Hey all, I'd love some tips on how people deal with what I have come to call 'the uninitiated'. People who have never had to care for someone with a longterm, serious illness and who can unintentionally be very hurtful or insensitive. For me as a young adult I come up against the stereotype of 'grown child living in parents basement' pretty often and you'd be amazed at how people change their tune when I tell them I remained at home after university to help out my father, who is disabled. Suddenly I'm "Such a Good Daughter" where 2 minutes before I was "Freeloading isn't it shameful!" It just shows how isolated people are from the very idea of care-giving, they don't even consider it! It's also so hard to explain why certain activities won't work, without over-sharing my fathers' healthcare needs. Yes we would LOVE to accept the invitation to stay over with the rest of the family for Christmas Holiday...in their non-accessible house with non-accessible bathrooms. Yes water aerobics is a FANTASTIC source of exercise...for people who aren't incontinent. I've had to tell family (politely, when my father isn't around) to please, for the Love Of God, stop asking "when does your doctor say you'll get better"...MS is progressive and he will get worse! Having that brought up every visit by well-meaning friends/family was very disheartening for him. How is it that those who are so loving can't spare the time to google his condition??? Personal favorite: people assuming he has cancer. Runner up: people then commenting that "oh that's good!" when they learn he 'only' has MS. Sheesh. I'd love to hear about some of the situations you've been in and how did you handle 'uninitiated' remarks? I'm a very calm person so getting upset with people is rare, but it's so draining to educate people on such a tender topic over and over!
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