i was in bed xmas eve and xmas day with one of the worst flares that I have ever had. i had to cancel driving an hour to see cousins. when i called to say that i was ill, they were very frosty. i have heard nothing since, even though it was obvious that i was spending the holiday alone, with no-one to help me out should i need it. i heard thru the grapevine "italian family variety" that they had the same opinion of me as your brother does of you. who would choose this? to be feeling horrible on xmas and to then have to spend it alone? i just don't get some people. it is sad that a bunch of relative strangers on the internet are acting in a more caring and supportive fashion than our own flesh and blood.
That is hard to imagine.
I have not had to face that at all, but maybe that is because I have gone through some major physical changes that are very hard to ignore (loss of over 100 pounds and then surgery this year) I have met several folks with crohns who appear on the outside very healthy but I know suffer a great deal from the disease.
I just have to live with the hope that all of the help and support I get would be the same if all I had to support my illness was my word and not the physical changes. You never wish this on anyone....but if only for a day some of the folks we know could experience what we already know.
Navy, Now I know why we were posting in the middle of the night over the holidays. My husband is/was Mr Mom, and I love and respect him for that. My oldest Daughter (who has never had children) was talking with her new step-child this week and told her " See how my Dad is, this is why I am a great parent". Now I know how Dad's feel! As a parent who when she was a child `nearly passed out at my job, then spent 9 days in the hospital life threatened still with no answers for fourteen more years, it was shocking to find out that she gained no parenting skills from me. This is painful to me, I am one of he people who "doesn't look sick", but feel my husband could have done much more. I try to have understanding for the fact that he was never an outgoing person, and this was more of a factor in his not working than his illness was. I was unable to get any disability for him for many years-they just told him to go back to work. After to much time passed to receive any social security, they finally approved him for SSI, I am not sure if it was awarded on mental issues or physical ones. He thinks mental, because they made me his payee. I just try and remember "he didn't look sick" and always give him the benefit of the doubt, but I never once saw him push himself the way many Mothers do on a daily basis.
I often wonder if my "Mental Defect" were not being a workaholic who refused to take a day off and took to many NSAIDS for joint pain to keep going (someone had to feed them), would I have ever even had Crohn's or would I still be in "remission" with unspecified autoimmune disorder. I don't know about you but my other mental defect was often dropping everything or climbing out of bed in the middle of the night help a friend, or my children and their friends.**** me for caring so much, no wonder he is the parenting example.
Thanks for letting me vent, now it is plain to see why we get more compassion "from strangers we never met", it is hard to put yourself in others shoes. It seems most Crohnies try to take up the slack in the family unit, until we just can't any longer then they see us as failures who "always did it before".
I have a dear friend at work who is from an Italian family of beautiful women, who are rather traditional, and somewhat critical of her. She told me that every day she prays she never suffers from a autoimmune illness, like myself and many of our customers because she feels they would just not "get it". She is a wonderful young woman and I can't imagine how they find so much fault in a child they raised so well. I just think the old ways were to find fault and point it out in an effort to help the loved one better themselves, and in her case there seems to be a little jealousy involved.. This is also common in the large Mexican family I married into 35years ago as well. It seemed quite mean to me, but there is in reality so much love.
Post Edited (Margie11) : 12/28/2008 12:29:30 PM (GMT-7)
It is frustrating for some of us to have our own family not "understand" the disease. I've tried very hard to make my parents understand and they just won't. They think because I look fine and seem to act fine, I'm cured. I'm pregnant right now and doing really well. My grandma thinks that after I deliver the baby "the disease will correct itself". (Her exact words.) I'm not sure why people just don't get it even when you explain time and time again. On the other hand, my in-laws totally understand what is going on. They've read up on Crohn's and know just about everything there is to know about it. They are very supportive of me. As is my husband.
Thank heavens for this forum and for people who do understand us!!!