I wish I had seen this years ago! My lovely daughter suffers from a variety of invisible illnesses. All her friends and family need to read these! Thanks for sharing.

Very thoughtful and on the mark – same for “What NOT to say…”

– 58 year old female with cystic fibrosis (keep it hidden for the most part)

Hi Mary, Sometimes I am a bit slow to moderate comments or they get lost in my spam filter! I check spam for comments from time to time but the volume of spam comments is so great it’s hard to weed out the real ones. Sorry if it got lost in spam!

I could have written this! I am grateful my son (now 13) still a compassionate, loving person. My mother who is now 77 (cannot help me with anything) feels for me as far as being sick along with my sister in law who my mother lives with (she is a caregiver as a precession…perfect for my mom since I live two states away.) And a friend since our teens, we are now 50, who does care and does try, can catch herself at times realizing she does not understand. Otherwise, I was very social but slowly as I got sicker (had no idea was sick as I am) slowly harder to socialize. My soon to be ex is such an uncompassionate person I know I have ptsd from his “helpful” actions and energy. My own brother, whom is now well off with wife & child, would not even be in that position if I had not pulled him out of serious drug use besides talking him out of suicide and just sticking up for him as a kid….but now I am of no use to him.

Nope, in fact you’re EXACTLY right. Thanks for saying it!!

Wow. I Just burst into tears reading these comments, especially this one. Understanding the heart wrenching emptiness in most of these comments, makes me realize I’m actually in the same position and feel the same way. Most of the time, those with chronic pain spend so much energy minimizing or stuffing down how we feel on an hourly basis, that we lose connection with how we actually DO feel. Our lives and feelings are a constant cover up to even have any relationships, at all.
And although I feel devastated all over again because I tragically can relate, ironically, it makes the burden seem lighter and less sad because I’m NOT the only one going through this life sadness.
To all who have commented, THANK YOU for being honest and using your voice: you have miraculously made it acceptable for other to use their honestly and their voices too.
THANK YOU!!!!