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Hope, emotional resilience and the capacity to maintain an optimistic perspective are often the invisible ingredients for coping with chronic illness and establishing wellness.
Positive psychology, founded by Martin Seligman in 1998, is an emerging area in the field of mental health focused on researching these qualities. Seligman's theoretical framework is dedicated to the study of mental "wellness" versus mental illness. Positive psychology does not deny that people may have emotional difficulties; rather, it explores in greater depth what makes people happy, resilient and able to thrive despite their circumstances.
A primary teaching point of this counseling methodology is the teaching of optimism, outlined in Seligman's 1998 book, Learned Optimism. Practitioners of this approach believe that optimism can be taught; it is not solely the purview of those born with optimistic temperaments. In this counseling approach, patients are taught how to evaluate disappointments, with the ultimate goal of having one's optimistic voice be stronger than the pessimistic voice. Research findings in recent years have provided evidence of the physiological benefits of positive emotions (Salovey, Rothman, Detwiler and Steward, 2000).
Currently, positive psychology can be viewed as a philosophy/clinical orientation and also as a practical set of techniques. One caveat I have about this approach is that the focus on hope, emotional resilience and optimism needs to run parallel with the commitment to acknowledging the emotional pain, difficulties and suffering that chronically ill patients may undergo. Sometimes, due to the nature of the disability or the patient's phase of acceptance, it can feel like too much pressure to feel optimistic; so in these cases, I counsel patients to consider a constructive viewpoint rather than choosing between an optimistic or pessimistic viewpoint.
I define a constructive viewpoint as one where a patient identifies a feeling-despair, frustration or anxiety-and finds a constructive aim for that feeling. The following is an adaptation of a few positive psychological principles integrated with insights from my own clinical work.
Perspective Skills
At the most basic level, positive psychology looks at the way people process difficult emotional events. In my treatment sessions with depressed individuals, a primary skill I teach patients is perspective skills.
Perspective skills include a few components. First is the ability to distinguish facts versus feelings. For example, one of my patients illustrated this idea nicely with the following example: "I may feel alone, but I can acknowledge the fact that my wife and children care about me."
The second part of perspective skills is the capacity for balanced thinking. Applied to chronic illness, it means that patients can learn that they may feel scared about the future, yet they can also understand that there are options available to improve their quality of life. A patient can be frustrated with the demands of getting through the day with a disability, yet still hold on to the comfort that when he or she gets home, it will be possible to let go and de-stress.
According to Seligman, each person has a predictable way of explaining things to himself, called an explanatory style. In his research, Seligman found that people had specific ways of explaining both good and bad things in their lives.
Dr. Robert Dobrenski is a cognitive-behavioral therapist (http://www.shrinktalk.net/) in private practice who has extensive experience with chronically ill patients in long-term care, nursing homes and other settings. He emphasizes the importance of paying attention to patients' self-talk-in other words, the way patients are explaining things to themselves. He believes that this is where practitioners can intervene in powerful ways to re-direct patients to a more balanced perspective. Dobrenski explains:
"I think it is important to lend a vision of optimism without denying realism. The goal is not to engage in positive thinking all the time, as it does not necessarily motivate patients to make changes. Negative emotions and experiences are part of the human condition. It is hard to experience happiness if we don't have healthy negative emotions. At the same time, patients may be conditioned by their medical experience to think they can only be coping with non-happiness and not think about what makes them happy."
Jody Esposito, 22, a woman with spina bifida and a spokesperson for the Make-a-Wish Foundation, provides some powerful examples from a patient perspective. Jody's story is compelling in that she has the most severe form of spina bifida and has undergone multiple interventions related to the condition. She is a wheelchair user who was confronted with the decision to amputate her legs at the age of 13, and she has undergone 38 surgeries for her back, legs and clubbed foot, as well as surgeries related to shunts and bladder and bowel interventions. Jody shares how her support system was pivotal in maintaining her perspective at different points in her development:
"When I was in high school and struggling, my parents would always say, 'You will learn it, if you keep continuing. If you just go a little bit more, you will get it.' My physical therapist would say, 'Keep doing your exercises and you will get stronger (even though it is hard to stick to it).' I also remember my medical team always maintained a positive attitude when I had relapses. My doctor would say, 'This is a temporary setback, it will get better.' My medical team also tried to make my hospitalizations as fun as possible. On my 18th birthday, I was hospitalized. I remember my doctor came in with a 'happy birthday' banner for me. These moments reduced how traumatic these times could have been for me."
When patients are facing a medical trauma, setback or recovery challenge, it is important to remember that this presents a new moment for which they have no frame of reference to learn or understand how to negotiate emotionally. Listening for opportunities where patients may seem stuck-either emotionally or from a perspective standpoint-are critical points of intervention. Dobrenski supports this assertion:
"For some patients, the first step toward mobilizing themselves in their medical care is to connect to hope. It is essential for practitioners to dialogue with patients about re-defining happiness, remaining vital and what it means to be a contributing person to society."
