An episode of “Changing the Conversation” podcast
Dan Johnston and Raquelle Mesholam-Gately discuss the value of partnering with peers in mental health treatment and research with host Katie Volk. This episode is sponsored by the New England Mental Health Technology Transfer Center Network (MHTTC).
October 12, 2020
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Katie Volk, Host: [10:05] Hello, and welcome to Changing the Conversation. I’m your host, Katie Volk. Today’s podcast is sponsored by the New England Mental Health Technology Transfer Center. Our topic today is how peers, researchers, and clinicians can work together to promote recovery. I’m joined by Dan Johnston and Raquelle Mesholam-Gately. Dan is a Certified Peer Specialist and writer who has shared his story of recovery and supported people with lived experience in the Boston area and beyond. Dan, welcome.
Dan Johnston, Guest: [00:33] Thank you, Katie. It’s great to be here with you all.
Katie: [00:35] Raquelle is a clinical psychologist, a neuropsychologist who directs the Consumer Advisory Board and Neuropsychology Research in the Psychosis Research Program at the Massachusetts Mental Health Center, Public Psychiatry Division of the Beth Israel Deaconess Medical Center and Harvard Medical School. Raquelle and I also work together as part of the New England MHTTC. Raquelle, it’s so good to have you here today.
Raquelle Mesholam-Gately, Guest: [1:00] Katie, thanks so much. I’m thrilled to be here joining all of you today.
Katie: [1:04] So Dan, I’m wondering, how did you come to the peer recovery world?
Dan: [1:10] My story begins as many certified peer specialists, as all workers within peer support have their stories based in, is in lived experience of some trauma-based recovery, whether that’s mental illness or homelessness or substance abuse. In my situation, it was mental illness. I started feeling signs of disorganized thinking, which started as a fascination with random ideas and an intriguing liminal space between nonsense and creativity. Which as a writer, I was drawn to back in between the end of high school and going to the first college I went to. That said, I went off to college and did quite well at first and then found that it was harder and harder to focus on work and go to class and interact with my friends, especially given some ideas that I had of every piece of work, especially with writing, I did, had to be spectacular.
Dan: [2:23] And so my experience at school got to a point where I wasn’t going to class, wasn’t doing any work based on thinking that I should be doing the best of the best. And that led me to withdrawing for a semester and spending time at home. And once again, feeling like I should be doing the best of the best, which to me meant going back to school exactly where I was. But in lieu of the struggles that I was having with just disorganized thinking, not being able to get up in the morning, not able to sleep at night, not seeing my friends, my goals of continuing from where I left off became farther and farther away and more unrealistic over the year that I spent seeking health of clinical professionals.
Katie: [3:17] It sounds like you crossed the line from creativity in a productive life affirming way and into some other space that wasn’t serving you well.
Dan: [3:29] Very much so. I spent more than a year navigating the mental health system, trying to find the right treatment. And finally, after struggling and as things weren’t progressing, I finally got in touch with the CEDAR Clinic, which stands for the Center for Early Detection and Assessment and Response to Risk.
Dan: [3:53] And as I was going through research interviews there, I felt a connection with the questions I was being asked. From the response to those assessments. I was finally able to hear a diagnosis that made sense to me, which was being at clinical high risk for developing psychosis. Which at that time was a viscerally positive feeling to hear something that sounded not only accurate, even though it was the first time I had heard those words, but also to be met with a choice of a number of options for treatment to keep that feeling of continuity and self-determination that I had really wanted in getting back to my old life as I saw it at the time, going forward in treatment.
Dan: [4:47] And so those included group sessions, working with other people who were experiencing similar symptoms as I had been or was, and also individual and family coaching. And also psychopharmacology, all of which I had the choice to participate in and I also chose to. And then after a couple of years as being a part of the CEDAR Clinic, I had the great experience of being able to speak about my treatment and my recovery publicly, which allowed me to take the struggles I had been through and put my own words to them.
