I was wondering how others deal with the subject of telling people what's wrong with them. It's so embarrassing! I'm not sure why it's so hard for me, but even telling close family specifically what I'm dealing with (perianal fistula/abscess) has been difficult for me. I don't want to gross them out, but if I don't tell them, they misunderstand or don't realize how challenging things are. Most of the time they don't know what that means anyway. I tell people I have Crohn's, but then I've had them ask "What does that mean? What are your symptoms?" I don't want to seem like I'm keeping it secret, or that I'm too private to talk about health issues with them, because that's not really it...it's more just icky and embarrassing when it's in your rectal area...at least to me. I'm really interested to hear how other people handle this. Thank you.
What do you tell people??
- Thread starter aloe
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Jim (POPS)
Jim (Pops)
Aloe,
First of, welcome to the forum. I use to have a hard time telling people about my crohns but not anymore. For the most part if they don't know what crohns is I just say "it's like having the flu all the time." I don't go into detail much unless they seem like they are trying to understand. It is very hard sometimes. And sometimes I say "Do you really want to know " "are you sure"
I'm also from California, glad to see we are getting some "Sunn Ca. people in here"
I find out alot going to the chatroom. The people there are great, they have turned out to be like family.
Jim.
First of, welcome to the forum. I use to have a hard time telling people about my crohns but not anymore. For the most part if they don't know what crohns is I just say "it's like having the flu all the time." I don't go into detail much unless they seem like they are trying to understand. It is very hard sometimes. And sometimes I say "Do you really want to know " "are you sure"
I'm also from California, glad to see we are getting some "Sunn Ca. people in here"
I find out alot going to the chatroom. The people there are great, they have turned out to be like family.
Jim.
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I gather Aloe that you are a fairly new member to the crohn's club. Welcome!???? It certainly isn't for everyone, but I think you actually gain some measure of control over your own disease by being able to talk about it. There is nothing to be ashamed of in crohn's. For me, the easiest comparison that I can draw for people (at least those legally able to drink) is that it feels like being seriously hung over all the time without the "fun" of having earned it. I would recommend that you are tactful about when you talk about it - not exactly polite dinner conversation, but I wouldn't shy away from it. You may get a good measure of support from some, and some just won't care. Take the support from those who offer it.
Thank you Jim! I appreciate your input and welcome to the forum. I'm so glad this forum exists! Last I dealt with my Crohn's it was '91, and with no internet I had no idea what fun I was in for (or support).
Anyway, thank you, those are great ideas of what to say. I will definitely check out the chat room.
Anyway, thank you, those are great ideas of what to say. I will definitely check out the chat room.
Thank you shamrock. That's kind of how I've been handling it. It's a little tricky, but I agree, good to be careful about when/where you talk about it.
I was diagnosed with Crohns and had a resection surgery in '91, when I was 19. Then I was pretty much symptom free (or enough to be in denial) until now, when I got an abscess and fistula. Tests are also showing the stricturing is back, so I'll have to go on medication (Remicade) starting next week. I need to go introduce myself in the welcome thread. Thanks for responding!
I was diagnosed with Crohns and had a resection surgery in '91, when I was 19. Then I was pretty much symptom free (or enough to be in denial) until now, when I got an abscess and fistula. Tests are also showing the stricturing is back, so I'll have to go on medication (Remicade) starting next week. I need to go introduce myself in the welcome thread. Thanks for responding!
Hi there Aloe,
I was diagnosed 2 years ago when I was 22, But I'm pretty sure I've had CD since I was 17. I understand how you may find it hard to tell people about what you are going through, I had trouble with it myself until recently, when I realized that there was nothing to hide!
Having said this, I only bother explaining my condition to those that are genuinely concerned for my well being, people that form my support system like close friends and family, and a couple of colleagues that I can count on to take me to the doc if a situation arises while im at work . To passers by in my life - I just have a bad tummy.
You are already so brave to be handling it the way you are, and living with an extremely painful disease. So go ahead, turn the notch on that brave meter a little and tell the people you think that deserve to know about your struggles, about your struggle.
Good luck! And I hope you feel better soon!
I was diagnosed 2 years ago when I was 22, But I'm pretty sure I've had CD since I was 17. I understand how you may find it hard to tell people about what you are going through, I had trouble with it myself until recently, when I realized that there was nothing to hide!
