More than 35 years ago, around 1987, the extremes of mood 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 incurable 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 (I have now owned three).
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 five children, ages 2 to 12. Things were never easy for my family, or for me, after that.
We were told my mother would never get well, that she was incurably insane, and that we should not visit her and should 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 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 am with the same signs 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 sit 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 and he said there was no information like that—only information about medications, electroshock therapy, and in-patient and out-patient options.
I became determined to find this information for myself. Knowing my mother’s story, I assumed there were many people like her who were learning to cope and who live full, successful lives despite intrusive feelings and behaviors.
A vocational counselor assisted me in securing funds through a Social Security Plan to Achieve Self-Sufficiency. Then, 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 gathered was amazing.
I learned about how these people coped on a daily basis. And I learned about diet, support, exercise, changing negative thoughts to positive ones, 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 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 delicious refreshments. She was a fantastic cook. This was the 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 about 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, and how they stay well for themselves, their sons and daughters, their husbands and wives, their parents, their siblings, and 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 the 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 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. It was the first of many I wrote about 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 eight-day interactive workshop series in each of its 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 the winter of 1997 in Bradford, Vermont, an amazing thing happened. This workshop series was attended by people who were in the midst of experiencing all kinds of mental health 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 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, noninvasive 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 helped them 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 to it when we feel so awful that we can’t recall what it was like to feel well.” Then they noted that, working from the list of Wellness Tools, we needed to make a short list of Wellness Tools we need to use every day to stay as well as possible. They went to say we also need to list our personal “Triggers,” now known as “Stressors and Triggers.”
These are 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 our Early Warning Signs—signs we are beginning to feel worse and worse, such as sleeping a lot, uncontrollable eating, feeling anxious or upset a lot of the time, and getting annoyed with family members. Then we turn 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, such as yelling at people, crying a lot, feeling very anxious, isolating, thinking of “using,” shoplifting, and increased obsessive tendencies. And then, 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 30 minutes with a peer supporter, staying away from a peer “who always gives me a hard time,” 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), a 1-hour relaxation exercise, 2 hours of work on a creative project, a 30-minute walk or time 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 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, and 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 them 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, such as WRAP, have been so successful in their own right that they should not be changed. Assuring that people are introduced to the evidence-based practice model, which was developed back in 1997, has been challenging. But as the old saying goes, “Too many cooks will spoil the brew.” Out of respect for the people who participated in my early surveys and those who developed WRAP, I have worked to keep WRAP true to that model so people who are experiencing the worst of times learn WRAP as it was intended.
WRAP, as it was originally developed, has been intensively studied. Its efficacy has been proven. Participants in WRAP workshops should get that evidence-based version. Then, if people want to tailor their personal WRAP to meet their individual needs, they can do that.
I am so delighted that WRAP has become a 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 reentry programs, in schools, in hospitals, in wellness centers—the list goes on and on.
Hopefully, because of WRAP, self-help programs such as WRAP and peer support, fewer and fewer people are living with the long-term effects of mental health issues. I think 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, along with other peer recovery programs. As long as there are people experiencing mental health issues, the work must go on!
WRAP Co-Originator
