Easing diabetes distress

By Richard Schaub

Patients with a chronic disease face the daily challenge of coping with the distress of the illness while still motivating themselves to feel purposeful. Any chronic illness that has a downward prognosis, serious potential future complications, or many daily self-care demands, also has the risk of activating in the Patient a sense of vulnerability and futility.

Diabetes, both Type 1 and Type 2, are chronic illnesses that require multiple management steps daily. Patients are required to test their blood sugar, adjust insulin doses, and may need to modify their eating to adjust for changes in blood sugar, all resulting in daily stress and, for many, distress. 

Diabetes distress is defined by Lawrence Fisher, research director at the Behavioral Diabetes Institute in San Diego, as “…the worries, fears and concerns that people with diabetes experience on a daily basis.” High blood sugars, he says, activate fears of long-term complications of loss of limbs or blindness.

In addition to fearful future images, patients with Type 2 diabetes who take insulin are confronted with the reality of their diabetes multiple times a day and are often subjected to repetitive, persistent patterns of negative thinking. High levels of diabetes distress have been associated with poor self-care, poor blood sugar control, a low sense of efficacy, and overall describe a poor quality of life.

 In this article, the health professional is offered a purpose-based set of practices, the Life Purpose Method, that can reduce suffering and increase peace in patients with diabetes distress and other chronic illnesses. 

Historical Background of the Method

Victor Frankl, a Viennese psychiatrist and the founder of logotherapy, defined distress with a simple formula: Distress is suffering that has no meaning. He came to this formula through painful personal experience: he emotionally survived confinement in a Nazi concentration camp by continuously reaffirming his sense of meaning and purpose in life as a source of strength.   One of those sources during his imprisonment was the need to stay alive in order to find out the fate of his pregnant wife confined in a different camp. His pioneering book, Man’s Search for Meaning, has been in continuous print for 70 years because of its teaching about dealing with suffering.  

With a similar personal and professional narrative, Roberto Assagioli, a Florentine psychiatrist and the founder of psychosynthesis, described the need to consciously and repeatedly choose an attitude toward suffering while he was imprisoned in solitary confinement by the Italian Fascist police in 1940.

“I realized I was free to take one or another attitude toward the situation,” he said. “I could rebel, I could submit passively, vegetating. Or I could indulge in self-pity and assume the martyr’s role. Or I could take the situation with a sense of humor, or I could make it a rest cure, or I could submit myself to psychological experiments on myself. Or, finally, I could make it a spiritual retreat—at last away from the world. There was no doubt in my mind. I was responsible”.  

After his release from prison, Assagioli was under police surveillance, and his home was later bombed by the Nazis who had taken control of Italy. He was forced to hide in the Tuscan hills with his son, who contracted tuberculosis and died soon after the war ended. 

In the face of such suffering, both Frankl and Assagioli, applying their medical and psychological training on themselves, each realized that they still had choice in how to respond to their conditions. Frankl referred to this as “freedom of will” and Assagioli called it “an act of will”. The Life Purpose Method applies their insights to facing diabetes distress and other chronic illnesses and, by extension, to life situations in general over which we must accept the limitations of our personal control.  

 The Steps of the Method

The Life Purpose Method offers a skillset for health professionals to teach to patients in times of distress. The steps of the method are:

1. To cultivate self-observation of all the different thoughts, feelings, images and sensations that go on in us.
2. Out of that spectrum of inner experiences, to identify those thoughts, feelings, images and sensations that express our values, aspirations and sense of our life’s purpose.
3. Consistently choose to direct our consciousness (i.e., an act of will) toward those thoughts, feelings, images and sensations that hold our values, aspirations and life purpose no matter what circumstances we are enduring. 

Through these practices, Assagioli declared in the darkness of solitary confinement that he had achieved “freedom from circumstances.”

Subsequent to Frankl and Assagioli’s insights, there have been many studies that establish the positive effect of purpose in life on health, longevity, and resilience. The following case study of Carolyn, a 54-year-old female high school teacher who was diagnosed with Type 2 Diabetes in her late twenties and was now suffering from diabetes-related kidney disease with a risk of dialysis if her self-care did not improve, illustrates the potential of purpose-based practices to improve patient self-care and mental health.        

Case Study

Carolyn was referred for psychotherapy by her endocrinologist because of poor glycemic control, depression, and her unwillingness to take care of her diabetes. Each time she faced a diabetes-based task—blood sugar testing, insulin dosing, or counting carbohydrates—her overarching sense of threat, negative thinking and emotional distress was making these tasks much more difficult to carry out. Overall, she felt burdened and trapped by her illness. 

