Many group members share that prior to participating in a group, they had never before met another person with rheumatoid arthritis, lupus, spondyloarthritis or myositis. Newly diagnosed members often comment on the profound experience of learning from veteran members, who share their personal journeys and strategies for coping. Sarah, a retired 72-year-old human resources manager with lupus, noted, “I was terrified and feeling isolated when I first came to group. Now, I can give new members the support I received.”
Theodore R. Fields, MD, attending physician at HSS and professor of clinical medicine at Weill Cornell Medical College, offers a clinician’s perspective: “I highly recommend groups to patients who are considering them. I feel they provide an important service for our patients that is very hard for them to get in any other way. For instance, patients have been especially grateful to speak with other patients about their fatigue, since it is invisible to their spouses, partners and friends, yet is very real and challenging for them.”
In group, confidentiality and nonjudgmental active listening are important guidelines. Ideally, these and other group guidelines create a framework for safety, shared goals, support and cohesiveness.6
The HSS group is facilitated by trained professionals who gently guide patient-driven discussion and keep the process on track. Many of our patients come to group with fears about medications and potential side effects. They welcome a safe forum where they can process the flood of emotions, including depression, fear and anxiety that can be part of living with a chronic illness. Equally important, lectures by rheumatologists, other members of the interdisciplinary team and outside experts provide a rationale and contextualization for treatment.
Through participation in group, patients develop self-management strategies, including tools to enhance communication and partnering with the healthcare team, coping with flares and medication side effects and coping with the emotional impact of living with a chronic rheumatologic illness. Sharing this experience through the lens of peers helps to normalize and validate an individual’s experience, and highlight alternative approaches and opportunities for modeling adaptive behaviors for self-management. Challenging cognitive distortions, such as having an “all or nothing” or catastrophic understanding of the side effects of treatment and one’s future, may also help.
Considering Patient & Community Needs
Before launching a group, it is necessary to consider patient and community needs. EULAR recommendations for education and other interventions “aimed at coping with pain, disability, maintenance of ability to work and social participation” provide a conceptual framework for these interventions.1
