skin disease

‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’

“My determination isn’t disabled, my fire isn’t disabled, but my body is. For a long time, this was hard to admit. I do my best to show up every day, but it’s not always enough. I can practically smell the resentment from my coworkers. My boss stopped believing me and asked for a ‘doctor’s note.’ Instead, I ended up hospitalized. ‘Is this good enough?’ I snarkily asked. I know I should keep my mouth shut, but I really can’t help myself. The struggle is REAL.”

‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

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