Early on using cognitive-behavioral therapy, she was able to identify that each time she measured a high blood sugar, her immediate thoughts were “this is terrible” or “I hate this” or “I give up.”

As we explored her deep sense of burden, Carolyn said, “I am just not good enough” and expressed an impending fear of “disappointing everyone.” To reduce the effect of these thoughts, Carolyn was also treated with antidepressant medication, but she still went through periods of sadness and anger and the negative reaffirmation that she was “not good enough.” Inevitably, she would give up her self-care, stop her medication and overeat for weeks or months. It became clear that she needed a deeper sense of purpose in life in order to strengthen her self-care. 

At that point, she was introduced to self-observation, the first step of the Life Purpose Method. 

Self-observation, cultivated in many meditative traditions, is the ability to mentally step back and self-observe our inner thoughts, feelings, images and sensations rather than giving into them or trying to even re-frame them with cognitive-behavioral and other psychological strategies.  Specifically, Carolyn was first trained to follow her breathing and to say out loud anything that was coming into her awareness from moment to moment. After several minutes of this, she was then instructed to verbalize only internally whatever she was noticing. The technique has various names, including stream of consciousness.

Her self-observation practice was then elaborated on by the following steps: 

1. Place her hands on her belly, one hand on top of the other.
2. Observe the rising and falling of her belly underneath her hands.
3. Think of the rising and falling as her center.
4. If her attention was pulled off-center by a thought, feeling, image or sensation, notice it only long enough to identify it, and then to return to center.

The movement from center to off-center and back to center was taught as the normal flow of attention. No attempt was made to stay fixedly focused on the center. In this way, Carolyn was establishing a base of relaxation in the rising and falling of her belly and at the same time not denying whatever experiences were present.

This self-observation inner skill has been referred to as mindfulness or disidentification. The central understanding of mindfulness and disidentification is that thoughts, feelings images and sensations are, at one level, just coming and going, if we do not engage with them. Carolyn noticed, in this self-observation phase, an array of experiences—some pleasant, some unpleasant, some new, some depressingly familiar, all coming and going, coming and going. She could either engage with them or let them go. Letting her thoughts, feelings, images and sensations come and go did not magically make them disappear, but her act of not identifying with them reduced their effect on her. Something in the peaceful outcome of this practice motivated Carolyn to work on this step between therapy sessions.

In time, the ability to choose whether to identify with or dis-identify from a thought, feeling image or sensation became stronger. The gains made by Carolyn were bringing her to the point of self-observing her automatic negative thoughts without being drawn into the reactive worry, anger and despair that these thoughts used to activate. At times, she felt a greater ease and a quiet mind as she prepared to test her blood sugar, give insulin and take her other medication.

These self-care developments were pleasing to Carolyn, but even more importantly was the sense of “inner freedom” she felt in the realization that she could choose whether to go into the worry, anger and fear – or to keep cultivating her new-found way of easing her distress. Carolyn had discovered the quiet power of inner choice that Frankl had found in the Nazi camp and Assagioli had in his prison cell.

A patient living with diabetes tests their blood sugars five to six times a day, and each testing moment can be another occasion for regret. Even with her new-found awareness of inner choice, the negative thinking would still become activated and depress Carolyn. At each visit to her endocrinologist, or if her weight remained the same despite exercising and healthy eating, the thoughts of giving up were dominant, and as a result she would again abandon her self-care. In these situations, it is necessary to discover early childhood experiences or other reasons that the negative thinking is so tenacious.   

In one session, we explored early childhood origins of her chronic negative thinking by using an Assagioli imagery technique. In general, mental imagery techniques tap into both the visual memory system and the intuitive-associative patterns of mind that allow us to connect past and present into a coherent understanding: verbal, rational thinking is far more limited in making such connections.

Carolyn was guided into a relaxed trance state where she imagined herself sitting in a movie or stage theatre. The movie theatre scenario offers a structured Assagioli method for mindfulness and disidentification. By sitting in the audience in a theatre, the patient is an observer to the experience that follows.

She was guided to imagine on a mental stage or screen the part of her that “feels so burdened by her diabetes.” By seeing this aspect of the self on stage from the comfort of the audience or observer seat, she was better able to stand back and reflect on whatever appeared.

She saw a memory of herself as a young girl, 10 or 11 years old, who was being asked to help her anxious, angry mother. The burdened feeling was very palpable in this scene. She spoke of how her mother used to get angry at the stupidest things, and that even to this day she avoids doing any actions or saying anything that could activate her now elderly mother’s anger. She feels trapped with her mother, wanting to help and yet expecting the next insult, the next personal attack, at any moment. Spontaneously, Carolyn said that she now understood why she was both fearful of disappointing her endocrinologist, her nurse, or her therapist for not having excellent diabetes control or for not maintaining her self-care regime. At any moment, she was expecting her healthcare team to react with anger and attack her, and she felt trapped by them.   

