Advice on weird/rude responses when people ask what IC is?

[Melissa82]

Hey all

So, eventually, the fact I have IC gets brought up. Whether it's on a trip somewhere, or with people I'm just getting to know, or at work...

I will happily and patiently explain to people what it is, but I get some weird or rude responses sometimes.

For example, at work, they were having a pizza party. One of the ladies at work came by my desk to remind me the food was here and to encourage me to go and have some. I politely responded, "Oh, I won't be having any, thank you..."
To which she insisted, and I finally said that I couldn't eat tomato products. She asked why, and I told her I had IC, and when she asked what it was I gave my short explanation of it, to which she responded, loudly enough for the whole office to hear, "OH! You should get DEPENDS!"

.... it took everything I had not to just stare up at her and ask, "Really?.... really?!"

Sadly, she is not the first person to make this 'helpful' suggestion. On days that I've been invited to go do some vigorous activity (even by close friends) and my IC is bad, I decline. Most of my friends are used to it, but some of them make the same suggestion. I really think it's kind of rude and uncaring. Yes, they are making the suggestion because they want me to come out and play, but to me it's like telling someone with a prostetic leg that they should get a wheelchair... it's just not something you say. Am I the only one who gets this? Am I a little over the line in getting offended by it?

That, and the comments of "You're so young!", "You don't look sick!", "It's all in your head!"
.... or having to explain what IC is to my boss who was calling for long meetings and wanted me to go on a long road trip to see a client with him, which I had to decline... and got some odd stares, questions, and was met with disbelief.

If anyone here has gotten these questions, what do you find is the best way to deal with them? I've just settled for silence to most of them, because after the 'depends' comments I am so mad, but I don't want to make someone feel bad by just flat out saying that I find that comment pretty rude. I have no idea how to respond... so I just don't.... and I really would rather both educate people on what IC is, and better yet, HOW to interact with someone with IC!! We're still people just trying to make it through the day, and comments like that just throw hurdles at me that I'm not always ready for.

Any suggestions would be REALLY appreciated!!

Thanks

[kadi]

I know what you mean. Recently a coworker who also has IC & I were talking & another staff member overheard & asked me what IC is. I told her & she asked, "Do you pee the bed?" I was pretty startled & offended, but I just said, "No, IC is painful (like having a bladder infection 24/7, but isn't infection, can't be treated with antibiotics) & doesn't generally cause incontinence. Why?" And then she told me she has trouble with incontinence & that when she heard me say "autoimmune", she wondered if that's why she's having that problem because most of her family has autoimmune illnesses. We finished the conversation ok.

I generally give an extremely mild response to rudeness & change the subject. But if the person persists, then I respond with "Why would you say something like that?"

I'm pretty discreet though about who I tell & to what level I disclose. My supervisors at work know only that I have a doctor's letter that says I have a medical disability but can work with the following reasonable accomodations: a work station near a restroom & what time my break is. I alluded to it as an autoimmune illness & gave them the letter. They don't need to know more than that.

My coworkers in my department, most of them know because I was working there when I developed IC (rapid onset) & had a laparoscopy & then a hydrodistension. They helped me get through that terrible first year & have been amazing. It probably helps that they are all at least 45 years old so have experienced health problems or have had family with health problems.

Casual contacts, people at church, acquaintances - I generally dodge food issue discussions with "I already ate." or if I had to bring my own food, "I have severe food allergies." AND then IMMEDIATELY change the subject, "So how long have you known so&so? been coming here?" Etc. So the topic is off limits. If the person continues to bug me about my food, I say politely, "I'd rather discuss other things." And then IMMEDIATELY change the subject again. I actually practiced this over & over with my best friend until I got really good at it. She enjoyed being more & more nosy each time we practiced I think it's one of the biggest gifts she's ever given me...

I don't like how fast the conversation re: IC can become uncontrollable, how much correction of misconceptions I may have to do, & how another person joining the table or event starting can leave us in the middle of an unfinished explanation that can make things even worse.

