Tired of faking it - I AM sick so get used to it!

[bball diva]

I'm so glad there is a place on here to vent! I've been needing to do this for a while! I have had Crohn's for 19 years and have yet found anyone to understand what I go through and it is really frustrating!

I have a few friends who try to understand and they say things like "if you need anything, let me know". I know they are just trying to be nice, but I don't feel comfortable letting them know exactly what is going on inside my body. When they ask me to do things, I usually just tell them I'm not feeling well enough today and they understand that and know that I'm not blowing them off, which is good.

However, some friends and even my family put me down all of the time. I am always asked to help with things (i.e. help moving, taking mom where she needs to go, babysitting) and it's not like I don't want to help, but I physically can't do it! I am so exhausted all of the time and can't do anything more than I am doing! I work 80-90 hours a week every week (except during the summer) and when I am not working I am exhausted (I am exausted at work too). I have to work this much to pay the bills (I have a couple of different jobs) especially since my medical bills are so much! It's a catch-22! So when I tell them "NO" I can't do something, I get the guilty trip. They don't understand why I can't do things like they can. I finally yelled at my mom a little last week when she gave me the guilt trip about going to my nieces recital. I really wanted to go, but I had already had 3 bowel movements in the last hour so I called and told her I couldn't go and she told me I was being lazy! Why can't people understand that I am not lazy and that I have a chronic illness???


Then there are my co-workers. I don't know where to begin with this one. There are times when I am late to work or meetings or have to leave class because I am "sick". I actually have co-workers that have complained to the principal that I was late several times for morning hall duty (I guess I have developed some sort of anxiety about leaving my house when I feel like I have to go to the bathroom so I won't leave until I am sure I can make it to work without going in my pants). He just told them not to worry about it but they said it's not fair that I get to miss out on hall duty but still get paid the same salary (I am a teacher by the way). The principal came to me and said I need to come clean with the staff and let them know that I am sick so they can understand. I have always lived my life as if I am not sick and never let it get to me. I always did anything and never thought about my illness because I didn't want to be told I couldn't do something because of it. I am so tired of fighting this and am wondering if I should come clean and let people know. I'm just afraid that I will get "pitied" or the famous "she is just using that as an excuse". HELP! Does anybody else have problems like this? What do you do about it?

 

[Cookie]

Welcome Diva,

I think many, many of us can relate to your post. In fact, your post mirrors the way I feel, almost all of the time. I try to tell myself that I can only do what I can do and not to worry so much about what others think...just be truthful with myself and that's all that matters. It's hard sometimes, but this forum is a great family of people who truly understand what you are going through and are always there to offer support.

Glad you found us!

 

[misscris]

Welcome to the forum diva. It's a great play to let it all out like you just did. You've definitely come to the right place, several here vent about the same issues often.

 

[kello82]

hey diva and welcome!
well, i havent had much experience co workers at work yet but having similar experiences with grade school, i can kind of relate. of course there was a lot of "well why does SHE get to leave the classroom without asking? why dont the teachers yell at HER when shes late for class?" school is a bit different than work i know but heres what i would do:

you do NOT have to reveal ANYthing you dont want to to anyone just to pacify them ok? this is your personal information and no one can demand it from you! take that attitude that no one who is whining like that deserves your indulgence like that, make sense? so i would tell your boss that any one who comes to him to complain is welcome to approach you and address their complaints to your face, instead of behind your back. then, you you can be the one to give them as little or as much explanation as you want, and they will be put in their place and realize that they made a mistake with their accusations of it being unfair. i think that the personal one on one conversations will be much easier than a staff wide memo for everyone.

well i hope that helps. and as far as friends wise, only very recently (i have had crohns for 10 yrs) i opened up to 6 or so close friends about even the very intimate details of my disease. butt problems, stoma surgery and all. and you know what? our friendships are far deeper than they ever were! though no where near as understanding as everyone here () they are able to be supportive and sympathetic in a way that they never could when i was shutting them out.
this forum helped me to take that step, so i really hope it helps you too!
we are all here and can relate to you 100%
welcome again!

