Frequently, patients feel like they’re on a perpetual illness roller coaster. They can feel emotionally vulnerable, especially when their chronic illness is characterized by periods of flares and remission, resulting in heightened stress. Coping with the uncertainty of the future, disability, financial, and relationship challenges can compromise a patients’ physical, emotional, and spiritual well-being.8 Social workers use strategies to help patients and their families gain a sense of control over their changing life situation, using the relationships that they establish to help patients to regain a sense of hope. Social workers also help patients make behavioral changes that will sustain them throughout the lifetime of their illness.
Patients with chronic illnesses often report a sense of grief and loss, thus having to define a new identity for themselves after being diagnosed or experiencing profound life changes due to their illness. As patients move through stages of grief and loss, a social worker can help to facilitate their emotional needs, providing support, assessing safety, and determining if the treatment plan is being affected by the emotional well-being of the patient. In addition, the social worker can also act as a support to colleagues on the interdisciplinary team, providing a place to hold feelings, express some of the challenges that are inherent in working with a chronically ill population, and problem solve.
“At critical times in a rheumatology patient’s life, the social worker becomes the most important part of the healthcare team because they are uniquely able to integrate medical, financial, emotional, and practical issues in a manner that can quickly and effectively facilitate a patient and [his or her] family’s ability to navigate through a crisis and an increasingly insensitive and complex healthcare system. At other times, they are as important a part of the care of patients as the physicians,” says Stephen A. Paget, MD, physician-in-chief emeritus and rheumatology leadership chair at the Hospital for Special Surgery.
The Anchor of Culture
Several rheumatic illnesses, such as lupus, disproportionately affect women of color. Culture plays a major role in how we define, relate to, and treat illness. Culture can color a patient’s values about medicines and certain treatment modalities. The social worker on the team can often unearth this important information and explore its impacts on patient care and disease management. Often, the social work serves as the cross-cultural facilitator between team members and the patient, providing a cultural context that is extremely valuable and can affect care tremendously or derail the care plan altogether. Knowing patients’ cultural values helps the team work with them from a place of dignity and respect, acknowledging their cultural norms while integrating western scientific treatment modalities, co-creating a more realistic care plan.
