Prepared or not to tell people of your CD?

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Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 6/3/2008 11:25 AM (GMT -7)   
I know this has been discussed over and over again but I just needed somewhere to go vent. :-)
 
I'm really not prepared for everyone who remotely knows me to know about my Crohn's Disease.  I believe health issues are probably THE most personal and private issue a human deals with and I just don't think it should be everyone's business that I have this illness.  I get tired of hearing people discuss OTHER people's ailments within my office - unless the person with the ailment is actually a part of the conversation and is OK with it.
 
I work in a cubicle environment.  There's only about 15 people in my department but there are 100 people in my building and I know a lot of them.   
 
Although I've known about my CD for years, many people in my building would never even know I've been sick because they aren't close enough to my department or aren't in contact with me on a regular basis to know when I've been out of the office.
 
Today, a woman from another department really caught me off guard.  She came up to me in my cubicle/office, while someone was already in there with me and asked, "Girl, you have lost so much weight!  I didn't even recognize you!  You've got to tell me how you lost it!"
 
Now, if she'd asked me ANYWHERE else other than in the office, out in the open where everyone in my department or anyone walking by could hear, I'd have told her the truth.  But instead, she asked me in a very public arena so my answer was simply, "Oh, just cutting back on what I eat."  Which is kinda true! :-)
 
But she wouldn't let up.  "But I mean, you lost it quickly!  You look amazing.  I thought you were someone's teenage kid walking down the hall earlier!  How much have you lost?" 
 
So I just said, "Oh, well thank you...I don't know. I've probably lost 20-30 pounds."  (I've actually dropped 40 since January).  But the other girl that was in my cubicle at the time (who knew I was lying because she knows about my Crohn's) distracted the other woman so she didn't hear my answer so she had to ask again: "So seriously - how much weight have you lost??  You just look so good."
 
And it's weird, too, because I was at a kid's birthday party last week and the same thing happened with a woman I do not work with and rarely see.  She simply said she'd noticed I'd lost weight and wondered how I did it.  Without hesitation, I said, "Oh, you wouldn't want to lose weight the way I did...I have an intestinal disease called Crohn's so I've been pretty sick this year and have dropped a lot of weight because of that."  She was then very apologetic, "Oh, I'm so sorry to hear that" and I then felt bad, like I'd made her uncomfortable.  But somehow, it was very freeing JUST to be honest about it.
 
Anyway...that's my story today.  I guess I'm sort of getting to a point where I can answer the questions like that which come up from time to time, whether that's to be honest about my Crohn's or not.  I'm guessing I'll eventually get to a point where I'll just be honest with everyone about it. I mean, it IS a part of what makes me, me. 
 
Its just in my office that it bothers me for people to know - although, the truth is that probably a couple of the people I told about it have ended up gossiping to others about it. So more people probably know about my Crohn's than I'm aware of.  Which is why I hate divulging private info to ANYONE because EVERYONE has that gossip tendency - even if they've been told to keep an issue private.
 
Of course, when I gained weight (close to 50 lbs) after my initial diagnosis, NO ONE asked me how I'd GAINED so much weight!  I wanted to tell the world that it was because of medication, my body's molecular reaction to having LOST so much weight when I was sick to begin with (the body says, "Store more fat in case she gets sick again!") AND because I was finally FEELING GOOD ENOUGH TO EAT-EAT-EAT!!! :-)   But instead I felt like everyone was judging me due to my weight gain, thinking I'd just slacked off and started eating a bunch of junk.
 
It's so silly.  I have days when I just want everyone in my office to have knowledge of my Crohn's.  Then other days I really only want those people who are closest to me to know.  What's the purpose of people who I'm not close to knowing about a very private issue I'm dealing with?  Particularly one as socially-awkward as Crohn's!  But then again, what's the purpose of lying to people and leaving them in the dark about a disease that really SHOULD be talked about?!?!
 
It's such a struggle...
 
