Oh how I can identify with the "well, you don't LOOK sick" comments!!! I think it's universal. The fact is NOBODY KNOWS WHAT YOU ARE GOING THROUGH! This is YOUR journey. Imagine if those telling you that you shouldn't be on disability had this horrible disease. Do you think they would be singing the same song? I doubt it!
Just this morning I have been reminded of something I'd like to share. It's amazing how quickly we lose sight of the obvious. I'm on disability. I am so blessed that I was approved the first time (had a lawyer but he didn't even get anything because it happened before there was any back pay due). While I have not had surgery because of Crohn's, I've had my own battles. I'm convinced Humira got me in remission! I'm also convinced certain cancers were beginning to thrive due to it and had to discontinue using it...but that's another story for another time. So now I realize I don't have constant diarrhea. It's gone! I went to the doctor yesterday and he told me I was in remission most likely.
I feel good (in spite of the fact that since my diagnosis I've now been diagnosed with MS, degenerative disk disease, a herniated thoracic disk, torn meniscuses in both knees, and probably a few more diseases, lol...I have to laugh because I can't change it). I felt guilty. I wasn't hurting (from Crohn's). Can I go back to work (I'm 61 years old, btw)? Should I? Then it hit me. When I stopped working my whole demeanor changed, and all my friends and family noticed it. My stress level came down so much it changed my life. And we are all aware of how stress and Crohn's go together. But somehow I forgot that element. If I DID go back, I'd be under stress all over again. Then, as it happens in the United States, if (and when) I have a flare up, I'd have to be out of work a year to be eligible for disability again. I cannot survive that. It's difficult enough living on social security disability, albeit I am so thankful to God for it. But don't lose sight of the mental stress. As all the others have so wisely posted, only you know your body. Be kind to yourself. Goodness knows, the rest of the world won't be as kind! My best wishes for you.