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In a World of Opiate Addicts, the Internet Plays Doctor and Therapist

By Phungushead, Jan 17, 2014 | |
  1. Phungushead
    In early 2007, JonnyM, as he’s known online, was seriously injured when his car was struck head-on by a drunk driver. Left with severe back pain, he told me, he was prescribed “a massive amount of pain meds” and referred to a pain management specialist.

    Despite having a valid prescription, he found pharmacists condescending and hesitant to give him the powerful painkillers he needed. Once, a pharmacist refused to give him his medication when his usual prescription was signed by a different doctor in the same clinic.

    “A lot of pharmacists would look down on me ‘cause I was young, and I was having to take all these pain medications,” said JonnyM, who’s now 27. “You get so many problems [filling prescriptions], it almost feels like you’re carrying around this weird medical scarlet letter.”

    Looking online for advice and support, he came across Opiophile, an online forum for users of opiates both legal and not.

    “When I first joined, it kind of helped just to have an outlet to kind of talk to someone or just kind of express frustration,” said JonnyM, who like other forum members asked that he be identified only by his online handle. “Even getting advice, [like] 'I get this a lot, switch to a mom-and-pop pharmacy where you can get to know them better, and you won’t get as much of that kind of criticism.”

    About half of Opiophile’s members use drugs like Vicodin, Percocet or Oxycontin for pain relief, JonnyM estimated. Many of them are looking for advice on talking to doctors and pharmacists, along with a sympathetic ear.

    “On bad days I have to have help getting my shirt on… I may be young, but my car wreck left my back completely fucked,” JonnyM wrote years ago on the eve of a doctor’s appointment, asking what drugs others had been prescribed for back injuries. Members quickly replied with sympathy and explained what had helped them, from ibuprofen to muscle relaxers.

    JonnyM still needs painkillers today, but at much smaller doses, he told me.

    Other members take the same drugs for recreational purposes and come looking for advice on how to get a better high. And sometimes, the difference between medical and recreational use isn’t clear cut.

    “Good luck tomorrow, and although I don't want you to be in pain, I hope things go well in getting something that is helpful *and* that you can have a bit of fun with,” one member posted in response to JonnyM's question.

    Some are struggling with addiction to prescription drugs, or to heroin, and want help getting clean or using more safely.

    “We get so many different people from so many different backgrounds,” said Candy, a 45-year-old nurse who first joined the site eight or nine years ago while taking methadone to treat an addiction of her own. Now a stay-at-home mom who’s homeschooling her teenage son, she volunteers on the site, moderating posts and giving out basic medical advice.

    “Some are really smart, and they really know what's going in terms of harm reduction and taking care of themselves, but then we get those who really don't have any information,” said Candy. “Sometimes there's information on there that's not the best, and myself and others who moderate try to make sure we correct that and give the right information."

    She frequently gives IV drug users basic safety tips, like using clean needles and sterilizing the skin with alcohol before injecting to avoid infection.

    "A lot of times they just will respond, 'wow, I didn't even think of that,'" she said.

    If users say they don’t know where they can get new needles, she’ll help them find out, since reusing dulled and potentially dirty needles damages veins and increases the risk of infection. And when addicts wary of the authorities ask about treating a possibly infected injection site at home, she’ll tell them in no uncertain terms when they need to see a doctor.

    "They'll try to drain them themselves, these abscesses," she said, "and I'll really try to push them away from that, saying, ‘This can make it worse; this is something [where] you really need to see a doctor and have it taken care of.’"

    In one recent thread, a member said she missed a vein while injecting heroin, and the site later became red, swollen and hot to the touch. Pregnant, and with a five-year-old daughter at home, she didn’t want to show the wound to a doctor, but the home remedies she tried – soaking it in warm water and even poking it with another needle – didn’t help.

    “Go see a doctor,” Candy wrote. “I don't want to come off as judgmental, and I realize you are an addict like the rest of us, but this is one of those times when treatment is not an option, but really mandatory if you want to have a healthy pregnancy with good outcomes for you both, but more importantly, that baby.”

    Opiophile dates back to 2003, when it was founded by Bi11i and Jacky, two recovering heroin addicts from the Pacific Northwest looking for a supportive community.

    “I had just finished a several year stint of being addicted to heroin,” Bi11i told me. “We set up the forum, and I think for a long time the forum was a really good tool for [Jacky] and I to kind of heal a little bit. It was a way for me to meet people who were in the same boat.”

    Opiophile isn’t the only Internet venue to focus on drugs and addiction. Bi11i and Jacky started the site after another opiate forum, poppys.org, stopped accepting new members. And since 1995, the website Erowid has provided a more curated library of general drug information and first-person narratives, while various sites like Shroomery and Growery focus on particular substances – in their cases, psychedelic mushrooms and marijuana, respectively.

