Anyone else feel this way?

I struggle with telling people how I am really doing. Are they really asking how I'm doing or just making conversation? I default to telling them I'm fine or doing good, but there are times when I need to tell people the reality. I'm self conscious about being negative. I want to tell them what they want to hear, or spare their feelings. I think I over compensate with the positive, and then later people are surprised to hear I'm still having issues. The keep everything private approach works fine until:

1.friends want to do something that I can't do in my present state of health (camping, canoeing, hiking, anything strenuous)

2.family wants me to help with something and I don't have the energy or can't be away from a bathroom that long

3. sick time at work, or not wanting to travel to Mexico for work, or not wanting to work overtime.

Surely others out there have gone through the same thing?

Constantly Senor,
I begged hubby not to answer, 'she is fine, healed and healthy' because I felt jinxed every time he did...People don't understand that a picnic is a nightmare to me..no public toilets in the parks, no place to run and hide. The recent roadtrip that hubby and I took put me into a tizzy of panic before we left...fear of being sick out of town, hospitals not knowing my condition etc....friends wanting to go out but wanting me to take public transport to meet them (help!)...going back to work at 1.5hr each way using transport etc...
And of course the eternal, 'you are healed now so what's the problem'...people can not understand. Or don't want to. They can't get their brains around it. It is just easier for them to think that all is fine and you are just lazy, boring or anti-social. I have become a shut-in without transportation..I go out when picked up but not otherwise. I no longer call my friends because I say no to all of their invitations...and I am tired of explaining to them that no, there is no cure, I am not just like them and yes, there can be problems/complications etc.
Or I just say that I am fine, but oh, too busy to go out.
Sharon

It is so sad and annoying that a person with UC has to live like this! I get irritated because when people ask my daughter how she is doing she says "GREAT!" with a huge smile. I know she wants to be normal and be doing great but reality is she is not and wont be for a long time. This is a hard pill to swallow. I think as a teenager she just doesn't want to get into it and she for sure doesn't want others feeling sorry for her.

I usually tell a modified version of the truth and find that most people are pretty receptive. They may not fully understand and I don't expect them to, they have not lived with UC, meds, surgeries, etc. I'm now 4 weeks post take down surgery and when asked I tell people that considering I have had 2 surgeries in 3 mos and lost a major organ I'm doing well but still adjusting and have some good and some bad days. Today is (fill in the blank) day.

Funny thing is the person I thought this would be hardest on has beenmost accepting. My 3 yr old knows that mommy had boo boos on my belly and can't pick her up and that sometimes we cut our outing short because mommy feels yucky. She has been such s trooper! Now ify husband could get it just as easily! He kind of gets it, but I really think he expected these surgeries to make me normal again within 6 weeks.

Kids are great! My grandkids still ask permission to do things that may require me to pick them up afterwards...Grandkids are so much more understanding of my bobo than the in-laws (if only everyone was only 5!)
Sharon

I'm having my surgery in 6 days, but as of now I always had to answer depending on the person. When speaking to a friend I can tell them the truth, but when it comes to my dad and brother they seem to lack compation for things they can't see, by that I mean if I was missing an arm they wouldn't ask to play catch but sience they can't see my colon they don't get it. My brother always wants to go eat out when we get together and it's always at least a 30 min drive to get home from eating and that spells disaster for me! My father owns his own construction company that he built working 80 hr days(according to him) and in his eyes " I'm just being lazy and don't want to work". Actual quote. So just be selective I've learned over the years not to let UC emberass me, and to avoid emberrassing situations, but being open about it can sometimes help others. The other day I was at a store I visit and was talking and come to find out the owner has diverticolitis and is going into surgery in December, so we are keeping in touch so hopfully I can help him with his nurves, I kinda wish he was going first so he could help me with mine though. Anyway the truth shall set you free! Unless you have family like mine, then just tell them what they want to hear!

I deal with it all the time! I hate it and am so happy to hear that others deal with it because it's a hard thing or feeling to explain to those that don't have to deal with it. It is very true, i have a sister who treats me like crap because she looks at me and can't see my illness so she thinks i am just a lazy looser. If it's not visible to people it's just not there or just not that bad. I have been told to suck it up, it's hard to say that i would wish for these people to walk in my shoes for a day because i wouldn't wish this on even my worst enemy but maybe if they did they would understand and when they asked how your are they would just take what you have to say at face value and move on instead of just assume that you are cured and normal. I just had my loop ileo done aug 16th and am having another surgery on my bottom in 3 weeks then in probably another 6 weeks or so after that i will have a surgery to be hooked back up (3 major surgeries in 3 months) and i am scared that my fiance will think things are going to be just fine and normal soon after when in reality we are fixing a major issue i have been dealing with for 2 years but it is not going to fix the fact that i have crohns "DISEASE" and it is not going away. We all need to come up with a one liner, the best one we can to say to people when they ask that dreaded question, lol

Hello everybody,
Everything you all say is true, no-one gets it, and think that having the op 'cures it,so now you're normal, no worries'. Got a bbq coming up with son's girlfriend and her family, and I must say I'm dreading it, the embarrassment of constanting going to the loo etc etc. and to make it worse they want us to sleep over as its quite a distance(another worry)but I'd rather chance a long drive home than having to stay over and be constantly using their toilet(thanks to the BBQ)and my son said to his girlfriend ' my parents would never sleep over'and thought it really funny, like its a choice, no they don't and never will get it. Thanks for listening, Heather

I work in a public place with a 150 fellow co-workers. The ones that "KNOW" my disease know what I go through. The ones that don't I avoid the conversation and say "Just fine".
The smokers know I crap more than they smoke anyways...

David,
I just responded to a poster here in the General section on False Diagnosis. Here's my answer:

I agree with the posters. I was confused in the past, too, especially when my j-pouch did not 'cure' all of my issues. I now comminucate with others, and council those in these Forums to do so as well, that I have been diagnosed with an inflammatory bowel disease (IBD) for which I have been treated (not cured) surgically. I hope this attitude helps myself and others with those who think that because so many of us may outwardly look "well' that in fact we are dealing with a whole constellation of issues from mild to severe, and that each day can bring improvement or decline.


I can be really tough to know what and how much to say, and to whom. With friends I tend to be a bit more open and honest. With co-workers and employers I have tended to share on a need-to-know basis; this can be embarassing and frustrating to have to share private medical details with employers, etc, so be careful what you share in that regard. Not sure I have any better advice to give, except to be patient and hope that things will improve or atleast stabilize.

Cheers,

Mark

Mark

Hi Mark, that sounds like a good reply to make to people who ask how its going, just say 'its stable or unstable at the moment', i'm gonna try it anyways!!

Heather