Having said this, I only bother explaining my condition to those that are genuinely concerned for my well being, people that form my support system like close friends and family, and a couple of colleagues that I can count on to take me to the doc if a situation arises while im at work . To passers by in my life - I just have a bad tummy.
You are already so brave to be handling it the way you are, and living with an extremely painful disease. So go ahead, turn the notch on that brave meter a little and tell the people you think that deserve to know about your struggles, about your struggle.
Good luck! And I hope you feel better soon!
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I go with "do You really want to know" when the asker of the question isn't satisfied with Im unwell. Then I proceed to tell them in all its grapgic details. Most people are astounded that I am still able to walk so if nothing else comes from me telling my story the asker of the question may not be so nosy next time some one says they are unwell. Your illness is your own and you should be able to get to a point where you decide if you need to reveal all that personal stuff. It is no one elses buisiness. You wouldn't feel you had to tell people what was wrong with you if you had Herpes so keep that in mind. I was told to be a little selfish. Its my body and I tell who I WISH to tell. Im through the embarrassing bit now and I think I may actually like shocking those busy bodies. Must be my Scorpio bits coming out
sawdust
Moderator
When my fistula was giving me fits, I wasn't sure what I wanted to tell people. Family and close friends I told everything. Most others knew I was having some problems and were concerned for my well-being. How specific I was depended on how much I wanted them to know. I was as vague as "having some complications with my Crohn's" and as graphic as drawing a diagram and telling a few war stories. :eek2:
xX_LittleMissValentine_Xx
Moderator
It is hard to bring it up. Most of the time I don't really. Unless its my close friends who I kinda want them to know what im going through. Sometimes I start off with "Its a pain in the bum... Literally!"
To my friends who already know where my problems are but probably don't understand it exactly, I kinda joke about it with them.
Like we went to boots and I had to get pantyliners because my wound was still weeping after surgery. I said to them "I'm suffering with bum leakage at the moment!"
Then another one was saying how embarrassing it was when she had to have an injection on her bum. I was like, I get mine out for the doctors all the time! Count yourself lucky they don't have to stick a finger up there!
They get the idea through my comments what I go through!
To my friends who already know where my problems are but probably don't understand it exactly, I kinda joke about it with them.
Like we went to boots and I had to get pantyliners because my wound was still weeping after surgery. I said to them "I'm suffering with bum leakage at the moment!"
Then another one was saying how embarrassing it was when she had to have an injection on her bum. I was like, I get mine out for the doctors all the time! Count yourself lucky they don't have to stick a finger up there!
They get the idea through my comments what I go through!
Aloe, amazingly, in all the years I've had Crohn's, I never had to deal with fissures or abscesses, but always had people asking me what was wrong, due to the extreme weight loss, medicines, why I couldn't drink alcohol, etc. Here is what I learned to do. When they ask what's wrong, I tell them I have Crohn's. When they ask what that is, I tell them it is an autoimmune disease in which my body is attacking itself in certain spots, that Crohn's creates ulcers. I tell them with regular ulcers, once gone those don't come back but with my Crohn's, it is always going to flare up, come back somewhere else if it's removed, etc. As far as the symptoms, I go with the "do they really want to know" theory.
Then another one was saying how embarrassing it was when she had to have an injection on her bum. I was like, I get mine out for the doctors all the time! Count yourself lucky they don't have to stick a finger up there!
They get the idea through my comments what I go through!
I know! I really can't believe how many rectal exams I've endured over the past 6 months. It's the worst, and most people have no idea how often we have to deal with it. It's true you just get used to it after awhile and it's less traumatic. I often wonder how doctors feel about it. I could not handle doing that all day, but they say "it's just another body part." Luckily someone's willing to do it!
Thanks for your input CLynn.
I guess it's just one of those things (another one) that we have to deal with, and it isn't always going to be easy or pleasant. I had one happen yesterday with my eye doctor, where he'd seen Crohn's listed on my record and asked how it was manifesting. It shouldn't be embarrassing to tell a doctor, but he's a friend of my husband, so I was a little, but I told him. But I'm sure he can deal with it.
I dealt with my embarrassment by writing a blog and telling the whole damn world. I've found it's easier when my mother-in-law reads my blog and I don't have to talk to her about it. When I developed my perianal abscess, my sister screamed, "Don't blog about it!" I do think you shouldn't feel pressured to talk about it. I like the other suggestions where you leave it vague and say it's like the stomach flu. Only say what you're comfortable with. When you decide to talk about it more, you'll find that your friends and family will not be embarrassed for you, but offer a lot of genuine sympathy and support.
