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!" :loco:

.... 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!":bonk:
.... 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.:smile tee

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

[LithEruiel]

I get the "you're so young" think a lot. It's really frustrating. Usually people say something like that to me or something like "that's too bad" and not much else. This one guy I was talking to online sent me a detailed message asking me about how I deal with having to go to the bathroom so much and saying I must not be able to have sex. I hardly knew him so I just ignored the message and stopped talking to him. It was way too personal and really bothered me.

[sabernst]

I know this thread is a little old, but I'd like to get it active again, as it was EXACTLY what I needed today... I've gotten similarly strange responses when explaining IC. Once I told a friend that I couldn't drink certain things because I had a "condition." He revealed to me that he had Systemic Lupus (another painful disease w/ no cure) but when I told him I had "a bladder disease" he apologized profusely, as if he had just forced me to disclose something truly embarrassing... I still try to be as honest about it as possible to show people that it is not embarrassing, but still there are people (like coworkers) with whom I don't feel sufficiently comfortable.

My office is small and tight-knit and our boss likes to show his appreciation by buying us food and drinks. Of course, I can never have any, but I still appreciate the gesture. But as much as I've gotten accustomed to watching other people eat delicious things, I'm not always in the mood to do it. So when people gathered in the conference room to stand around and eat pizza (I loved pizza) I thought, I'll sit this one out. Apparently, this was unacceptable, and my boss came to my office and gave me a lecture about leaving myself out of things and sending the wrong message. I was so blindsided I couldn't explain. And he knows about my food restrictions. Does anybody ever feel like they get misunderstood constantly because of IC? Even people who know I have restrictions/problems sometimes think I must also coincidentally be lame or uptight and it's very hurtful.

One last note about revealing your IC. I've had IC for two years and never met another soul with it. Two weeks ago, my mom's neighbor responded to a thank-you card my mom sent her for feeding her cat. The woman accidentally included the ICN address in her email response. Turns out, I was living next to someone with IC for 22 years! You never know... Thanks everyone for the support

[LithEruiel]

Hey, no problem! I'm sorry about what happened at work. I can't believe your boss would say something like that!

I've been thinking about something similar to this topic. I'm in nursing school and the unit we just finished up was renal (my favorite) and to my surprise the teacher actually mentioned IC a couple times, although she didn't lecture on it. She said the symptoms were like a UTI, but without bacteria. She said to read about it in the book, which I already did. The book just has a tiny paragraph about it, less than what I'm writing here and it makes it seem like no big deal - it's an "inflammatory disease with no known cause." Great. I was impressed the book even said anything about it at all, but no wonder people don't get it. All these other diseases it talks about in great detail and it blows off IC making it seem like no bigger deal than a UTI.

[rubymermaid]

All these other diseases it talks about in great detail and it blows off IC making it seem like no bigger deal than a UTI.

I like to explain it like a UTI that never goes away to make things simple. That usually gets most women to cringe. :evilsmile

Although I don't have pain symptoms so even I don't know how brutal IC really could be.

[LithEruiel]

Same here, I don't have the pain, but it's so much more complicated than UTI symptoms...I just don't feel that we're done justice, lol.

[bjwright]

That Depends comment made smoke come out of my ears-- what has happened to civility in society??????

A comment like that is deserving of a rolled eyes and maybe, "Why do you use them?"

Some women are so bad towards other women. I think it's one of the things that prevents women from progressing in society as much as they deserve to.

Now I better:ignore: get off the soap box b4 I say something wrong:headbang:

[LithEruiel]

That's true...especially women who criticize other women for not getting married or having kids...that's not all we can do anymore! But that's just my opinion...

[ICNDonna]

sabernst, one thing you might do is to tell your boss that you are very sorry you couldn't eat with the group, but that you have many food allergies and didn't want to take the risk. I don't think it is at all dishonest to describe our food sensitivities as allergies --- our bodies do have a reaction, sometimes severe, to some of our foods.

:grouphug:
Donna

[Mothergoose]

sabernst

I know everyone is different and each situation is different. If you by chance you know ahead of time your boss is going to bring in food and drinks, ask your boss to specically order something you can eat. For example I ask for one pizza to be ordered 1/2 with just dough and mozzerela cheese. If you don't know ahead of time talk to your boss about wanting to be involved and if you were given a heads up on food coming before it is ordered you could get something you could eat. When there is nothing else, I order a plain green salad.

