I love the findings in this latest investigation into lupus! It's so refreshing to see the issues that are oh-so-present in my daily life with lupus grouped and identified accurately, and then spelled out in black and white. And I particularly appreciate that the research produced two positive responses to life with lupus, particularly the concept of Gaining Resilience, which I have found to be invaluable in my 13 1/2 years as a lupite. Check out some of the snippets I've included below, but be sure to read the entire LFA article here. The entire article explains in detail the factors that contribute to each of these concepts. I'm sure you'll find yourself nodding along as you read the examples!
Adults With Lupus Found to Have Common Themes in Experiences
A recent review of lupus quality of life studies found five common themes that describe the experiences of adults living with lupus. Using a method called thematic synthesis, Dr. Allison Tong of the University of Sydney and her associates from Australia were able to group the responses of nearly 1,400 people from 46 studies into five concepts:
Societal stigma and indifference
Gaining resilience - (a positive!)
Treatment adherence - (another positive!)
related to factors that interfere with daily activities and mood. resulted from the uncertainty or emotional burden of lupus. developed when others trivialized the illness, when patients felt ostracized socially, or when family and friends became overprotective or intrusive.
was built on optimism acquired when patients accepted their limitations and developed positive attitudes to cope with their new reality. Emotional and physical support offered by family, friends and doctors also helped people with lupus to live a ‘normal life’. They felt more in control and empowered when they remained active and socially engaged. Being informed and involved about the impact of lupus, along with the mutual understanding of others who shared similar experiences of living with the disease, was found to be important to gaining resilience. improved when people believed the medications they were prescribed were having a positive effect on preserving health, while good rapport with doctors boosted adherence as a show of respect and trust.
The investigators conclude that education, psychosocial (offering social and emotional support) and self-care programs will help to improve the mental resilience of adults with lupus so they can develop better methods to cope with the disease, advocate for themselves, and increase their participation in activities of daily living. These factors will help people with lupus achieve better treatment and secure the best possible quality of life.