Community Forum

I have been diagnosed for 8 years now, but had symptoms for over 12 years.  I am now trying to get back into remission because I have had a flare up every year for most of the year.  My doctor puts me on Entecort and more Asacol.  This time I am trying Humira.  My issue is that people think that because I am younger that my body can still do what other 29 yr old's can do.  I am just able to do what I could even 4 years ago.  Should I worry about these unsympathetic people or just  blow them off.  Most of  the time they are people I work with and it makes it difficult to work everyday with people that expect more out of me no matter what I may be going through.  I do not know how to deal with these people and get them to understand to let up and let me go at my own pace to get my job done.  I sometimes am too overwhelmed to know what to do.

 Reply posted for CherylLS.

cheryILS

no-one unless they actually have had the experience of Crohns really understand what we go thru.....It's ok to sit at a dinner and discuss diabetes, heart disease, lupus, heck even cancer but mention the word BOWEL and folks just naturally run......so I try not to explain to anyone, I tell them to google Crohns disease and let their imaginations go wild with all the info there.....then if they truely care.....they'll come back and sincerly ask about you.  Thankfully I have a keeper of a husband and 2 very understanding kids !!  My other family....all in my head....so I just exclude them when it comes to health issues....

 Reply posted for CherylLS.

It's one thing when co-workers don't understand but try going through life when your family doesn't understand. Starting with your spouse. My mother accused me of not eating properly, my crohn's is genetic { thanks Mother}  My husband looked the other way and his family thought I was trying for a Oscar.  They have all passed on now and fortunately their attitude was not passed on to my children. I called my daughter once at  5 AM and told her I needed to go to the ER. I'm going to my son's next month and there will be jello. yogurt and anything else I can tolerate available.  

 Reply posted for rocknrollchic31.

rocknrollchic

hang in there, I know how you feel. This can be devastating at times.

Liz

 Reply posted for CherylLS.

I feel for you, unfortunately we live in a world where people are not sympathetic to your needs in the work place. I am a nurse and people aren't sympathetic at all. I think the attitude is...If you are sick and can't do your job then stay home. I work 12 hour shifts in a fast paced area where a bathroom break comes 1-2 times a day. Imagine that!!!! I hide my disease though. I don't want people do know when I am sick. I am having a flare-up now. To get through a day of work I don't eat all day. I will drink room temperature water (so it doesn't shock my belly). I will have a high protein shake, which I drink half in the morning and half in the afternoon. No food. I take vitamins the night before work. I have been sticking to this regimen for work days. It sucks!!!! but it works. I may have to run to the bathroom once ot twice, but in my mind that is a miracle in a 12 hour day. When i go home I eat rice plain, drink plenty of water, and take vitamins. Then get up the next morning and do it again. I only work 3 days a week and I work them all in a row. So for 3 days my life truly sucks, being busy at work keeps my mind focused. Then on my days off I treat myself to solid food :) I haven't lost an ounce of weight, so this regimen works well for me right now.

Liz

 Reply posted for CherylLS.

Boy do I know how you feel. I am 26 years old and have had UC for about 7 years. At first, it was extremely mild.... but lately, I feel just completely broken with all my flare ups. I never want to do anything and it takes tons of energy to get out of bed and go anywhere. I feel like I am letting myself, my friends and my boyfriend down all the time. It makes me feel a lot older than I am.

All I can do is say, I know how you feel even if others don't. I don't have any advice because I am struggling with this myself.

It sounds like we are in the same boat though, so solidarity!!!

 Reply posted for CherylLS.

I agree with Susan - you can accept their behavior or try to educate them.  At least through this website are some things you can print out, if that's the path you choose to take with this.  Also please remember that you are only responsible for your own reactions to things - you can't control anyone else's.

 Reply posted for CherylLS.

I know all to what what you're talking about. I'm only 31 and I've had UC since I was 19! some days I feel great,some days I feel like can't make it out of bed. thankfully My husband understands my problem,but other people on the out side looking in,don't quite get it. I "look" so healthy on the out side but on the inside,so much going on.

My advice is to just live your life the best you can. there are people,who unfortunately are experiencing much worst diseases.UC/IBD/Chrons, are all very annoying. illness has no age limit.

 Reply posted for CherylLS.

In a word...no.  They will never get it.  You  can try to explain everything to them in very graphic detail.  Then maybe they will understand that it's not just a case of diarrhea. 

My own sister saw me when I was dying from UC and told me that it was God punishing me for taking herbal remedies.  Nice.

You just have to accept it or educate them.  Either way don't stress yourself out over ignorant people they aren't worth your time!  Love the people who love you and ignore the rest.

Take Care

Susan

 Reply posted for CherylLS.

Sometimes i feel like my own wife doesnt understand teh pain I go through.  She is very sympathetic but still doesnt get it.  My family thhey try and sympathise as well but they are always telling me IM too skinny. Heck, I weigh 210 and I am 6ft 3".  So I guess what I am saying is I look healthy on the outside and if my own family doesnt really understand how would people I work with (I know they dont) much less strangers.  Just know your not alone and thast why we are all here to listen (or read as the case may be).

 Reply posted for Duck.

I have trouble with other people's ignorance too, especially when they make bad jokes about food. The problem is, they can't SEE the problem. You wouldn't want your intestine showing. But if it did, no one would question your difficulties.

 Reply posted for CherylLS.

No,  I don't think that anyone can truely understand what we go through,  even the docs and nurses.  Thats why this place is a great place to vent...just when you don't have anyone to turn to you log on and BAM people understand and care. 

Hang in there.

 Reply posted for CherylLS.

Don't be overwhelmed.  People really don't understand about auto-immune diseases.  For one thing, we generally LOOK healthy.  They don't see us on the potty!  Maybe your role here is to be an educator to your fellow workers--I know that's hard when you're so fatigued and they're so unsympathatic!  Good luck and hang in there!