 

Diagnosed in October, 2004 at age 33.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/3/2008 11:53 AM (GMT -7)   
I think its just a personal decision whether to tell or not. I use to miss alot of work and people were continually gossiping about how much time I had been out, that I finally made the decision to let everyone know that I have Crohns. I still got a little flack for being sick alot, but that ended when I had to have a emergency resection due to a complete blockage. I think that made them realize that I really was very sick. I longer keep it secret myself. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 6/3/2008 12:01 PM (GMT -7)   
Your story sounds alot like how I feel. Where I work no one does ANYTHING but gossip and make up stories..hence I won't really tell about my Crohns, but there are those days where the gossip is about me and being sick that I just want to scream it out...but when they want to be that ignorant behind my back I just keep it to myself since I don't feel like telling people like them (when I am sick they say I am pregnant, which really isn't so bad, but by now with thier stories I should of had like 10 kids...I've been 'getting a divorce', having 'marriage problems', having a 'miscarriage' and everything you can imagine they make up for me.....and say that I SAID IT...when I just shake my head and laugh)...amusing as it is, I guess hearing hte next story is kinda funny....I have told a few close friends there that I trust, and one other lady who has Colitis knows and she would of NEVER guessed I have Crohns since of course I fall into that category of 'you look too normal to be sick'....but yeah, I tend to just pick and choose who I tell even if it would be better to just spit it out...I guess thats just my choice, but your not alone, I think alot of us fall into your same shoes.
27 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/3/2008 12:04 PM (GMT -7)   
One way to look at it is, if this woman isn't aware of your illness, how is she to know she's offending you in any way, she's simply impressed with your weight loss and sounds like she thinks you look amazing.

Of course it's your own personal choice if you want to share your health issues and there are some people who are aware of health issues that still make insensitive comments, but if they have no clue and are throwing what they think are compliments at you then just take it for what it is, a compliment.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/3/2008 12:04 PM (GMT -7)   
oops my post should have said I "NO" longer keep it to myself.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


mtbcubs2004
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 6/3/2008 12:16 PM (GMT -7)   
I totally agree. I was even reluctant to go into details with some of my friends. Even when I tried to be descriptive, they didn't say much, because I don't think they knew how to handle it. I decided to email all my close friends with a full blown rundown and I think it has helped. I was on Prednisone for 2 months and didn't miss a day of work and only one person said anything, they said, "dude what's up with your face". now I just came back after 2 weeks because of a reaction Remicade, and only 2 people have asked me what's going on. I told them, well are you ready for a story? It's amazing, when telling people, not only will it make you feel good, but people realize, "wow, my problems are nothing compared to theirs" it's the little things like that that help me stress less.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/3/2008 12:36 PM (GMT -7)   

I struggle with this also. On the one hand I wish i had told people at work because sometimes I am really sick and feel awful. then on the other hand I don't want my boss to think I might be a bad worker or miss a lot of work due to my illness.

I am in HR and I am the person that helps employees when they are sick with their FMLA and disability paperwork but I don't feel comfortable telling anyone I am sick. I guess my past experience makes me scared to tell anyone. I thought I would get care and instead got treated not so great.

Right now no one knows where I work and I have been here since the end of Feb 2008. I sometimes wish I could share and I am sure one day I will when the time is right. I guess I feel like I need to prove I am a good employee before I let anyone know. So far I think I am doing just that.

Days like today when I am completely exhausted I wish I had told some people so they understand why I look so tired. When no one knows and you look like you are going to cry from being tired it is a long day....

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for reflux.

 


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 6/3/2008 12:53 PM (GMT -7)   

Well, in my experience, even if you are not someone who is gaining or losing weight or appearing to be sick, gossipers will find something to gossip about in regards to other people.  So, it really doesn't matter, as everyone gets talked about no matter what.

Dealing with weight gain and medicine side effects, and people who stare.

I don't care who knows that I am sick.  In fact, when I am fat from prednisone, I make sure every time I end up in a room with other co-workers and they talk to me, I say something along the lines of "Owww....my face hurts so much....this medicine I'm on makes you swell really bad and I'm so swollen it's smooshing my face.  Sorry, it hurts to talk".  Anybody who would make fun of you to other people will promptly be scolded by everyone else, as it is extremely low to make fun of someone's appearance when it's caused by medicine smooshing their face!  Now I know if people stare it's because they're wondering if I'm ok and not wondering why I "look funny" which is much easier to deal with.

Telling people I don't feel good.

If people ask how I am doing, I tell them I am really sick, or I tell them I am really tired, when I feel that way.  If they look like they feel bad for asking I tell them it's not their fault that I am sick or tired, and that there is no cure for my disease so it's something I'm sorta used to, I am ok with talking about it and I just hope they understand that I won't feel too good pretty often.  They seem to take it pretty well, and for the most part now I get "Hey, you hangin in there?" or "Hey, you look like you feel pretty good today!" depending on how I look health-wise.  Much easier knowing people understand what's going on with my health.

