By Mary Ellen Copeland PhD
Over 35 years ago, in about 1987, the extremes of mood that I had been experiencing, deep depressions and out of control mania, became totally overwhelming. I reached out to various health care providers. I saw one who said, “You are manic depressive like your mother. It is uncurable and will likely get worse as you age”. He never asked me what was going on in my life, about an abusive husband, my trauma history, my workload. He just said, “Take this pill every day without fail and you will be fine.” So I took the pill, and I was sort of fine for a while. But after a bad reaction to the pill, Lithium, I couldn’t take it anymore and my moods spiraled out of control. I was given pills for ups and pills for downs but no information on how to manage my life. I spent some time in psychiatric hospitals where I appreciated the friends I made but got little assistance and support. I was encouraged to accept that this was the way my life was going to be going forward. I told a family member that I had a goal of owning my own home. She said I would never own my own home (now I have owned 3 homes).
Somehow all of this didn’t add up for me. When I was 8 years old, my mother began experiencing extreme mood swings. I remember her sitting in her rocking chair, rocking and crying for hours. And I remember her wild moods where she was walking on top of the furniture, and other times when she was walking in circles and speaking in words we could not understand. My mother was committed to a state institution where she spent the next 8 years of her life, leaving behind a husband and 5 children, ages 2-12. Things were never easy for my family, or for me, after that.
We were told that my mother would never get well, that she was incurably insane, and that we should not visit her and forget about her. We ignored that and every Saturday morning we went to visit her. After a number of years, along with the hospital staff, we began noticing that she was not having these wild moods, and that she was helping to take care of the other patients. She spent many, many hours with a volunteer who encouraged her to talk, and talk and talk, so she did. And she found that the mood swings were diminishing. She began gathering groups of patients together and getting them to talk to each other (early peer support). The hospital was not comfortable with these mutual support groups so they discharged her. She went on to lead a happy and productive life, working for many years as the dietitian in area high schools and nursing homes, and getting back into her role as the matriarch of our family.
So here I was, with the same signs as my mother had all those years ago, and they are telling me I can never get better, and will probably get worse over time. It didn’t set right with me.
So I asked my psychiatrist how people with extreme swings of mood get by and how they recover. He said he would have to get me that information for our next session. I was really looking forward to that session. Imagine my disappointment when I asked him for that information. He said there was no information like that, only information on medications, electro shock therapy, and in-patient and out-patient options.
I became determined to find this information for myself. Knowing my mother’s story, I assumed that there many people like her who were learning to cope, and who live full, successful lives in spite of intrusive feelings and behaviors. A vocational counselor assisted me in securing funds through a Social Security Plan to Achieve Self-sufficiency and with her assistance and support, I began searching for volunteers who would be willing to tell me how they cope with mental health issues on a day to day basis, how they get well, and how they have learned to stay well over time. My mother participated in the early studies. The information I learned was amazing. I learned about how these people coped on a day to day basis, about diet, support, exercise, changing negative thoughts to positive, and relaxation exercises. I learned about how they worked with their doctors, their counselors, their employers and other key people in their lives. I learned that they all agreed that hope, personal responsibility, education, self-advocacy and support should be the Key Concepts of Recovery.
I took those first findings and compiled them into a book which I had printed at my local print shop, intending to use them for some low key workshops about my findings in my home. I wasn’t sure anyone would sign up. I was told by my psychiatrist that I could never lead a workshop. But with the help and support of NAMI-VT and press releases in my local paper, I conducted two workshops in my home that were packed-and very well-received. My mother made the delicious refreshments. She was a fantastic cook. A beginning.
Due to the success of those workshops, NAMI-VT made arrangements for me to present at the NAMI annual convention in Chicago. In those days, 1989 I think, people were referred to as “consumers” and if you were a “consumer” at that convention, you were supposed to wear a name tag with green ribbons attached that said “consumer”. So I dutifully wore it. I was told not to mention the word “recovery” as it would give people “false hope”. I was given a small room to present in instead of a big lecture hall as it was assumed that few people would be interested in what I had to say.
And they were right. At the beginning there were only a few people and they were all wearing those green ribbons that said “consumer”. But as the workshop progressed, using my primitive PowerPoints as a guide, the room began to fill with people who had left other workshops on drugs and institutionalization options. They weren’t wearing green ribbons. They wanted to learn how people with mental health issues cope on a day to day basis, how they get well, how they stay well-for themselves, their sons and daughters, their husbands and wives, their parents, their siblings, their friends……. They paid attention. They asked questions. Some of them asked me to come to their NAMI groups and talk about all of this. At the end of the workshop, a man said he wanted to make a video of me, my life and this work. And he did. He came to Vermont where I live and did filming. I went back to Chicago and we did more filming. And the first of many videos was made.
About that time I did an outrageous thing. I compiled all that I had learned into a book and had the audacity to send it out to several publishers. Friends admonished me for that, saying I had wasted all that money on printing and postage and no one would publish my book. They were wrong. I got a publisher right away. That book, “The Depression Workbook”, (the publisher insisted on that name saying no one would buy a book about “mental health issues), was a huge success, the first of many I wrote on all the things I learned from people like me who experience extreme highs and lows of mood.
