Hi Joy- I’m also in the US, in Wisconsin about an hour east of the Twin Cities. I am 54 and was diagnosed 15 years ago. Currently I get along fine but recently unemployed and looking for a job…and you’re right. Family doesn’t really get it…husband thinks I should be able to change my diet and exercise my way out of this…as he basically did with his UC and look what Terry Wahl did..right…that wasn’t all diet honey…how about estim treatment and the chemo… ;-0
And trying to explain fatigue which is a slippery beast…he says to exercise more to build up my stamina or to eat right so I don’t have it. OK, honey, I’ll go to the gym and ask them for a workout for my nervous system…huh? we work with the muscular system ;-0 but my PT actually has a phD and has studied issues with the nervous system a lot so is a good resource and comes up with good challenges for me weekly.
So- yes – they don’t really always get it. This group does 😉 vent here and ask your questions. Little magnifying glass in the upper left helps me search for previously discussed topics and icons in the upper right can help with searches on individuals and comments on previous posts or direct messages. Lots of good support on this site 😉