Answering the "So what does that disease do?" question.

I tell them my immune system is defective and instead of attacking germs, it attacks my organs in my digestive system.  My stomach, my intestines, just about everything.  I tell them when the immune system is attacking, the organs get sick and don't quite work as well, so I get really sick and tired from not being able to eat or digest properly.  I tell them it's like having the flu and food poisoning at the same time, and almost always get "OH I get it, wow that's not fun" as the response.  If people still don't get it I just say "it makes you have to go to the bathroom about 10 times a day, which makes you really tired and malnourished" and leave it at that.

Dealing with stupid medical comments.

Sometimes when they ask me more about the disease, people give stupid medical advice like "maybe they can give you some medicine" when I just told them I have to take a lot of pills for my disease every day, or my favorite "you should see a specialist" right after I tell them I've seen specialists and there is no cure from any doctor in the world.  I get annoyed but understand that most people can't wrap their minds around the "incurable" part and they are suggesting things without understanding that it doesn't work.  I figure since most people will only come down with colds, flus and maybe an infection or two, they have no idea how doctors and hospitals work when you have a more serious health problem.

Having people understand you aren't a freak of nature.

Inquisitive or talkative people usually want to know how come I got sick.  I tell them that there are actually lots of disorders caused by the immune system attacking yourself, and that immune disorders are about as common as cancer, i.e. all you need is to be in that unlucky 1% and you end up with a lot of medical challenges to face.  Most people usually comment "Wow, I can't believe they make fun of people who have to go to the bathroom a lot then, if that's all it takes to get it." and I say "That's the other reason you don't hear about it often, jerks in TV and movies who make fun of this disease make most of us feel embarassed".  The more people who understand that anyone can get crohn's and that it's not disgusting or funny or weird because it's not our fault, the better!

Overall, I have found that talking to people, trying to give them a basic idea of this disease and autoimmune problems in general, helps them be more understanding and sympathetic to others with any health problems.  It also saves me a lot of stress that would otherwise be caused by stares, rumors, jokes, and misunderstandings.


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 6/3/2008 1:03 PM (GMT -7)   
Takes a bit of training but not giving a crap what others say about you just about fixes it. Almost everyone around you has some sort of issue (mental, physical, etc, etc). BTW once you perfect this, many things in life become much more easy.
SCD since 01, remission since 01, occasional Arby's breaks :)


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 6/3/2008 1:43 PM (GMT -7)   

I'm going to be facing this in a couple of days.  I'm going to the beach for a long weekend with my friends from college- we do this annually, and I actually missed last year because I was in the hospital that week!  I haven't seen a lot of these people in two years.  I've told a couple of them what's going on, and I know that the gossip will have gotten around to some.  But I also expect a lot of "girl, where were you last year"s and "how can you be so sick that you miss the beach house"s.  I plan to be honest about it, and give as many gory details as they want to hear.  (I don't expect it to be too many, but I've known these people forever, and anyone who's nosy enough to ask the questions deserve what they get!)  If I wanted to keep it a secret, it would be hard.  With my special TP and my special food and my bag-o-pills, it would be pretty hard to miss that something's going on with me.

On the other hand, I have a friend (former friend? aquaintence?) that I've avoided for a year now, because I don't want her to know.  She is the nosiest person I've ever met.  She- literally- offered to give me a rectal exam several years ago when I first started having problems.  She is not a doctor.  There's no way I want her to know anything at all about my medical condition.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/3/2008 1:48 PM (GMT -7)   
Bektold, i was shocked when you said "She- literally- offered to give me a rectal exam several years ago when I first started having problems" wow, some people are really different :)
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for reflux.

 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 6/3/2008 2:12 PM (GMT -7)   

Map lady- you did a nice summary with very helpful ideas.

I think all of us struggle with the issue of what to say.  I'm a pretty open person, but sometimes, especially with people I don't know well, I just don't have the energy to explain myself.  I was sitting in the stands watching my daughter play soccer, and some women bought a couple of bags of popcorn to share.  They offered it to me three different times, and I kept politely refusing.  Finally, I just said "I'm on a special diet and I can't eat popcorn."  It just seemed easier than explaining the whole story...meanwhile, I truly love popcorn...if they only know how hard it was for me to keep saying NO! I just try to remember that everyone has something they struggle with: crohn's is just my challenge.  this forum sure helps to know I'm not alone!


