NAMI Family Family

NAMI Family-to-Family

A NAMI peer education program for family members of adults with mental illness

Participant Manual 2020

Developed by Joyce Burland, Ph.D. © 1997

Sixth Edition Revision Coordinated by Suzanne Robinson, MSW

Class 7

NAMI Family-to-Family 2020 Class 7 7.20

Class 7: Empathy and Recovery

Agenda

• Psychological impact of mental health conditions

• Psychological pain associated with any serious illness

• Protecting self-esteem with defensive coping strategies

• Guidelines for offering empathy

• Historical ideas of recovery

• Defining recovery

• The role of rehabilitation in mental health recovery

• Innovative approaches to rehabilitation

• Supported employment

• Recovery is different for everyone

• Guest speaker


Worksheet 1: Empathy

Source: Oxford Dictionary Empathy is a way of identifying with someone on a deep emotional level. When we empathize with someone, we feel what it might be like to be them. We can start with imagining what their situation might feel like. Sometimes powerful empathy can feel physical. For example, you may be talking to a friend about something that makes them sad and feel tears in your own eyes.

Feeling empathy for someone with a mental health condition means that we may experience some of the fear, anxiety and confusion that our loved one does. Again, the important difference is that we must remember to recognize and acknowledge how they feel, not how we feel.

Empathy is not necessarily about agreeing with someone’s thoughts or beliefs. If your loved one feels anxious in crowds partly because they’re afraid someone will hurt them, you don’t have to agree with that belief. People sometimes skip the step of trying to empathize with someone because they’re afraid of validating beliefs they think are wrong. Empathizing lets you validate a person’s emotional experience, not their thoughts. When people’s emotions are validated, they feel safer and more understood. It creates a sense of connection and trust.

By listening closely, believing the person when they describe their experience, and imagining what it would feel like to have the experience they describe, you empathize with them. You need to be self-aware, so you can notice if you’re feeling defensive or trying to argue with how they feel. It will probably become easier with time and practice.

Notes:


Worksheet 2: Sensory Overload and Mental Health Conditions

Most mental health conditions involve problems in attention, memory, processing information and being overloaded by perceptions. For example, in depressive episodes, people can be especially sensitive to and bothered by noise. People experiencing mania may have fragmented thoughts. People experiencing panic or symptoms of PTSD and OCD may be so distracted by internal fears that they can’t focus on anything else. When people experience psychosis, these sorts of internal experiences can overwhelm the person’s ability to perceive outside stimuli.

Depending on their situation and their symptoms, our loved ones may be easily overwhelmed by information. They’re being stimulated by their thoughts, feelings, senses, and the environment, all at once. People experiencing a psychotic episode may be unable to distinguish stimuli they want to pay attention to from stimuli they don’t need to pay attention to. This is often called sensory overload.

We might assume that because we can’t see what’s distracting them, our loved one is ignoring us or being stubborn and resistant. We may need patience to interact with our loved one when we talk to them. Sensory overload may make it hard for them to follow complex speech. They also may have trouble with their short-term memory.

Symptoms of psychosis can limit a person’s ability to interact with the outside world, including you and other people. As difficult as it may be, try to not take it personally. Behavior that frustrates you may be a reaction to the vivid experience they’re having. You can have strong negative emotions toward your loved one’s behavior and still love them as a person. It’s okay to feel upset at their condition but realize it’s not who they are — it’s something that’s happening to them.

Notes:


Worksheet 3: Predictable Emotional Responses Crisis

Responses: Shock, confusion, denial

Events: First signs or symptoms, getting a mental health diagnosis, change in diagnosis, self-harm, suicide attempt, law enforcement involvement, arrest, incarceration, unsafe housing, experiencing homelessness, relapse, hospitalization, other illness, etc.

Needs: Support, empathy, intervention, comfort, help finding resources, prognosis

Coping

Responses: Anger, guilt, resentment, grief, exhaustion, numbness

Actions: Seeking information, trying new approaches, reflecting on relationships, building a support system, finding mental health services, changing living situation, adjusting to change, attending a class/support program, etc.

Needs: Express emotions, mental health information (research, treatment options, etc.), connect with others, explore self-care strategies (nutrition, sleep, exercise, identify stressors, time management, etc.), learn skills, family and peer support

Advocacy

Responses: Empathy, acceptance, energy, motivation, determination

Actions: Joining social networks, volunteering, advocating for policy, partnering with loved ones, collaborating with or changing mental health service providers, developing a wellness plan, emergency planning (psychiatric advance directive), consistently practicing self-care, becoming a NAMI leader, etc.

Needs: Opportunities for participation and leadership, activities, larger purpose, doing things you enjoy, creative outlet, activism

Adaptation of Stages of Emotional Response chart developed by Joyce Burland, PhD, 1991. Additional source: Grief.com


Worksheet 4: Protecting Self-Esteem With Defensive Coping Strategies

Defensive coping strategies are ways of managing or maintaining our psychological, emotional and physical sense of well-being. Everyone, not just people with mental health conditions, uses them. These strategies may not accomplish what we want, or they may make the situation worse. They are often called “maladaptive” behaviors meaning they may be unsuitable, counterproductive or inappropriate for a situation. However, they do help us feel safer when our self-esteem is wounded or threatened.

From this perspective, we have good reasons for the choices we make, even when it seems dysfunctional to someone else. When you observe these behaviors in yourself or in your loved one, try to consider what you or they ultimately want and need.

Common defensive coping strategies:

• Denying that they have a condition • Refusing to talk about the situation • Developing alliances to divide the family/support system (triangulation) • Being apathetic, seeming not to care • Resisting changes • Being irritable or short-tempered • Criticizing/verbally attacking others • Expressing anger • Rejecting friends/family • Blaming others, not taking responsibility • Isolating themselves • Being suspicious of others • Expressing superiority to others • Choosing not to participate in services/treatment • Leaving/disappearing • Focusing only on themselves • Trying to control others • Being envious of others • Becoming overly dependent on others • Misusing substances (recreational drugs/prescription drugs/alcohol) • Sleeping a lot


Worksheet 5: You and Me By Debbie Sesula

If you’re overly excited You’re happy. If I’m overly excited I’m manic.

If you imagine the phone ringing You’re stressed out. If I imagine the phone ringing I’m psychotic.

If you’re crying and sleeping all day You’re sad and need time out. If I’m crying and sleeping all day I’m depressed and need to get up.

If you’re afraid to leave your house at night You’re cautious. If I’m afraid to leave my house at night I’m paranoid.

If you speak your mind and express your opinions You’re assertive. If I speak my mind and express my opinions I’m aggressive.

If you don’t like something and mention it You’re being honest. If I don’t like something and mention it I’m being difficult.

If you get angry You’re considered upset. If I get angry I’m considered dangerous.

If you overreact to something You’re sensitive. If I overreact to something I’m out of control.

If you don’t want to be around others You’re taking care of yourself and relaxing. If I don’t want to be around others I’m isolating myself and avoiding.

If you talk to strangers You’re being friendly. If I talk to strangers I’m being inappropriate.

For all of the above you’re not told to take a pill or are hospitalized, but I am!

