Suzanne, tell us a little bit about your experience with SUD treatment.
I’ve been in treatment since 1999. It was very hard to get into treatment initially. They tell you to call back every day. Part of it is they want to see how serious you are, but it can drag on for months. The thing with somebody that’s using is they tell you to call back tomorrow, but tomorrow, you might have a pocket full of money, and treatment is the last thing on your mind. I’ve often wondered how many people die or wind up incarcerated while waiting to access treatment and whether they’re just dragging their heels about letting people in. Clinics should be able to take more people, not just based on bed capacity, when you’re in an area that obviously needs a larger clinic.
I’m hoping that some attitudes have changed since the 90s. But certainly, an important lesson to hear is we need to make it easier, not harder, for people to get into treatment.
Yes. If somebody is vulnerable and reaching out, you should grab the hand that they’re reaching with. Don’t make them keep coming back.
Tell us about your connection to treatment and recovery over the years and more recently.
When I first got into treatment, it was a terrible clinic, but the nursing staff was wonderful, and if it wasn’t for the nursing staff, I don’t think I would’ve made it past the first 30 days. In fact, it was a nurse at my original clinic who introduced me to the doctor whose clinic I now go to. And he’s wonderful – anybody can email him questions, and he will email you back even if he doesn’t know you, which is very good because people have a lot of questions. There are a lot of myths and misinformation surrounding methadone, even in this day and age.
What has been helpful vs. not helpful in your interactions with the different types of providers and support specialists over the years?
When they approach the patient as a person with a disease instead of a moral failing, it gives the patient a feeling of belonging. Things like that—patients being looked down on as lining up for their legal high—still go on these days. I think when they changed the law and got out of the cookie-cutter modality, that was important because what’s good for me might not be good for the next person. When I first got into treatment, you couldn’t get more than two weeks’ worth of take-homes, and even that depended on the clinic. However, after the law changed, providers had more leeway with each patient. Some people need to go to groups every week; some people don’t. Some people can’t handle take-home medication; others can handle a month’s worth without a problem. You can’t treat them all the same. My needs, being in treatment for so long, are different than those of somebody who just came into treatment. It’s not a one size fits all.
When I first started treatment, I was very curious, and I wanted to learn everything that I could. I went out on the internet into chat rooms, connected with other advocates, and attended conferences and things like that, which was very helpful. Not only that, I enjoyed it immensely. After about five years, I had to step back a bit because I needed to work with a paid job and take care of my son. Some of the parents didn’t want their children to play with my son because his mother was on methadone. I had to step back a little to avoid embarrassing him.
What’s not helpful is there is a terrible turnover. By the time you form a relationship with somebody, they’re off to their next job, and you have to start all over again. That can be very detrimental because not everybody has the same viewpoint. You might have one clinician, clinic director, or staff person with whom you get along very well, but the next one is a personality clash. It would be better if there were more stability in people’s clinicians. The pharmacist and I are the only original people still at the clinic from the opening.
In your interactions with providers, what’s worked well in terms of connecting you with other peers in recovery or mutual support programs? Do you find that that’s something that providers have done?
They’ve gotten a lot better at it. Not only can they now connect you with other treatment providers, but they are also able to connect people with other services in the community that they might benefit from, like medical referrals and food pantries. They take a holistic approach, not just centering on substance use but anything that can improve quality of life because that’s really the bottom line.
What are some of the most important elements that have supported your recovery?
It’s just staying in recovery because it’s like a domino is falling; you return to use, and then there’s legal trouble, you wind up unemployed, and you wind up homeless. If you can stay in recovery, then the other pieces fall into place.
And that is certainly not easy. What has been helpful to stay in recovery?
The medication, and friends and family. When I first got into treatment, I didn’t have a license, but people went out of their way to make sure that I could get to the clinic to get my dose. That led to getting employed, which led to getting money to pay court fees to get the license back. Like dominoes, instead of everything falling down, they were starting to stand back up, and it all centers around staying in recovery.
What would be your advice to providers who are working with people trying to get into recovery?
Make treatment is more accessible. And for at least the first 3 to 6 months, try to remember that they’re a work in progress because a lot of places have firm rules, and if you have too many positive drug screens, they’re going to throw you out. Maybe they have too many positive drug screens because their dose isn’t correct, or they need some other sort of medication because they have some co-occurring disorder. Be a little more lenient with people new into treatment because they’re fragile.
What have you seen change for better or for worse over the last several decades in treatment and recovery?
When I first started going to a clinic in Maine, it was very progressive. The federal laws had recently changed, and Maine was one of the states that had wholeheartedly jumped behind the new regulations. When they were opening the clinic, they had me talk to people from the DEA and people’s families to try to explain what methadone treatment was and how it worked. But over the years, people in the community have gotten more alarmist. Whereas I used to get monthly take-homes, now I don’t, even though I didn’t do anything wrong, and I travel a great distance. They also made me change my medication because I always took the dry tablets, but now I have to take liquid unless I want to cut down on the take-homes, and then I do have to take the dry tablets again. I didn’t do anything wrong; I’m just being lumped in with everybody else. The state started as being very progressive with methadone, but over the years, based on the reaction from the community, they’ve clamped down, and people are being swept up in this that didn’t do anything wrong, but they’re still being punished. And I feel that it’s broader than just my community; I think it’s the whole state. Some people have the opinion that if I got hit by a truck today, it would be a methadone-related death, or that if methadone is on the streets, it has to be coming from the patients and couldn’t be anybody from a nursing staff. Unfortunately, those people are loud. I’ve also seen it loosen up and get tighter depending on the state authority at any given time.
What are your thoughts on what providers can do to help overcome the stigma of methadone?
Education, open houses with any current patients who would be interested in attending so that people could put a face to a methadone patient, maybe helping clinic providers AND patients do some sort of outreach, like volunteering at a food pantry. They could say, “This meal is brought to you today by xxx Clinic, or something like that.” This might give patients a better standing in the community: connections, relationships, real people.
Those are great ideas. Is there anything that I haven’t asked you that you would like to share with the SUD treatment provider community that you think is important for them to hear?
Just make treatment available to as many people as you possibly can in the most accessible way you possibly can. It’s a shame that there’s so much paperwork that goes along with each patient that people have in treatment because that makes it hard for the provider to have as many as they’d like. Remember that new patients are fragile; cut them a little slack, applaud their progress, and let them know when they’re doing a good job because it’s hard. Some days, it’s harder than others; a little validation can go a long way. Continue using the holistic approach and any other community resources the provider could help the patient with. When you’re using, you slowly lose everything before you bottom out and want to go into treatment. So, it will take a little while to get it back; the more positive you feel and the more things are heading in the right direction, the easier it is.