    And the forum Bluelight, said to be the Internet’s largest drug-related message board, grew out of a web forum started in 1997 as the MDMA Clearinghouse.

    "There was a gentleman who was hosting MDMA Clearinghouse, and it was a side project of a design company he had that was called Bluelight,” said that site’s current co-owner, who goes by the name Sebastian’s Ghost or, simply, Sebastian.

    “It was an incredibly primitive message board,” he told me. “Older messages wouldn’t even be archived; they would just disappear forever.”

    Today the site, which erupted in popularity with the rise of late-1990s rave culture, has subforums for discussing all sorts of drugs, from steroids to psychedelics, and even sections devoted to sports, music and movies. It now receives about 100,000 unique visitors per day, Sebastian said.

    Bluelight was where computer security pioneer John McAfee posted about purported drug experiments before fleeing his home in Belize in 2012, when police sought to question him about the death of a neighbor. And, for a time, the site was largely funded by Alan Woods, an Australian multimillionaire and professional gambler. Until his death in 2008, Woods posted on Bluelight under the handle xtcxtc.

    "He was about as close to an international man of mystery as I've ever known,” said Sebastian, pointing to a 2003 Cigar Aficionado profile that called Woods “one of the world’s top equine gamblers.” Woods led a team that placed millions of dollars in bets on major horse races with the help of Wall Street-style statistical analysis. He also enjoyed experimenting with drugs and sharing his experiences on Bluelight.

    Opiophile, too, has grown from a small community to one with thousands of registered members from all walks of life. And with that growth, and the nature of the subject matter, came the need to actively moderate the forum, said Bi11i.

    “Eventually what happened was the site was getting fairly big, we needed help: we had moderators who were volunteering their time to keep things in order on the forum, it was such a huge job,” he said. “When you’re talking about things that’s scheduled or illegal, there was definitely a need to make sure that people weren’t using the system to trade drugs or talk about where to get drugs.”

    Ultimately, Bi11i and Jacky moved on from Opiophile, selling it to JonnyM and another member known as Brony, after the two began helping to administer the forum.

    “I was really fortunate to kind of recover from that period in my life where I was using heroin every day,” said Bi11i. “I didn’t want to have to be surrounded by that anymore or be thinking about opiates.”

    The new owners continued working to keep illicit content off the site and to make sure Candy and other medical volunteers addressed any dangerous misinformation that’s posted.

    “Actually asking to buy or sell or trade or asking to meet up with members is completely prohibited,” JonnyM said. “We don’t even want to get into the grey area of the law – we just want to make sure that everything’s on the up-and-up.”

    But if posts are regulated too strictly, that can defeat one of the main goals of the site – making sure users stay as safe and healthy as possible, even when they engage in harmful behavior.

    “For a while, we had talk of actual drug areas, in particular, prohibited, but it got to the point where people weren’t being allowed to post about dangerous areas where they had been mugged, or they had been police-stinged, or just bad areas of town,” JonnyM said. “We’ve changed it to where general locations like downtown Portland would be OK, but saying Front Street and 53rd would be not OK.”

    In one subforum, called The Scene, members discuss the heroin market around the world, with threads for cities from Calgary to Houston. Posting specific sources isn’t allowed, the forum guidelines warn in bold font, but more general advice is permitted.

    “The dealers won’t come out at all, too many cops, but they do like new connects if they can get ‘em, so someone with a connect will sell you the number if you talk to the right folks,” explained one post about the scene in Palm Beach County, Florida. “Ask WHITE hookers, the black and Hispanic working girls don't do it (generally) and only like blow and crack.”

    Another post in that section asked about a strange batch of heroin found in North Carolina. It brought a powerful high, a member reported, but smelled of vinegar and had to be injected hot, before it cooled into a goop too dense to pass through a hypodermic needle.

    “It's so damn good, but it makes you feel so bad to do it, because you know it’s so bad for your body, whether you heat it or not,” she wrote. “Quite a conundrum.”

    There was no definitive answer about what it was, but replies urged her to steer clear of it. In case that wasn’t going to be realistic, others gave advice on how to filter it before injecting, so it would be less likely to clog a vein.

    For better or worse, Bluelight takes a stricter tack about what gets posted, with the site and its team of about 100 volunteer moderators banning discussions of where to get drugs, including legal substances.

    “It’s literally about 30 seconds before those are deleted,” Sebastian said. “I think that’s been key to our being embraced by, believe it or not, government and research organizations.”

    Sebastian’s represented Bluelight at a symposium organized by the National Institute on Drug Abuse, and, with Woods no longer around to fund operations, the site earns money by connecting its members with researchers studying drug use.

    “We’ve already been listed in many publications and journals, like the Journal of Alcoholism and Drug Addiction, and so forth,” he said, pointing to Bluelight’s research portal. To him, the site has evolved to bridge the gap between medical researchers and ordinary drug users.