Notes:


Worksheet 6: Guidelines for Offering Empathy

• Support instead of criticizing. People experiencing a mental health crisis are very vulnerable. When we criticize them or make negative remarks, we take advantage of their vulnerability and exert power over them through force. This contrasts with our goal to help meet their immediate needs and support them on their way to recovery. As part of our work, it’s critical that we respect and protect their self-esteem. Frame any recommendations in terms of what benefit we believe they may bring, rather than what we think the person is doing “wrong.”

• Encourage instead of punishing. The most effective way to help people start a beneficial behavior is to respond empathetically to their experience, validate their perspective, find a shared goal, listen to their ideas, and suggest our own. When we follow this process and genuinely share ideas and concerns, the person will be internally motivated and will trust us more. This is the most effective way to encourage long-term change. Influencing people through intimidation or punishment is coercive, unethical and leads to more conflict and worse outcomes. Family members have direct experience with this. Joe Talbot, a parent quoted in Patricia Backlar's book, The Family Face of Schizophrenia, said:

"With this disease there is no fighting. You may not fight. You just have to take it and take it calmly. And remember to keep your voice down … [Also] punishment doesn't work with this disease. Now that I have lived with a person with schizophrenia, it makes me very upset when I see mental health workers try to correct their clients' adverse behavior by punishment, because I know it doesn't work."

• Reward positive behavior and ignore negative behavior. Studies have shown that people will want to behave in ways that bring them recognition and approval. Research has demonstrated that criticism, conflict and emotional pressure are highly correlated to relapse. It’s better to simply wait and ignore negative behavior, if it is not actively dangerous, than to react to it or focus on it.

• Recognize and accept all the person’s symptoms. It can be tempting to try to “fix” someone’s symptoms because they may resemble intentional behaviors. It’s critical that we remember that lack of motivation in a person with depression is a symptom of their condition and not something we can counteract or make go away, except for, possibly, through an effective treatment plan. We can’t argue with someone’s psychotic delusions or deflate someone’s grandiose self-image when they’re having a manic episode. These aren’t social behaviors — they are medical symptoms that can be addressed through a variety of treatments. Instead, offering support and empathy can relieve the person’s guilt and anxiety and make treatment more possible.

• Patiently encourage independent behavior. Ask your loved one what they feel they’re ready to do. Plan small steps that have a better chance for success. Make


short-term plans and goals and be prepared for changes and pauses. Progress requires flexibility. Family members and providers will sometimes need to let go of the standards by which they measure progress and listen more to how the person measures progress. It can be harmful to the person with the mental health condition to have unrealistically high expectations, but patience and waiting can be healing. Be aware that someone with a mental health condition may be anxious that when they show signs of improvement, their support system will withdraw, and they’ll be in greater risk. Reassure your loved one that you’ll be interested in and supportive of them even when they’re not in crisis — and then make sure that you are.

• Maintain basic expectations and healthy boundaries. Like with anyone else, we can expect reasonable, basic behaviors from people with mental illness. Everyone has a better chance of co-existing well when expectations for behavior and cooperation are clear, so we must be sure to express ours.

• Validate the emotional content of what our loved ones express. Being empathetic often involves listening and responding to the emotional truth of what someone is expressing. We may not agree with the details or ideas they’re sharing, but we must recognize and express the validity of their emotional response to their experience. For example, if someone says, “Everyone in this house thinks I’m a failure,” we can validate what they’re feeling without agreeing with the idea. We can say something like, “It must be upsetting to think we’re disappointed with you. That sounds painful.” This shows we’ve listened carefully, gives them a chance to clarify any misunderstanding, and demonstrates that they can trust us with how they really feel. Once we build trust like this, we can start to clarify how we see the situation and find things we agree on as we move forward.

• Have empathy for ourselves. We aren’t superheroes, and many things are outside of our control. A loved one may not have the outcomes we’d like, or they may seem stuck in a difficult stage for a long time. It’s admirable to do our best to help improve the well-being of our loved one, but we can’t guarantee what exactly that will look like. We must be compassionate toward ourselves and our limits.

Learn more

To watch an engaging animated video about the difference between empathy and sympathy, search YouTube for: Brené Brown on empathy


Worksheet 7: How Providers Can Help Family Members

These suggestions are drawn from feedback given by family members who have shared their stories in the NAMI Provider program.

How mental health providers can help siblings:

• Listen o Siblings have perspectives that can be useful and constructive. Invite them

to share theirs. o Many siblings have concerns about their own mental health or their risk of

developing conditions. Encourage them to talk about these concerns and explore whether their sibling’s condition is impacting their self-perception and plans.

o Needs can get lost in the intense demands of their sibling’s condition. Siblings often observe the strain that the family is under and neglect their own needs. Providers can help by inviting them to share.

• Involve them o Siblings want to be included and given opportunities to help somehow.

• Support their need for space o Siblings may feel conflicted about their obligations toward their family and

toward supporting their own life path. Encourage them to care for themselves, too.

• Acknowledge the seriousness of their grief o Families and providers can tend to avoid how seriously siblings are

impacted. There may be a tendency to believe that because they don’t have a condition or aren’t in crisis, they’re fine. This may also come from an unconscious hope that no one else in the family is struggling or in pain.

o They may experience new grief when they pass life milestones because it contrasts with their sibling’s experience.

How mental health providers can help adult children:

• Help undo stereotypes o Most children of people with mental health conditions don’t develop a

condition themselves. However, there are stereotypes showing them as “damaged” or likely to develop a mental illness. Don’t assume that they have a medical condition if they don’t.

• Offer education and information o Many were not informed about their parent’s condition and still lack

knowledge about their diagnosis. Help identify symptoms and consult with them.

• Offer support o Having a parent with mental illness can be extremely stressful, and as

with any catastrophic stress, support is critical. Connect them with


options like psychotherapy, family therapy, support groups and educational materials.

o Many adult children feel conflicted about asking for help when they’ve experienced a parent being highly dependent during a crisis. Assure them that it’s okay to seek support.

o Having sources of support outside of the family, especially people who are more neutral or less directly impacted/strained by the family experience, can be extremely helpful.

• Empathize with ambivalence o Many adult children have mixed feelings about their families. This is

common in all people, but some of these concerns are specific to us. They can feel grief about not having a childhood with more freedom and less stress. They may feel guilty about developing capacities their parent may never have had the chance to. They may dread the possibility that one day, they may become a caregiver for their parent.

How mental health providers can help spouses/partners:

• Offer information o Spouses and partners are often not given enough information about their

partner’s condition and how to help manage it. Providers should share information frankly about topics people often avoid, like sexuality, single parenting, money management, economic hardship, and handling the restrictions and/or excesses in our partner’s behavior.

• Empathize with ambivalence and refrain from advising o Partner relationships are chosen — they don’t enter our lives

automatically, like being someone’s sibling does. Because of this, partners may agonize about whether to remain in or end this relationship. They need to be able to share ambivalence without feeling disloyal, bad, weak or being otherwise judged or blamed. Invite them to talk about tough topics like loneliness, isolation and emotional exhaustion.

o They must weigh their own needs against their partner’s needs. It can be incredibly painful to be told what someone else thinks they should do, whether it is to stay or to separate. Don’t tell them what you think they should do, or what you think their duty is.

