Living in blisters and pain

Assya is almost 15 years old and has junctional epidermolysis bullosa, an autosomal recessively inherited condition. A defect caused by gene mutations within the components of the skin allows tissue to separate and blisters to form whenever there is friction or trauma to an area. In many instances, the blistering is spontaneous.

Each day begins painstakingly unwrapping the bandages that have been protectively enveloping Assyas blisters for the past day. Stuck to the weeping skin beneath, the last layer is stripped off while she grits her teeth. As I try to imagine a well adhered plaster being ripped from a partial thickness burn, Im surprised she makes no sound or mention of pain. Its difficult to imagine what the experience of pain might be for someone who has been experiencing it almost continually since birth, and even Assya finds it hard to find a description that fits:

“I met a man once, who wanted me to try laughing gas for pain relief. He kept questioning me on whether I felt like I had been burnt everywhere, but I just burst out laughing in annoyance. I …