I do think you shouldn't feel pressured to talk about it. I like the other suggestions where you leave it vague and say it's like the stomach flu. Only say what you're comfortable with. When you decide to talk about it more, you'll find that your friends and family will not be embarrassed for you, but offer a lot of genuine sympathy and support. I used to laugh to myself wondering about my GI...thinking "of all the fields a person could possibly choose to specialize in, why in the world would someone choose to do this all day?".....but yes, we have to be glad some DO choose it, huh?
xX_LittleMissValentine_Xx
Moderator
I used to think that. Especially if I was angry/upset with my doctors! He must be weird if he chooses to do that.
I was waiting to see my surgeon the other day and could hear another lady talking at the desk mentioning his name and "colorectal". I looked at her and she had a huge bum. For some reason actually seeing someone else who I knew he had inspected their behind, made it dawn on me even more what they do. They probably don't like it either.
I think it also depends on your personality. If you're a bit shy and newly diagnosed you're more likely to have a problem with it and maybe tend to develop your own way of dealing with it.
Personally, I felt I had more of a problem with people who didn't understand other aspects of the disease... notably extreme fatigue and just feeling terrible. I mean a) work and b) relatives.
I took early retirement, so work isn't a problem any more... but I had no problem saying: "I've got to go home, I just shat myself"... but I did have a problem saying: "I've got to go home, I'm absolutely exhausted."... so I just told them I'd shat myself anyway!
With relatives... it's an ongoing process, but I think I might be making some headway after 40 years with the disease
Personally, I felt I had more of a problem with people who didn't understand other aspects of the disease... notably extreme fatigue and just feeling terrible. I mean a) work and b) relatives.
I took early retirement, so work isn't a problem any more... but I had no problem saying: "I've got to go home, I just shat myself"... but I did have a problem saying: "I've got to go home, I'm absolutely exhausted."... so I just told them I'd shat myself anyway!
With relatives... it's an ongoing process, but I think I might be making some headway after 40 years with the disease
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If anything, I prefer to just tell people that I have digestive problems and leave it at that. I "don't want people to know too much" about my health issues either.
However, my spouse tells everyone in the world including all our family and friends. So by the time I see any of them, she's already updated them on my most current situation. Which does leave me somewhat embarrassed at times.
However, my spouse tells everyone in the world including all our family and friends. So by the time I see any of them, she's already updated them on my most current situation. Which does leave me somewhat embarrassed at times.
nogutsnoglory
Moderator
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I'm pretty open about my crohns. I'm not embarrassed and like to educate people about it. If I'm interested in them for dating ill be very vague and say I have digestive problems until things are going somewhere in which case I tell them what's going on.
I'm sorry, Grouchy, but I couldn't help but smile at that! My husband is super private, too, and has gout and I'm not allowed to talk about it. I said, "I have butt surgery and tell the whole world, but I'm not allowed to let your mom know your toe hurts?!" You have to love marriage!
xX_LittleMissValentine_Xx
Moderator
I know what you mean about educating people about it. Often it is the people who are asking that end up being embarrassed.
I think this place makes me feel less embarrassed too.
Like just now we had a tomatoey based dinner and I almost said "Does anyone else have reddish coloured poo after eating something tomatoey?" But I stopped myself thinking the forum was a better place for that sort of discussion rather than the dinner table!!
I think this place makes me feel less embarrassed too.
Like just now we had a tomatoey based dinner and I almost said "Does anyone else have reddish coloured poo after eating something tomatoey?" But I stopped myself thinking the forum was a better place for that sort of discussion rather than the dinner table!!
Jim (POPS)
Jim (Pops)
when someone ask me about crohns and/or how I feel I say, "do you really want to know?" and if they sound sincere I will tell them, if not I say, "You really don't want to know" and I don't tell them anything.....
nogutsnoglory
Moderator
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I think the only gross part of crohns is the diarrhea and gas. I think most non IBD people can stomach inflammation, scar tissue, pain and other symptoms. They may not be able to stomach fistulas, fissures and abscesses though but the main component of the disease is not as disgusting.
Thanks everyone for your continuing input! It's already making it easier for me.