• Remove blame o Because of stigma, some people may think the effort they put in to

keeping their partnership or family together is infantilizing their partner. Some people believe this is the cause of their partner’s condition. As a health care professional, you can help by combating that stigma.

• Encourage them to care for themselves, too o Encourage them to keep building their independent life apart from

partnership or family. Work, social activities, and other communities can be critical to survival and well-being. Remind them that it’s okay for these activities not to include their partner. Meaningful work and friendships outside of partnership are critical supports and help prevent burnout.


o Encourage them to ask for help from others. This is a skill they can practice — asking others in the community for emotional support, help caring for any children, advocacy and possibly financial support.

• Consider many factors adding to their stress o Don’t assume that other than the partner’s medical condition, the family

is doing okay. There are many sources of stress, some of which may be less obvious. It’s more realistic to assume they are under many sources of stress. Ask about these and help them connect with those who can help.

Notes: Source: NAMI Provider, 2017


Worksheet 8: An Open Letter to Families

My Dear Family:

This letter is a plea for your compassion, understanding and patience. We have all just come through an episode of my mental illness. I have experienced it personally and you have tried to deal with its effects while continuing to take care of our family as a whole. It has not been easy, but I have done the best I know how and so have you. For this, I thank you.

As a result of this episode, I am now exhausted. Maybe I look all right to you, but inside I am wounded. Even the least stress, the least effort is overwhelming to me. I need to just sit and pull myself together. I need to sleep a lot, and not do much at all. This may go on for quite some time.

It may be hard for you to see me this way. You may feel it is your duty to help me “snap out of it.” You may be wondering if I am using this as an excuse to be lazy. Please be gentle with me; let me heal.

If you want to do something for me, there are three things I would appreciate:

1. Learn about my illness. This is an illness of the brain and body, just like any other disease. It also affects my ability to think, feel and behave. Those effects may have been difficult for you to deal with. I’m sorry if the effects of my illness have made your life more difficult. Learning about the illness may help you put these difficulties in perspective.

2. Help me find effective treatment. This takes patience and persistence. In my present state, I may not have the energy to follow through by myself. I may need you to advocate for me, until we find people and medicines that really help.

3. The other thing you can do for me is to listen with an open heart and an open mind. Don’t try to advise me. Just listen while I work this out for myself. Your trust and understanding during this time of rest and recuperation will help me feel confident enough to decide when I am able to step (perhaps gradually) back into life activities.

Thank you for your support and compassion. It will make my path to recovery more smooth and sure.

With thanks and hope, Source: Sita Diehl, co-author, Bridges Consumer Peer Education Course


Worksheet 9: Recovery Defined

The definition of recovery from Substance Abuse and Mental Health Services Administration (SAMHSA: sam-sa):

A process of change through which individuals improve their health and wellness, live a self-directed life and strive to reach their full potential.

Through the Recovery Support Strategic Initiative, SAMHSA has delineated four major dimensions that support a life in recovery:

Health

Overcoming or managing one’s disease(s) or symptoms — for example, abstaining from use of alcohol, illicit drugs, and non-prescribed medications if one has an addiction problem — and for everyone in recovery, making informed, healthy choices that support physical and emotional well-being

Home

A stable and safe place to live

Purpose

Meaningful daily activities, such as a job, school, volunteerism, family caretaking, or creative endeavors and the independence, income and resources to participate in society

Community

Relationships and social networks that provide support, friendship, love and hope

Reflection

What does recovery mean to you?

Notes: Source: SAMHSA, samhsa.gov


Worksheet 10: Perspectives on Recovery

We want to clarify that the quotes below are people’s subjective experiences, and while some of them are not phrased as I-statements, they should be considered only as the person’s individual perspective. What people describe here may vary greatly from what you or your loved one has experienced.

Different perspectives on recovery and mental health

• Patricia Deegan, a clinical psychologist who has a mental health condition and is influential in the recovery movement, has written extensively on the meaning of recovery. Within the context of people whose experiences with mental illness involve disability related to their condition, she describes recovery as “a decision to meet the challenge of disability … people experience themselves as recovering a new sense of self and purpose within and beyond the limits of the disability.” She also says that “recovery is not about becoming normal…the goal of recovery is to become the unique, never-to-be repeated gift that we are.”

• “Recovery is about remembering what we want, remembering who we are, whether it’s our family, our strengths or what’s important to us, and never letting that go.”

• “For me, it means feeling safe, feeling loved, feeling connected, and feeling like I belong. I want to feel seen; I want to feel understood, you know, and to do that, I need to believe that people love me and that I have a place.”

• “Recovery means overcoming your limitations, showing that you can be independent, and can take care of your bills and your lifestyle, and all of the things you need to take care of.”

• “I got better because I surrounded myself by people who showed that they cared about me and who got me laughing again. These were all fellow patients, people had been through it, people who knew what it felt like to feel that depressed. No one had ever told me I should do things like change my diet and exercise. To get out there when I’m depressed, not to isolate. I started learning these things from people who had gone through it… I realize that I can take charge. Now I don’t have to lie in bed and think about how miserable I am. I can get up and do something that’s going to get my mind off of those negative thoughts. I still have the same ‘symptoms’ I had before, but they don’t bother me like they used to.”

• “I think recovery means being able to do the things that anybody else can do. It means going to work, it means driving a car, it means being able to take care of your kids. It just means living a normal life like everybody else.”

• “Recovery to me means working on living a happy, healthy, productive lifestyle, having a support network that you can count on, generally just being comfortable with yourself. You don’t need to be perfect — obviously that is difficult to attain, but, recovery is a process. Maybe it’s never done.”


• “Beneath mounting waves of fear, I discovered faith. In the midst of madness, I discovered a new meaning in my life. I learned that the strength I had long sought in others had always resided in me. Despite despair, I discovered the power within to transform my life.”

-Gayathri Ramprasad, Shadows in the Sun

• Today I no longer blame the war, the system, parents or myself for my psychiatric condition. I and others just had some back luck. I do have to look at myself and my willingness to participate in recovery and rehabilitation programs/treatment for my recovery. My life didn’t turn out the way I thought it would when I was eighteen. Neither did anyone else’s I know.

-Moe Armstrong, in The Experience of Recovery


Worksheet 11: Stories of Recovery Cinthya’s recovery story: I love photography. I'm not an expert by any means, but I love taking pictures of landscapes, black and white photography, and just capturing moments that one can always look back at and cherish really. That's why I think the main reason to why I gravitate towards it, and it's a huge stress reliever as well. Another thing that I get really, really excited about is going in the kitchen and just mixing a whole bunch of different ingredients and then coming up with meals from essentially what you have in the kitchen. I've always gravitated towards the kitchen. I love cooking different types of food, and they've been a

hit so far with my significant other. So, something tells me that I'm on the right track with that. I think hugs go a very long way for me and…compassion. Like I said, I don't need someone to have the answers for my struggles. I just need to let my inner thoughts come out. Life for me at the moment is very busy. Work keeps me really busy, and at the same time, it's very, very educational. I get phone calls at work sometimes that are really, really touching…[people] say, "Thank you for offering your time, for taking an hour or 45 minutes on this call to give me resources when every other call that I've made hasn't even returned my call." I get in a support group about a week ago. I was literally told that I've saved someone's life and that, that support group was pivotal for her to continue her mental health resources when six months ago she was very reluctant to even be in the room. And she said, "After five sessions you're not going to see me because I'm only giving myself six sessions." And here she is months [later]…and for me to hear that I've been instrumental enough for someone to actually keep going means the world.

