Voices of Recovery, Episode 9: Wellness, Recovery & Action Plans

Dr. Mary Ellen Copeland is the founder of Wellness Recovery Action Plan, a widely respected and widely employed approach to mental health care and maintenance. According to the website for the Copeland Center, “WRAP is a personalized wellness and recovery system born out of and rooted in the principle of self-determination. WRAP is a wellness and recovery approach that helps people to: 1) decrease and prevent intrusive or troubling feelings and behaviors; 2) increase personal empowerment; 3) improve quality of life; and 4) achieve their own life goals and dreams.”

Episode:

Episode Transcript:

Ken Duckworth: [0:00] Welcome to "You Are Not Alone ‑‑ Voices of Recovery."

[0:02] [background music]

Ken: [0:03] Hi. I'm Dr. Ken Duckworth. I'm a psychiatrist and the chief medical officer for the National Alliance on Mental Illness, or NAMI. I'm the author of NAMI's first book, "You Are Not Alone ‑‑ The NAMI Guide to Navigating Mental Health, With Advice from Experts and Wisdom from Real People and Families."

[0:19] For You Are Not Alone, I interviewed well over 100 people. I interviewed people who had their own mental health experience and families. I wanted to share some of these conversations that I felt had key teaching points in this podcast.

[0:34] Mary Ellen Copeland is the founder of the Wellness Recovery Action Plan, or WRAP, which has helped millions of people.

[0:43] I'm quoting here. "WRAP is a personalized wellness and recovery system born out of and rooted in the principle of self‑determination. WRAP is a wellness and recovery approach that helps people to, one, decrease and prevent intrusive or troubling feelings and behaviors. Two, increase personal empowerment. Three, improve quality of life. Four, achieve their own life goals and dreams."

[1:09] That's from the website of the Copeland Center for Wellness and Recovery, an organization named for Mary Ellen and based on this model she developed. When I interviewed Mary Ellen and I told her about how scared I was to write a book, she said, "Ken, you should develop a WRAP plan."

[1:26] I like this approach because it speaks to how universal some of the principles are to help people who are struggling with an experience. With a WRAP plan, any of us can address thoughts and feelings and learn to reduce, modify, or eliminate those that are most troubling.

[1:42] WRAP is a life‑changing program for people all over the world. It was a great honor to talk to Mary Ellen Copeland and learn how this all got started.

Mary Ellen Copeland: [1:52] It started in the late '80s when I was looking for answers for myself. I was having really extreme moods, a lot of deep, deep depression. I think the time that I went…

[2:08] My mother was in the hospital for eight years when I was kid. From the time I was eight until I was 16, she as in one of the big state mental institutions. She had 150 electric shock treatments.

[2:23] When I, on one of my hospitalizations, as I was leaving the doctor said, "If that doesn't work, next time we'll do ECT."

[2:32] I said to myself, not to him, "I'm never coming back."

Ken: [2:35] For you.

Mary: [2:36] For me.

Ken: [2:36] For you?

Mary: [2:37] Yes. I said to him, "I'm never coming back," because I had seen what it had done to my mother. She lost so much memory. At that point, I said, "I need to find out how other people are dealing, and coping, and getting on with their lives with these kinds of things going on, these kinds of moods."

[3:02] I asked my doctor, a different doctor than the one that had discharged me from the hospital. I asked him and he said he'd have that information the next time.

[3:12] I said, "How do people cope? How do they get out of this situation?"

[3:15] He said, "I'll tell you at the next session." When I got to the next session, I asked him. I think he had hoped I would forget.

[3:24] He said, "We don't have anything like that. We don't have any self‑help kinds of strategies. We have medications. We have residential treatment centers. We have other kinds of treatment protocols, but we don't have that."

[3:40] I thought a lot about it. I thought that the place that I'm going to get this information is from people like my mother and others who have gone through this and figured out how to cope and gotten their lives back.

[3:55] I put a blurb. In those days, we didn't have email. I put out a blurb that went…I think it was in the NAMI newsletter and it was in "Mental Health America" and various mental health newsletters that I was familiar with.

[4:09] I got over a hundred people who volunteered to be part of a study. My study was primitive. It was…Actually, I was working with our local people that do the…I was working with local Voc rehab. That's who it was. Her name is [inaudible] at the moment.

