Role of Lupus Patient Support
By Irene Blanco, MD, MS
Professor of Medicine-Rheumatology
co-Director of the Clinical Research Ethics & Equity Consultative Service (CREEC)
Lupus can have long-term consequences on patients’ lives as it typically affects people when they are younger and in what are their most productive years work- and school-wise. This can then affect how long a patient goes to school or work and if they can work full-time or part-time, if at all. Therefore, lupus has a major impact on a patient’s career and earning potential. While there are multiple reasons for a lupus patient to face physical challenges, it also has a dramatic impact on a patient’s personal life and social interactions.
While several studies show that high levels of social support and disease self-management are associated with patients doing better in terms of their lupus, many patients report an overall sense of poor levels of support. When Mazzoni et al. analyzed patient interviews, they found that often patient support was not helpful. Support could range from feeling “oppressive”, where family and friends worried too much about a patient, to the opposite extreme where patients would get hurtful advice like: “Don’t cry go to the cinema!” Loved ones can sometimes not realize that a patient is sick, or can accuse a patient of faking illness because they cannot visually see that the patient is in a lupus flare. This general lack of lupus awareness in the community can be alienating for patients and creates a sense of loneliness.
In addition, relationships with the medical community can also be challenging for lupus patients. Patients have reported that providers often seem more concerned with data, like blood pressure and lab tests instead of addressing what the patient is feeling and what is most impactful to them. This can lead to a difference in priorities between patients and providers for what is addressed in a clinic visit leaving patients feeling unheard and dismissed. As Sloan et al. show, it is important for providers to acknowledge how lupus impacts a patient’s quality of life outside of lab data. They must approach each visit with empathy and a willingness to address the patient’s needs in order to gain their trust.
Patients can find tremendous support in groups and in online forums where they can find community with other lupus patients. Support groups, coaching and peer mentoring can be vital resources. They educate patients and their families/loved ones on various important lupus-related topics while introducing them to a community of patients. This helps to address the need for social support that is reported by patients. Structured programs that teach coping strategies, and self-efficacy skills can not only give patients vital information, but have also been shown to improve depression, relaxation and coping skills in addition to even increasing the amount of exercise done by patients. Therefore, a structured program can target and impact various effects of lupus that impact a patient’s quality of life.
Having opportunities for both in-person and on-line/telephone peer mentoring allows the rheumatology community flexible ways to address the support needs of lupus patients. The Lupus Society of Illinois (LSI) is a wonderful resource for lupus patients and their loved ones. By hosting a range of English and Spanish-speaking support groups, in addition to one-on-one peer support, the LSI serves as a critical life-line for our lupus community. These resources, in addition to community events and lecture series, help to engage both patients and their loved ones in learning about lupus and how to manage it. To learn more details about all of the services provided by the LSI please go to: www.lupusil.org.