Carolyn could now recognize a negative belief system that had operated unseen in her. She summarized as, “If something goes wrong, it’s my fault, and I am a loser if something doesn’t work out.”   

The recognition of the early memory in a more detached state allowed Carolyn to have a deeper understanding of her own projection onto her diabetes. Her ability to choose whether to identify with it, or not, was strengthened by her new self-knowledge. 

The Next Step

In order to capitalize on these skills of self-observation and self-knowledge, we can teach our patients a crucial next step: how to identify a replacement thought, feeling, image or sensation to turn toward when they are choosing not to identify with a negative self-belief.

For the religious person, turning toward prayer and prayerful thoughts and feelings could be the replacement. For the secular patient, and for the increasing percentage of patients with no connection to religion, the awareness of life purpose is a quietly powerful replacement.

Applying the Life Purpose Method in diabetes care and that of other chronic illnesses offer patients an opportunity to awaken a more resilient and purposeful self. Instead of repetitively denying or confronting the patient’s negative and hopeless thinking, the method explores under-appreciated aspects of the person’s innate drive toward a life that matters, a life of purpose. The identification of the patient’s deeper innate drive toward a life of purpose can be accomplished with cognitive, imagery and meditative tools. 

In Carolyn’s case, she completed the Values Inventory Assessment (VIA), a psychometrically validated personality test that measures an individual’s character strengths. A “character strength” is a positive aspect of the personality, different than a skillset or talent in that the person is identifying when they are accessing their best self. The VIA generates a list of 24 character strengths in a descending order from most prevalent to least used or developed in the individual.

Carolyn’s top five character strengths were kindness, leadership, honesty, fairness, and teamwork. After exploring examples of how these strengths revealed themselves in her daily life, the next step was to assist Carolyn in locating an embodiment, a specific memory or image, of her character strengths in her daily life. Imagery work offers a clinical opportunity to activate an energetic, affectively charged representation of a list of character traits that can otherwise be experienced by the participant as neutral or distant. 

Surviving prison, Assagioli wrote that his life’s goal was to “free people from their inner prisons and that the only way out of our inner prisons is up.”  

The “only way out is up” captures an essential principal of Assagioli’s psychosynthesis – the deliberate cultivation of the higher aspects of human beings such as values, purpose, will, creativity, beauty, oneness. This principle of “the only way out is up” was then utilized to connect Carolyn more consciously to the positive characteristics identified by her VIA scores.

She was guided to begin her self-observation meditation for two minutes. She was then given the following suggestion.

“Now, bring to mind a time or remember a time when doing favors or good deeds for others, helping them, taking care of them (kindness) was foremost.”

After a pause, the description fragment of “doing favors or good deeds for others, helping them, taking care of them” then led to other strengths in a slow reflective mode: 

“…a time when you were in a group, encouraging each member to get things done and at the same relating to everyone within the group in a positive way (leadership)…and where speaking your truth in a genuine way and acting in a sincere way without pretense (honesty) is so central for you….and in this moment as you share your thoughts, you treat all people the same, with a hidden care, to maintain a ‘notion of fairness and justice, not allowing your personal feelings towards others to harm them, as you give everyone a fair chance to develop and grow (fairness) while working together well (teamwork)…. Allow a memory that captures all of this and more, a moment, a time of meaning…let it come to mind.”  

At this point, Carolyn began to smile. She spontaneously spoke of a recent time in her job as a high school teacher where she was teaching colleagues.

“I have never been good at multiple choice exams or written tests,” she said, “[but] I do excel in the practical. I was always able to just know what was needed for the student. It wasn’t like something that I bragged about but my colleagues just noticed it and would approach me and ask for help. I had a way of pointing out faults and saying in a diplomatic fashion what they might want to do instead to really improve the student’s development. When they would then go talk to other teachers, the others could just tell they had been speaking to her, and it became a running joke that ‘you must have been talking to Carolyn’.”

She was then asked to recall this part of herself and to embody this part. As she did, she said that her heart and throat felt open and warm with tingling sensations. She spoke of a softness activated or awakened in her jaw and a smile on her face and in her eyes. She described this as an “authentic” experience of herself, what she is really like, her real purposeful self.   

