“Do Housework? Fulfill Social Obligations? Or Go to Appointments?”
I ask myself these questions daily. Living with my chronic illnesses, like brain tumors, metabolic disorder, hypothyroidism, or diabetes insipidus, or with rare genetic conditions, like Ehlers Danlos Syndrome, dwarfism, or Madelung deformity requires constant energy negotiations as well as careful activity planning. I feel like each illness or syndrome is a ball and I …
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