Life can be unpredictable, and I have learned from my patients that living with lupus can make life even more unpredictable. No two of my lupus patients experience the same journey or report the same symptoms day-to-day. Whether you are a person living with lupus or you care for a person living with lupus, you play a vital role in managing both the expected and unexpected challenges associated with this journey. Recently, I had the opportunity to speak with a group of individuals living with lupus. I was struck by their resilience and their optimism as they recounted their experiences receiving a lupus diagnosis and living with the disease. I was especially moved by their description of how living with lupus has taught them patience and empathy, and empowered them to advocate for themselves and for others.
What is self-management?
Self-Management is a person’s continuous engagement in his/her healthcare to understand the illness, participate in the determination of a treatment plan, understand and adhere to the treatment plan, and feel empowered to discuss ongoing symptoms and challenges with health care providers.
How can I learn about self-management?
In honor of Lupus Awareness Month, the American College of Rheumatology (ACR) would like to highlight the following four-part series of online self-management resources intended to aid in the understanding of lupus self-management and what it means for people living with lupus and their supporters. These self-management resources were curated by a group of health care professionals and by people living with lupus.
- The Overview of Lupus Self-Management provides resources to help with understanding the everyday experience of living with lupus.
- Use the resources provided in Self-Managing Your Mental and Physical Health to learn ways to care for your mental and physical health through the development of coping skills; management of stress, fatigue, pain; and more.
- See tips on how to create a lupus journal, prepare for appointments, communicate with your doctor and develop goals and action plans in Tracking Your Health and Communicating with Your Doctors.
- Access a collection of Self-Management Programs and Support Systems in Your Community with tips on communicating with your family, friends, and co-workers about lupus, as well as how to find support groups, programs, and systems.
Always remember your healthcare team is your first resource and these additional tools are intended to supplement this care and help you to live a healthy life with lupus.
We would appreciate your feedback as to whether you found these resources to be helpful and any suggestions for additional information that you would like to see. Please send us your feedback.
Visit lupusinitiative.org to access additional lupus educational resources for providers, educators, students, and people living with lupus. And – join the ACR Simple Tasks and The Lupus Initiative for a #RheumChat on May 30 at 1:00 PM ET. We will be discussing lupus self-management with Irene Blanco, MD of Albert Einstein College of Medicine and Montefiore Medical Center in New York City. Use the hashtags #RheumChat and #ACRFightsLupus to follow along and interact.
By Candace H. Feldman, MD, ScD; Assistant Professor of Medicine at Brigham and Women’s Hospital and Harvard Medical School