I guess I meant mainly the abscess/fistula issue, since that is the big thing I've been dealing with lately. It's true the rest is not anywhere near as embarrassing. But I've had people say "Where exactly is the problem?" and I don't want to lie, because it feels like it minimizes it, but saying "anus" isn't really appropriate to say everywhere. I also just don't want to tell everyone that. Most people won't understand when you say abscess or fistula, so it requires more explanation, and telling people you have drainage is also uncomfortable for me.
But I just won't be telling people about that part (and am getting my husband trained in that also...he's also a talker), unless I can figure out first that they really want to know.
I guess I meant mainly the abscess/fistula issue, since that is the big thing I've been dealing with lately. It's true the rest is not anywhere near as embarrassing. But I've had people say "Where exactly is the problem?" and I don't want to lie, because it feels like it minimizes it, but saying "anus" isn't really appropriate to say everywhere. I also just don't want to tell everyone that. Most people won't understand when you say abscess or fistula, so it requires more explanation, and telling people you have drainage is also uncomfortable for me.
But I just won't be telling people about that part (and am getting my husband trained in that also...he's also a talker), unless I can figure out first that they really want to know.
It's been great reading everyone's comments (I've had a fistula for three years but I'm new to these forums).
Has anybody started a relationship since having a fistula and had to tell the person? I haven't really been dating, I was kind of putting my life on hold until the fistula got fixed but it looks like it might not get better.
Has anybody started a relationship since having a fistula and had to tell the person? I haven't really been dating, I was kind of putting my life on hold until the fistula got fixed but it looks like it might not get better.
Hi Aloe,
I was reading your post and its ringing bells!
You're most definitely not alone. I haven't told anyone about my perianal abscess. I find it really embarrassing.. The word abscess and pus freaks me out. A lot of people have realised I've been sick recently and my family have tried to respect my wishes and covered for me but there's only so much covering up you can do. Waaaahhh
I was reading your post and its ringing bells!
You're most definitely not alone. I haven't told anyone about my perianal abscess. I find it really embarrassing.. The word abscess and pus freaks me out. A lot of people have realised I've been sick recently and my family have tried to respect my wishes and covered for me but there's only so much covering up you can do. Waaaahhh
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I tell them the way it is. I explain the condition and all that goes with it. Most understand. Those that do not, well, TFB.
Hi,
It took me many years to get used to my issues with crohn's and talk about them with people outside my close family circle. I used to be so shy about it and now I'll pretty much tell anyone my story for the sake of spreading awareness! There are so many myths and miss strewn conceptions with crohn's and IBD. I usually start with... have you herd of IBS, well it's NOT the same thing and go on to explain that there are 2 forms of IBD and that I have crohn's and that it is autoimmune and can attack you anywhere from your mouth to rectum. Then I go on to say that mine affects me rectally and in turn I deal with constant abscessing (I then say sacs of puss/infection) and fistula (tunnels from organ to organ). Then I say everyone is affected differently with the disease, it all depends on where the disease is located in your body. Mine affect me vaginally too so that's super personal but like I said it's taken me many years to be willing to talk about it. I found Sara Ringer online last year and seeing her do the video logs on youtube talking about absolutely everything, she gave me a confidence and understanding of how important it is to spread awareness!!!
If we do not educate then people think it is like the flu or a hangover, or compare it to IBS and it's so, so much more! Who is going to donate to a disease when they think it is just like a flu or a hangover?
Have a good day everyone!
Cheers!
It took me many years to get used to my issues with crohn's and talk about them with people outside my close family circle. I used to be so shy about it and now I'll pretty much tell anyone my story for the sake of spreading awareness! There are so many myths and miss strewn conceptions with crohn's and IBD. I usually start with... have you herd of IBS, well it's NOT the same thing and go on to explain that there are 2 forms of IBD and that I have crohn's and that it is autoimmune and can attack you anywhere from your mouth to rectum. Then I go on to say that mine affects me rectally and in turn I deal with constant abscessing (I then say sacs of puss/infection) and fistula (tunnels from organ to organ). Then I say everyone is affected differently with the disease, it all depends on where the disease is located in your body. Mine affect me vaginally too so that's super personal but like I said it's taken me many years to be willing to talk about it. I found Sara Ringer online last year and seeing her do the video logs on youtube talking about absolutely everything, she gave me a confidence and understanding of how important it is to spread awareness!!!
If we do not educate then people think it is like the flu or a hangover, or compare it to IBS and it's so, so much more! Who is going to donate to a disease when they think it is just like a flu or a hangover?
Have a good day everyone!
Cheers!