If I am going to a function which I am paying for and includes a meal, I phone ahead of time explain I have strick dietary needs and ask what the menu is, if there is not going to be any food i can eat i ask for something to be kept out before it is marrinated or before the salad dressing is put on etc. Yes I am quit forward about it, I don't go into alot of detail as to why and I am sure they think I am nuts or just plain picky, or even wonder why do I bother to buy a ticket to a meal if i need such special care, but the fact is sometimes it is fundraiser which I want to support, or it is something my family wants to go to and I don't want to be left out.

Just last Sunday ev my son's grad class was having an Indian dinner as a fundraiser, we bought 10 tickets and then invited friends to come with us, I knew none of my tackicts were going to work, so I just made myself a bagged dinner and went anyways. No I could not enjoy the meal everyone else was eating but I did enjoy the company, I did pay for the ticket but it went to a good cause.

Sometime we just have to speak up for ourselves, I totally get you not wanting go in and sit with others while they are eating something you can't and would like to be eating.

If nothing else with IC we need to be proactive and how much info you give out about it depends on who it is and how comfortable you are about telling about it.

Have a good day MG

[ICNDonna]

I can definitely relate, MG --- we went to a crab feed last night --- paid $25 a plate! --- and the only things I could eat were the crab and one plain salad dish. It made the dinner VERY expensive for me. Plus there was nothing IC safe to drink. I actually went to the kitchen and asked for some water; they server said he didn't know if they had any --- I suggested the water faucet. I did get some water. The only good thing I can say about it is that it was for a good cause!

Donna

[Mothergoose]

I know what you mean I actually took my own water with me.

MG

[astone0611]

I'm jumping on this opportunity to put my 2 cents in.

Just the other day I was riding in my boyfriend's Jeep (yes, never a pleasant ride), and he could tell something was wrong so he asked how I was doing...and I honestly told him I'm in pain..."Have you ever considered that maybe your mind is causing the pain?"....I kid you not, I was so tempted to slug him one right there in the moving vehicle and I'm really not a violent person. He normally isn't that insensitive, I'm sure he was having a bad day before we hung out...but I did NOT need to hear that comment...its enough to make me see red.:rant:
Its frustrating that IC is made out to be one of those underground diseases. I have yet to meet someone with IC, granted I am young (23) so I know I will eventually meet someone else along my Life's path, but now would be a great time to have some support after being newly diagnosed. If it wasn't for this site, I don't know how I would have made it through so many flares.

[LithEruiel]

Welcome Astone! Wow, it can hurt to ride in a Jeep even if you don't have IC...geez! My boyfriend is supportive, but sometimes he'll say things that make me think he's not listening at all...once he asked me if there was a cure for IC after I'd gone on and on about having this forever and not much I can do about it right now not having insurance, etc...it made me so mad...if there was a cure I'd do it regardless of cost!!

Sabernst - MG has some good ideas - can you eat pizza with white sauce?

Donna - I can't believe they didn't offer water at that dinner! Reminds me of when I went to a Halloween party and all they had to drink was a keg of beer...no pop even (this was before I had IC, but I've never drank beer or much alcohol at all.) I drank water from the fridge dispenser.

[ICNDonna]

They were selling beer and wine and had both regular and decaf coffee --- apparently I'm the only one requesting water. I couldn't believe it either!

Donna

[LithEruiel]

Wow, I didn't drink beer, wine OR coffee even before I had IC! What a strange selection.

[Mothergoose]

The dinner I went to only had coffee reg and decaf.

I will be going to the next grad meating it was a grad fundraiser and I will be telling them that they need to offer drinks, even if people have to pay extra for them, most people would gladly buy a drink if there is nothing else.

I am sure it was just an over sight on someones part.

MG

[LithEruiel]

Now that I think about our school picnic last year only had lemonade and root beer to drink...what choices! I thought water was a pretty standard choice.

[rjyoon]

I usually explain that I have ulcers in my bladder & certain things cause them to hemorrhage. That shuts people up really fast! I don't have to explain pain & frequency after that, and I think it stops the "Depends" comments.