Hayden’s story of recovery: Recovery is a process. I don’t know if it’s ever completely done. I’ve been in recovery for quite some time now. But I’m at a place where I’m feeling really good now about everything. I’m really happy that I made it out to college in San Diego. I’ve always wanted to move out there. You know, growing up in Virginia, San Diego or California in general was kind of like this dream land that I always wanted to end up there. So that’s been really exciting for me….And I’m still playing a lot of music and finding new friends to play music with at school. And playing open mics and finding new genres of music and sort

of expanding that whole aspect of my life. And between those things and school, you know that takes up a lot of my time.


Deanna’s story of recovery: I am a mom of five grown children. They are just the light of my world. I have five grandchildren. My grown children range in age from 21 to 32 and I'm really proud of the people that they are. I definitely get up in the morning being inspired by them and looking forward to inspiring them … My kids who live on the East Coast, I live on the West Coast now, we have a Facebook chat all of us together and I check in every morning. They want to know how I am and how my mood is and all that good stuff. So, they are very, very supportive. What my greatest support is for being mentally well and thriving

is my faith and my spirituality. Like that to me and has been for a very long time, just number one. I mean, that's the thing. When I talk about something that gets me up in the morning, that gets me up in the morning, that gets me in the shower, brushing my teeth, you know, checking in with my children worried about my own physical health. You know, since the beginning of this year, I have lost... and it's October now, I've lost 35 pounds. I feel great. I feel younger. I feel healthier. I feel stronger and that's because of my faith and just having the ability to just accept where I am, who I am, how I am in any place, around anyone, just being who I am. And there's nothing more freeing and mentally healthy than that.

Lloyd’ story of recovery: I am a proud father of three. I have a wonderful blended family, been married for a couple of years. I am employed with the Department of Mental Health, been doing that for about 12 years as a Certified Peer Support Specialist. I enjoy working out, running, walking, cycling. You know, I'm a great writer. I think I'm a great writer I should say. And I enjoy reading. There is an old Lloyd and the drug use and all that kind of stuff, but there’s a new Lloyd. And I think that sometimes in my recovery I’ve tried to bring some of that old Lloyd along

with me and being able to focus on and study and learn and appreciate and accept the new Lloyd has been the greatest gift. Recovery means, to me, taking it one day at a time, not getting too far ahead of myself, and not focusing too far in the past. Just taking it one day at a time, taking it easy. You know, we sometimes live in this world where we rush to answer questions, where we rush to do this, where we rush to do that. But just to slow the pace down a little bit and do things intentionally. I think that’s going to be the key to recovery, right there.”


Jim’s story of recovery: I'm a retired Navy pilot. I live in a small village in New Mexico with my Danish artist wife and five cats, and I'm one of these guys who likes challenges, who likes to be on the front end of things. My whole career, which was 44 years with the federal government, I gravitated towards getting things started, getting things kicked off, trying new things. That's just the kind of a person I am. My first support was by listening to people who had the same problems that I did and discovering I wasn't alone. I listened to what worked for people. I went to the VA, I did exactly what they

said, I went on medicines, and let me tell you, going on medicine was the hardest thing I've ever done in my life, and I've landed on aircraft carriers at night in a pitching deck in the middle of the North Atlantic, but it worked. That's the bottom line is that by doing what I was told to do, I am able to reasonably function most of the time, if I'm not totally stressed out by something or triggered. Well, if you're in a relationship, whether it's family or not, you know, if you're living with somebody, they've got to understand what's going on. It was hard enough for me to figure out what was going on. And then, how do you explain that to another human being who isn't experiencing it and how do they support you? What is it that... That was tough, that took years. For example, what absolutely would not work is her saying to me, "I want the old Jim back." Or, "Just get over it." Fifty-eight hours of couples therapy, and a therapist from the VA was there, and we had just a couple session. And I'll never forget the guy, I always hug him when I see him because he looked at my wife and he said, "Don't you know that you're killing him when you say, 'I want the old Jim back.' He can't give it to you." And I had to learn that that was a true thing. There's nothing... I can't go back to what I was, and I'm not a bad person, but I'm not the same person, and she didn't ask for this new person. She got married to the old person. And could she make that switch? And I didn't know the answer.

Chacku’s story of recovery: I live [in New York] with my wife and my seven-year-old daughter. And I have a dog and a couple cats. And we moved there to be closer to my wife’s parents, so my daughter has a set of grandparents to interact with regularly and my family and culture is there as well. I’m very involved with my own Indian community, as well as the mental health and addiction communities, both locally and nationally. And my work means a lot to me, so I’m very grateful for having so much to do.

I had someone ask me, a peer supporter ask me some questions one time. I’ll never forget it. She said, “How do you feel?” I said, “I’m angry. I’m scared. I’m frustrated. I’m frightened. I’m outraged.” All of these things were coming out of me. And she says,


“Well how do you want to feel?” I said, “I want to feel safe. I want to feel loved. I want to feel connected. I want to feel like I belong. I want to feel seen. I want to feel understood.” And then she asked this very powerful question. She said, “Well what would you have to believe in order to feel that way?” And you know, I still didn’t know at that time whether I could even believe it. And I realized at that moment that I would have to believe that my parents loved me. I would have to believe that I belonged. I would have to believe that I could be understood, that I had a place, despite all the evidence. And letting go of that belief has been a long process.

Dave’s story of recovery: Once I started getting better and I started working again and/or volunteering to begin with, I started meeting other people who were not like me per se but had similar life experiences. And so that became very supportive in my life. And it's amazing. I don't know specifically the conversation, but it was more the feeling, like that feeling you know when you talk to somebody and you know they're being genuine, and you know that they care, and you can feel when they shake your hand that they love you even though they don't even know who you are the first time you've met

them, and that they're willing to take years of their experience and give it to you. I draw a lot of my strength from giving back. As I was saying, you know, I just feel like so many people have given to me and there's no reason they needed to. They didn't even know who I was. And for somebody to look at you and accept you, it's...when you're feeling really down or just not being well, it's an amazing thing. And so, if I can do that for one other person out there, you know, that's what it's about. I was just... The other day someone came into my office, and I hadn't seen her for two years. And she's like, "Dave, you know, I haven't been well, but I remember those conversations we used to have and now I also want to become a recovery support specialist. I'm working with the Rehabilitation Services Administration to make sure I get all of the training that I need." And it's like wow, I haven't seen this person in two years. I hadn't thought about them in two years. And yet, here she is just walking into my office to say thanks. There's not a paycheck, you know, that's my paycheck. I wish it would sometimes pay rent, but it doesn't.


Worksheet 12: Recovery: The Lived Experience of Rehabilitation by Patricia E. Deegan, Ph.D.

