I brought this over from your first thread to keep this thread going. I agree that losing family and friends is an unfortunate reality that we experience once we've had a serious illness. That or they just don't understand or won't understand the fact that we are not bouncing back to our old selves right away, if ever. Hubby and I are on our fourth year of chronic pain and illness and one family member asks weekly " so when are you gonna get over this??"

It never fails that my Tos is the worst around the holidays and I miss out on so many get togethers and events. No one understands how I can "look so great, look so healthy" in the summer and then barely be able to move when it is damp and cold.

And then if we do manage to make it to something they don't understand why I still can't pass the food, or reach for a gift to pass around to show everyone, or even opening presents... Hubby has to do that for me. When they see him fill my plate, cut my food etc. etc. they act like I'm just trying to get attention.

And poor hubby, one day he's improving and the next he's having a reaction to his meds. in his pump and is swelling in the extremeties and unable to think clearly.

I think it's true that people don't know how to react, even our middle son sometimes avoids us, and he wants to be a doctor..? That one I don't understand. Is it fear of losing his Dad?? (Hubby's son)

It is painful Tam and everyone. It's heartbreaking.

We've tried sending the "spoons" story to everyone; no response, we sent some of the threads and articles Tam mentioned from the old BT and they also didn't seem to make the point.

We have even taken the direct approach and said we hurt, we miss you, come see us, and for a while things are better and then it's back to the same old routine.

One of my oldest and dearest friends let it slip (before my surgery a year ago) that she went to the mall to shop and almost called to see if I wanted to go but didn't bother because I am always sick. I asked her to call me in the future just in case and let me at least have the option of telling her if I'm well enough to go because I am lonely and isolated at home all the time. That's the last I heard from her.

So I don't have any suggestions to offer, just looking for someone elses.

Anyone??

G ~