As time went on I got more and more invitations to present at conferences and in mental health facilities. Then the office of “consumer affairs” in New Hampshire invited me to do an 8 day interactive workshop series in each of their 11 counties, for people who experience mental health issues, care providers, case managers and counselors. I did that. The more I shared about the recovery options and tricks of the trade, the more I learned from the people who attended. I announced at the beginning of these workshops that when people come through the door we are all just people without labels and titles. This was hard for some but over time it became more and more acceptable.
Then Vermont arranged to have me do the same thing for them. At one of these presentations, in Bradford Vermont in the winter of 1997 an amazing thing happened. This workshop series was attended by people who were in the midst of experiencing all kinds of mental heath issues. Some were deeply depressed, others were very agitated and several were hearing voices and having delusions. At the end of the series, a woman stood up and said, “This is all well and good, but I have been in mental hospitals across the country and I would have no idea how to incorporate these ideas into my life.” Others agreed. Everyone agreed that we need “a plan”.
This intrepid group decided to get together several more times (it was winter, a very challenging time for people to be out and about) and figure out a plan. And they did. They worked hard. They discussed multiple options. And eventually they came up with a plan that they felt would work. They called it the “Wellness Recovery Action Plan” or WRAP.
It asked people to make a list of their Wellness Tools, simple, safe, non-invasive things they could do to help themselves-the cornerstone of WRAP. This became an interesting process on its own. People came up with long, long lists of things that help them to feel better. They got ideas from each other. Then they said “We need a list of words that describe us when we feel OK” so we can refer back to it when we feel so awful that we can’t recall what it was like to feel well.
Then they said, working from the list of Wellness Tools, we need to make a list, a short list, of Wellness Tools that we need to use every day to stay as well as possible. On they went, saying we need to list our personal “Triggers”, now known as “Stressors” , unexpected things that, when they happen, might make us feel worse and worse, like seeing an accident, having an argument with someone, being treated badly or getting a big bill. Then we need to make a list of Wellness Tools we can use when those things happen so it won’t make us feel worse and start a downward spiral into experiencing more and more mental health issues.
Next they said we need to list the Early Warning Signs, signs that we are beginning to feel worse and worse-things like sleeping a lot, uncontrollable eating, feeling anxious or upset a lot of the time, and getting annoyed with family members. Then back to the Wellness Tools to make a list of things we need to do at that time to help us feel better and avoid feeling worse.
They went through a similar process for what they called “When Things are Breaking Down”. They came up with examples like yelling at people, crying a lot, feeling very anxious, isolating, thinking of “using”, shoplifting and increased obsessive tendencies. And then again using the Wellness Tools to make a more directive plan that tells them exactly what to do if these signs occur. That plan might include ½ hour with a peer supporter, staying away from a peer who always gives me a hard time, a one hour relaxation exercise, calling a health care provider and following their instruction (this would be a very trusted health care provider who knows the person and their plan well), 2 hours of work on a creative project, a ½ hour walk, ½ hour listening to music and avoiding alcohol.
The next section is the Crisis Plan. While the rest of the plan is to be used by the person who developed it, the Crisis Plan is written with the understanding that copies of it will be given to the person’s named supporters. It includes a list of supporters, those people who should not be contacted, care providers, when they should be contacted and contact information, a plan for staying at home during a crisis, what others can do that would be helpful, what they should not do, and indicators that the plan is no longer needed.
The last section is the Post Crisis Plan, a plan that a person develops as they are recovering from a crisis, a plan that will guide them back to again being in the place where they use their Daily Maintenance Plan as a guide to daily living.
I was so intrigued by this plan that I went home and developed one for myself as a guide to daily living. And I felt better and better and better, more in control of myself and my life.
I started sharing the plan everywhere I went and the reaction was always the same. People said “Finally something we can do to help ourselves”. Over time I wrote books about WRAP and shared it at every opportunity. I developed a WRAP Facilitators Curriculum and an Advanced Level WRAP Facilitators curriculum. Over time WRAP has spread around the United States and around the world.
Some things do get better over time, but I feel that others, like WRAP, which has been so successful in its own right that it should not be changed. Assuring that people are introduced to the model that was developed back in 1997 has been challenging. But as the old saying goes, “too many cooks will spoil the broth”. Out of respect for the people who participated in my early surveys and those who developed WRAP, I have worked to keep WRAP true so that people who are experiencing the worst of times learn WRAP as it was intended. Then, if they want to change it for their own use, they can.
WRAP, as it was originally developed, has been intensively studied. It’s efficacy has been proven. Participants in WRAP workshops should get that version. Then if people want to change WRAP to meet their own needs, they can do it.
I am so delighted that WRAP has become the cornerstone of mental health work around the world. It is being taught and used extensively in mental health facilities everywhere, in veterans programs, in prisons, in re-entry programs, in schools, in hospitals, in wellness centers, the list goes on and on. Hopefully, because of WRAP, self-help programs like WRAP, and Peer Support, fewer and fewer people are living with the long term effects of mental health issues. I think that WRAP has helped to “normalize” mental health issues. It has effectively proven that there are things that we can do to help and support ourselves.
The mental health world is so different now from the world I encountered when I reached out for help. That early research, and WRAP, have made a big difference. Other recovery programs have made a big difference too. As long as there are people experiencing mental health issues, the work must go on…