[sabernst]

Thanks for the support and suggestions! I'm extremely diet-sensitive so at this point I don't eat anything I don't prepare myself (or that doesn't come with ingredients on the side) I'm very used to it by now and it actually makes my life less stressful than when I tried so hard to be "normal" and ended up with flares 50% of the time.

Astone- I think we all understand how much it hurts to have someone (especially a loved one) suggest that your pain isn't real. I had an ex-boyfriend who would occasionally make comments like that. Even when my Elmiron finally started kicking in and one day I noted excitedly that I had drank 3 glasses of water in a row without peeing, he said, "I think maybe you were just distracted. Going to the bathroom so much can be a habit." One of my biggest regrets is that I never told him how hurtful and invalidating that was. I think to some extent people say things like that because they just can't (or don't want to) understand that there is pain that medicine can't instantly take away. But you should be hopeful! I am 25, diagnosed 2 years ago and after a year and a half of Elmiron and physical therapy, like many others, I am close to pain-free.:)

[ICtampa]

I am 23 so I have also gotten my fair share of "you are too young to have a problem like that!"...makes me so angry. The way I have dealt with this is by responding, "I was born with it so there isn't really anything I can do about it". Of course this is a lie, but some people could be born with it and let's face it if you are talking to someone you don't want to about IC this is an easy way to get out of it. For some reason people are more sympathetic when you are born into something. I usually leave the conversation at that though..I'm not looking for a pity party, I just don't want to have to constantly explain why I AM NOT TOO YOUNG TO HAVE A CHRONIC PAIN DISEASE. :)

[LithEruiel]

Yeah, I hate that. Younger people than us have other terrible problems besides IC, it's not unheard of. I think it's possible to be born with IC...I think it's genetic and just stays dormant until it's triggered by UTI, surgery, accident, etc.

[rjyoon]

I was 14 when my IC started, so 23 is not too young. I've read of 5 year olds having it.

[amanda.d]

Before I was diagnosed I was in so much pain and scared to eat. I stopped eating just about everything but milk, water and grilled cheese, I lost about 15 lbs in 3 weeks. I seen a girl that has known me for years and she told me I needed to stop losing weight. Not thinking I said well I have a disease and can't help it.....you should have seen the look of terror on her face. I so stuck my foot in my mouth before thinking about it. Quckly I replied I am not going to die...which probably made it worse. She works at Wal-mart, so next time I see her I will have to explain to her I didn't mean to say it like that, it's just stressful being newly diagnosed. I think next time I will think over my answer...lol

[LithEruiel]

I don't think you said anything wrong, Amanda. That IS why you were losing weight...She really shouldn't have jumped to the conclusion that you were doing it on purpose (if she did).

I have a really strange sense of humor, but I've been thinking of making a hoodie that says something like "Interstitial Cystitis - all the cool kids are doing it." Something weird that makes no sense that might make people ask questions and show that I'm not embarrassed about it. :D :loco:

[bluegoo06]

Im glad this thread is active again, being 24 with IC is surely a challenge. Seems like everything at this age revolves around alcohol (not to say that i didnt used to enjoy it before the IC diet). Its hard thing to get used watching everyone else eat stuff you love, but dont want to eat to cause a flare.

I am "blessed' with horrible coworkers like some of the others have mentioned. They mean well but are very critical. I would get the depends comment from them. Being recently diagnosed it has made social functions at work hellish. I have a small office, so everyone has thier opinion on everything. We have a lot of pizza, I had food posioning over the weekend from eating pizza (with white sauce, learning to love it) and on monday, we ordered that same pizza. They wouldnt even order from another pizza place to include me. They dont know I have IC, and if I were to tell them (none of thier business ) I would be ridiculed and harrassed to no end. I can handle be ridiculed for my accent (recently moved from the northern US to the southern, so I sound funny to them), but no way i could handle ridicule for IC.

Anyone have any suggestions on how to deal with very critical co workers? I have heard saying i have allergies or a special diet...but those would also get ridiculed even though IC is a special diet.

I also agree it is hard having the one you love give harsh comments. I know they mean well. When going grocery shopping, seems to always be sample day when I go, I always get offered "try this, try that". Kinda rough not being able to try anything. I just keep saying I cant eat that , any suggestions on how to make them understand? I think they feel helpless because they cant help really...

[ICNDonna]

You could try saying, "No, thank you." Say it with a smile and nobody can criticize you for that.

