What was your experience interacting and engaging with substance use treatment providers or teams? What comes to mind in terms of what specifically helpful sets of interactions were and things that weren’t helpful?
When I was in outpatient service, anyone who looked at me as a human being and didn’t talk down to me was helpful. I’ve had nurses talk to me like I was a child like I was incompetent like I was a liar. I think one of the challenges with substance use is that there is a desperation of not wanting to be sick or a desire to numb what was inside, to numb those things I was really struggling with. Substance use, in many ways, was a way to survive, and it was a thing that was also killing me. So it was really complex. When providers could see that complexity, I felt safer being open with them.
I benefited when providers were able to have a conversation about that complexity and the things that I was grappling with instead of some rigid set of assessment questions. Or even worse, “You need to do this or else” kind of conversation. When I returned to use in an outpatient program, they were like, “You need to go to rehab, or we’re going to kick you out.” I was open to going to rehab. I was able to acknowledge what wasn’t working. But the ultimatum came quickly, which no longer felt like my choice. That impacted my willingness to trust.
When I went to rehab, being a queer person, they were really thoughtful and kind, but there was also this weird balance. They told me to keep my sexuality secret, or I’d have to get my own room, and other guys wouldn’t want to stay in the same room as me. This reinforced all kinds of problematic things. They were doing it almost to protect me, like, “Hey, just keep it to yourself.” They gave me a special book on sexuality and substance use, and they were really great. But also, it was unfortunate that there was this other message that you must keep this significant part of yourself secret, or people will reject you. That was hard for me to grapple with and reinforced all the types of messages that I grew up with and partly led me to use drugs in the first place.
I don’t know if that conversation was due to the program still grappling with how to navigate sexuality in their space. They supported it and saw the importance of acknowledging it generally, but couldn’t openly support me; it left me feeling that a lot of my substance use was about wearing masks and being uncomfortable with my own sexuality. It got reinforced that it was something wrong and to be hidden, that I was hiding from my family and was hiding with drugs. If there had been an open conversation, that would’ve been helpful. I don’t know if they were equipped or had time to, but I felt it could have been different.
You mentioned that you were on medications, buprenorphine, Suboxone, at different times and through much of your recovery journey. Was that suggested? Did you seek it out? How was it introduced to you?
I was on methadone for a period as well. I think it was just part of the program. I can’t remember exactly how it was broached with me. I don’t remember feeling pressured. I definitely saw it as a tool and something helpful, particularly that it was a blocker, was appealing to me. I knew that if I had taken my Suboxone, it wouldn’t have made any sense to use drugs or other opiates. There was a lot of openness and flexibility. I don’t remember there being like, this is the end all be all. Different things always accompany it.
How did the discussion about methadone versus buprenorphine or Suboxone emerge? Was it presented as a choice with a discussion?
I feel pretty angry about how methadone is dispersed and how we lined up and had to go there and get dosed. That’s humiliating — people have to go daily and line up like cattle. I don’t think it’s a dignified way to do it. I lived in a rural community, and my parents were well-known. Almost all of the staff knew my parents and some were friends with them. They let me come before it officially opened so that I could get dosed privately.
That was thoughtful, but it wasn’t realistic and didn’t last. In rural communities where everyone knows each other to go to every day and line up like that, I don’t think it’s a dignified process, and you have to do it for far too long. So methadone, for me, was never a solution because of the way it’s administered. I also came to understand it is incredibly painful and challenging to detox from. Suboxone felt to me a more dignified approach with a prescription, and I could take it at home. I didn’t have to go every day.
You had a fair number of transitions of care, whether it was Suboxone to methadone, methadone to suboxone, residential to outpatient. How were those transitions handled, and what went well and what didn’t go well?
There were no transitions. I transitioned. No one followed me or called me. It wasn’t a thing. The IOP didn’t call to say you’re about done with the residential program, and let’s call your outpatient provider to make sure that you’re scheduled to go back and that they’ll receive you and tell you when your next appointment is. There was no sort of coordination, transition, or support. When I left the 28-day program, I ended up moving home, and no one called, checked up, reached out, or supported any transitional care. That was true for the outpatient program, the inpatient short-term rehab, and the long-term program. Even when transitioning from the long-term program to an apartment, no one ever called to check with me or plan. There were none of those things.
