Research of the service needs for Systemic Lupus Erythematosus patients in Hong Kong

Abstract

I am a patient with systemic lupus erythematosus (SLE). Unlike typical cases where patients have facial rashes, my immune system attacks my own platelets and white blood cells, requiring long-term medication to suppress them. From diagnosis to treatment, I have found every stage to be extremely challenging. This is an invisible illness; despite having a high risk of hemorrhagic stroke due to my blood indices, my appearance remains unaffected. I frequently need to take leave for medical appointments, facing misunderstandings from superiors or colleagues. Additionally, due to medication side effects, I experience rapid weight gain, changes in appearance, mood swings, and insomnia. Anxiety disorder developed during my illness. At the peak of severity, I received over ten serum protein injections daily in the hospital and underwent expensive targeted therapy. Doctors mentioned the possibility of pancreatic resection if the condition didn't improve. I am grateful that my condition has stabilized to some extent now. Through this graduation thesis, I am thankful for the opportunity to understand the needs of SLE patients in Hong Kong, letting me and fellow sufferers feel less lonely, as everyone's experiences, though unique, bear similarities. The journey has been incredibly 2 difficult, involving struggles physically, and mentally, in the workplace, and personal relationships. During interviews, I often found solace in realizing that my thoughts were not unique and that others shared similar concerns. If this article can raise awareness about SLE and promote empathy and understanding towards patients, it would achieve my self-realization and application of learning in this social work bachelor's program.