[4:31] I told the person I was working with, a wonderful woman, what I wanted to do. I wanted to do this study. She said, "That's great. We'll get you money."

[4:41] There was a program going on at that time. She said, "There's this program that they're giving $5,000 to different people to study how that would affect their lives. They're not giving it to this group. They're giving it to this group. Let's get you the $5,000. We'll get you going on this study."

[5:01] I developed a set of questions that I wanted answers to from people. I sent it out to all the people. After I sent it out, showed it to a couple people. They said, "That's no good. You have to have five, four, three, two, one and people check which…You can't just ask people open‑ended questions."

[5:22] I said, "I don't know the answers. I don't know what we would say here. How can you write something that people are going to respond to if we don't even know what the question should be?"

[5:31] From the first responses, I developed a second set of questions and then third set of questions and began compiling that data. That was fascinating, what I learned. People wrote. They wrote. They just wrote and wrote and wrote. They sent some on tapes and they wrote in the margins of the booklets. They were really enthusiastic about being part of this.

[5:56] From that, I learned a lot of things and began incorporating them into my own life. Then, saw a structure to it and began giving workshops and began to think about how I could get this out to people.

[6:13] NAMI was actually one of the first supporters that I had as I was beginning to do this work and where the work really…This is sort of not planned. I'm just talking off the top of the top of my head.

Ken: [6:28] You're doing great. This is an open‑ended conversation.

Mary: [6:34] As I was learning these things and starting to practice them in my own life and seeing what a big difference it was making, I started having workshops in my home. I had several workshops that were very well attended and people liked them a lot.

[6:53] Anyway, I went to the NAMI national convention. I presented there. In those days, people who had actually had an experience of mental health issues were not the speakers. The speakers were all doctors and people with…

Ken: [7:11] Do you know what year that was?

Mary: [7:14] Probably around '89.

[7:18] It was interesting. There were all of these very professional speakers and then there was me. They had me set up to present. They took the beds out of one of the hotel rooms because they didn't think anybody would come.

[7:36] They took the beds out and just had some chairs and I was up in the front. There certainly was no social distancing at that time. They didn't think it would be of interest, but the room was packed. Then, there were people out in the hall trying to get into the room. There was a lot of interest. A man came in and started filming it. He eventually made a video of the work.

[8:02] That was the place where I got a lot of context. The work was growing from there. I was teaching it. I was teaching it all over the country in various settings where people asked me to come.

[8:19] Then, New Hampshire asked me to do a series of eight full days in every county. I started doing that. I was just teaching them self‑help methods, self‑help strategies.

[8:32] Vermont and New Hampshire have an interesting relationship. If New Hampshire does something, then Vermont will or if Vermont does something, then New Hampshire will.

[8:40] New Hampshire did it and then Vermont decided they had to do it. We were doing this series of workshops in Northern Vermont in 1997. We went through a lot. It was all spent on self‑help techniques and doing some planning for yourself.

[8:59] A woman, Jessie Parker, stood up and said, "This is all well and good, but I've been in hospitals all across the country. I could never begin to figure out how to incorporate this into my life."

[9:14] With that very group, there were probably 25 people. Some of them were in the throes of very severe mental health issues that we were dealing with all through the workshop. We had a man who only spoke gibberish and had to keep getting up and going outside. Somebody had to go with him. We had other people who just put their heads on the desk and they couldn't lift their heads off the table.

[9:39] It was a group of people who were really struggling. We decided to address Jessie's issue by spending some more time together. That's was when WRAP was developed, at that workshop. Vermont gave us more money to have extra days. We spent three full days going over and over and over what it should be, what it should say.

[10:04] This was all coming from people who have really severe mental health issues. From there, before that, I had been teaching a lot of teaching about support, teaching about specific things people could do to help their wellness.

[10:18] After that, people just wanted to talk about WRAP, and it blossomed. I wrote a book about it that summer and started spreading it through a website. I had an early website, and it caught on, and that's what people wanted to talk about. It's grown and grown and grown ever since.

Ken: [10:39] Do you have a sense of how many people have used it, how many hospitals have adopted it, how many state mental health authorities have taken it on? It's always in the air. Do you have any sense of it?

