Accepted Manuscript

Mindfulness-based group therapy for systemic lupus erythematosus: A first

exploration of a promising mind-body intervention

Danny Horesh, Ittai Glick, Renen Taub, Nancy Agmon-Levin, Yehuda Shoenfeld

PII: S1744-3881(16)30199-2
DOI: 10.1016/j.ctcp.2016.11.011
Reference: CTCP 704

To appear in: Complementary Therapies in Clinical Practice

Received Date: 3 September 2016

Accepted Date: 27 November 2016

Please cite this article as: Horesh D, Glick I, Taub R, Agmon-Levin N, Shoenfeld Y, Mindfulness-
based group therapy for systemic lupus erythematosus: A first exploration of a promising mind-body
intervention, Complementary Therapies in Clinical Practice (2016), doi: 10.1016/j.ctcp.2016.11.011.

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Mindfulness-based group therapy for Systemic Lupus

Erythematosus:

A first exploration of a promising mind-body intervention

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Danny Horesh, PhDa,b
Ittai Glick, PhDc

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Renen Taub, BAa
Nancy Agmon-Levin, MDd,e

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Yehuda Shoenfeld, MDd,f

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Corresponding author
Danny Horesh, Ph.D.
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Department of Psychology
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Bar-Ilan University
Building 902, Room 313
Ramat-Gan 5290002
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Israel
Tel. +972-3-5318583
[email protected]
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aDepartment of Psychology, Bar-Ilan University, Ramat Gan, Israel

Department of Psychiatry, New York University School of Medicine, New York, NY
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c Shahaf Stress Reduction Clinic, Chaim Sheba Medical Center, Ramat Gan, Israel
d Zabludowicz Center for Autoimmune Diseases, Chaim Sheba Medical Center, Ramat Gan, Israel
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eSackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel

fIncumbent of the Laura Schwarz-KipChair for Research of Autoimmune Diseases, Tel-Aviv
University, Tel Aviv, Israel
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Mindfulness-based group therapy for Systemic Lupus Erythematosus:

A first exploration of a promising mind-body intervention

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Abstract

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Psychological effects related to systemic lupus erythematosus (SLE) are tremendous.

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While a variety of psychological treatments have been applied to assist SLE patients, the

effects of mindfulness practice were never documented in SLE. Mindfulness-based

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psychotherapy includes several techniques, including body-scan, breathing exercises, and

full awareness during daily activities. In this case report, we present a first attempt at

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conducting mindfulness-based group therapy among SLE patients. Six female SLE
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patients participated in an 8-week program. Improvement was observed in several areas:

patients' increased ability to differentiate between themselves and the disease; increased
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ability to accept, rather than to actively fight the fact that one must live with the disease;
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and decreased behavioral avoidance. These observations speak to the significant

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therapeutic potential of mindfulness practice among SLE patients. With its emphasis on

acceptance of negative physical and emotional states, mindfulness practice is a promising

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treatment option, which needs to be further studied.

Keywords: Mindfulness, Lupus, psychotherapy, Rheumatology

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Introduction:

Systemic Lupus Erythematosus (SLE) is an inflammatory autoimmune disease, involving

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chronic fatigue, joint pain, stiffness and swelling. In addition, patients often display skin

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lesions that appear or worsen with sun exposure1,2. It is a rare disease, with more frequent

incidence in young women. The overall prevalence per 100,000 ranges around 5.5, with an

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increased incidence of ~9.3 per 100,000 among females3. SLE causes significant

morbidity and mortality due to inflammatory disease activity, infectious processes

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secondary to the disease-induced immunosuppression and its treatment, and
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cardiovascular complications4. SLE is considered a stress-related disease, and in many

cases, symptoms are worsened under stressful conditions5,6. Neurological and psychiatric
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manifestations affect nearly half of patients with SLE, and several of these manifestations

define a disease criterion7. Throughout their lives, 65% of patients with lupus are
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diagnosed with a mood or anxiety disorder, including major depression (47%), specific
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phobia (24%), panic disorder (16%), obsessive-compulsive disorder (9%), and bipolar

disorder (6%). Thus, psychological effects related to SLE are significant, and exert a
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considerable impact on patients' quality of life8.