    “It became a beautiful nexus of that scientific literature and people who are the end user, if you want to describe it this way, looking to do it safer,” he said. "We started to see the emergence of an archetypical character we sort of refer to as the 'drug geek'. Those people started to pop up on Bluelight and became the anchors for the forum—they were providing information and clearing up misinformation."

    There are always new users asking the same basic questions, like the difference between “molly” and “ecstasy”, or whether MDMA really eats holes in people’s brains, he said. But there are also sophisticated discussions of drug chemistry, and tips on safe drug use and dealing with unexpected side effects.

    The Multidisciplinary Association for Psychedelic Studies, a nonprofit especially known for its research into MDMA as a treatment for post-traumatic stress disorder, maintains its own set of forums on Bluelight and processes donations for the site.

    “Bluelight, with its anonymity, is one way that we can maintain relationships with this large and growing community who are talking about drug experience and drug research online, while also respecting their privacy,” said Brad Burge, the director of communications at MAPS.

    Researchers in the forums see what ordinary drug users are up to and get to share their findings with the public in a less formal setting, he said.

    “People do look at the results of scientific research when they make decisions about what they’re going to put in their bodies,” Burge said.

    To Candy, forums can serve a role in harm reduction similar to needle exchange programs, or Insite, the Vancouver facility that lets addicts inject heroin with medical staff on hand.

    "That's one thing about harm reduction: realistically we can't get everybody to stop using, but we can provide a service to someone,” she said. “I would love to see everybody be able to stop, but that's not reality."

    From time to time, members come to the forums with more urgent problems, afraid they've overdosed or are on the brink of suicide. Moderators and community members do their best to get them to seek medical attention. But they’re limited in what they can do from across the Internet, JonnyM said.

    “We have people who are counselors who will try to talk to them about it, try to be a helping hand, but you always kind of worry about them, especially if they stop responding,” he said. “You always hope you see them on later.”

    But, sadly, not everyone logs back in, and the community's lost more than its share of members over the years.

    “It’s still a surprise every time, when somebody you’ve known for five years—you’ve talked to [them], you know about them, you’ve heard about their family or about their kids—only to find out they died, " he said. "It never quite becomes something you get used to. It’s always been a terrible experience.”

    In one case, a man and woman met through the forum and fell in love, carrying on a long distance relationship. The couple had just met up in person and were making plans to move to the same city, when the man died of an overdose, JonnyM said.

    “You mourn his death, but also you have to deal with someone who’s heartbroken and devastated about it, and they feel like the community are the only ones who actually knew him personally and her personally,” he said. “It can be really tough.”

    In 2001, an 18-year-old Bluelight member named Ryan Haight died from a Vicodin overdose. He had gotten a prescription from a doctor he never met after merely filling out a brief questionnaire and ordered the drug from an online pharmacy.

    “I was actually on a chat engine with him,” Sebastian said. “He logged off not feeling well, and I found out days later that he had passed away.”

    After his death, Haight’s family successfully pushed for tighter regulation of online pharmacies. In 2008, President George W. Bush signed the Ryan Haight Online Pharmacy Consumer Protection Act, requiring in-person exams before controlled substances could be prescribed and making it easier to shut down pharmacies violating the law.

    For their part, Bluelight’s administrators devote the anniversary of Haight’s death to reflecting on whether the site still does more good than harm for its members.

    “Over the years I've taken the anniversary of Ryan's passing as a time to reflect on Bluelight's mission -- honestly weighing both our pros and cons as a community,” he wrote in a December post. “It has long been my belief (as well as [other administrators’] belief) that net-net, Bluelight saves lives. Sometimes, this is harder to see than at other times, especially when we are grieving the loss of our own.”

    In Haight’s honor, the site established a recovery subsection, for discussions about moving beyond addiction.

    "Within a couple of days, we had thousands of posts, and it has only grown larger and become really an entity unto itself,” Sebastian told me. "If that means that people are getting help, we think that that's great.”

    The public reaction hasn’t all been supportive. Bluelight’s gotten its share of critical media coverage, said Burge, the MAPS spokesman, though he thinks perception has softened lately as attitudes toward drugs have generally gotten more liberal.

    Opiophile takes some abuse from antidrug crusaders, but it also hears from pain patients who think posts about abusing prescription drugs ultimately make it harder for them to get the medication they need, JonnyM said.

    “We get kind of the trolly comments like ‘go die,’ but also the kind of thoughtful ones where they have every reason to get angry, but there’s not much we can do: it’s just kind of a disagreement about the way things should be,” he said.

    In one case, the mother of a heroin addict wrote to JonnyM, upset by a thread telling users where to find clean needles.

    “She was upset and disgusted, and I guess you really can’t blame her: she’s worried about her son,” he said. “It’s very human. She’s just kind of lashing out 'cause she’s afraid -- her son has this horrible problem, and it could be a deadly one.”

    15 January 2014

    Steven Melendez
    Image: Flickr


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