What was true for me is that I returned to use after every single one of those programs. That doesn’t mean the program didn’t work, but it’s what happened. If we’re looking to treat people with dignity as human beings when they leave programs, have conversations about what’s next, help them get connected or understand the services or create plans in their specific community, and then check in with them to see how they’re doing. That doesn’t mean you have to call me every week, but maybe it is every day for a few days, checking in and seeing if I need any support or need to talk. That would be helpful during that high-risk time. Then, if things were getting really bad, there might have been an opportunity for me to come back or get some additional support.
What about peer support? Was it a part of your own recovery? Was it available?
It wasn’t available in any of the programs I was connected to. The closest thing to it was in some of the residential spaces. Some folks would allude to or say they were also in recovery. That gave me some hope. They didn’t provide peer support in the ways that it’s known today. Many folks would consider 12-step as a form of peer support. I certainly accessed Alcoholics Anonymous, even though I didn’t struggle with alcohol. It was a conducive space. I had a sponsor who was identified as an alcoholic and had never had a drug addiction. He was an incredibly amazing person and supported me. That was a valuable type of peer support, but they weren’t part of teams as they are today.
For sure. What advice would you give providers about peer support today? Do they need encouragement? Where should they look? Who’s available?
There is more awareness of peer support and its value today. I would encourage providers to think about, in particular, folks who are on medication, understanding that if peer support is the 12-step community, they’re going to encounter a variety of opinions about being on medication. Assure them that it doesn’t mean that they’re not in recovery when they hear messages or judgments about medication. There are people in those spaces who don’t believe this, but it can take a little work to find them. Having a conversation with folks about recovery is an exploration, ever-evolving and about trying new things. That’s true for 12-step spaces as well. You’ll find some beautifully welcoming meetings and others stigmatized and figuring out how not to get dissuaded when you hear messages that aren’t your reality or worldview. It doesn’t mean that that’s the program’s perspective; it’s an individual’s perspective.
I’m a huge advocate for peer support. Still, I would want, if someone were going to access a Recovery Coach or other form of peer support, I’d like them to be connected to a legitimate program where there’s supervision and other support. So, if a recovery coach is working independently, I’d scrutinize that a bit more because I think peer support requires support, supervision, checking in, and continued growth to work in the field. Having an awareness of who you’re referring to is essential.
The growth of the recovery community and community recovery centers in the state has been very positive. It seems like that would be a reasonable place to start, maybe for many providers.
I think there is an effort to make recovery centers have a shared philosophy and consistency. I’m not sure if they are there yet. So, I think it’s important for providers to understand the culture of the local recovery center they’re referring to because it doesn’t necessarily mean they are entering a healthy space. Also, those spaces can change if you have a manager or staff going free-range, going on their path, deciding what recovery is, sending specific messages, and creating a particular culture. It’s important for providers to have some sense of that culture.
What’s the best or most practical way for a provider to check that out or be able to feel confident about where they are referring people?
To be super critical and say there’s no safe space is not a healthy direction to go either. The more that the providers can have people from the recovery community coming in, if they can’t go out. See and talk to folks and build relationships themselves and talk about their philosophy and perspective to build community relationships. You then have someone to call and say, Hey, Jimmy, how are things at such and such? I have some folks that I want to connect with at the center. How are things there right now? What’s the vibe?
In treatment spaces, if we can have conversations about identifying healthy supportive relationships, healthy communities, and resourcing people with the ability to navigate recovery spaces, then when you go out and if you enter into spaces and see some shitty dynamics or unhealthy dynamics, you can exit. There are red flags; maybe you will find healthier relationships and support at the Buddhist Center or the Unitarian Church. The Unitarian Church was a very powerful place for me to be and I’m not even religious.
Rituals, wherever they are, helped me process what was going on and what I was still holding, and it didn’t have to be at a recovery center or a 12-step meeting. It can be another space where you can find those healthy things, and we can broaden that exploration.
Were there other informal networks that supported your recovery that you found helpful?
I would attend a variety of different groups, such as the Young People in Recovery meeting, even though not all of the dynamics were for me, but because the speakers often offered a lot. I’d go to a men’s Nooner, and I’d check out a gay 12-step group, the Unitarian Church, and just gather with people I met in those spaces. We’d have lunch, coffee, go to the movies, go for hikes, go kayaking, swimming, and just generally build a community with people who were doing the work and unpacking the reasons they had used together.
