72 hours with SLE
72 hours spent simulating the symptoms of SLE. This creative empathy exercise allowed me to understand firsthand what it might be like to live just three days with Lupus. An interesting experiement, I noted down some of the most common symptoms experienced by my mom, and had a partner text me new symptoms randomly over the 72 hour period. I then simulated the symptoms to the best of my ability for several hours at a time.
Since I worked at a physiotherapy clinic, I was able to utilize several interesting tools to help simulate the experience; ice packs were used for hand and foot coldness & numbness; I used a T.E.N.S (Transcutaneous Electrical Nerve Stimulation) tool on burst and low modes to simulate numbness and muscle spasm/pain; kinesiology tape was used for joint stiffness and restriction/pain; hand and wrist weights were used to simulate lead-blanket fatigue. The experienced certainly changed my perspective on what it is like to have a hidden disability or illness as opposed to a visible one. People on the bus or street didn’t seem to have any patience or sympathy with my slow, uncoordinated or pained movements, since I looked healthy. I also found myself constantly distracted and withdrawn.