I can't imagine what you go through. My daughter is a college student and I can imagine that your friends are more interested in what's going on in their social lives than in why one of their friends is always tired. I'm going to talk to my daughter (a junior) about this and see if she has any insight. Even some of my best friends who know I've been taking high doses of prednisone and who hear from my husband how sick I've been, and who, as parents and sometimes grandparents, should be mature enough to understand chronic illness, still pressure me to get out more. They seem to think that (like Okie's brother and SIL) if I got out more I'd feel better. I just use my sense of humor and tell them that I'm just not as tough as they are, or that I've been busy with my boyfriends (they know how much my DH and I adore each other) or some such silly thing. I find that if I get defensive or try too hard to explain they just roll their eyes or don't understand. This is my personal journey and I try to keep it to myself. My dearest and closest friends do understand and as you get older, yours will too.
But I hurt for you for having to lose out on much of your young years and your college years. I wish I had some magic words for you, but all I can say is like the rest of us, live one day at a time and make the most of each day. Today is all we have.
I hope some of the young people on this forum will see your post and share their experiences with you.
((((((Hugs and prayers))))))
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin