How do I deal with uneducated and ignorant people?

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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 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!


My mom lost her eyesight to macular degeneration, a condition her mother also suffered from to a lesser degree. Despite living in a small town where people knew her family history and who had been told time and time again why she couldn't see we were repeatedly asked why she didn't "get it fixed" and if mom was "too scared to have the operation". Sigh. And then there were the people who would come up to her when she was out in public without introducing themselves, it almost seemed like it was a game to see if she could guess correctly who they were. She carried a white cane for pete's sakes, use your head people!

Which isn't really answering your question, but I sympathize, sometimes even family can be so dense you want to knock their heads together.
I've been through that, still going through that. I've tried various suggestions, such as reading up on a certain medical aspect so the person doesn't drone on about some issue or another, but in the long run, if they haven't walked in a caregiver's shoes, they oftentimes just can't conceive of what we're experiencing.

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.
Gosh--when my DH was dxed with Primary Liver Cancer (due to 40 years of living with Hepatitis C)..the things people would say to us were astounding. We were trying to be open and honest about the HCV, and we TRIED to educate people about it--but met with a wall of ignorance and prejudice that, to this day, I don't understand. Lost a LOT of "friends" who were so terrified they'd catch it. We had 5 kids together and I didn't contract it, and none of the kids did. Trust me, this is one hard disease to get!!

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, 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?

Only one time I had to snap back at a co-worker. I was grumbling about having to drive my parents all over hill and dale. The co-worker then reminded me that my parents drove me when I was a child. Ok, she was right "BUT my parents weren't in their late 60's when I was a child... big difference" :P
I no longer try to educate, especially when they start out with how great Michael J Fox is doing. That’s all they want to know about PD. I use a short response like thanking them for their concern and that we have it covered, or yes, I’ll look into that. Then I either change the subject or disengage from the conversation.
There is nothing you can do. Smile and leave, don't frustrate yourself.
I share your frustration. I sometimes pray for patience. It is a virtue, so, I try not to take things to heart. AND, if these people who are continuing to be uninformed, are your family members and close friends, I'd get some links that provide solid info on your dad's situation and either text them to them or hand them the links in person. Just politely say, here's a great link that may help. It helped me. I thought you might find it interesting.

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.
Sunnygirl, I feel your pain! My mother "read" that you get diabetes from being fat. She missed the part where I was a rapidly shrinking size 1 at diagnosis, I guess. Throw in the fact that I got type 1 in my 30's...even my newest nurse practitioner tested me to make sure I wasn't producing my own insulin. "You're definitely type 1." Yeah, that's what I told you when I came through the door...

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.
Mentally, "slap them silly," - then grin about it and chalk it up to their stupidity. I have told people, "Thank God you don't know what I am going through and pray you never have to learn."

I have had so many people tell me not to pick Ray up from the floor. None of them has offered to help or even had an idea of how else to get him off the floor.

Ignorance might be bliss - but not when someone "shares" their ignorance with you.

Bless you for what you are doing.
My brother fits in this catagory, he is 80, Mother is 100. He is completely ignorant about her intelligence, vitality, love of life. Without communication with her or myself, he is a know it all, plan it all using vile means to control outcomes that have been harmful to her and myself, her 24 x 7 caregiver and POA of Health Care. I am so sick of this. He doesn't like visiting her, being with older people (he is one of them). He avoids her and myself.  He lives 8 states away and doesn't call or visit more than 1/2 hr a year. He is a real know it all.  He makes trouble.  What comes around goes around. Remember these people will reach old age themselves. It is sad that the best these people can offer is ignorance instead of encouragement and Love. Are they jealous that they can't be where you are, caring for a Loved One. They are the ones missing out. I just spent $900 on an attorney to have a phone conference with brother which I am hoping got through to him that Mother has made up her mind to be with me and that her wishes count.  The Elder Care Attorney supports her position.  That is better than my telling brother that this is what mother wants,  live with it. 

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