 

[bball diva]

Thanks everyone for your kind words. I definitely felt better letting it all out and knowing that there are people out there that know how I feel. I know I can't let things like this get to me, but sometimes it's really hard not too. I just seem to have too many people around me that seem to be "haters" (for lack of a better term) and don't understand even when I tell them what's going on. It's like since they can't physically see my illness it doesn't exist.

Kello - great advice. How exactly did you come clean to your friends. Invite them over and show pictures of your guts or what? LOL I know it's important for me to have a solid support system around me, but I just don't and don't really know how to get people to understand what I go through everyday.

 

[SpoonNinja]

yea i didnt want ne one to know about my cd when i was first dxed, because it was a disease dealing with poo is how i saw it, and hated it. but eventually i can to terms with it after researching it a lot and tell ppl its a digestive disease and just give them a quick discription of it(avoiding the poo part lol) but i would tell my teachers because i missed so much time i didnt want them to think i was skipping. and as for the whole lazy thing (which ill admit i am lazy but i think everyone with cd or uc is at some point) but i found a hoodie saing really bbig on the front "im not unmotavated im just lazy" ha i ware it when i dun feel good so everyone nos to let me be lazy!

also if you go to the ccfa's website they have printout pamflets for employers and friends and family and all sorts of things, you could print one of them out to give out or even just read them and get ideas about how to tell ppl, well hope you figure everythingout and welcome to the forum where you can vent and ask questions without ne one getting annoyed!! lol ^-^

 

[forum contributor]

No, diva! What Kello did was invite her friends out to Ruby Tuesday, and then right after the appetizer, she showed the framed pic of her "perfect poo" that her mom took and keeps!!!! LOL
Welcome to the forum, by the way, and feel free to vent any time. It's (one of the reasons) why we're all here.

 

[kello82]

Kello - great advice. How exactly did you come clean to your friends. Invite them over and show pictures of your guts or what? LOL I know it's important for me to have a solid support system around me, but I just don't and don't really know how to get people to understand what I go through everyday.

hahaha i did it online actually. since they all are away at college, we have an ongoing message thread on facebook between us all where we just post all the time to chat. one day i mustered up the courage to say "guys, i had BUTT SURGERY today. my butt is effed UP!" and i went on to explain a bit about what had been going on and also that i was tired of keeping it a secret and that i loved them and didnt wanna seclude them from anything cause i would deff wanna know and wouldnt wanna care or be grossed out if it were any of them!
they were so great about it "we love youuu we hope your butt is better " HAH it was so cute.

SO since then it has been so much easier to just update them whenever something new happens and not have a huge long tale to tell right? i chat with them about it all the time when something happens or they ask me how im doing. i even DID show pics of my stoma wounds (the ones i posted on here) to my friend a couple nights ago, i was explaining and i was like "oo i have gross nasty pics if you want?" "OKAY!"
she was totally cool with it and im sure it helped to understand.
i said "listen thanks for not being like, grossed out. it means a lot"
"thats what friends are for kell "
i was like "NO, that is WAYY beyond the duty of friends. you just saw my poo hole, hun!"
LMAO it has become such a bonding for all of us

i think it would be a lot easier, well it was for me at least, to initiate the convo online or written down somehow, that way you get out everything you want to say. i get really sidetracked when im talking in person and wouldve missed a lot of stuff probably. everything is easier to do in writing in my opin.

No, diva! What Kello did was invite her friends out to Ruby Tuesday, and then right after the appetizer, she showed the framed pic of her "perfect poo" that her mom took and keeps!!!! LOL

rissa!!! you are SO mean, hahah she didnt FRAME it i dont even know if we HAVE it anymore!! LMAO i hate you!!

 

[forum contributor]

But Kello - I love you!!!

 

[forum contributor]

AND AND AND I thought that story about your mom having that pic was hysterical. At least your mom cares. Even if my mom ACTED like she cared, it would be a lot more than what I have now.