:grouphug:
Donna

[wildblueiris]

I find simple answers work the best: I already ate; I have food allergies; I have a medical condition that food/drink aggravates. Then, I change the subject to something casual like the weather or current events.

If business or casual acquaintances want to know more than that, I say I have a chronic health condition and that food/drink incites pain. If business or cas acquaintances want to know more, I answer that I appreciate their interest but that it's easier to deal with if I can focus on other things like the party / dinner / picnic / what have you. Usually, they let it drop there.

For those nosy or insensitive folks, I sometimes joke, "What, is this the Inquisition!?" and then change the subject. For those who are dismissive that IC is "no big deal" or "it's all in your head" or "you look fine to me", I consider no answer is good enough for them and excuse myself.

I think of that shirt, I AM MORE THAN IC, and maintain perspective :D

[wildblueiris]

Bluegoo06, just the other day a friend was offended when I couldn't eat chocolate TastyKakes she decided I MUST try. I explained chocolate makes a health condition very painful, but she persisted that just one couldn't hurt. When I answered that unfortunately, one would hurt but that I appreciated her thoughtfulness in thinking I'd like them, she became annoyed and has been cold since that exchange.

Yes, my feelings are hurt (we're human and I thought she was a close friend) but I thought about the fact that we have to take care of ourselves and we can't jeapordize our health just because some others don't or won't understand. Some will be cold, tease us, laugh about not eating pizza or chocolate or whatever the food/drink of the moment might be - but it reflects on them, not us.

I try to channel that hurt/disappointment into compassion/support for others facing the same - like alchemy, you know? My comfort is that we're not alone in dealing with this! Hugs to you!

[LithEruiel]

Seems like everything at this age revolves around alcohol (not to say that i didnt used to enjoy it before the IC diet).



That seems to be true for any age group...I'm 26, but the people I go to school with range in age from 19-45+ and sometimes it seems like all they talk about is alcohol. We just had finals so it was especially bad (all the comments like "After this I'm going to get drunk.") This one guy really made me mad a few weeks ago...he's an EMT and he stereotypes everyone...it's always everyone's own fault they need the ambulance (yet he's a smoker and couldn't do the exercises we were doing with seniors) or they're drug seekers or this or that. Anyway, we had this fake case study to do about a college student who had seizures and we were talking about how you shouldn't drink while taking seizure medication and this guy of course pipe up "but he will!"...he said it a couple of times and I got mad and said "Not everyone drinks!!" I rarely drank the first time I was in college before I had IC and I don't drink now. That comment probably wouldn't have bothered me so much if he didn't say things like that all the time.

I'm sorry your coworkers are so terrible, bluegoo. I've definitely worked with people like that. I don't think there's anything you can do to please them - if it wasn't for your diet/IC they'd find something else to criticize. I agree with what wildblueiris said...nothing's going to be good enough for them, so just try to be polite and change the subject or get out of there!

[Mothergoose]

For those of you who are young it does get a bit easier you will find you don't let other peoples comments bother so much, and as thes people get older and get health problems too, that they don't think they will ever get it is only natural, they will become a little more sympthetic to your situation.

MG

[skybluesoul]

Let me just say that I really found this thread helpful! I'm 27, and very few people know the details of my medical condition. I also get variations of the comment "you're too young to be so sick" often. I was on a medical leave for 5 and a half months recently, and most of my coworkers didn't ask questions when I got back, which was a blessing. My boss was less than sympathetic, which was horrible to go through, but luckily the backlash has died down some.

I'm going on vacation in about a week with my many members of my husband's extended family. I think it's going to be a challenge for me, because they all love to eat big meals and drink alcohol. I'm sensitive to a lot of foods, so it'll be tough to refuse some things. Besides my mother-in-law and father-in-law, the other people know very little about my IC and PFD, so it'll be interesting to see what they ask me. I get very uncomfortable talking about my issues with anyone but immediate family and close friends, so as much as I'm looking forward to relaxing on the beach, I'm anxious about the conversations I may have to take part in because we're all staying in the same house together.

-Amanda

[LithEruiel]

Well I hope you enjoy your trip Amanda! I wish I could go to the beach this year, it sounds great. I don't think I'd want to go with my boyfriend's family though, haha.