Patricia E. Deegan, Ph.D. is an independent consultant who specializes in researching and lecturing on the topic of recovery and the empowerment of people diagnosed with mental illness. She is the creator of CommonGround, a web application to support shared decision-making in the psychopharmacology consultation. It won the American Psychiatric Association's Psychiatric Services Gold Achievement Award, the 2013 Scattergood Foundation Innovation Award in behavioral health and was a finalist in an international competition for Patient Empowerment by the Ashoka Changemakers Foundation. It was recognized by the Agency for Healthcare Research and Quality as a practice innovation. Pat is an activist in the disability rights movement and has personal experience of recovery, having been diagnosed with schizophrenia as a teenager. She is an Adjunct Professor at Dartmouth College School of Medicine and at Boston University, Sargent College of Health and Rehabilitation Sciences.

Abstract: This paper distinguishes between recovery and rehabilitation. Psychiatrically disabled adults do not “get rehabilitated” but rather they recover a new and valued sense of self and of purpose. Through the recovery process, they become active and responsible participants in their own rehabilitation project. The experiences of recovery as lived by a physically disabled man and a psychiatrically disabled woman are discussed. Recommendations for creating rehabilitation environments that facilitate the recovery process are also given.

The application of rehabilitation approaches and technologies to psychiatrically disabled adults is a relatively new and exciting development in our field. The discovery and application of rehabilitation models allow us to think about this population in new and exciting ways. Of significance is the fact that from the perspective of the rehabilitation approach, it is no longer necessary to isolate the psychiatrically disabled as totally different from other groups of persons with disabilities. Today, artificial boundaries between groups of disabled persons can be bridged through the understanding that most disabled people share the same fundamental needs and aspirations: The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and propose within and beyond the limits of the disability; the aspiration is to live, work, and love in a community in which one makes a significant contribution.

It is important to understand that persons with a disability do not “get rehabilitated” in the sense that cars “get tuned up” or televisions “get repaired.” Disabled persons are not passive recipients of rehabilitation services. Rather, they experience themselves as recovering a new sense of self and of purpose within and beyond the limits of the disability. This distinction between rehabilitation and recovery is important. Rehabilitation refers to the services and technologies that are made available to disabled persons so that they might learn to adapt to their world. Recovery refers to the lived or real life experience of persons as they accept and overcome the challenge of a disability. We might say that rehabilitation refers to the “world pole” and recovery refers to the “self-pole” of the same phenomenon.


The recovery process is the foundation upon which rehabilitation services build. This is most evidenced in the simple observation that we can make the finest and most advanced rehabilitation services available to the psychiatrically disabled and still fail to help them. Something more than just “good services” is needed, e.g., the person must get out of bed, shake off the mind-numbing exhaustion of the neuroleptics, get dressed, overcome the fear of the crowded and unfriendly bus to arrive at the program, and face the fear of failure in the rehabilitation program. In essence, disabled persons must be active and courageous participants in their own rehabilitation project or that project will fail. It is through the process of recovery that disabled persons become active and courageous participants in their own rehabilitation project.

We see then that recovery is an important and fundamental phenomenon upon which rehabilitation efforts depend. It is therefore surprising that very little has been written in our professional and scientific journals regarding it. Perhaps the phenomenon is elusive precisely because it is so fundamental. Perhaps it is because the recovery process cannot be completely described with traditional scientific, psychiatric, or psychological language. Although the phenomenon will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it. At a recent conference that brought together persons with diverse disabilities, I had the pleasure of talking with a man who was paraplegic. We shared our stories of recovery.

The experience of recovery

At a young age we had both experienced a catastrophic shattering of our world, hopes, and dreams. He had broken his neck and was paralyzed and I was diagnosed as being schizophrenic. We recalled the impact of those first days following the onset of our disabilities. He was an athlete and dreamed of becoming a professional in the sports world. I was a high school athlete and had applied to college to become a gym teacher. Just days earlier we knew ourselves as young people with exciting futures, and then everything collapsed around us. As teenagers, we were told that we had an incurable malady and that we would be “sick” or “disabled” for the rest of our lives. We were told that if we continued with recommended treatments and therapies, we could learn to “adjust” and “cope” from day to day.

Needless to say, we didn’t believe our doctors and social workers. In fact, we adamantly denied and raged against these bleak prophesies for our lives. We felt it was all just a mistake, a bad dream, a temporary setback in our lives. We just knew that in a week or two, things would get back to normal again. We felt our teenage world was still there, just waiting for us to return to it. Our denial was an important stage in our recovery. It was a normal reaction to an overwhelming situation. It was our way of surviving those first awful months.

The weeks passed us by but we did not get better. It became harder and harder to believe we would ever be the same again. What initially had seemed like a fleeting bad dream, transformed into a deepening nightmare from which we could not awake. We felt like ships floating on a black sea with no course or bearings. We found ourselves


drifting farther and farther away from the young, carefree people we had been. He lay horizontal and in traction while his friends were selected to play ball for prestigious colleges. I stood drugged and stiff in the hallways of a mental hospital while my classmates went off to their first year of college.

We experienced time as a betrayer. Time did not heal us. Our pasts deserted us and we could not return to who we had been. Our futures appeared to us to be barren, lifeless places in which no dream could be planted and grow into a reality. As for the present, it was a numbing succession of meaningless days and nights in a world in which we had no place, no use, and no reason to be. Boredom and wishfulness became our only refuge (Knowles, 1986).

Our denial gave way to despair and anguish. We both gave up. Giving up was a solution for us. It numbed the pain of our despair because we stopped asking, “Why and how will I go on?” (Harrison, 1984). Giving up meant that for 14 years, he sat in the day rooms of institutions gazing at soap operas, watching others live their lives. For months I sat in a chair in my family’s living room, smoking cigarettes and waiting until it was 8:00 p.m. so I could go back to bed. At this time, even the simplest of tasks were overwhelming. I remember being asked to come into the kitchen to help knead some bread dough. I got up, went into the kitchen, and looked at the dough for what seemed an eternity. Then I walked back to my chair and wept. The task seemed overwhelming to me. Later I learned the reason for this: when one lives without hope, (when one has given up) the willingness to “do” is paralyzed as well.

All of us who have experienced catastrophic illness and disability know this experience of anguish and despair. It is living in darkness without hope, without a past or future. It is self-pity. It is hatred of everything that is good and life giving. It is rage turned inward. It is a wound with no mouth, a wound that is so deep that no cry can emanate from it. Anguish is a death from which there appears to be no resurrection. It is inertia which paralyzes the will to do and to accomplish because there is no hope.

It is being truly disabled, not by a disease or injury, but by despair. This part of the recovery process is a dark night in which even God was felt to have abandoned us. For some of us, this dark night lasts moments, days, or months. For others, it lasts years. For others, the despair and anguish may never end.

Neither the paralyzed man nor I could remember a specific moment when the small and fragile flame of hope and courage illuminated the darkness of our despair. We do remember that even when we had given up, there were those who loved us and did not give up. They did not abandon us. They were powerless to change us and they could not make us better. They could not climb this mountain for us but they were willing to suffer with us. They did not overwhelm us with their optimistic plans for our futures but they remained hopeful despite the odds. Their love for us was like a constant invitation, calling us forth to be something more than all of this self-pity and despair. The miracle was that gradually the paralyzed man and I began to hear and respond to this loving invitation.