In the session that followed, Carolyn shared isolated moments of still feeling burdened and not good enough and the negative impulses that followed from this threatened state: stopping her medications, not testing her blood sugar, and overeating. She was guided through the process of centering herself on the rising and falling of her abdomen and then guided to the image-memory of her positive teacher self. As that more resilient, more purposeful self was awakened and identified with again, she once more described her throat relaxing and her eyes softening with a gentle smile. She was then asked to imagine a difficult diabetes moment through the eyes of her real self, and she would spontaneously imagine choosing a healthier option.  

This practice of replacement was reinforced over several meetings. During the sessions with Carolyn, the treatment was following the Life Purpose Method steps: 

1. The inner skill of self-observing all of the different thoughts, feelings, images and sensations that go on in us.
2. Out of that spectrum of inner experiences, identify those thoughts, feelings images and sensations that represent our values, aspirations and sense of our life’s purpose.
3. Consistently choose to direct our consciousness toward that life purpose no matter what circumstances we are enduring. 

As we can see from Carolyn’s experience, negative patterns do not magically go away, but the conscious choice of identifying with a purposeful self can be strengthened, awakening the positive feelings that are generated by it. 

Over the coming months, her diabetes self-care improved. She was beginning to manage her food better, stopped any binge eating, and reduced her alcohol intake. Her sense of diabetes distress eased and was replaced by a sense of simply taking care of herself.

Discussion

Carolyn’s case illustrates one application of the Life Purpose Method of consciousness and choice. This purpose-based approach provides a way to awaken a deeper aspect of the self in times of distress. Carolyn shifted from a self that was identified with shame and fear of judgment and anger from others to a self that has positive characteristics and makes a unique offering to her professional community. This conscious movement from fear to purpose was a major factor in her shift to greater self-care.   

A year later, Carolyn’s diabetes care was in the ideal range. She continued to be active, lose weight and take better care of herself. Her success was of course the result of a team effort – her diabetes nurse, her physical trainer, her endocrinologist, her purpose-based therapy and, most of all, her deep desire to change.   

Conclusion

Diabetes distress is a living example of Frankl’s description of distress as suffering without meaning. Patients can feel isolated from their health care providers and support systems, overwhelmed by the diabetes tasks, and fearful of complications. Their suffering needs meaning and purpose in order to engage their self-care motivation. 

In Carolyn’s case, personal meaning was awakened through the recognition of a truer, more authentic self that carries within it an inherent sense of purpose for being alive and contributing to others. Motivated by their need to find answers to their own severe suffering, the European psychiatrists Frankl and Assagioli developed essential insights and practices that can be used by healthcare providers who face the issue of diabetes distress or other issues of chronic illness in their patients. By extension, the Life Purpose Method can also ease the vicarious distress and burnout that many professionals are reporting in our modern burdened healthcare systems. 

References

1. Fisher, L. (2016). Diabetes Voice, Volume 63, Issue 2, September.
2. Polonsky, W., Fisher L, Earles J.  (2005). Assessing psychosocial stress in diabetes: development of the diabetes distress scale. Diabetes Care, 28:626–631)
3. Frankl, V. (1962). Man’s search for meaning. Beacon Press: Boston.
4. Schaub, R. & Schaub, B. (1994). Freedom in jail: Assagioli’s notes.  Quest, 7, 3, Autumn.
5. Assagioli, R.  (1973). Act of will.  Penguin: New York.
6. McKnight, P. & Kashdan, T. (2009).  Purpose in life as a system that creates and sustains health and well-being: An integrative, testable theory. Review of General Psychology, Vol. 13, No. 3, 242–251
7. Schaub, R. & Schaub, B. (2015). Transpersonal development: Cultivating the human resources of peace, wisdom, purpose and oneness.  Florence Press: Huntington NY.
8. Kabat-Zinn, J.  (1991). Full catastrophe living.  New York: Delta.
9. Assagioli, R.  (1965). Psychosynthesis: A manual of techniques.  Penguin: New York. 
10. McGrath, R. (2014).  Scale and item level factor analysis of the VIA Inventory of Strengths, Assessment, 21, 4-14.

About the Authors

Barry Simon, MD, FRCP

Barry Simon, MD, FRCP, is a psychiatrist and psychoanalyst. He is an Assistant Professor of Psychiatry at the University of Toronto and a Consultant with the Leadership Centre for Diabetes at Mount Sinai Hospital where he improves diabetes adherence in patients with Type 1 and Type 2 Diabetes.  For the past two decades he has educated dietitians, family doctors and medical specialists on effective motivational and psychological strategies to improve diabetes adherence. Increasingly, he has been using purpose based psychotherapy in his care of patients who struggle with diabetes distress and diabetes adherence.