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A recent meta-analysis showed that psychological interventions may reduce levels of

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anxiety, depression, stress, and disease activity among SLE patients9. Mindfulness-based

psychotherapy encourages the patient to closely observe his/her emotional and

physiological state with an invitation to accept, rather than to ward-off, painful feelings
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and physical sensations10. Most mindfulness programs include several core techniques,

including body-scan (shifting attention between parts of the body with openness and

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curiosity), breathing exercises and practicing being fully aware during daily activities11.

Mindfulness-based interventions have proved to be effective in treating various psychiatric

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and physical conditions, including conditions characterized by intrusive pain, such as

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fibromyalgia and arthritis12. Biological markers associated with mindfulness practice

include reduced urine cortisol levels and increased number of white blood cell13.

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Surprisingly, mindfulness-based interventions were never explored in SLE.

Case Report AN
The described intervention took place at Zabludowicz Center for Autoimmune Diseases at
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Sheba Medical Center in Israel. Mindfulness has been practiced for years in various
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medical departments in the hospital, but was never applied to SLE before. To ensure the
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homogeneity of the group, we included only women age 60 years or older (M=62.83;

SD=7.63), with stable SLE disease. Following a short screening procedure (i.e., verifying
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SLE diagnosis, negating suicidality and severe cognitive/physical disability), 6 patients

participated in the mindfulness group. Therapy included 8 weekly group sessions. In the
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absence of a specific mindfulness protocol for SLE, the team created an amended
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treatment protocol thought to best fit SLE patients. In particular, treatment sessions were

shortened (e.g., 1.5-hour rather than 2.5-hour long sessions), and the traditional full-day

practice/retreat did not take place, in fear that it would prove to be too physically taxing
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for aging SLE patients. The group was led by two psychologists. Sessions gradually

moved from psycho-education regarding mindfulness and stress to detecting and

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reassessing negative automatic thoughts, identifying patterns of maladaptive behaviors and

interpretations of negative physical sensations, and, finally, applying mindfulness in daily

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life.

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The intervention was built around several main themes:

Integrating principle: encouraging a more flexible and accepting mindset towards the

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disease: Mindfulness practice fostered the understanding that fighting, rather than
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accepting, one’s difficulties would only make them worse. Cognitively, participants were

encouraged to identify instances in which they were judgmental towards themselves and
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their difficulties, thereby only further contributing to their own emotional distress. Hence,
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mindfulness training helped them replace this attitude with a more self-compassionate
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perspective. For example, one participant recognized that she used to start off her

mornings by blaming herself for being ‘weak and useless’. With the help of the group and
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therapists, she was able to observe and re-interpret these thoughts as temporary events in

the mind, rather than "objective" reflections of the self. Consequently, she reported
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feeling, perhaps for the first time, that she was not to blame for her weakness during the
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morning. These elements had a powerful impact on the group, and helped in creating an

atmosphere of support, shared fate and decreased loneliness. Guilt and shame are often
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dominant feelings among those coping with SLE14, and were therefore the subject of much

discussion.

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Creating a clearer distinction between disease and self: This is an important facet of what

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is known, in mindfulness terms, as "decentering"15. The underlying idea here was: "I am

living with the disease, and this is my reality; but that doesn't mean this is ALL OF ME".

