I recently came across a young lady posting on You Tube who is tired of being brave. She berates those who approach her in public to tell her she is “so brave” to deal with her disability the way she does. Her name is Claire Webber. She continues
No pedestals please
I know you’re ready to put me on a pedestal for daring to exist with an uncooperative body, but I’m too exhausted to climb up there.
See, when you think I’m “inspiring,” that makes it seem like I can’t be “crabby” or “depressed” or “watching Netflix for five-and-a-half hours on a Monday night.” That makes it seem like I’d better be out training for a marathon, washing wildlife in an estuary after an oil spill or parallel parking in a big city. That makes it seem like I’d better be “inspiring,” or I’m being a bad disabled person.
She has persistent painful ulcers
BTW Claire has peristomal pyoderma gangrenosum (PPG) a condition that causes large, painful ulcers to form. A Google search reveals the following confusing medical terms:
PPG is an unusual neutrophilic dermatosis characterized by painful, necrotic ulcerations occurring in the area surrounding an abdominal stoma. It typically affects young to middle-aged adults, with a slight female predominance. The underlying etiology for PPG remains enigmatic but aberrant immune response to injury may play a pivotal role.
Don’t you just love it when medical people throw terms necrotic ulcerations at you? I think that means that one with this problem gets bad sores after a wound or an operation on your abdomen and they don’t heal —and those sores hurt really, really bad. Evidently Claire has this disease and it will not go away! She has to deal with it every day.
My wife has postherpetic neuralgia
I can relate because my wife has PHN—postherpetic neuralgia. That’s a nerve problem caused by the herpes virus—the kind that originally caused chicken pox, then hung around to pop up again to cause shingles. For most people PHN goes away in a month or two, but for a minority (often those 60+ years old) it persists. In my wife’s case it has become chronic. She is about to “celebrate” the third anniversary of the condition. We have not been able to find a cure. So the best she can do is to take pills that help to minimize the persistent pain caused by damaged nerves.
But both are first interesting women. So treat them that way!
Both Claire and my wife do not want to be characterized by their illness, as if that is who they are ! And they grow tired of being asked how they are doing, being pitied and told how brave they are for dealing with it. They are brave indeed, but that is not who they are. They are first and foremost women with interests, marriages, family, likes and dislikes and a lot to contribute if you will but take the time to get to know them.