For 14 years, the paralyzed man slouched in front of the television in the hell of his own despair and anguish. For months I sat and smoked cigarettes until it was time to collapse back into a drugged and dreamless sleep. But one day, something changed in us. A tiny, fragile spark of hope appeared and promised that there could be something more than all of this darkness. This is the third phase of recovery. This is the mystery. This is the grace. This is the birth of hope called forth by the possibility of being loved. All of the polemic and technology of psychiatry, psychology, social work, and science cannot account for this phenomenon of hope. But those of us who have recovered know that this grace is real. We lived it. It is our shared secret.

It is important to understand that for most of us recovery is not a sudden conversion experience. Hope does not come to us as a sudden bolt of lightning that jolts us into a whole new way of being. Hope is the turning point that must quickly be followed by the willingness to act. The paralyzed man and I began in little ways, with small triumphs and simple acts of courage: He shaved, he attempted to read a book, and he talked with a counselor; I rode in the car, I shopped on Wednesdays, and I talked to a friend for a few minutes. He applied for benefits, he got a van and learned to drive; I took responsibility for my medications, took a part-time job, and had my own money. He went to college so he could work professionally with other disabled people; I went to school to become a psychologist so I could work with disabled people. One day at a time, with multiple setbacks, we rebuilt our lives. We rebuilt our lives on the three cornerstones of recovery — hope, willingness, and responsible action. We learned to say: “I am hopeful,” “I am willing to try,” and “I discover that I can do” (Knowles, 1986). This is the process of recovery which is the ground from which springs effective use of rehabilitation services.

Recovery does not refer to an end product or result. It does not mean that the paralyzed man and I were “cured.” In fact, our recovery is marked by an ever deepening acceptance of our limitations. But now, rather than being an occasion for despair, we find that our personal limitations are the ground from which spring our own unique possibilities. This is the paradox of recovery, i.e., that in accepting what we cannot do or be, we begin to discover who we can be and what we can do.

Recovery does not refer to an absence of pain or struggle. Rather, recovery is marked by the transition from anguish to suffering. In anguish, the paralyzed man and I lived without hope. We experienced anguish as futile pain, pain that revolved in circles, pain that bore no possibility other than more pain, and pain that lead nowhere. However, when we became hopeful, our anguish was transformed into true suffering. True suffering is marked by an inner peace, i.e., although we still felt great pain, we also experienced a peace in knowing that this pain was leading us forward into a new future. A biologist who is handicapped with spina bifida captures this spirit of true suffering in recovery when she writes: “Suffering is peaceful. You know the pain may kill you, but it won’t destroy you. In a very risky way, you are safe”.

For many of us who are disabled, recovery is a process, a way of life, an attitude, and a way of approaching the day’s challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, re-group and start again. Our experience


of recovery is similar to that described by the poet Roethke who was himself afflicted with major mental illness:

Cuttings

…One nub of growth Nudges a sand crumb loose, Pokes through a musty sheath Its pale tendrilous horn… …This urge, wrestle, resurrection of dry sticks, Cut stems struggling to put down feet, What saint strained so much, Rose on such lopped limbs to a new life?

Recovery is the urge, the wrestle, and the resurrection. Recovery is a matter of rising on lopped limbs to a new life. As professionals, we would like nothing more than to somehow manufacture the spirit of recovery and give it to each of our program participants. But this is impossible. We cannot force recovery to happen in our rehabilitation programs. Essential aspects of the recovery process are a matter of grace and, therefore, cannot be willed. However, we can create environments in which the recovery process can be nurtured like a tender and precious seedling.

Some of the principles for creating such environments in rehabilitation programs are given below.

Recovery in rehabilitation programs

As we have seen, recovery is not a linear process marked by successive accomplishments. The recovery process is more accurately described as a series of small beginnings and very small steps. To recover, psychiatrically disabled persons must be willing to try and fail and try again. Too often, rehabilitation programs are structured in such a way as to work against this process of recovery. These programs tend to have rigid guidelines for acceptance. They tend to have linear program designs in which a person must enter at point “A” and move through a series of consecutive steps to arrive at point “B.” Failure at any point along the way will require that participants return to entry level. Finally, some of these programs define failure in absolute terms, e.g., a program participant dropped from a vocational placement for failing to attend work for X number of days is simultaneously dropped from the program and must completely re-apply to the program when ready to accept the program’s rules and expectations. In all of these ways, the design and structure of rehabilitation programming can work against the process of recovery.

Rehabilitation programs can be environments which nurture recovery if they are structured to embrace, and indeed expect, the approach/avoid, try/fail dynamic which is the recovery process. This means that rehabilitation programs must have very flexible entry criteria and easy accessibility. The design of rehabilitation programming must be nonlinear, i.e., with multiple points of entry and levels of entry into programming. The real challenge of rehabilitation programs is to create fail-proof program models. A program is fail-proof when participants are always able to come back, pick-up where they left off, and try again. In a fail-proof environment where one


is welcomed, valued, and wanted, recovering persons can make the most effective use of rehabilitation services.

A second point regarding the establishment of rehabilitation environments conducive to the recovery process derives from the understanding that each person’s journey of recovery is unique. Of course, there are certain fundamental constituents of the process of recovery that are similar in all persons with a disability, e.g., the experience of despair and the transition to hope, willingness, and responsible action. However, disabled people are, above all, individuals and will find their own special formula for what promotes their recovery and what does not. Therefore, it is important to offer recovering persons a wide variety of rehabilitation program options from which to choose, e.g., supported work programs, social clubs, transitional employment programs, consumer-run drop-in centers and businesses, workshops, skill training programs, and college support programs.

Consumer-run self-help groups, self-help networks and advocacy/lobbyist groups can also be important resources for recovering persons and should be available as options. Of course, these important resources can only be established and maintained by persons recovering from psychiatric disability. Creating these resources, as well as linking with other groups of disabled persons and sharing existing resources, is one of the greatest challenges that face those of us who are recovering.

Additionally, if we truly hope to offer a wide variety of rehabilitation programs to the psychiatrically disabled, then it is important to examine the values upon which so much of our programming is based. Too often we project traditional “American” values on disabled people, e.g., rugged individualism, competition, personal achievement, and self-sufficiency. Too often our program models have tacitly adopted these, and only these, values. We might ask ourselves: Are all of our local area’s vocational rehabilitation programs built on a competitive model in which individual achievement is stressed more than cooperative group efforts? Are our residential rehabilitation programs all geared toward preparing people to live independently?

For some psychiatrically disabled people, especially those who relapse frequently, these traditional values of competition, individual achievement, independence, and self-sufficiency are oppressive. Programs that are tacitly built on these values are invitations to failure for many recovering persons. For these persons, “independent living” amounts to the loneliness of four walls in the corner of some rooming house. For these persons, “individual vocational achievement” amounts to failing one vocational program after another until they come to believe they are worthless human beings with nothing to contribute. For these persons, an alternative type of rehabilitation program, and even lifestyle, should be available as an option. Instead of competitive vocational training based on individual achievement, a cooperative work setting stressing group achievement could be established. The value here is cooperation in the achievement of work goals and the sharing of responsibility for work production so that the group or work community can compensate for the individual during periods of relapse. Residential program options should include the possibility for communal living situations such as the L’Arche communities pioneered by Jean Vanier. When these


types of options are made available and exist alongside rehabilitation programs based on more traditional values, then we can feel confident that we are offering a truly comprehensive network of services from which recovering persons can choose their own course of rehabilitation.

