Benzodiazepine Facebook and Other Groups

Nicole Lamberson who will be familiar to many from Medicating Normal asked Barbara Connolly from Benzo Warrior to write a piece on Benzo Support Groups especially linked to Facebook.  This was to fill a benzodiazepine shapeed hole in the DD and AA group post.   

Nicole Lamberson asked me to write something about what a good benzo FB group can offer from the vantage of the Benzo Warrior Community (BWC). I wouldn’t dare speak for other psychotropic drug support groups as FB groups are of such varying quality and can have somewhat different purposes. Last I checked there were something like 60 different benzo support groups on FB, of which I only regularly follow a few of the larger ones and a couple dedicated to specific smaller needs. One of those groups, Beating Benzos, was mentioned in that Daily Telegraph article – See DD and AA Group comments.

BWC has approximately 3,000 active members currently withdrawing from or recovering from a benzodiazepine, and often other psychotropics as well, and many more “alumni” who have recovered enough to no longer need the active support of the group. I would say that the first and most important function we provide is to extend loving support  and connection to those going through withdrawal and BIND (benzo-induced neurological dysfunction or protracted withdrawal), as our members are rarely getting the support that they need from the medical system or even from family.

BWC provides extensive guides which are something of a blueprint for recovery as the person injured by benzos will have to contend with a host of symptoms and issues that are difficult to understand and not well -addressed by psychiatry or general practice medicine. Obviously it’s not a replacement for individualized medical care and does not constitute medical advice in any way, but the guides are at least a good starting point for information.

BWC uses the most credible information  currently available for its guides and for sharing with the group generally, so that will include for example information from the Benzo Information Coalition, the Alliance for Benzodiazepine Best Practices, The Colorado Consortium for the Prevention of Prescription Drug Abuse,  Easing Anxiety and the Benzo Free podcast,  Dr. Jennifer Leigh, and  Jennifer Swantkowski, PhD.

Like other FB groups, BWC is also a clearinghouse for members sharing their own experiences during benzo withdrawal, and we do this with a large admin team in order to better make use of our cumulated anecdotal experiences as well as to take advantage of a wider range of experiences and skill sets. The admin team, all of whom have experienced benzo withdrawal,  responds to all of the member posts so there are always at least a few experienced eyes answering questions around the clock and providing information, support, or encouragement. We’re able to quickly connect members with information from our guides that pertains to their particular circumstances, which is probably helpful for those who aren’t thinking clearly enough to read through extensive material or do research, as is often is the case with our members.

The group is searchable, so that if members identify an issue they want to know more about, it’s generally possible to quickly find other members who have dealt with the same and have some ideas on what did and didn’t work. It has to be said that a limitation of a group focused around trading anecdotal experiences is that there is going to be misinformation, and the user will need to be highly discriminating. Our admin team does what they can to temper that effect but it will never be perfect. I would never be participating in such an effort had the medical system not so completely failed me and so many of our members in this area.

Besides what can be done within the confines of a FB group, BWC offers weekly facilitated support Zooms for its members, with a focus on coaching, connection, and coping skills. Those meetings are currently twice a week for two hours each. Also as an add-on to those Zooms we host a virtual speaker series of doctors, survivors, coaches and others with pertinent lived experience on recovering from benzodiazepines, which we run for informational and motivational purposes. We’re extremely grateful for the generosity of all the speakers who have contributed to this series and to the enduring resources that those recorded talks provide, available publicly on the Benzo Warrior Community youtube channel.

Especially through that series, we do try to keep open a feedback loop between doctors, researchers and lived experience in the hope of stimulating collaboration.  We’ve prioritized the creation of communities of recovery through these virtual meetings, which certainly do facilitate peer support in a tighter knit way than any FB group alone could,

BWC also has 24/7  text chats, which mainly serve to provide companionship and target those early in their benzo experience, those further along in recovery, and  caregivers.who have their own separate space. The chats are kind of a mixed bag as they tend to be dominated by those having extreme symptoms or early on and very dysregulated by their experiences,so it would be fair to say that those chats scare off as many or more people than they help- because of that it’s an ongoing challenge to match members with the forms of support they need while encouraging them to stay away from the things that aren’t helpful.

On what makes these groups endure, I’ve spent a year and a half working full-time managing BWC and I can say that these groups only work well if individuals who’ve had a rough time with benzo withdrawal and BIND stay around to help newer members, as the experience and knowledge base proves critical.  There’s ongong need for those who have recovered substantially to stay back and help, and because this is a difficult ask after such a traumatic experience and quite time consuming as a volunteer effort, we’re chronically short in this area and therefore working to leverage what little  those mostly healed folks are able to offer. This a hole we see also  filled by coaches as those people with long experience in the  benzo community understandably need to be compensated for their knowledge and support in order to remain working in this space.

I hope this helps, and of course I’m happy to answer any questions.