Mary: [10:55] No. I know it's in countries all over the world. We've done a lot of translations, and we went to some of those countries, spent quite a bit of time in Japan and in the United Kingdom. My husband became a key part of this and traveled with me.

[11:18] He got to the point where I was at a conference in California and I had laryngitis. I could talk for a little bit, and then my voice would totally go, and he could pick up on the word. He was very handy.

Ken: [11:32] That's true love.

Mary: [11:34] Right. [laughs]

Ken: [11:36] How did the development of this impact your experience?

Mary: [11:41] As soon as we did it, as soon as the group worked it through for three days, I took it home and developed one for myself that afternoon. I sat in a chair, I remember doing that, and saying, "I'm going to try this for myself," because I was coping all along the way. I was doing what I found from people I had to do.

[12:02] That's how I was getting by, but it's not that everything goes away magically. I wrote a WRAP. I developed one, and I worked on it more and more over time. Made a big change in my life. Now, I'm constantly revising it, finding new things that work. It's always in the background of my life.

[12:23] Have I done everything today that I need to do is say as well as I can, "This happened that was upsetting. These, I know, are all the things I can do so that it doesn't throw me into a tailspin"? "These are early warning signs," I was thinking that the other day.

[12:39] I've got some early warning signs, and so that means that there are things on my plan that I have to do because I need to back myself down so I don't get up to the when things are breaking down section. Still, I can work that. I haven't had to in a long time, but I can work that.

[13:00] We have a rather intensive crisis plan that people thought should be a part of it, and it's been very helpful and very good, but I haven't had to use mine. Then, there's a post‑crisis plan. We have to take them from the crisis back to the…That somebody else said, we need that.

Ken: [13:20] You told me, and I'm not sure I understand it correctly, so please forgive me, that you retired and you sold WRAP or you have an organization that attends to WRAP. Forgive my lack of understanding.

Mary: [13:33] Through those years, up until 2015, we were doing that work intensively. We published our books ourselves. There were some books that are published by New Harbinger Publications, the very early ones. The real WRAP books, we were publishing ourselves.

[13:53] We found that using publishers, we could do it ourselves and have a lot more outreach. That's what we did. It became that I was traveling to teach, and writing books, and selling books. We developed a press called Peach Press.

[14:17] In about 2005, we started the Copeland Center to take more responsibility for the training aspect, teaching people how to facilitate WRAP groups. That was in 2005. In 2015, I was ready to retire. Not really ready to totally leave the work, but ready to retire from the fast pace of it.

[14:43] That's when we ran into Advocates for Human Potential. They seemed to us like the ideal people to take it over and move it forward. I've continued to work closely with them and getting a lot of specific initiatives going. The one I'm most excited about is the work in the prisons.

[15:04] They've hired a full‑time WRAP prison person from Pennsylvania who's worked a lot in the prisons. I'm working now pretty closely with a couple of men who were in prison in Pennsylvania for 27 years, they're brothers, for a crime they did not commit.

[15:26] When they went in, they said to their mother and grandmother, "What do we do now?" They said, "You're going to make the best of it." They've been teaching WRAP in the prison for years and being supportive of the other prisoners.

[15:42] Recently, they got out. They threw a whole series of how hard it is for Black men to get out. Even the person who committed the actual crime had been in and out, and they were in still.

[15:59] They got out in February through some kind of a process. Then, there's more process that goes on for the rest of the year. I'm enjoying that work with them.

Ken: [16:09] You see this, the new development is in the prison section of our society. Do you see other applications for WRAP going forward?

Mary: [16:21] They're almost endless. Anybody, any human being could use a WRAP and could put it to good use. Vermont was a leader in pushing WRAP out.

[16:42] Early on, with all of these people, the commissioner, whose name was Rod Copeland, and a couple of others, Blake, anyway, they decided, somebody at the state level decided that, "You got to get these guys who are in charge of all of mental health at one of your workshops."

[17:04] That was amazing. They had a very, very hard time going there. I spent the whole day trying to help them see that this is a life thing. They could support it for people with mental health issues, but they couldn't see that it had anything to do with them personally.

Ken: [17:27] What else do you think in the self‑help field we should make sure we don't miss? Do you have any other programs or ideas that we should know about?

Mary: [17:42] My focus was so completely on WRAP. I know that there have been a number of other self‑help tools that have come up over time. I don't know if any of this had the impact that WRAP has had.

