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....
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.
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.
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.
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!
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).