Katie: [5:27] Yeah. It sounds like that choice and self-determination really was critical for you in helping you.
Dan: [5:35] It certainly was. And as I continued to speak about my experience publicly, both with peers and also clinicians and researchers, such as Raquelle most recently, it’s always a very empowering and dignifying experience to take the risk to share one’s story publicly. And also to be invited and also hear the response of the people with whom you’ve shared your story. It’s always, for me, been a really heartening experience.
Dan: [6:10] And over the course of the past few years, I’ve not only been able to do that with peers and researchers and clinicians, but also pursued and return to much of what I’ve sought to continue for many years, and going back to school and writing. And I’m finally at a point where I have just completed a Certified Peer Specialist program run by the Kiva Centers in Western Massachusetts. And going through that training, I felt that a lot of the words and the values that were most important to me and most strengthened by the CEDAR Clinic’s approach, were very much at the top of the priorities of being a peer specialist, and it was in the field of peer support.
Dan: [7:00] For instance, the very first code of ethic of the 14-point Code of Ethics, is that peer specialists will be guided by the principles of self-determination for all. To inspire hope, to help people in treatment determine their own path for recovery. Which in my case, was continuity and returning to where I was and going forward on a new path.
Katie: [7:29] I want to circle back to something that you had said at the beginning, and I think seems to be one theme that’s traveled with you through your journey, is that research was one of the things that hooked you into CEDAR to begin with. Did I understand that right?
Dan: [7:39] Yeah, actually the first time I went to the CEDAR Clinic, I really was so confused in life that I thought I was just going to a place to do a lot of research studies. And then that led to going through a comprehensive assessment, which did factor into research studies that I participated in, such as the MAY Study [Mental Health Attitudes of Youth]. And then that coincided with getting highly specialized treatment for early psychosis at the time where it was needed, and provided the early intervention at the right time.
Katie: [8:25] So interesting. Raquelle, I know one of the hats that you wear is around research. I wonder if you want to talk about peers and research a little bit as it relates to our conversation here.
Raquelle: [8:36] Absolutely. I want to specifically mention the work that I’ve been doing with the Consumer Advisory Board at Massachusetts Mental Health Center. Just because of all the research that I’ve been doing for almost 20 years on serious mental illness, that is the part of my work that I feel has been most valuable to me.
Raquelle: [9:03] So, as you mentioned before, I’m a psychologist. I’ve been working in the Psychosis Research Program at Massachusetts Mental Health Center for about 20 years. And I joined the Consumer Advisory Board, or CAB as we call it, at Massachusetts Mental Health Center at the end of 2012. The CAB had been born from this wonderful initiative from the Massachusetts Department of Health to expand engagement of people with lived experience in our research vendor operations. The CAB conducts participatory mental health research with a particular emphasis on psychosis. And we approach that task with the perspectives of people who have the expertise of lived experience with mental illness, as well as people with clinical and research experience, regarding mental illness or both. And we recognize the unique strengths that each brings. It’s done as a partnership in which all of our contributions are equally valued.
Raquelle: [10:09] And I just want to say personally, that this partnership with the CAB has truly made me a better, more mindful researcher, clinician, and person. It’s really been a life-changing experience for me, and I am honored and humbled to be part of the group. My hope is that one day all of our research and all of our clinical work will be done in collaboration with the people that we’re trying to serve, because frankly, that’s the way it should be. I also say that too from the perspective of someone who’s a family member with serious mental illness. And I see so much the value of collaborating with people who have that expertise of lived experience in terms of informing both the clinical and research work that we’re doing.
Katie: [11:05] It seems like so much of the conversation here, and this has been my experience in many ways over the course of my own work, is that this integrates our identities. And Dan spoke about that. Raquelle, you’ve spoken about that a little bit, that this is a really … it’s a holistic approach that we’re not all just the sum total of diagnoses or of our professional hats, or of what goes on in our family, or as clinician or as researcher or as peer. It really seems like it unites so many of these things.
