Imagine if everything you did, and everywhere you go, is ruled by a slew of limits and need for modification. Imagine being practically "allergic" to life. It's a very hard way to live. It's exhausting, it's daunting. But in spite, for some, this is life.
This young woman lives with Mast Cell Activation, a common EDS co-morbid, but occurs without EDS too, which is (other than gastroparesis) a reason why many EDSers end up on feeding tubes.