Crohns a laughing matter?

[Andrea_3]

I recently came across a group called "my crohns colitis team" on Facebook. They seem to try to include "humor" in their advertising. Saying things like " when others don't give a crap we do" posting pics of bathroom sign with running male and female, a picture of a man in a bathroom stall with his pants around his ankles. Even using the nickname "crohnies". I understand some feel the need to try to put humor into things, however I feel the approach is now labeling , degrading and embarrassing.

For me it's not about running to the bathroom. In fact. It's the opposite. It's about severe inflammation that has put me in the hospital twice, it's about severe pain. It's about not being able to eat and losing weight. It's also about my autoimmune disease that has also caused psoriasis on my neck and scalp and iritis in my eye. I can't help but to be completely offended by that groups approach.

Maybe they have helpful information, maybe they have help some people I wouldn't know because I refuse to join or support that group with the way they feel they need to attract readers. There are other organizations with helpful information that's not degrading that I will choose to follow.

 

[lenny]

People find different things funny. It's just personal taste, not wrong or right.

I joke around with my son (who has Crohn's) in ways that would most likely bother others, but we're very close and we get each other. We joke about death and our hope that we will both soon be hit by a meteorite. Most people don't find the subject of suicide funny, but we do.

 

[Smika]

Like Lenny said, humor is personal taste. Im sure they are not trying to offend anyone or be degrading. Personally that stuff doesnt bother me. I have to plan my whole life around bathrooms!!! Whether it's work, travelling, etc. For me, I would rather the pain from flare-ups (which I suffer from on a regular basis), then be embarrassed about the "noise and smell" of having to go. The bathroom is the absolute worst part of this disease for me Mind you I sometimes go up to 20 times a day so I'm a frequent user. Im sure this group you're referring to does not mean to imply that this is the only symptom or that other symptoms are irrelevant. At least I hope that's not what they are doing as it is a serious disease.

 

[2thFairy]

Making a very personal issue into a humorous one is the only thing that has gotten me through my illness and now stoma. I laugh about everything as much as I can. If not, I would be a hermit out of embarrassment and needless shame.

 

[VeganOstomy]

Humor was/is incredibly valuable for me in the context of living with a chronic illness. Despite the nightmare that I've been through with Crohn's or side effects from drugs, laughing at it, at least for me, shows that it hasn't beaten me.

 

[Andrea_3]

I can understand laughing at it at home or with loves ones. Etc. but when it's labeled as a bathroom disease for people who don't truly understand it. To me, it's embarrassing. Also, the pain I feel puts me in the hospital and my blood would show an infection. I also get diverticulitis along with the inflammation so I think mine may be a double whammy and why I don't see the humor in it. It's horrible pain and I get severe infection with a flare up. I remember my temperature actually was high then went in reverse to hypothermia and I was admitted into the hospital. I guess that's why I find it upsetting to see people, especially an organization make fun and that is supposed to be providing helpful information. I cannot tell you my fear I get when I feel that pain on my side because a times it quickly turned severe.

 

[firemama]

Quick joke popular with my 8 yrs old DD who has Crohn's . What did one jedi say to the other jedi on his way to the bathroom? May the farts be with you!

Yes, it is a serious disease and we are still trying to get my daughter in remission. The humor may not appeal to all, but hopefully it raises awareness, and if someone clicks on the ad, perhaps the group provides further info?

 

[VeganOstomy]

Yes, I can agree that if we use humor, it must be to an audience that understands or you do end up giving the general public the wrong idea about what living with this illness can be like.

 

[addyp]

My husband and I laugh about a lot but lately it's not been funny and very scary dealing with this illness. I do see how ppl need to find humor tho as it lightens the load. I'm sorry if it had offended you Hugs

 

[Maria2009]

I'm a person that lives with crohn's everyday. It help's me deal with it. I'm not going to let it me bet me.... So I will laugh and have a great time. I don't now what it's going to bring me tomorrow.

 

[2thFairy]

I tried to find the Facebook page you were offended by and the only thing called "my crohns colitis team" is https://www.facebook.com/pages/MyCr...living-with-Crohns-or-colitis/269519006582518 . I didn't see any humorous posts or pictures at all. Can you provide a link of the page that upset you? I am wanting to understand better.

 

[Smika]

I can understand laughing at it at home or with loves ones. Etc. but when it's labeled as a bathroom disease for people who don't truly understand it. To me, it's embarrassing. Also, the pain I feel puts me in the hospital and my blood would show an infection. I also get diverticulitis along with the inflammation so I think mine may be a double whammy and why I don't see the humor in it. It's horrible pain and I get severe infection with a flare up. I remember my temperature actually was high then went in reverse to hypothermia and I was admitted into the hospital. I guess that's why I find it upsetting to see people, especially an organization make fun and that is supposed to be providing helpful information. I cannot tell you my fear I get when I feel that pain on my side because a times it quickly turned severe.