Sorry if I've written a book here, I've had IC for almost 6 years now & the social complications it causes were for a long time the most upsetting aspect of the disease.
Mostly I'm ok with it now, as long as I feel I'm in control of the discussion...

Good luck!

[SharonA]

If cornered by an overly quizzical person, I usually tell them that I have a chronic pain disease of the bladder and I cannot eat anything that is highly acidic because acid is my bladder's number one enemy. That usually ends any conversation very quickly because most people do not want to talk about bladder things nor do they want to talk about chronic pain. If they do make a remark, it is usually, "I am so sorry" or "That is terrible" and change the subject.

As a side story here...Hubby and I are part of a group of 8 couples who meet every Saturday evening for dinner, talk, laughs and Bible Study. Everyone is in their 50s or 60s. At one of the 1st times we were there, the topic of the aches and pains of getting older was being discussed at the dinner table. I happened to mention the "chronic pain disease of the bladder" thing. One of the ladies said, "I See". I answered back, "You know about IC"? She said, "Yes...I have it". What an amazing thing to be one on one with someone who also has IC. So sometimes it is a good thing to talk about it. One never knows where it will lead.

[ICNDonna]

People who know me fairly well know that I have interstitial cystitis, but I usually just say "no, thank you" when somebody offers me something I can't have. If anyone persists, I will tell them I have allergies --- since certain foods cause a reaction (pain) I don't feel I'm being untruthful in any way.

If someone persists in wanting to know about IC, I start by telling them its other name is "painful bladder syndrome."

Donna

[Goldfinch]

The next time anyone suggests Depends to you, just ask if that's what they use.

Personally I like using the words Interstitial Cystitis. It sounds like a real disease. But usually, if I am talking to people I don't know well, I just say I'm on a low acid diet or that certain foods just don't agree with me. Most people don't want more info than that, since I am guessing their first though is diarrhea, and no one ever wants to pursue that. but many respond that they have food allergies as well, and I just leave it at that.

[Cassaundra]

I usually just respond that it is a chronic inflammation of the bladder which causes chronic pain and I have to watch my diet because of it. So far I haven't had any trouble with my coworkers, although in the beginning some people had trouble understanding.

[sailawaygrl]

What drove me crazy when I was still working was one woman found out just enough about my symptoms-she has something else that she constantly compares to IC but of course her disease is much worse, but she can control it and is fine now- but with her VERY insufficient knowledge of IC made others think what I had was not all that bad. I never felt the need to explain to her, my one attempt was stopped by her telling me how hard her life was with her disease, and maybe it is, but don't think you know how I feel until you have walked a day in my shoes.

On another note though, I have met a few people that know someone else with IC or have a family member with similar undiagnosed symptoms. I like to think I might help them know an avenue to explore.

Sandra

[mary124]

Most of my co-workers either know what I have or don't want to know. Those that know don't really know what it is and they really don't want me to tell them all the details. They just know that I have "several illnesses" and I have a lot of doctor appointments. They are just amazed that I can work and have a really good attitude on life.
As to food issues, like I said most know something of what I have (been in this department for over 7 years-longer with the company) and when we have food of any kind, someone is always thinking about me and makes sure that there is something there that I can eat; plus whatever I might have cooked.

[OllieR]

Hmmm... this is interesting. I think if somebody said that to me I would literally just start crying right then and there haha. Either that or say something I probably shouldn't, but in any case I'm sorry this has happened to you. That is very ignorant. (Since when do Depends help solve a chronic pain and irritation problem?) It might be a tiny bit of a lie but usually when I'm asked about it in mixed (gender) company I leave it all "girl problems," and am absolutely positive it will not be pursued (and if it is at great protest from the boys!). For me the weird reaction has been a blessing because my circle of girls seem to pursue the subject with great interest and concern. Perhaps because it's easier for a female to understand if they have ever had a UTI or pain from menstrual cramps (a little different, but I think could help in understanding a lot more). I hope I never have to meet a reaction such as this one!

[TexasHoney]

I have used the ''girl problem" or "that time of the month" respones on many occasions when I don't feel lkie going in to details. I find it shuts people up especailly men but somtimes women as well. When I want to get technical about I explain that is chronic inflamamtory disease of the baldder which causes UTI symptoms when no infection is present and there is no cure.

