Thinking back on all your interactions with providers, what has been the most and least helpful in your experience with MOUD prescribers?
Since moving to my current practice setting, I’ve had two fantastic nurse practitioners. They take a lot of time with me and look at health holistically. When I eventually did taper, I’d gotten down to the point where it was so small it was hard actually to keep in your hand. My nurse practitioner just said to go every other day instead of struggling. That was simple but worked like magic. It just helped me experience that I did a day without any, and I am fine. Then I’d try two days, three days, and I got off it very quickly. Their program didn’t have peer support, but I think they fulfilled all of that themselves. Sometimes, it’s a very busy clinic, so there can be a wait, but they’ll always get back to you if something’s an emergency.
The only thing I didn’t care much about was the outpatient services to start on Suboxone. I didn’t feel like they were very helpful. You’re in with an assortment of people, which can be good, but sometimes you don’t relate to their stories. I also think the group educational piece could have been better. I felt like I was doing it to get on Suboxone, which probably everybody else thought; I didn’t learn a lot.
MOUD Experience
How have transitions between providers been for you? Was transitions difficult? What went well, and what didn’t?
My one nurse retired, and then my next nurse came in. I had at least one or two visits with the two of them to transition, which made me feel comfortable with the new nurse practitioner. They were different, but they were both incredibly smart and compassionate, so there was no problem with the transition at all. Over time, I got closer and closer to my new provider.
MOUD Experience
What do you think contributed to that successful transition?
I think the fact that they cared that I was transitioning made a difference; they knew there was a rapport between me and the previous provider. They honored that relationship and wanted to make sure that I would feel comfortable and be myself with the next provider. They were mindful and picked the person I’m with now because she knew it would be a good fit.
MOUD Experience
When you first started on Suboxone, how was that introduced, and did you have concerns?
I think the reason we went so high on Suboxone initially was that I kept having headaches. They’d ask how I was doing, and I said, well, I’m fine, except I have a headache, which tends to turn into migraines. The migraines could be debilitating. I think that is why we went up, as they were trying to get me to a level where I was not experiencing headaches. After taking it, I immediately noticed an uplift, so mornings were much better for me. The Vicodin had gotten to a problematic level, and it was no longer helping me with my anxiety.
MOUD Experience
Turning to the topic of tapering, describe how you knew when you felt ready for that and how that went. What kind of support did you get during that process?
Not sure why I did it. When I did it, it was a difficult time in my life. I had gotten low enough when they asked if I wanted to taper. I thought, well, I’ll try it. I’ll see how I feel. I know I can always go back. There was no penalty for wanting to go back on. So, I tried it. And then, as I said, once you start with a one-milligram film and cut it into tiny pieces, it starts to become a little ridiculous. What is this doing for me now? As I said, being told to skip a day is super helpful. I was really afraid that I would feel withdrawal because there was one point where I got down to two milligrams previously. This was many years before, and I thought I could go off by myself. I just stopped, and I went into withdrawal pretty severely. I tried to stay off for two weeks but felt the withdrawal was just too bad. So, I went back on Suboxone at eight milligrams for probably at least eight or nine years. I don’t know what made me think I could just go off at two milligrams. It just seems so low compared to what it was before. I guess I thought, oh, this is no big deal. I also didn’t run it by my provider, and that’s odd, too, because I was comfortable with them. I just thought, oh, well, let me try it. That was a big mistake.
MOUD Experience
What was your experience with one-on-one counseling then, and was that helpful?
I’ve always done weekly therapy. I had an excellent therapist, and I also do talk therapy with my psychiatrist; I’m super lucky. She manages my medication, but we also do an hour-long talk. I think through most of that time, I was pretty stable, and I was doing the weekly therapy with my LCSW and then talking to my psychiatrist every second week. Then, unfortunately, my therapist retired. I have another therapist now, but I don’t feel super aligned with her. She’s very nice and intelligent, but she’s got a real talker in me, as you can see from this interview. It is not talk therapy. It’s a different technique that’s not quite working for me. Also, my psychiatrist is planning on probably retiring next year, so I’m a little fearful. I haven’t found anybody, I’ve been looking. Right now, it isn’t a great time to find a provider. I think it has been a big part of my stability in life, being able to talk to somebody freely.
MOUD Experience
As you mentioned, there weren’t peer coaches when you started this journey. Have you had other forms of peer recovery support, groups, or recovery communities, and what have your experiences been with these?
No, I haven’t. I haven’t felt the need. What’s more problematic is my mood disorder. I’d be more interested in possibly doing a group for that because I have more issues with my mood. My mental health issues are much more complex. I feel quite isolated. I don’t have a lot of friends who have mental health disorders. I don’t know if I am interested in having a peer recovery specialist; I don’t feel the need for one. Certainly, I think it’s helpful for many people to have that available.
MOUD Experience
You’ve had quite a good experience with the healthcare system and with providers, and I heard things as they listened, took time, there was no judgment, were a good fit, and cared about you. Are there other things thinking of a provider audience reading this you want them to hear, things that you feel are necessary for a good therapeutic relationship, or anything we might’ve missed about things that didn’t work well to avoid?
I think the staff around the provider is essential so that you’re not met with judgment at the very beginning on the phone or when you go to check-in. I believe that everybody needs to be on board. I was never treated poorly by any of the providers or staff. In this day and age, I know time is of the essence, and providers don’t have much time, but taking time and getting to know the person and who they are is important. If you know your patients, you’ll learn more about where they have difficulties and strengths. That’s what has helped me with my providers. They know where I’m tentative and where there are no problems. I’m really happy with everything I’ve gone through with my providers. I don’t stigmatize myself, and I try not to with others. When I call the pharmacy, I act like it’s a routine prescription, just like any other prescription, like antibiotics, and they treat me like every other patient. I’ve had great experiences with my pharmacy. I act like this is a medication that helps me, and there’s no reason to stigmatize it. Because my providers didn’t stigmatize it, I didn’t. I also realized that if I’m forthright and feel like this is good for me and helping me, other people should be on board, too. I’ve been met with a lot of acceptance, and I’m out about this with my friends. I’m a pretty candid person. I don’t tell everybody. Indeed, you can’t, but certain people and my family know. I think that started with my providers because they were so helpful and underscored that this medicine would be good for me and help me. I think being on Suboxone and being able to take it home has allowed me to have stability in my life. It helped me to stay employed and keep my life moving. I have what I need, I can function much better in everyday life, and it gives me stability. I wish that for other people.
MOUD Experience
It sounds like it was a two-way street. You were a very forthright and honest customer and patient, and you enjoyed a good relationship with your provider, part of which I’m sure certainly helped. I think providers and systems are improving, and hearing directly from people who have gone through this system is valuable. Thank you so much for taking the time with us; we appreciate it. Thank you.