Ken: [17:57] I think WRAP is still the grandmaster. It reminds me, in some ways, of some of the principles of DBT with Marsha Linehan. We gave Marsha Linehan the NAMI Research Award about five years ago.

[18:11] The idea is it's coping based. It's coping strategies. It's anticipating, for example, future dysregulation, future suicidal impulses, and then developing coping strategies. It seems like it's related.

Mary: [18:31] Certainly, hers is something that demands attention. I think a lot of people would benefit by going through that whole program…

Ken: [18:40] I agree.

Mary: [18:41] the DBT program, but it's much more directive than WRAP. I think the reason that WRAP is acceptable to a lot of people is because it's really focused on yourself. It's not somebody else telling you what to do. You figure it out.

[19:00] You probably have heard that there's the key concepts. When I first did those studies, I discovered there were five. There's hope, personal responsibility, education, self‑advocacy, and support, were the key things that everybody had to keep in mind as they were doing this work.

[19:16] Then I also came up with some values and ethics that go along with it, that were written out, that have to do with the language issues and equality issues. There's a list of about 20 of those that were focusing on simple, safe, non‑invasive kinds of responses.

[19:38] It doesn't exclude anything. Sometimes people will say, "Well, you can't use medications and also use WRAP." That's not true. Medications can be very much a part of your WRAP. Whatever treatment you choose, it's up to you, so that it's not exclusionary. It's inclusive.

Ken: [20:02] That's great. Have you found application for this in addiction?

Mary: [20:07] Yes.

Ken: [20:08] Because addiction, of course, has a very strong self‑help culture which is very self‑reliant. You have to own your addiction. No one can do this for you. I'm interested in how you've thought about that.

Mary: [20:21] One of the WRAP books is for…We went through so many names with that one. I can't remember what it's named.

Ken: [20:28] [laughs]

Mary: [20:28] But we went through a whole bunch. What do you call it? WRAP for addictions, basically. People really find it helpful, especially when you've got lots of examples.

[20:40] The books are full of examples, examples of what tools you can use and how you can use that. People have been successful in using it certainly to maintain, to figure out day‑to‑day what I'm going to do and what I'm going to do if things happen. Veterans has been another.

Ken: [21:02] I was going to ask about veterans. That was actually my next question, is what have you learned in that community? Has the VA taken up WRAP?

Mary: [21:11] Some of the regions have taken it up a lot. Vermont has taken it up a lot. California had done a lot of it. It's used more and more. Sometimes it depends on who's at the decision‑making level. There was a great person in the VA that was doing that. Right now, we have people in the prisons that are really moving it forward.

Ken: [21:34] It must be quite a thing to realize what you accomplished in your profession, in your career. It's quite an accomplishment.

Mary: [21:44] I'm better at that than I used to be. It's a common human problem that we don't have the ability to really look at what we've done and give ourselves a lot of credit. Self‑esteem is a huge, huge issue. Usually, people who've been through a lot of mental health issues have really low self‑esteem. It's pandemic in our society, is self‑esteem. It's hard to go there.

Ken: [22:16] Of course. Just know that we all appreciate you very much. Now I'm going to ask you a question you don't have to answer. Did your mother learn of any of this work that you did? She was your initiation into this world, and you knew what you didn't want, which was her outcome, as I understand it.

Mary: [22:38] Although her outcome was one of the things that gave me hope that there was another avenue. She had become a chronic mental patient. There was a volunteer who became very interested in her. She started talking to this volunteer.

[23:10] Pennsylvania Dutch was her heritage. Those people are not supposed to talk about themselves. You don't talk about yourself. She began to start talking about herself. Then she would apologize. She said, "Oh, I'm not supposed to be doing this." That's…

[23:24] [crosstalk]

Ken: [23:24] Classic, right?

Mary: [23:28] Right. The volunteer said, "No, no, keep talking." She talked, and talked, and talked. She realized how much better she was getting. She started setting up support groups for the people in Connecticut Valley, which was the hospital where she'd been introduced. She started setting up these little support groups so that people could talk to each other.

Ken: [23:52] Your mother or the volunteer?

Mary: [23:55] No, my mother.

Ken: [23:57] You're kidding.