Teaching Emotional Resilience
When patients are facing life with chronic conditions-whether progressive or stable-they are in for complex emotional journeys of ongoing challenges, stress and considerable life planning. Patients will come with complex feelings. At these junctures, it is important to assess how well they are managing their disease holistically.
According to posiive psychology, when patients come from traumatic backgrounds, they may have a tendency to see their problems as permanent, pervasive and personal. This framework can be a very helpful processing tool for patients at difficult transition points in their illness journeys, and can aid in building emotional resilience.
When a chronically ill individual views his or her medical condition as permanent, it refers to the fact that the disability is unchangeable. While this is most often the case, it does not mean that the person cannot maintain his or her current level of functioning through specific exercises, stress management techniques (see "Stress Management," April 28) or problem-solving about how to work around the particular disability (see "Integrating Behavioral Skills," March 31).
Next, it is easy to let the emotional stress of an illness feel pervasive, in that it can affect every area of a person's life. This is mostly likely the case on "bad days," but there could also be other influences affecting a person's sense of feeling trapped, such as a lack of resources or social support. Jody shares how she challenged this notion, not letting her disability have a pervasive effect on her life.
"I realized that I had to make more friends, and that is something I could learn and not solely linked to my disability. Also I had to learn to speak up with other people when they made assumptions about my disability. Sometimes my peers would think, 'You can't dance, so you can't go to the party.'"
Last is the personal domain. It is natural for a chronic condition or chronic pain to be internalized: the person loses his or her sense of identity, vitality or agency. Paying attention to the person behind the condition is critical. Test out the following exploratory questions with patients: What are my strengths-ones I can realistically work with? What are my limitations-ones I can work around? (see "Solution-focused Techniques," June 23).
The main question to pose to patients is: How I can be the fullest person I can be with the particular demands and limits of my disability? Jody shares two powerful examples of how she separates her disability from who she is as a person:
"In high school, my teachers saw that I was smart and a good story reader and could relate well to children. This inspired me to go to college to work on my early childhood certificate to be a teaching assistant. College is not easy for me; it will take me four years to do a two-year degree. I am working as a teaching assistant for pre-K, and I really enjoy it. I run errands, play games, do puzzles and work with the kids on identifying their name and address for safety."
Jody has also been able to extend her hope to envisioning her future:
"I want to get married, have a family and finish college. I know it is going to be harder for me than for other people, but I am willing to work harder. I think the important thing I learned is not to compare myself to people who don't have my challenges; I look to friends who are also disabled and try to learn how they achieved their dreams in life. This is a better measure for me, and I think for others in my situation."
Planning for Positive Events
Another important insight of the positive psychology perspective is that people don't have to wait for life to get better to feel better; we can actively stimulate positive emotions by putting ourselves in positive situations. This can create new perspectives and new emotional experiences, leading to the possibility of envisioning new life alternatives.
Jody shares an example of one life-altering positive experience:
"People don't understand what people with disabilities go through-in my case, the challenge of writing papers, scheduling my medical appointments, asking for help-the stress does not end. It is so important to take a break from your disability, and also take a break as a family. My family and I had such an opportunity through the Make-a-Wish Foundation. We went to Daytona for seven days for a NASCAR event, and I got to meet my hero, Dale Earnhardt, Jr. For a little while I felt like a regular person, and my family did not have to think of my disability. It really helped us."
From a clinical standpoint, Dobrenski also emphasizes focusing not only on deficits in a patient's life, but also on growth:
"So much focus for patients is on what they can't do. I am not saying to invalidate that, but it is important to balance out the scorecard and focus on what they can do. Our models for patients should not only be coping models but also self-actualization models."
Refueling Hope
The most important ingredient of all is hope. It is important to remember that hope is not an event. Hope needs to be re-fueled and re-worked on a regular basis-weekly, daily and sometimes moment to moment. Dobrenski advises practitioners to check in regularly on their own levels of hope:
"Check your own definitions of happiness, hope and optimism. Don't expect that this is a constant in your own emotional life. It takes effort as treatment providers also to sustain hope."
Jody offers thoughtful feedback on what hope means to her:
"When I was a child, my MD would tell my parents I would not live past my teens. I am 22 now and in college. There is so much technology now in the field of rehab. Medical people need to keep updated on what is out there and help patients cope with their situation and get through life. Keep updated on rehab options; see what is out there before you say to someone there is no hope?.
"To other disabled people, I would say you will find hope if you talk to other people who can understand what you are going through; don't isolate yourself, go to chat rooms, look up resources on the Internet. Human connection will give you hope."
Unearthing possibilities for our patients does not have to be left to chance. We can actively guide our patients to reach for and imagine hopes they may not have otherwise envisioned.
Dr. Reji Mathew is a psychotherapist/clinical instructor at the New York University. Her clinical expertise is in integrative psychotherapy, particularly cognitive behavioral skills training. Reach her via email at rqm3463@nyu.edu.
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