Answer Summary
Members rallied around the frustration of having a friend who expects full recovery from multiple myeloma, sharing that the 'you look fine'... Read more
Joy, You can educate the ignorant, but you can not fix stupid. You have to determine which group your friend is in.
When I go out to eat I also ask for extra napkins - specifically so I can set my silverware on one as I've seen tables cleaned with dirty clothes…….ugh!!
We often look better than we feel.
This is ultimately a disease where you “Can’t judge a book by its cover”.
Since they do not live with me - My own adult children think this is no big deal. 😔
People can't comprehend the "I'm in chemo/treatment until I die" thing. For them, life goes on as usual, so when they see us, they think we're back to normal too. I can't tell you how many times people say, "Are you still doing that?" Sheeeeesh. Yes, because it is just so much fun. We're either dead, or we're okay. Unless they have MM, they just don't get it.
After 8 years in treatment, people tell me I look great. When I tell them I’ve lost 30 lbs, down from 170 to 140 lbs, and I’ll them it’s all muscles I’ve lost, that I used to do weight training, and be muscular. Then I tell them the ongoing side effects, fatigue, light headedness, diarrhea, muscle and bone pains, weakness, unsteadiness (instability) lack of sleep, etc. I’ll tell them, I now have heart problems, and am in heart failure, with more medications, that make me feel crappy. At that point, they start to understand, it’s not about looks.