Although I can only speak for myself, most of us have the symptoms you described on a regular basis. I've been in and out of the hospital numerous times with those symptoms and much more! I just had a 5 day hospital stay in February for that. However, I still consider this a "bathroom disease" for the simple reason that I spend 60% of my day in there oo:

Im still not defending this facebook group you're talking about as I havent seen it so I cant give an opinion on it. I just simply will not let this disease control me or embarrass me. If people can't understand what Crohn's really is then it is they who should be embarrassed about their lack of knowledge or sympathy.

Laughter truly is the best medicine :rof:

 

[24601]

I haven't seen this group on facebook or their ads but just wanted to add another comment on the side of those of us for whom this isn't a 'bathroom disease' because I do understand how it can feel frustrating when people do not understand the range of symptoms or the extent to which they affect us.

My symptoms were always pain and fatigue (more recently it has become a "bathroom disease" for me though!) and those were the major symptoms that I was dealing with as a teenager and young adult and I know that I felt a stigma about having Inflammatory Bowel Disease - you know because the word bowel was in there. And I certainly felt that people would be assuming that I was always running to the bathroom with diarrhea - and, well, then that certainly wasn't me.

I want to make it completely clear that I think we are all on the same team. And I understand very well that humor helps us deal with a lot - and we have a lot to deal with. My family has always liked a bit of toilet humor...and I have a brother so he's always found the hilarity in my disease. Here's his favorite joke that he likes to shout out at me when he returns home from work and I'm (almost inevitably) in the bathroom: "Another hard day at the stool factory?" to which either he or I reply "Well, the only employee is an a$$hole."

It gives us a laugh but at the same time I don't feel made fun of or that my suffering is ignored and I just wanted to express sympathy with those who are made to feel like that. And to say that I would very much have felt that way at 17 when I was diagnosed or even in college when I really didn't like to tell people that I had a "bowel disease". Now at the relatively old age of 36, having been through 4 surgeries and really getting quite close to dying from this disease a few times, I care quite a lot less about that embarrassment factor and I will absolutely set people straight about exactly what it can mean to survive this disease. And I will laugh at it with the people who love me because that is also how we get by.

 

[Andrea_3]

It's on their ads so very hard to link. It shows up on when scrolling through. I took a pic but I'll have to figure out how to post it on here. Again, not saying joking with family members is bad. We all have. My point is when you're bringing awareness about a serious disease to the public. Doing it in this way is wrong.

 

[UnXmas]

I like laughing about it. But there is a time and a place for humour about it, some could go too far, and people shouldn't be forced to endure jokes if they don't see their illness as a laughing matter. As long as the humour is in a way that people can opt out of if they want to, or not opt into in the first place, then it's good to have it there for people who find laughing about it helps. I think this can include humour in public. An advert or other public representation of Crohn's that uses humour can still raise awareness and provide information. The humour can be used to attract people's attention, then the advert can go on to teach people the serious side. I can see disadvantages in only teaching people that Crohn's is extremely serious, that they can't joke with people who have Crohn's. That could make some people avoid discussing Crohn's altogether, they may not know how to act and talk to someone with Crohn's for fear of saying something terribly inappropriate.

I've been very seriously ill - in Intensive Care, had ten surgeries, etc. I don't think the severity of your illness makes a difference, it's just what you're comfortable or uncomfortable with.

Also - Crohn's isn't my only medical problem. I have medical symptoms that don't involve embarrassing body functions, but I also have bladder problems, and gynaecological problems. I laugh about all of them, including the un-embarrassing ones that are extremely serious, like being incredibly underweight. Last year I had a mini stroke, and for a while I couldn't talk and my right arm and leg were paralysed. My speech was the first thing to come back, and the first thing my dad and the doctors did was say, "and we thought we finally found a way to shut her up, trust her to get her speech back first". I don't think I'd treat my embarrassing symptoms differently from my un-embarrassing ones in this respect. It would be a bit strange to me to treat my bowel problems seriously because there are social rules that tell us that they're gross.

 

[brooklyn23]

If I couldn't laugh about the worst of my pain, I would hate my life so completely. I even use it to bring a smile to other people too. Friend has period cramps -- "Wanna trade?" Instant laughter.

A lot of people don't know about this illness, and for the most part, a lot of people don't want to because it's "gross." So humor to break the ice? Might not be so bad. Again, I can't say the ads in question because I haven't seen them.

But, I can say one of my favorite awareness sites is The Great Bowel Movement and I think that is just hilarious.

 

[Johnnysmom]

The joking doesn't bother me, and I think people have a right to deal with their illness in whatever way gets them thru the day. I do however dislike the disease always being represented in ads with people sitting on a toilet and running to the bathroom. I have a 14 year old with crohn's and this embarrasses him. His bathroom habits are personal and it just feels like there is a perception put out there and my son feels like his friends just picture him on the toilet. I cringe whenever I see those ads

 

[Andrea_3]

The joking doesn't bother me, and I think people have a right to deal with their illness in whatever way gets them thru the day. I do however dislike the disease always being represented in ads with people sitting on a toilet and running to the bathroom. I have a 14 year old with crohn's and this embarrasses him. His bathroom habits are personal and it just feels like there is a perception put out there and my son feels like his friends just picture him on the toilet. I cringe whenever I see those ads

I had contacted this organization expressing just that. There are kids that suffer from this as well and the affects this can have on them. I haven't seen the ad w/ the man with pants to ankles lately but the other is still showing up. along with their "phrase".

