobriety. Be clear with your provider about the specifics of your
drug-use history and then, when contemplating a new drug, ask
specifically, 'I was addicted to X. Is this new drug in the same
class?'" Some anti-anxiety and sleep meds, for example, such as
Clonapin, are benzodiazapines, the same class of drug as Valium --
something you'll want to know if Valium was one of the pills you
popped. All benzodiazapines are potentially addictive, especially for
people in recovery, since they give you a mild euphoria, and the body
easily develops a tolerance so that you quickly need more. Safer
options for sleep disorders may include Ambien and Sonata; for anxiety,
it may be safer to take an antidepressant. If your doc can't answer
your questions, Rist recommends discussing your history with an
addiction-med specialist or a psychiatrist who knows psychopharmacology
to find out which meds are optimal for you.
Michael Lipson, formerly chief psychologist in
pediatric AIDS at New York City's Harlem Hospital, warns that fear of
relapse can't be your only guide. He knows of docs who go too far,
refusing to give morphine to dying patients who are in recovery, as if
they'd somehow get out of bed and resume addictive behavior. "Early
recovery involves an appropriate fear of psychoactive substances,"
Lipson says. "But ultimately recovery may require a conscious
relationship to them."
Even AA cofounder Bill Wilson crossed some
boundaries while remaining sober. After helping launch the movement,
Wilson suffered bouts of crippling depression and, to avoid returning
to drink, sought alternative paths, including prayer, meditation, and
even mind-altering substances such as mescaline and LSD. Though
Wilson's experiences are well documented in both his official biography
and the authorized history of AA, they are rarely discussed in 12-step
"I don't think doctrine should govern what we
talk about," says Spivey. "The ability to talk these questions through
may constitute emotional wellness and health for a person living with
Joe, at least, has slowly gained confidence
that he's on the right track. "One thing I remember from early sobriety
was people saying they became the person they always wanted to be when
they got sober, and that's what happened to me," he says. "The question
is, do I have to be in AA meetings all the time to be that person?
That's what I'm up against every day. Even if I cannot share about this
in a meeting, I don't think I've had a slip." Recently, someone
approached Joe, asking him to be his sponsor, a role that requires a
great deal of trust and dependability. Joe says, "He said he 'liked my
sobriety,' which is what people say when they ask you to sponsor them,
and when I told him about my medications, he said, 'Well, I can deal
with that.'" It was a big moment.