49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 6/3/2008 2:16 PM (GMT -7)   
Yeah, it creeped me out, too!  I think in general she means well, she just doesn't have much understanding of boundaries.  I haven't told her because 1) I don't want my medical info circulating far and wide in emails and 2) I've had enough rectal exams in the last year thankyouverymuch!

map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 6/3/2008 2:56 PM (GMT -7)   
Omg, lady wanting to do a rectal exam on you?  How totally creepy!  I wouldn't even want my closest dearest friends or relatives looking at my butt, let alone looking in my butt tongue
 
As for people who bother me about eating foods, I either tell them I have a lot of food allergies and I can't eat that (I do though) or that I have a stomach problem and I can't eat xyz food item ever again even though I used to be able to eat it and know that I like it.  If they are pushy and won't take no for an answer about eating their food, I tell them the doctor said I would end up in the hospital within a day or so and need surgery to fix it, and they shut up right away :-)
 
It is fun to shut down people who are pushy and insensitive  ;)

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/3/2008 3:17 PM (GMT -7)   
I'm pretty open with my Disease with my friends and at my job. This way all the people in my life understand why I don't feel
good or why I miss days at work, or why I have to cancel things at the last min. from not feeling well or tired, etc...

Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 3:27 PM (GMT -7)   
For coworkers that I don't know well enough to want to share the details of my chronic illnesses with (yes i've got multiple...*sigh*) I don't say more than I've got a chronic illness and it laid me up for a while. If they get too nosy I tell them as much and usually I toss a joke in to boot. Doing this seems to help them understand that a) I'm not comfortable telling all the details they've asked for and b) that I'm harboring no ill will. I usually get a quick apology and that's that.

For those I feel comfortable discussing more details with, I let them set the pace. Not everyone wants, or is prepared, to hear "Yeah last night was horrible, I had to use the restrooom 10 times, and I swear that I nearly achieved lift off the last time."... There are some good friends of mine who cringe when I make those statements... And yes I know it's scarring them for life... However, they deserve that visual! (Former band members mostly...) In all seriousness I seldom go to that level of detail with even my closest friends as they aren't comfortable with it.

Although, I'm good friends (pretty much family as Tim puts it) with a couple, Tim and Amy. Amy is studying to be a nurse and she had to interview someone with a chronic illness. I was brutually frank with my answers. I think she ended up hearing more than she ever wanted to know about all sorts of aspects of my life. But to give less detailed answers would have been dishonest. I think I drove the point home of how rough it can be, by saying "Sometimes my body tortures me and I've got it really easy compared some people with Crohn's." and then failed to follow it with a joke or funny anecdote -- which I was doing through most of the interview for my sanity and hers. (It's so darned depressing if I talk about the bad aspects of an illness and make no room for humor.)

And bektold, can one truly have *enough* rectal exams? After all they're calorie free, fat free, and apparently free of charge when done by your friend/acquaintence... I'm kidding... Seriously though, I had to read that twice before I realized I read it correctly... *shudder*

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 6/3/2008 3:29 PM (GMT -7)   
Ahhh...you guys are great! cool
 
Nanners, you bring up a good point about "sick leave".  That's one reason I teeter on the side of going ahead and telling people in my office about my Crohn's so they'll understand WHY I've been out of the office so much.  But at the same time, I feel like there are SOME people (yal know the kind!) who, even if they DID know of my Crohn's, would still question why I'm out of the office on sick leave so often.  Those are the people who can't possibly wrap their brain around the symptoms of this disease unless they had it themselves.  
 
I guess that's where I need to try and take ACOCCC's advice and learn just not to give a crap about what people think!  Who cares if some people think I've taken too much sick leave!  If I've got it, I can take it!
 