The third recommendation for creating programs that enhance recovery involves recognition of the gift that disabled people have to give to each other. This gift is their hope, strength and experience as lived in the recovery process. In this sense, disabled persons can become role models for each other. During that dark night of anguish and despair when disabled persons live without hope, the presence of other recovering persons can challenge that despair through example. It becomes very difficult to continue to convince oneself that there is no hope when one is surrounded by other equally disabled persons who are making strides in their recovery!

Hope is contagious and that is why it is so important to hire disabled people in rehabilitation programs. Because recovery is a phenomenon that is similar for all disabled people, it can be very effective to have persons with divergent disabilities act as role models for one another. Additionally, a person need not be “fully recovered” in order to serve as a role model. Very often a disabled person who is only a few “steps” ahead of another person can be more effective than one whose achievements seem overly impressive and distanced.

Finally, and perhaps most fundamentally, staff attitudes are very important in shaping rehabilitation environments. There are a number of common staff attitudes that are particularly unhelpful to recovering persons. For instance, too often staff attitudes reflect the implicit supposition that there is the “world of the abnormal” and the “world of the normal.” The task facing the staff is to somehow get the people in the “abnormal world” to fit into the “normal world.” This creates an us/them dichotomy wherein “they” (the disabled) are expected to do all of the changing and growing. Such an attitude places staff in a very safe position in which they can maintain the illusion that they are not disabled, that they are not wounded in any way, and that they have no need to live the spirit of recovery in their own lives. Indeed, when the us/them attitude prevails, “staff” and “clients” are truly worlds apart. Such an environment is oppressive to those disabled persons who are struggling with their own recovery.

If a rehabilitation program is to be a dynamic setting that promotes and nurtures the recovery process, then the rigid walls separating the “world of the disabled” and the “world of the normal” must be torn down. Staff members must be helped to recognize the ways in which they, too, are deeply wounded. Perhaps they have experienced anguish in their lives or perhaps they have known personal tragedy or struggle. To embrace and accept our own woundedness and vulnerability is the first step toward understanding the experience of the disabled. In so doing we discover that we share a common humanity with the disabled and that we are not “worlds apart.”

A dynamic rehabilitation environment is one in which staff members are vitally involved in their own personal growth and/or recovery. Therefore, they empathize deeply with the woundedness and vulnerability that the disabled experience. They understand that


in some mysterious way to be human means that all of us must “rise on lopped limbs” to a new life.

Sources:

Dunne, J. Sense of community in L’Arche and in the writings of Jean Vanier: Daybreak monograph 20. Richmond Hill, Ontario: Daybreak Publications.

Harrison, V. A biologist’s view of pain, suffering and marginal life. In F. Dougherty (Ed.), The deprived, the disabled and the fullness of life. Delaware: Michael Glazier.

Knowles, R.T. Human development and human possibility: Erikson in the light of Heidegger. Lanham: University Press of America.

Roethke, T. The lost son and other poems. In The collected poems of Theodore Roethke. New York: Anchor Press/Doubleday.

Vanier, J., & Wolfensberger, W. Growing together: Daybreak monograph 2. Richmond Hill, Ontario: Daybreak Publications.


Worksheet 13: A First-Person Account — “I Can Tie My Shoe”

Most people are born with a competitive nature and a drive to succeed. It is innate in us as human beings to strive to accomplish what we need to achieve a happy and successful life. As a person with mental illness, I’m no different. I have aspirations, hopes, and dreams too. I need to feel good about myself and proud of my accomplishments. But due to the nature of my illness, I can’t handle the stress load that comes with the high price of success. I need to scale my expectations down to realistic levels. I have to realize that I’ll never be a brain surgeon, fighter pilot, or president of the United States. But I could be a friend, sister, daughter, and most importantly a good person.

A person with mental illness — or a brain disorder — suffers a loss of potential, which in my opinion is the worst result of the illness. I can’t help but think about “what might have been” had I never come down with schizophrenia. I attended college and graduated, but how can I compete in the real world with my colleagues who are “normal?” I realized I simply can no longer compare myself or my situation to normal people. Normal people don’t have to worry about setting limits and watching stress levels like I do; stress levels that I can’t tolerate and that deny me the chance of a normal life.

I used to have grandiose ideas about what success might be for me. I wanted the prestige, respect, and gratification that come with a high-paying, professional career. I wanted the perfect family with 2.5 children, a big house, nice car, and vacations south every winter. But, because of my mental illness, I’m forced to envision a more practical reality for myself. A reality where I accept the simple, tiny, day-to-day successes as the ones that matter most. It was these small feats of accomplishment that got me through my four-week hospital stay, the remainder of college, graduation, and beyond.

A few days after being released from my initial hospitalization, I returned as a senior to the University of Wisconsin, Eau Claire. There I began my long journey of recovery by achieving small successes every day.

As recommended by my doctor, I began individual therapy sessions with an on-campus psychologist. After evaluating my situation, we decided my most important link to recovery would be by making “contacts” with others. This would help me get back in touch with reality. Throughout the school year, this was my number one recovering technique. At first, I needed to make one contact a day by asserting myself enough to greet another with a “hi” and a smile. Every week I’d increase the quantity and quality of my daily contacts until I was making small talk, four to five times a day.

When I look back, I wonder how I made it through. To any other college student, my number one recovery technique would have seemed pathetic. Especially to my outgoing school friends who were experts at the art of socialization. But for me, these small contacts were an important part of my recovery because each contact connected me with people and prevented me from complete isolation and withdrawal.


These “contacts” benefited me in many ways. For one, they allowed me to hold onto a sense of humor. It was a success if I could appreciate a good joke, crack a genuine smile, and (God forbid) laugh. The art of listening to conversations helped me focus and straighten out my muddled thinking. Maintaining eye contact with others helped me gain confidence in myself on the inside and outside.

Toward the end of my four-week hospital stay, I had made two friends. We were in a therapy group together with other patients that met every afternoon. On one occasion we all sat in a circle and shared with one another one thing we accomplished that day. Well, on his turn, a newcomer to the group bowed his head and said, “I can tie my shoe.” The rest of us laughed a little, but it was where he was at in his illness, and if tying his shoe — an act so simple — gave him self-confidence, well that’s the point.

To speed up recovery, which should be the goal of every person with a mental illness, we need to be proud of all small successes and acknowledge them. Successes that may seem trivial and sad to normal people aren’t to us. We’re in a different league than the normal people. Our standards of success differ. Our levels of tolerance differ. Our sensitivity differs. We need to learn from each success and continue to achieve others. Success helps us cope and relate to others, which is an important way to keep us in touch with reality and away from withdrawal. Source: Susan Mader, Wisconsin


Worksheet 14: Getting Well is Not a Race

Mental illnesses — or brain disorders — can be difficult to cope with and live with. The age most people become ill is between 16 and 30, and within that range the late teenage years are the most common. One can imagine how difficult it is for teens and youth to be dealing with severe brain disorders.

