Please Still Invite Us
As with any chronic illness, inflammatory bowel disease is very unpredictable in nature. It is difficult to plan ahead because you just never know how you are going to be feeling that day. People who suffer from Crohn’s Disease or ulcerative colitis often have to cancel plans if they are not feeling well. Hospital admissions, emergency room visits, urgent doctor appointments, tests, procedures, surgeries, and so many other things come up in the life of a person who suffers from IBD that planning is usually not in the cards.
That is one of the most infuriating things for me. I like being in control of my life and IBD has made that impossible. I find comfort in plans, organization and routine. Again, living with IBD makes that pretty impossible. I do work hard not to cancel plans with others unless I absolutely have to; which happens incredibly frequently. It does depend who the plans are with though. If I am supposed to be getting together with someone who is sympathetic and understands that I am not doing particularly well, I probably would be more inclined to spend time with that person as opposed to canceling and then being riddled with guilt.
One of the things I hear people in the IBD community talk about is how some of the people in their life seem to forget about them once they have had to cancel or reschedule numerous times. Or, if they have been in the hospital for a while, recovering from surgery, or just need to take some time for themselves to sort through all that has been/is going on with their body. When you are constantly declining offers to hang out with someone or be a part of things, it is only natural for a person to wonder if you actually want to spend time with them.
It is hard for many people to understand that you want more than anything to be out and about, living life, and keeping every plan made but that your disease and body won’t allow it some of the time.
For anyone reading this who has a loved one with either Crohn’s Disease or ulcerative colitis:
Please know that even if we decline an offer to get together, it still means the world to us to be invited. It lets us know that you care and want to be in our company, even if we can’t always make it or if having to cancel at the last minute puts you in a bind on occasion. We never mean to be rude and I hope you know we are just trying to do whatever we can to balance a social life/friendship with you, and what is best for us.
Sometimes if you throw something out there that is a bit more low key, I may want to do that. But if I don’t, please know it is because I am really not feeling well. It is also appreciated when I know you understand and can let it go after I have made it clear that the plans aren’t able to happen. Most importantly, though, none of this has anything to do with you and I hope you won’t stop being in my life.
Do you keep a food diary to help manage symptoms?