Posted 6/22/2013 6:54 PM (GMT 0)
It'll probably get a bit better once you have a diagnosis (incidentally, get a colonoscopy - it's the best test for diagnosing Crohn's). But not enough, unfortunately. Crohn's is what's informally termed as an invisible disease, so you can be knocking on death's door and people won't realise it from your appearance. Fifty years ago, weight loss would have been a visible clue but everybody is so desperate to be thin these days, looking anorexic is, if not seen as normal exactly, not seen as a cause for concern either.
People who are healthy don't get the fatigue, the discomfort/pain, and the being unwell. My solution was to never talk about it, but sometimes that would create a resentment at those would would moan for 15 minutes about a cold, for example. I was also in the position of not needing to explain myself: it's obviously a lot more difficult if other people are relying upon you, such as work colleagues.
Try explaining that Crohn's is a bowel disorder which does far more than make you go to the toilet a lot. It's a chronic inflammatory condition, and the inflammation has a range of destructive effects. (I could go into them, but I have a feeling people aren't gonna want to hear about fistulas, abscesses and strictures. However, inflammation can also cause fevers, joint pain, high platelet count (increased likelihood of blood clots) and anaemia in Crohn's.)
I would try to get the diagnosis first, though, before having a talk with friends and family.