Lady G, that's what I've been doing, too.  Picking & choosing who I tell.  So far, it has depended on who is asking, what exactly they are asking and where they are asking me!  Gossip makes me crazy.  I know I slip and do it sometimes myself, but quite honestly I'm very aware of talking about other people's business with "non-related" people.  If someone who I know is just a nosy-body comes to me and asks "Where's so-and-so today?".  If I know that person is out sick, I'll usually just say, "I don't know" or something more sarcastic like, "Well, they aren't at work so they must be somewhere else."  It floors me how nosy some people are.  Of course, most people probably wouldn't care if I just said, "Oh, she's out sick today" but see with me, I DO NOT want people to say that.  If one of the Gossip Girls come around asking about me, my friends in my office know to tell them, "I don't know...you'll have to ask her yourself when you get back."  tongue
 
pb4 - you're exactly right.  That's the best way for me to look at it - a compliment.  And I really did know she was trying to compliment me.  It was just that she was being so LOUD about it and kept ON asking questions.  My saying that I'd just cut back on my food intake wasn't good enough for  her.  My Mom said to me today, "Why didn't you just tell her you'd been having some stomach problems?" but with a woman like this there's always a follow up question like:  "Oh really?  What kind of stomach problems?"  Some people just don't know how to DROP a subject after they get an answer to their initial question!  My mom hasn't been in the workforce in a long time...I don't think she's ever really experienced the "office gossips".
 
mtbcubs...it is SO much less stressful to be honest...that's true. I think as I get older I start to care less about people knowing about my Crohn's and maybe that'll eventually make me be more honest when people ask questions in which the ultimate answer is, "I have Crohn's Disease".  I really do want to get to that point where it's not a big deal TO ME for "whoever" to know about it.
 
karendee - that's so ironic that you work in the HR department.  So you know what everyone else is going through with their medical leave and will know how to deal with it if you ever need it yourself (hope you don't!).  What's ironic, too, is that the woman who I was talking about ALSO works in that HR area of MY business!  I feel like you do, too, sometimes...when I'm tired and dragging with dark circles under my eyes from lack of sleep and sheer exhaustion from the Crohn's symptoms...it's those times I often wish everyone who saw me during the day knew about my Crohn's...because when I look like crap, lots of people will say, "ooh, you look like you don't feel good..do you have a cold/flu?" "What did the doctor say?" "Don't get near me if you're contagious!"
 
may lady - man!  You really organized those thoughts well!  LOL on the "medical advice".  I once had someone tell me I needed to go see a PSYCHIATRIST!  I've also had the "why don't you just go to the doctor?" question - and that was from someone who I've told details about my Crohn's to.  "Uh, yeah - duh!  Why didn't I think of that!"  People who have never dealt with Crohn's or any chronic illness like it, just completely DON'T GET IT.  Loved your explaination of the disease, too.  I might have to use that "Flu + Food Poisoning" description next time.
 
bektold - good luck with your beach trip!  There are certain people, I too, NEVER want them to know of my Crohn's.  There are some true friends who haven't been supportive of me (well, not really true friends anymore).  But there are "acquaintances" that are so NON-understanding and well, EVIL, that I wouldn't in a million years tell them about my Crohn's.  Of course, I've never had anyone offer to give me a rectal other than my GI!  What a weird, obnoxious comment she made! eyes
 
gumby - yes, sometimes there might be someone that I wouldn't mind knowing about my Crohn's, but it just takes so much ENERGY to explain things, doesn't it??  Like there's one woman in my office who I wouldn't mind knowing about my Crohn's.  She's seen me on days when I've been sick.  For example, one day I was hobbling to the printer because both my feet were so swollen from my flare that I could barely walk.  She saw me and asked if I was OK.  I said yes and left it at that.  I could have told her about my Crohn's and how that can cause inflammation throughout the body and that's why my ankles were swollen but I just didn't have the energy to do that!  Even the people who've known for as long as I have about my Crohn's can't comprehend my feet swelling.  "I thought Crohn's was a intestinal problem?"  Nope - no  such luck.
 
I can see pros and cons on both sides of telling people and not telling people.  The only reason I sometimes feel GUILTY for NOT telling people is that I can't help but wonder if maybe I'm often running into people who know people in their family who are suffering from some "unknown" intestinal health problem.  I mean, it took over a year for my doctors to diagnose me.  Crohn's wasn't even a thought in their brains in the beginning.  And I think a lot of people who have been Dx with IBS are actually suffering from Crohn's and don't know it.  Maybe my story could help someone else...I don't know...
 