It’s helpful for people and providers to think about that in terms of other interest-based groups or other ways that people can connect socially, build healthy relationships, and be on the lookout for when things aren’t healthy. Going back to the medication side, when you mentioned transitioning or weaning yourself off of Suboxone, what factored into that? At what point in your recovery did you do that? How did you do it? How did it go?
I had done outpatient and inpatient and started building a bit of a recovery community and friendships. But I was struggling, returned to use, and I was trying to get back out of that use. I started buying Suboxone off the street. I didn’t want to enter a program and jump through all the hoops. I was like, I just need to get stable on Suboxone. Eventually, that became hard to acquire on the streets and became unsustainable. So, I looked for a doctor with the least hoops to jump through. There was one in Massachusetts, but it was very expensive. I didn’t have insurance.
It was $200 for a 15-minute call to get a prescription. I knew that that wasn’t going to be a long-term solution. So, I started to stock up on medication. I didn’t want to detox when I didn’t have the money for a visit and then potentially go back to use. I couldn’t be honest; there’s not an option where you can work with your doctor to stockpile the medication. My solution to be the safest for me was to stockpile them until I couldn’t afford to go any more legitimately and then carry on. I started to wean slowly at a pace that worked for me for over a year or two. I would have loved to do that under a doctor’s care in an open, honest conversation, but our regulatory and treatment environment did not allow that. I had to make a decision that was in the best interest of my recovery, my safety, and the financial reality.
You didn’t have MaineCare, and you tapered yourself down, going down two at a time or something.
Even slower than that, I was probably on eight milligrams, and then I went, at first, maybe down to six, then down to five, then four, then three, and then even more slowly. I did that over time, allowing my body to tell me what it needed. I would try six for a while, then go up to eight for a day, and then back down to six, which helped me. Even on a small dose, like one or two milligrams, it was uncomfortable to come completely off, so I’d skip a day and then take one. It wasn’t without its challenges and uncomfortability; it’s a powerful medication. I got a tapering schedule online, researched, talked to friends, figured it out, and let my body guide me.
That’s pretty impressive. Thinking about the topics we’ve discussed or things I haven’t asked you about, do you have any other advice for providers on helping people enter and maintain recovery?
The more we can meet people, not in a cliche way, the more we meet people where they’re at or see them as whole beings, the more they will engage. We can say those things, but people must feel it and know it’s true. When people are in the reality of substance use, we get good at detecting bullshit. We know when people are treating us as humans, when they’re treating us as a diagnosis, or when they’re treating us as criminals or liars. When I was lying about something, it was because I didn’t feel safe to be honest, or the example I gave about the doctor, there wasn’t a possibility for me to be honest, given that they would cut me off immediately if they knew I was stockpiling.
Suppose we see that people, even when we want to label them as manipulative or dishonest, there’s something underneath. They don’t feel safe, or maybe there’s not an option for them to be different, or maybe there’s a circumstance or a context underneath and continue to support them to figure out what’s needed or how they’re going to make decisions or what support looks like for them or whatever. That’s more powerful than anything else. Whenever I felt like I was a checkbox, paycheck, or just another number, it reinforced that I was useless, a nobody, and a burden. It reinforced all the things that drove me to use. I think the more providers can remember that even in their frustration and annoyance with folks they’re supporting or their desire to vent, we feel it. If you’re in another room talking to your coworkers about Jimmy or Bob being this annoying person who blah, blah, blah, we feel it. Figure out how to process your stuff and recognize that there’s a complex story no matter what we’re doing. I wanted the same thing they wanted; I didn’t want to feel this way anymore.
No one wants to live that life or choose that life. Thank you so much. Is there anything else that you’d like to offer or add that I didn’t ask you?
I will end by saying that the best people to tell you how to support them are the people themselves. They know what works and what isn’t working. Anytime providers can check in with the people in their programs about how their programs are impacting them or what messages they might be inadvertently projecting, I think the more we can bring people in as partners to programming rather than recipients of programming, and the stronger, more flexible, evolving, and effective space providers create.