Anyway, a lot of people say that they have a lot of food allergies and that seems to work. I'm a lot more direct about things and I usually just end up telling people I have IC and explaining it, but I understand why people wouldn't want to. I wouldn't want to say anything about it to a lot of people I know (like most people at work.) Is there anything else you're worried about besides the food/alcohol questions?

[skybluesoul]

Those are the main things I'm worried about as of now. I'll just have to decide what I'm comfortable saying and stick with it. Of course there's always the concern of the 8 hour drive getting there, but I think my husband and I have become experts on where to find public toilets. I don't plan on taking Depends (lol), but I'll probably wear a Poise pad just in case. I always hated the thought of doing that, but since my diagnosis, I have come to accept the fact that sometimes it's necessary to alleviate the stress of having to find a bathroom. Last year, I had a horrible flare on our drive home (we had to stop every 15 minutes or so for a few hours), so I've learned my lesson!

[LithEruiel]

Ugh yeah...I was thinking about it though and there's a lot of places I would have never seen if I didn't have IC and didn't have to find bathrooms. Nothing exciting, just different stores and stuff, but still lol.

[kadi]

Once I got comfortable talking about my IC, other people's behavior seemed to get better. I'm now just pretty matter of fact about it* - "I have a rare genetic illness that damages the lining of my bladder and that means I can't eat this & that. But it's worth it to change my diet to feel better & I'm really happy to be feeling better these days." Then I change the subject quickly to something else so they look like a jackass if they pester me about it. Doesn't stop everyone, but does stop most...

*Unless it's at work & I don't know the people well. Then I just say I have food allergies.

[Godsgirl89]

I'm jumping on this opportunity to put my 2 cents in.

Just the other day I was riding in my boyfriend's Jeep (yes, never a pleasant ride), and he could tell something was wrong so he asked how I was doing...and I honestly told him I'm in pain..."Have you ever considered that maybe your mind is causing the pain?"....I kid you not, I was so tempted to slug him one right there in the moving vehicle and I'm really not a violent person. He normally isn't that insensitive, I'm sure he was having a bad day before we hung out...but I did NOT need to hear that comment...its enough to make me see red.:rant:
Its frustrating that IC is made out to be one of those underground diseases. I have yet to meet someone with IC, granted I am young (23) so I know I will eventually meet someone else along my Life's path, but now would be a great time to have some support after being newly diagnosed. If it wasn't for this site, I don't know how I would have made it through so many flares.

I would have been absolutely livid with him! I have yet to be diagnosed but I am uncomfortable at the least, in pain at the most during the average car ride. I can't go for more than 20 min. tops before I have to get out and use the bathroom. Most of the time it's closer to every 10-15min.

I remember one time in February my family and I decided to go to a theme park, despite my apprehensions about going with this painful bladder issue. My mom was exasperated and said that I had to get out and do something. It's not like I didn't want to, I just knew it would be hard to control my problem driving for a long time to a theme park, let alone inside where there would be long lines for bathrooms,etc. Well, somehow or other we missed a turn and weren't able to pull off somewhere so I could use the bathroom before entering the park. I was in so much pain and we were stuck in traffic trying to get into the park. By the time I made it to a restroom, I was in tears and having bladder spasms (which I don't usually have). My bladder was so irritated that I begged my dad to drive me back home. I couldn't enjoy myself and I was ready to yell obsinities at my mother who was the one responsible for us missing the turn to get to a bathroom. I love my mom but I was so so angry and upset at the time. Believe me, I understand.

[h808]

omg i don't know what i would do if somebody suggested depends! :mad:

i just say i have a bladder disease. i find that even talking about the bladder makes most people uncomfortable so they usually drop it. if they push the issue or want to know what it's like i just say it's like a uti all the time. if they have more questions i suggest they google it.

[Zygala87]

Astone0611 someplace it is written (may be Dr. Moldwin) that endstage IC can be like endstage cancer. You might ask your dingbat boyfriend if that might be in someones mind as well! If ever you find him in great pain you might ask if it could be in his mind.
h808 good explanation. It really does seem to sum it up. That is the way IC feels to me anyway. For those who are just starting down the long IC road please have faith. I've had IC for 6 years and I really am much better then at the begining. Visit here and see what has helped other people. An understanding Doctor is a perfect start to feeling better. Sometimes that take 3 or 4 tries. Difficult but not impossible. Hugs, Ziggy