Thanks for the support you guys.  Hearing your stories help me build on how I'll handle the next time someone asks me about my weight or my health. :-)
 
 

Diagnosed in October, 2004 at age 33.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 6/3/2008 4:24 PM (GMT -7)   
I might as well have a big old neon sign over my head that say Crohnie because I tell everyone. Most people know nothing about our disease and I want to promote some awareness.
Jodi

Remicade and 6MP


Shellz0711
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 4:28 PM (GMT -7)   
I have really been struggling with my sick leave and guilt and this has made me realize that I should just say screw it! I mean I am there a lot of the time when I should be sick. My co-workers don't understand what working a 13 hour day after a remicade infusion will do to someone. So I wanted to say thanks for helping me realize that I've got sick leave for a reason and I shouldn't feel guilty for using it. If they don't understand then forget them! But I wanted to know does it really piss anyone else off when you catch people saying "Oh I wish I had leave so I could just miss work when I want to" I just look at them and want to scream. Yeah you can have my leave if you take my chronic incurable disease with it!

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 6/3/2008 6:07 PM (GMT -7)   
Dear Abby's answer to people who ask rude, intrusive questions is "why do you ask?"  That would probably work for the "what kind of stomach problems" follow up, if anyone pushes. 

Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 6/3/2008 6:15 PM (GMT -7)   
Over the years I haven't told any one in the offices that I have worked except where I was a regular employee and not a temp. Temp was the best for me because of having Crohn's, Ankylosing Spondylitis and Uveitis. As for my employers they have all been told and understad that I need time off for doctor appointments and illness. Some I have had to explain the disease to them and others understand the disease.

As for telling people I tell most what is going on most of the time but there are times that I make the decision to not tell right away and tell later. I used to care what others said but now I don't.

I remember working with for a government office that another employee had Crohn's too. I picked up on the signs and when we were chating one day and someone commented on the number of times that he went to the bathroom and the length of time he was in there they rubbed me the wrong way. I blurted out do you have any idea what it is like to live having to go to the bathroom anywhere from 5 - 20 times per day. How would you like to have a disease that is incurable? He knew that I had Crohn's just like him. Any way that was years ago before my Crohn's got worse and today this fellow and I are still good friends swapping stories. The other staff members didn't say to much to either of us; but, I am sure they had a lot to say among themselves.

Last year I had the spoon story sent to me and I wish I could find it because it is the best story for any one with a medical condition that is not curable.
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Uveitis
Back on Prednisone - I hate it
Methotrexate
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 6/3/2008 8:02 PM (GMT -7)   

I tell everybody about my Crohns & AS so that they know why I look so bad!

I work with the public and they are never too shy to tell me how I look. I had one regular customer (male) tell me I will be bald before him (and he looked like Friar Tuck) I quickly snapped back 'I take medication that causes hair loss for my disease etc' and concluded with 'I hope you feel bad now', my colleague said the look on his face was priceless and he now sucks up to me everytime I see him.

So I have told all my fellow workers and regular customers so I dont need to hear how bad I look and also for their support when I am not feeling too good and do drag myself in to work. (Only one sick day this year - so far).

Joanne


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 6/3/2008 9:04 PM (GMT -7)   
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Here is the link for the Spoon Theory. It can help with people who don't understand what it's like to be sick alot!

Sorry if the link doesn't work, I'm a 'cut and paste' girl!
diagnosed w/Crohn's 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, omeprazole, fish oil, sublingual B12, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 6/3/2008 9:11 PM (GMT -7)   
I have told just about everyone. I, too, feel like so many know nothing about this disease or have misconceptions about it so I use myself as a way to educate. You wouldn't believe the people who have come to me later for advice, information, or concerned about a loved one that was DX and wanted to talk to me. I love that!

For me, I work where I attend church. They are my church family and I share my struggles with them (and they do the same with me). I have built closer relationships with congregants over it and they have been there for me when I was hospitalized or really sick and unable to work as much. If someone offers me a food I can't tolerate, I just say 'nah, I love it but my body doesn't right now!' and they know exactly what I mean.

Sharing personal health information with others really is just personal preference. Good luck in figuring out ways to avoid conversations that are uncomfortable - I'm sure it's hard at times. =(

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/3/2008 9:23 PM (GMT -7)   
Map Lady, what an amazing list of ideas. I'm nominating you for Crohn's Ambassador of the Year!!
Co-Moderator Crohn's Forum.

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