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For example, one patient described the totality of her experience with SLE: “the disease

wakes up with me in the morning, and stays with me until I go to bed”. The therapists

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encouraged group participants to identify instances in which they found it difficult to
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distinguish between disease and self, resulting in a more catastrophic, total experience of

their SLE. This aspect proved to be particularly helpful, as participants were able to at
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least partly free themselves from the total grip of their symptoms. Therapy also provided

patients with new words to describe their symptoms. This new vocabulary was established
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mainly through the mindfulness technique of body scan, mentioned above. Getting
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acquainted with one's bodily sensations and symptoms lies at the core of mindfulness

practice, and seemed to be particularly useful with our SLE patients. By taking the time to
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observe their physical sensations in a supportive environment, group participants became

more familiar with, and therefore less frightened of, symptoms such as chronic pain,
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fatigue and general decline in functioning and movement ability. With this new physical
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vocabulary, they were able to better describe the limitations caused by their pain, such as:

“waking up in the morning and not being able to get to the pills on the night stand, because

the body is so rigid”. The therapists encouraged patients to observe their descriptions and
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related feelings, thereby creating a healthy distance from them. When symptoms were

described in this empathetic environment, they became more tolerable and separable from

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one's core personality and identity.

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Targeting maladaptive behaviors: The most dominant maladaptive behavior discussed by

group participants was avoidance. Avoidance seemed to touch various aspects of patients'

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lives, as they frequently attempted to reduce physical efforts and movement, and to avoid

further diseases or infections. For example, a nurse who used to work in the same hospital

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where the group took place had avoided visiting her colleagues for several years, fearing
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she would be exposed to germs. This fear was, for a very long time, hidden inside her, and

she hardly ever spoke about it with others. When it was shared with an empathetic
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audience in the group, and was the subject of slow, deep observation, its dimensions and

scope gradually decreased and became more manageable for her. Eventually, during one
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of the later sessions, she proudly shared with the group that she was able to overcome her
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avoidance for the first time, and visit her old work place.
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Discussion

To the best of our knowledge, this is the first-ever case report of mindfulness practice
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among SLE patients. Our preliminary observations of mindfulness training in SLE, and
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the highly positive feedback provided by the group's participants, suggest a significant

therapeutic potential for this intervention. This positive effect may be attributed to several

factors. First, mindfulness training puts a significant emphasis on non-judgmental

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acceptance of bodily sensations and emotional distress. This often stands in contrast to

more traditional practices in psychotherapy, particularly classic cognitive-behavioral

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therapy (CBT), which often targets the irrationality of "unwanted" negative cognitions. In

light of the chronic, debilitating nature of SLE, patients seem to benefit from an emphasis

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on acceptance and self-compassion. The aspects may enable them to carry the weight of

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symptoms more easily, and develop a more integrated perception of themselves as SLE

patients, who must live with the illness while still managing their daily lives. The success

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of mindfulness practice in our group may also be attributed to this intervention's unique

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mind-body combination, which is highly relevant for SLE patients. As already noted, SLE

entails both physical and psychological difficulties. It is also a stress-related illness. Thus,
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any psychotherapeutic intervention for SLE could highly benefit from taking into account

the complex inter-connectedness of mind and body among patients.

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We should, of course, mention several limitations of this case report. First, it is based on a
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selected sample of patients aged 60 or older, all with chronic SLE. As the specific

composition of psychotherapy groups is often crucial in their success or failure16, it would

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be interesting to see the effectiveness of this intervention among SLE patients from other

age groups and with different symptom chronicity. Second, this is a preliminary case
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report, and what we have presented here is not based on rigorous, carefully-controlled
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research. Therefore, randomized controlled trials of mindfulness-based therapy in SLE are

much needed, as was successfully done in other rheumatic conditions17. The absence of

such studies comprises a large gap in research, which should be bridged in the near future.
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Finally, the development of a specific mindfulness treatment protocol for SLE patients is

an important goal, particularly in this era of personalized medicine, which is characterized

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by an effort to identify more accurate, disorder-specific ways of treating the individual

patient18.

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Funding: We would like to acknowledge INBAR - Israeli Arthritis and Lupus Patients

Foundation for their support of this pilot project.

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The authors report no proprietary or commercial interest in any product mentioned or

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concept discussed in this article.

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