Its better to just let people laugh and joke themselves than to give others an opportunity to laugh and make jokes at others.

 

[crohnsinct]

Yeah. My daughter hates one of the drug commercials on TV that only talks about the bathroom issue and shows a person slowly wandering looking for a bathroom. She say A) I can guarantee a person with IBD doesn't slowly wander looking for a bathroom...we all out sprint! and B) this disease is about so much more than the bathroom no wonder people don't understand!

I would expect more from a drug company.

 

[brooklyn23]

I wouldn't actually expect more from a drug company. They spend more money on advertising than R&D these days. :/

 

[UnXmas]

In the UK, there is no advertising of prescription medications. I wonder if that has led to a different public perception from that in countries where there is.

 

[brooklyn23]

From what I gather, most pharmaceutical ads show symptoms generic enough to inspire people to go to their doctor and ask for something. Health care in the US is a hot mess.

 

[24601]

Being a Brit the advertising of pharmaceuticals is very strange to me (both tv commercials and print ads) but the thing that always seems the oddest is the length of time they spend talking about the side effects. It's always perplexed me that it could work out to be beneficial to the pharmaceutical companies to spend money on advertising to patients when they are compelled to go into so much detail about the possible side effects. I just can't believe it wouldn't be better for them to just market their drugs to the doctors and not directly to patients.

I have wondered if more awareness of the nocebo effect might reduce the amount of advertising to patients.

Sorry for going OT I just find that really interesting. But despite finding the ads strange I do watch them and think maybe any awareness raising is good? Although we don't have ads in the UK and I rarely meet someone who doesn't have a friend or relative with Crohn's or who hasn't heard of it so I guess that highlights the importance of being open about it (which - kinda bringing it back to the original topic - for some people being open can mean talking about the "bathroom symptoms").

I was reading the "Is Crohn's worse than cancer?" thread yesterday and read some people saying that telling people that you have a diagnosis of cancer would never get a laugh but telling someone you have a diagnosis of Inflammatory Bowel Disease will. I have to say that no one has ever snickered or giggled when I told them I had Crohn's disease. I do tend more often to not to say IBD (or even Inflammatory Bowel Disease) as people seem to confuse that with IBS and are more likely to underestimate the severity so I don't know if that makes a difference but no one has ever laughed or even smiled when I've said IBD and explained what it is. When I was younger and more prone to embarrassment I used to just sometimes say I had an immune disease that affected my digestive tract - no need to say bowel and make people think particularly about bowel symptoms. And it's not untrue - plus I felt particularly justified because Crohn's was so poorly understood and our diseases are just collected together under the umbrella of Crohn's and felt that since my symptoms were quite different maybe my disease was too. I felt like even saying Crohn's was pointless because it didn't seem to mean much in real terms - it just associated me in people's minds with someone they knew with different symptoms to mine. If I said I had Crohn's I always made a point of saying that my main symptoms were pain and fatigue - which was true and I wanted to raise awareness about the range of symptoms we have but I admit that I also wanted to distance myself from the gross symptoms.

Nowadays I do feel it's important to stand together and raise awareness of this collection of Crohn's diseases.

I think I've learned to be a bit more robust though and get a bit of perspective on it - after all we all poop. In fact, a lot of friends and just people in general like to discuss bowel habits and concerns with you when you have Crohn's and this definitely tests my instinctive revulsion about such things. I try to suppress it because clearly they aren't as squeamish as me and I think that's a good thing! And I don't think we should discourage people from talking about bowel habits because reticence about such subjects can cost lives. If people feel able to talk about blood in their stool or change of frequency or anything unusual then they are more likely to seek medical attention and detect bowel cancers sooner.

This is getting a bit long but I really just wanted to say that I have learnt that while I have gotten embarrassed by such things in the past, most people aren't nearly as worried about talking about poop and bowel movements as I am. In general (and this is a generalisation I know) guys find them amusing - but usually more in the "we're laughing at the poop" way rather than laughing at the person pooping especially if they're sick. I'd even say a majority of guys like talking about their own poop, the act of pooping and even find it fascinating. And while I don't feel I've observed the same relish in talking about such things with most women, most women it turns out do actually relate to having gastro symptoms with their menstrual cycle. Then you add in all the experiences during pregnancy - bloating and hemorrhoids - and you find that more people than you ever would imagine go thorugh embarrassing GI stuff at some point in their life. We, as Crohnies. just get it for our whole lives pretty much, but I think it's important to remember that not only do we all poop but we all will have embarrassing poop related issues at some point too. I mean something like 75% of people will have hemorrhoids at some time in their life with all sorts of causes - even the very healthy can be prone to them for various reasons like weightlifting!

People will laugh at these things, because that's human nature, but that doesn't mean they don't take the issue seriously or aren't relating to the suffering. For those of us with delicate sensibilities, I think it helps to remember that other people aren't always thinking what we think they are when they joke about such things.