Something tells me this thread is going to get a lot of responses...
Appreciating that is hard to see our illness, unless you have a massive hernia or pouch and a bit of an exhibitionist streak; people assess by appearance first, the unfair onus is on us to prove our point.
The problem is, we don't want to -- it's enough to live it, right? On a good day we'd rather forget about it and present as "normal," only a good day can flip fast. It's enough to be sick and the energy required to prove the point is almost overwhelming.
My own family pretty much abandoned me, because they thought I was faking. Ya, that didn't help me at all.
I was lucky I had friends, some of whom got it more than others. The one's who really didn't get it I simply let slip away, but there were others who I didn't care if they got it or not, I was who I was and let them be.
I was full of insecurity, some of that caused by the Crohn's but not all. So I didn't feel confident in informing others what I was living with for a very long time. In that way I was my own worst enemy.
For those you want to understand, find a way to break it down. Start with the facts, it an auto-immune disease that has no known cause or cure, with treatments that only help 2/3's of flares, not all drugs work for all, nor is a drug guaranteed to continue to work as it once did. This is not because I don't eat well, I don't eat well because of the disease.
Try the daily facts: here's what food does to me; here's what running to the bathroom a million times a day does to me; this is why it's like for me to have NO energy-- yes I'm going to cancel at the last minute more often that I want to, and guess what, that sucks for me! Be prepared to repeat yourself. Show your suffering as often as you can. You'll see soon enough who get's it and who doesn't.
I got to the point with one of my sisters where I repeatedly said, "I wish you would understand, this is the disease, not me. I'd much rather be ... eating, going out, having fun, working..." Uh, she never got it... sigh.
Here's another thing, people get scared when they feel helpless, as helpless as we feel our friends and family do too. When they feel there's nothing they can do to help us, and feel useless, some may even blame you for those feelings. They are not your fault.
Too few figure out that 90% of being helpful in a helpless situation is just being there. Give them practical jobs, bring me soup, help me with my chores, drive me here. Show your appreciation and help them out in other ways, when you can.
Purge the really judgmental, they can't and won't be helpful and they suck what energy you do have away.
Know your limits, they will change, a lot, and don't be afraid to assert yourself with them.
I also suggest you find a good therapist, some one with and MD background so they understand your medical problems. This is a valuable resource.
Oh and see how you can arrange getting out by knowing where the bathrooms are. It's a bit of challenge, getting rides helps too, but you don't want to let yourself too isolated. Just say in advance, I really want to get out, but I'm also not feeling too well (obviously not when your cramping). I may be low energy, but I'd like to spend some time with you; yes, I'd love to join you for dinner, here's what I can't eat or at a restaurant, I might not eat much (this one really freaks others out) but I'd love the company; or, I'd like to go to a movie, but I'll need an aisle seat and I may need to go home straight after.. stuff like that. A heads up informs and might stop the stupid instant reactions... might. See how that goes.
I'm very matter of fact about having CD. Recently married, I get from some of my new family,
"Why do you talk about this? It's so negative." My response is, "No, I'm not being negative. I live with a chronic illness, it's a part of my life. Because you can't see it, I feel a greater need to let you know where I'm at. I am no more ashamed of having Crohns than I am of dying my hair. I realize this conversation makes you uncomfortable, but I'm pretty sure your discomfort will pass, mine will come and go for the rest of my life."
You can always remind them that all of us poop, though some do it with great frequency and pain, and some do it differently (like in a bag).
It sucks that the burden of proof is on us, and it's in large part because we don't get the press of MS or Cancer or Heart Disease.. sigh.
Hang in there, let us know how things go...
(((( BEST ))))
PS. I'm really curious to see how others respond to this situation...
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.