“Over the years, there have been times when my condition was unstable, but there is only so much I can control. All I can do is continue taking care of my body, ensuring sufficient rest, and seeking medical help when necessary.” Queenie, diagnosed with systemic lupus erythematosus at the age of 12, has learned that it is best not to fight against her own body.
As early as primary school, Queenie experienced symptoms such as skin rashes and joint pain. Systemic lupus erythematosus prevented her from being exposed to sunlight, and accompanied by joint pain, she was unable to do many things. While her classmates energetically participated in physical education classes, she could only sit on the covered playground. When the highly anticipated annual school sports day arrived, she could only return to school alone with her books. As her condition fluctuated, her body easily grew tired, and the high dosage of medication also had some impact on her appearance.
Even though her life in early secondary school was not ideal, Queenie often reminded herself to pay more attention to the beauty around her. She was grateful for the teachers who encouraged her to believe in herself during secondary school, as well as the care and understanding from her family and classmates. She was also glad that her condition stabilized in her later age, allowing her to participate in sports events and gradually experience the joys of youth, slowly returning to a normal student’s life. For patients like Queenie with systemic lupus erythematosus, sunlight may seem far away, but Queenie carries her own sunshine, grasping tightly onto the beauty of life and striving to co-exist with her illness.
While working full-time, Queenie also finds time to volunteer. One of her roles is being a peer leader in self-management programs. Having lived with the condition for many years, she has learned how to take care of her body and knows when to reduce stress and fatigue, allowing herself to rest when she feels tired.
Not only does Queenie accept and live with her illness, but she also doesn’t mind sharing her condition with others. “Having a disease is not my fault, regardless of how others react upon learning about my condition, I will still let others know when there is a need or when I’m feeling unwell.” Instead of worrying about the worsening of her condition or how others perceive her, Queenie believes that doing her best is enough.
