About
the patient.
DIAGNOSED AT 16 / 2017
I was diagnosed with systemic lupus erythematosus (SLE) in the summer of 2017 at the age of 16, after experiencing a severe health deterioration in London after moving here to study. I flew back home to Malaysia, thinking I was only going to get a regular checkup at the hospital. I had planned on coming back to London - but life doesn't always go as planned.
Instead, I spent months in hospital. There were periods when speaking and walking became difficult. I used a wheelchair and depended on my family for everyday care.
Recovering meant relearning what my body could manage while life continued around me, and I eventually returned to London.
Living with lupus is not a single event. It is fatigue, pain, uncertainty, appointments, tests, and the constant negotiation between what I want to do and what my body will allow.
These artworks are a way of giving a visible form to experiences that are often hidden. The medications, the portraits and the imagined clinical environments all come from living inside a body that needs care while still belonging to me.
— the patient / daughter.io