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!
Years ago, I had a cousin with endometriosis when it was less well-known than it is now. My parents asked my aunt how their daughter was doing and Auntie pulled out a photocopy from a book with information about endometriosis. At the time I thought it was weird but I get it now!
And, my mother in particular loved to tell me, "At least you don't have cancer! What if you had cancer???" Well...I've had friends with cancer who had tumors removed and they're fine and dandy while I still have diabetes. Not to make light of cancer, but diabetes isn't fun either.
For many years I have gotten LOTS of inaccurate, ill informed, and even mean remarks about diabetes. I am Type I and most people don't even know there are types. So, there are many misconceptions. Even health care professionals don't know much about types or diabetes in general. IT's BIZARRE.
Maybe, you can educate some people along the way and if not, try not to let them bring you down. Hang in there.
Hubby got a liver transplant, the HCV returned, as it always does, and he did 84 weeks of a brutal chemo regimen. That bought him a few years and now with Harvoni treatment, HCV is kind of a worry of the past. Even my DH's worst case genotype was knocked out by this miracle drug.
The things people tried to sell/tell/help us with ran the gamut from kind, but pointless to just plain stupid. One guy tried to sell us "magnets" to place on my husband's belly, to pull the toxins from his liver....wow, that one had us in stitches, trying to figure out. Essential oils, juices, shamanism cures, shakra alignments.....we finally just gave up.
People would ask about his health and I always reply "he is fine, thanks for asking", Anyone who knows us well enough KNOWS he is now HCV free and we're just very grateful for the people who stood by us and didn't flee for the hills.
I'm not saying people are stupid--just not well educated about many health related issues. I got so tired of having to "defend" our choice to stay "Western Medicine" in all this.
Grow a thick skin, I guess. I've been dealing with this for over 25 years (since his initial dx..).and I don't really talk about it to people. What's the point?
And sometimes those who have now feel they're experts and need to advise me how to handle things.
Usually I just say I'm late for a meeting or something and escape.
Which isn't really answering your question, but I sympathize, sometimes even family can be so dense you want to knock their heads together.