It is not uncommon at all for people not to understand our pain or anyone else's for that matter. It is not something physical that you can see. If we had gaping wounds with blood gushing everyone would know why that person is hurting.. My husband is very much aware of my pain but that does not make him understand it any better. He himself has CP in his legs from blood clots and poor circulation. He has not ever accepted his own pain, so no way he has accepted mine, lol. But, that does not mean he loves me any less either. On a decent day other than an oxygen tank and cane you may think I am ok. Never judge the book by its cover.
Guilty, oh yes I use to feel very guilty because I was the one that was responsible for most of the things around the house, because he was truly at times not able to help. I took care of him. So, when my health went south it all changed, I was unable to care for us both. However, I admit I am much better at helping someone else than myself. Guilt is normal, its another step we take with CP.
My children are grown. My daughter understands more than anyone connected to me. Then I have the family here at HW that I share my woes with, this is where I talk about what it going on. But, I try to hide it all from my children because I do not want them worrying over something they can't control. My son tries his best with me to the point he just gets on my nerves at times. He is one that yells don't bend over and pick that up, don't do this or don't do that. That gets on my nerves, I just told him one day, I am not an invalid and you are not going to make me feel like one either, He backed off, he realized he overstepped his bounds, lol. But they are both caring.
Remember the old saying "it takes one to know one", well that old saying applies really well to CP. The ones that really understand are the ones that live it every day.
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.