Mary: [23:59] They discharged her. They didn't like it. There were all these people. They were talking to each other. She went back after she got out. She went to lead those groups. Then she went out. She died in 1994. I started doing this work intensively in the late 1980s. I interviewed her. She was the second study I did.

[24:29] I did a second study for how people get well and stay well for the long term. I included her in that study. She came out. She tried. She was a dietitian. She tried to get work. She couldn't get work at first. Then she was able to get work in the inner city where nobody wanted to work in the kitchens in the schools.

[24:50] She did a great job. Then she got some consulting jobs in nursing homes on dietetics. She was 82 when she died. She got very involved with family after she got out. She lived a full and rich life after that.

Ken: [25:13] As you look at it, she's a index case of the use of WRAP principles, isn't she?

Mary: [25:19] Right. Her story is on the mentalhealthrecovery.com website. "The Story of Kate," they use it a lot. That's The Story of Kate.

Ken: [25:33] I'll take a look at that.

Mary: [25:36] I wrote it a long time ago. I haven't looked at it in a long time. It may be…

[25:42] [crosstalk]

Ken: [25:42] As you look back on it, I know the medical model wasn't helpful for her, what did they think her diagnosis was?

Mary: [25:49] They called it manic depressive. She did have some very extremes of mood. What I see, looking back, is that she was a brilliant woman. People at that time did not go to college. She went to Penn State. She was one of the first women to graduate from Penn State. It was just a very few at that time. She was brilliant.

[26:22] Then she got into a situation where she got married and immediately had a child. That child was very difficult. It was a lot. In very quick succession, she ended up with five kids. She wanted to work. She got a part‑time job demonstrating freezers when freezers first came out.

[26:51] My father went ballistic. He had an alcohol problem. He was, "No way any wife of mine is going to be working. This is a…" It was awful. If she'd had people to talk to then, she would have gone this route. She was very close to her mother and her sisters in Pennsylvania. She hardly got to see them.

[27:23] It was a real change in lifestyle. She ended up just sitting in a rocking chair rocking and crying for days and days. They used some of the early medications on her. I forget, miltanol? Was that…?

Ken: [27:37] Yeah, miltanol was an antidepressant early on. Was medicine a part of her recovery or not really later on?

Mary: [27:44] No. She wasn't taking any medication by that time.

Ken: [27:47] Interesting.

Mary: [27:48] 150 electric shock treatments early.

Ken: [27:50] Now they limit it to 100, typically, because of the impact on memory. Your lifetime limit is considered to be 100.

Mary: [27:59] Those were old ones, too. I don't know what they're like now, but it was pretty traumatic and very hard for her.

Ken: [28:08] That's inspiring. That's inspiring all the way around.

Mary: [28:12] We went to visit her every Saturday morning. The doctors and people there told us not to come, and we came anyway.

Ken: [28:20] They told you not to come because…

Mary: [28:23] Because she was incurably insane, they said. That's what they said. They told us not to come.

[28:37] She remembered that one time, when they told us not to come anymore, the next time we brought her a big bouquet of gladiolus. I wrote that story somewhere.

[28:49] Anyway, I went back to that hospital much more recently and did some work. They had an auditorium. They told me at the beginning, "Nobody would choose to come and, if they did, they would behave badly." I started in, and they were right with me the whole time.

[29:15] [background music]

Mary: [29:15] I've had that experience that the patients were right there. Some guy was standing up and giving answers to my questions in Spanish. I couldn't tell what he was saying, but it didn't matter. The people were just alive.

[29:28] Then, at the end, they had some kind of a patients council. They had read the story, and they brought me out, at the end of my presentation there, a big bouquet of gladiolus.

Ken: [29:40] No! Come on! That's quite beautiful.

[29:50] This has been You Are Not Alone ‑‑ Voices of Recovery. For more episodes of this and other NAMI podcasts, visit nami.org/podcasts, or check wherever you get your podcasts.

[30:04] For more information on the book You Are Not Alone, visit nami.org/youarenotalonebook. Some people like to listen to books. Happily, this book is available on Audible.

[30:17] This podcast was produced by John Moe and Jordan Miller for the National Alliance on Mental Illness. We get engineering help from John Miller.

[30:25] I'm Ken Duckworth, and thank you for listening.

[30:27] [music]

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