[cem]

I'm really glad I saw this thread!

The next time anyone suggests Depends to you, just ask if that's what they use.

Ha ha! In the right situation that just might work.

Personally I like using the words Interstitial Cystitis. It sounds like a real disease.

I usually tell people that too, if I chose to tell them anything at all. And it IS a real disease. Don't be afraid to stick to your guns & tell people that it is a real problem!

If someone persists in wanting to know about IC, I start by telling them its other name is "painful bladder syndrome."

I really like this approach!

t one of the 1st times we were there, the topic of the aches and pains of getting older was being discussed at the dinner table. I happened to mention the "chronic pain disease of the bladder" thing. One of the ladies said, "I See". I answered back, "You know about IC"? She said, "Yes...I have it". What an amazing thing to be one on one with someone who also has IC. So sometimes it is a good thing to talk about it. One never knows where it will lead.

What a blessing!

I'd like to know just one person in RL who has IC. I think that's been one of the hardest things for me so far. I feel really isolated! My sister is an RN at a nursing home & one of her patients is on Elmiron, but she has Alzheimer's so I can't really go in & meet her & discuss things. My sister in law is an MA and one of her patients has IC, but she lives across the country so that's out too.

One of the biggest surprises for me was one of my bosses. He's a veterinarian & since cats also suffer from IC he knew exactly what I was talking about when I told him about being diagnosed. I've tried to be open with both of my bosses about having IC. Both are male & could easily be grossed out about it, but have been ok. The one who isn't a vet has said a couple of remarks that made me think he thought I was "imagining it", but I triumphantly gave him my actual diagnosis so he couldn't keep on that vein for long.

One thing that also surprised me was how kids react better to the IC info than adults! For example, I am a 4-H leader & had to disclose some info about IC since it has affected my work with the kids & their animals. The leader I told didn't seem to think it was a big deal/or care. The kids (and some of their parents) were extremely supportive about it & seemed to accept it as a big change in my life that I needed help with! I was really amazed at how they handled it & love them all the more for it.

[OrlandoP]

Kadi, you are amazing. I can't tell you how much I get from your posts. This is so helpful! I remember last year when I was so terrified to do my usual travel, I read some posts on your trips to Spain.

You are an IC hero.

So are the rest of you.

I have mentioned before that I talk about chronic pelvic pain. First, a lot more people can "get it". Second, it tends to shut them up faster. From the psychological perspective, humans have a tendency to fear and be repulsed by bodily functions. On the other hand, I'm amazed at what being honest about the disease has done to bring folks together, and because my family knows it's IC/PBS, they have found people with the same disease and understand me better. My aunt is proud of me for continuing to work, her friend who has it is on disability.

[mary124]

I have a co-worker (I call her a co-worker but I really don't work with her on any basis. I see her in the hallways, etc. Found out a few years ago that she has IC; (I think I was passing out chocolate for Holloween one year when she said chocolate is not in her diet (I automatically thought diabetes- but she told me IC so we started talking a little). I also met by chance at jury duty - when I was debating in line about getting an excuse when the person in front we were discussing the medical reasons of why and he said he had IC (this man is also the Leader of our local support group).

[kadi]

Orlando,
Thank you for such a nice compliment. I'm really glad my experiences are useful & feel very grateful to everyone here who has helped me through so many IC experiences.
Your comment was a real lift to my day,

[Zygala87]

When I eat out with friends I look at the menu for IC friendly foods. Most of the time there are tomatoes in the food. I ask the server if they could ask the cook to leave out the tomato. Usually this is not a problem. When asked what IC is I often tell the person it is like having a constant UTI but with the help of my Doctors and being careful about what I eat, it is under control. Depends! " If you know how to use a computer just put IC into your search engine" I do understand why the uneducated would first think of that due to the mention of the bladder. If I care about that person I don't mind educating them. If I don't care I just roll my eyes and walk away. I'm happy that today many more people do understand IC. That was not the case just five years ago. One always has hope when all else fails. Hugs, Ziggy