Dan: [11:37] I wanted to echo. I’ve been also thinking about something that Raquelle just said, which is that with her hope of all clinical, the research work, being done in tandem with people with lived experience of likely the thing that is being researched. I’ve also felt from a treatment side coming at it from the other angle, how important and how much of a difference it would make systemically that if, even at the time of hearing a diagnosis or perhaps ideally before, to be met with a story of hope, a story of recovery, a story of resilience.
Dan: [12:18] And I think that is what partnering with peers, and as a newly Certified Peer Supporter, that could be well provided by many whom have sought care for any number of dramatic events.
Katie: [12:35] Dan what that makes me think of is a question I have for both of you, is what advice do you have for clinicians who are looking to bring peer specialists more into their work? Or even just looking to partner more with people in recovery?
Dan: [12:51] One of the biggest parts of peer support is establishing a connection with those with whom you’re supporting in a clinical side, those who you’re treating. But we as peer supporters have such a mutual relationship with those with whom we support. And a very big part of that is to share your own experience, to share your own struggles.
Dan: [13:15] And I remember working with one of my therapists at the CEDAR Clinic, one of the moments that I remember most was how I was talking about struggling with writing. And she was working on her dissertation at the time for clinical psychology, and she brought up how it was difficult for her to write her dissertation or to find the time. And we ended up talking about writing as a behavior, which is a somewhat clinical way of talking about a theory that I’ve come across in creative writing programs, of just art as a habit. So it’s out there and it’s definitely something people can bond over and make a connection from.
Raquelle: [13:56] All right. Thanks, Dan. And I think I’ll just add that it’s important for clinicians and researchers to remember that we unfortunately still live in a world with stigma, that’s not always friendly to people with lived experience with mental illness. And in partnering with people who have that experience, that person is considered a valued member of a team that’s doing beneficial work, which contributes to recovery and can imbue a greater self-respect.
Raquelle: [14:34] I found by doing this work, that authentic peer involvement really honors person-centered and recovery-oriented perspectives. And it recognizes the expertise that’s found in lived experience and respects patient or peer autonomy. And then that way you enhance both the impact of the clinical work and the research that’s being done, as well as the value and the relevance to those that aims to serve.
Raquelle: [15:06] And I’ll just also very briefly mention that the participatory research that’s been done in behavioral health so far, has proved to be feasible. It increases the applicability, trustworthiness and the usability of the results. It expedites the semination and clinical and real world settings, and especially so for underserved populations. So I just really want to underscore all of those points again, about not only how it benefits the person who’s experiencing the illness, as well as the clinician and researcher, but more broadly has tremendous benefits in terms of the research that’s being done.
Dan: [15:57] One more part of peer support that really has stuck out and as the past half year has persisted, I feel like peer support and partnering with peers is such an effective way of providing access to communities that have not had access to healthcare, mental health care, or just compassionate care in the past of minority communities. And people in substance use facilities or homeless people, all of whom could be one of us, be a provider for those very same people someday if we give them the compassionate and provide them the support that we would want for ourselves or our loved ones.
Katie: [16:47] Yeah, I so agree. I really appreciate both of you taking the time to have a conversation today. It was very good to have you here.
Raquelle: [16:54] Thank you for inviting us to be here, Katie. And for opening up this important conversation, I really appreciate it.
Dan: [17:03] Thank you, Katie. And thank you, Raquelle.
Katie: [17:06] And to our listeners, join us next time on Changing the Conversation.
Erika Simon, Producer: [17:10] Visit c4innovates.com and follow us on Twitter, Facebook, and LinkedIn for more resources to grow your impact. Thank you for joining us. This episode is sponsored by New England Mental Health Technology Transfer Center, New England MHTTC, and was produced by Erika Simon and Christina Murphy. Our theme song was written and performed by Peter Hanlon. Our host for this series is Katie Volk. Join us next time on Changing the Conversation.
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