Many times — and this is true for me, too — doctors, family, friends, and society in general try to rush the individual who is ill to come back in a hurry and “catch up” on the time they have “lost.” This urging happens often, and it may be a tragic mistake to try to come back so fast. Recovery is important when someone is mentally ill, but it’s not smart to turn recovery into a race with the clock. Getting well is not a race. It is something that takes time, patience, and a few ups and downs.

Why race? Do we put a time limit on someone who has a heart attack? We don’t tell them, “You have two weeks to get well.” Why should it be any different for someone who has a brain disorder and is striving for health?

These disorders of the brain are very traumatic. Maybe that’s why there is always that rush to get well, to forget about the pain, the stigma, the hurts and tears, to eliminate the horror immediately. I’m sure the prompting is all well-intentioned. However, I know from experience that getting well is not a race. In fact, making it a race only puts more pressure on everyone, especially the person who is ill. Such racing in most cases only leads to a relapse because somebody was brought back too fast. Although the prompting is done out of caring, it may be dangerous in the long run.

For those who are ill, they themselves need time to put their lives back together again. Granted, one must make some effort to move forward. But, believe me, a person needs time to let the smoke clear and get a perspective on what is happening with him and in the world around him. Work, school, or whatever it may be will come to pass soon enough. Let the person, the illness, and the situation evolve naturally. It helps if the person who is ill has time to heal, to function, and then to start out again and get some success under his or her belt. If it is indeed a race, then remember that the tortoise beat the hare.

Feeling a need to push a person who is ill may be natural, but in reality those feelings and the consequent actions are negative for the person with the disorder. People who are going through the trauma of such illnesses need to take small bites — not one huge bite — to be on their way again. With time, things will come around, even though the illness is so overpowering to everyone involved. If you go up a flight of stairs, usually you go up one step at a time. When dealing with mental illnesses, one step at a time will get you to the top without wearing you out.

So let it be known that getting healthier when dealing with a brain disorder is not a race nor should it be. Take your time. We all have enough time to do what we were meant to do in life, and that is true for everybody, including those with a brain disorder. Source: Dylan Abraham, Wisconsin


Worksheet 15: Innovative Recovery Approaches

There are a variety of innovative, non-traditional therapeutic options available to assist people in their mental health recovery. A few of the best researched programs are described below. We encourage you to learn more about how these and other programs can provide invaluable skills and support in addition to traditional treatment.

The Wellness Recovery Action Plan (WRAP)® is a set of processes that people design themselves to help support their wellness and prevent relapses. It was developed in 1997 by Dr. Mary Ellen Copeland and has been extensively researched. Visit mentalhealthrecovery.com to learn more.

WRAP® can help people: • Create simple, safe wellness tools • Develop a list of things to do every day to stay as well as possible • Identify upsetting events, early warning signs and signs of crisis and develop

action plans for responding at these times • Create a crisis plan • Create a post-crisis plan

Whole Health Action Management (WHAM) is a training program and peer support group model developed by the Center for Integrated Health Solutions (CIHS) at SAMHSA that encourages increased resiliency, wellness and self-management of behavioral health among people with co-occurring mental illness and substance use disorders. WHAM aims to help people build a habit of healthier behavior. Visit integration.samhsa.gov to learn more.

Participants in WHAM: • Identify their strengths and supports in 10 science-based whole health and

resiliency factors • Create an achievable whole health goal and weekly action plan • Participate in WHAM peer support groups • Practice relaxation to manage stress • Use cognitive techniques to reframe negative thinking • Know basic whole health screenings and how to prepare for them • Create a shared decision-making form to help them have more engaging

meetings with health care providers

NAMI Peer-to-Peer is a free, eight-session education program for anyone who is experiencing or has experienced the challenges of a mental health condition. The course provides a safe environment for participants to learn communication skills, strengthen relationships, set a vision and goals for the future and better understand their mental health and recovery. It's also available in Spanish as De Persona a Persona de NAMI. Learn more at nami.org/peertopeer Sources: mentalhealthrecovery.com; copelandcenter.com; integration.samhsa.gov (search WHAM mental health); nami.org


Worksheet 16: The Individual Placement and Support Model (IPS)

Supported employment refers to services that help people with disabilities, including intellectual disabilities, mental health disorders and traumatic brain injury, find and maintain a job. There are several models, or types, of supported employment services.

A brief published by NASMHPD stated that “research shows that 70% of unemployed adults with serious mental illnesses (SMI) have a strong desire to work and consider finding a job a priority. Among those who do desire to work, approximately 60% of individuals with SMI who are exposed to evidence-based supported employment services can be successfully employed in real jobs within the community.” The brief also indicates that “…the preferred evidence-based approach for individuals with SMI [is] Individual Placement and Support (IPS) Supported Employment.”

The IPS Employment Center describes Individual Placement and Support (IPS) as “a model of supported employment for people with serious mental illness (e.g., schizophrenia spectrum disorder, bipolar disorder, depression). IPS supported employment helps people living with behavioral health conditions work at regular jobs of their choosing. Although variations of supported employment exist, IPS refers to the evidence-based practice of supported employment. Mainstream education and technical training are included as ways to advance career paths.”

IPS is based on 8 principles:

1. Competitive Employment: Jobs anyone can apply for, pay at least minimum wage/same pay as coworkers with similar duties and have no artificial time limits imposed by the social service agency.

2. Systematic Job Development: Employment specialists systematically visit employers, who are selected based on the job seeker’s preferences, to learn about their business needs and hiring preferences.

3. Rapid Job Search: IPS programs use a rapid job search approach to help job

seekers obtain jobs rather than assessments, training and counseling. The first face to face contact with the employer occurs within 30 days.

4. Integrated Services: IPS programs are integrated with mental health

treatment teams. Employment Specialists attach to one or two mental health treatment teams, which discuss their caseload.

5. Benefits Planning: Employment specialist help people obtain personalized,

understandable, and accurate information about their Social Security, Medicaid and other government entitlements.


6. Zero Exclusion: People are not excluded on the basis of readiness, diagnoses, symptoms, substance use history, psychiatric hospitalizations, homelessness, level of disability or legal system involvement.

7. Time-Unlimited Supports: Job supports are individualized and continue for

as long as each worker wants and needs the support. Employment Specialists have face to face contact at least monthly.

8. Worker Preferences: IPS program services are based on each job seeker’s

preferences and choices rather than the employment specialist’s and supervisor’s judgements.

Notes: Sources: NASMHPD, 2018; IPS Employment Center, ipsworks.org (see Reference section for full citations)


Worksheet 17: SMI Adviser The American Psychiatric Association (APA) and SAMHSA have collaborated to create SMI Adviser — a clinical support system, that centers on evidence-based care for people with serious mental illness or SMI.

The initiative focuses on the three most common conditions associated with SMI:

• Bipolar disorder • Depressive disorder • Schizophrenia

SMI Adviser is free to use and provides innovative education, resources and answers about these conditions for all providers on the mental health care team, including family members.

The project includes:

• An interactive chat bot to help people easily find answers to questions. • A system for providers to request and receive consultations directly from clinical

experts of many specialties. • Resources for patients, families, and the general public.

Visit SMIadviser.org to search for resources and sign up for the newsletter.

NAMI Family Family

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