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Ulcerative Colitis
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Posted 10/11/2015 9:58 PM (GMT 0)
Does it bug you when someone you didn't tell about your health asks you how you are? Obviously they heard about your condition through the grapevine? I really hate people making conversation about my health behind my back. I just don't get it, don't they have their own stuff to talk about?
Posted 10/11/2015 10:08 PM (GMT 0)
Never bothered me. Means someone took the time to think about me!
Posted 10/11/2015 10:12 PM (GMT 0)
I think it's more like gossip!
Posted 10/11/2015 11:20 PM (GMT 0)
i fully understand you! that would make me aggressive, especially that in most cases there's an obvious schadenfreude touch about such questions
Posted 10/12/2015 12:22 AM (GMT 0)
If it's people I barely know then ya it kind of bothers me but not with my friends.
Posted 10/12/2015 12:26 AM (GMT 0)
Never happened to me before, but yeah I'd be annoyed. They probably mean well but found out via gossip...
Posted 10/12/2015 12:43 AM (GMT 0)
I agree with Marauder... It's nice they took the time to care and ask really.
Posted 10/12/2015 1:14 AM (GMT 0)
It annoys me to no end.
Especially cuz I only told a few people that I have UC and than people I hardly know seem to know that I have UC so that means people who I told, told other people.
Ugh it's also annoying when they ask me how I'm feeling and I feel horrible. But that's cuz I don't want to tell them I feel crappy ( literally)
But I know they mean well. I just learned from my experiences and when people are sick I Jist tell them I hope you get better soon, or I'm thinking about you so they don't have to explain if they don't want to.
Posted 10/12/2015 3:18 AM (GMT 0)
heh. I live in an apartment building where most folks are old and sick. They tend to define you by your "illness" I hate gossip, and sharing your knowledge about my "illness" is not welcome. Horrible old peeps. I mean we all share disabilities but it's not necessary to share that into.
Posted 10/12/2015 3:55 AM (GMT 0)
I guess it's fine if people are worried and want you to get better but it bugs me when people are sitting around talking about my D. That's just unnecessary, and you know it comes up because people ask, "what exactly is wrong with her?". It's just no one's business really. I go through hell to protect my identity and keep things away from my job but then these people all seem to know and I didn't tell them, so what the heck? Who is spreading my private health information without my permission? and the bigger question, why? why would they do that? I am sure they know that a person wouldn't want people knowing about their D and urgency.
Posted 10/12/2015 4:03 AM (GMT 0)
I'm with you. It's stressful and frustrating because you are working hard and somehow someone can't keep private information to themselves.
Posted 10/12/2015 5:38 PM (GMT 0)
I am more infuriated by close friends or family members who haven't even taken the time to learn a thing about my situation. People who I've known for years and years and confided in who still don't even know or remember the name of the disease. The same people who repeatedly extend invitations to "come over" or "go out", without realising that this only demonstrates their ignorance to me each time. These things make my blood boil the most and I've lost friends over it.
Posted 10/12/2015 5:55 PM (GMT 0)
People are people, and communication is what it is.
Best to talk honestly than have people wonder.

Of course, there are many people here who constantly complain and moan about the lack of knowledge "out there" on UC so maybe take advantage? People fill in the blanks anyway, so best to have truthful info than imagined shared.

q
Posted 10/12/2015 7:39 PM (GMT 0)
Oh man. For me it was like the telephone game. When I went to the hospital for my flare up, one of my friends visited me and posted a picture of me on Facebook. When people asked what was wrong, she just wrote out "infected colon". I was pissed that she would openly talk about my medical situation (and get it wrong) publicly.

What annoyed me more than anything were family members talking to friends and family about my condition, not understanding what it is, and getting it so screwed up. My father told me my grandmother that my stomach and intestines were full of ulcers. One of my class mates asked what was wrong and I explained what UC was and how it got me to where I am...somehow this turned to him telling everyone my condition was worse, and the dean of my school saying they were more than willing to help accommodate my "colon cancer".

I just said **** it. I was done explaining it to anyone. When people asked I started just basically saying "its none of your business". I was tired of every phone call, every text, every facebook message being about my condition. Early on, when I got out of the hospital, I had a very rough week. Adjusting to home life, the steroids, plus just all the stress in general. The last thing I wanted was some relative to call me and just want to talk about UC. I made it clear I don't want to talk about it.

Recently it has gotten a little bit better. I have been able to actually explain it to people. And I was so happy when I went to the store to shop for low residue foods, just to find that the stock girl also has UC and knows what I'm going through. I hate to say I am glad others have it, but it feels great to know that I am not alone (just like you guys here on this forum).

Now a days most people seem to leave it alone, but occasionally I either get people who dismiss the condition, or assume I am just a giant ulcer/cancer patient.
Posted 10/12/2015 7:46 PM (GMT 0)
Sorry you had to go thru people sharing your information and screwing it up at the same time.
It makes me so angry.
Sorry.
Posted 10/12/2015 8:00 PM (GMT 0)
I'm with Ki-Wi I get way more annoyed at the people I trusted and confided in that after nearly a decade still don't get it, or even taken the time to learn just a little bit about it. It only gets worse when they completely ignore it/forget it about it. "Hey Bad Gut why aren't you drinking a beer and eating these great deep fried Oreo's?" I think I have received more caring thoughts and encouragement from people I don't know very well then a lot of people I actually depend on. As far as gossip goes, well I'm a man so that is so low on the I don't give a f#@k what others have to say about me, plus my age now over 40, that just isn't worth me caring or even giving any of my energy too, so gossip away my people if that is how you think you should live your life is my thought.
Posted 10/12/2015 8:10 PM (GMT 0)
My few friends and the people I work with know I have UC and what it entails. Because I work at a Vet they really know the not so fun parts and if I were to say I'm having a bad day they would get it and not need me to explain nor would they ask questions.

Everyone knows I don't sugar coat anything and will plainly tell them how it is if they DO ask about it. Luckily no one really does.

I also don't appreciate anyone talking about me behind my back but unfortunately people do that whether you have UC or not. It's the nature of people. Gossip and drama.
Posted 10/12/2015 8:18 PM (GMT 0)
Never seems to bother me. My boss at work knows and a lot of my coworkers do as well, makes it easier when I need to leave for a remicade infusion or a doc checkup without having to take vacation time. Also my best friends rag on me for my symptoms all the time but it doesn't bother me cause that's just how we are as friends, I know if I really needed them they'd be there in a heartbeat, maybe time to get better friends? To me I'd rather people know then just assume things, they'll see you sick regardless and if they don't know they'll make stuff up that could end up being worse. I'd rather be known as the guy with UC then the guy with STDs....
Posted 10/12/2015 9:55 PM (GMT 0)
NSSG,
Wait until you get this one: "Oh, so you had surgery? So you are okay now right? Everything is back to normal." Five years later and that one still infuriates me! It's like, yes I'm ok but I had to have several pieces of my digestive system removed to get to okay and it's a brand new normal!
Posted 10/12/2015 10:15 PM (GMT 0)

ByeByeUC said...
NSSG,
Wait until you get this one: "Oh, so you had surgery? So you are okay now right? Everything is back to normal." Five years later and that one still infuriates me! It's like, yes I'm ok but I had to have several pieces of my digestive system removed to get to okay and it's a brand new normal!

"Well look at the bright side, at least you lost weight! " :D
Posted 10/12/2015 11:01 PM (GMT 0)

MarsRover said...
Oh man. For me it was like the telephone game. When I went to the hospital for my flare up, one of my friends visited me and posted a picture of me on Facebook. When people asked what was wrong, she just wrote out "infected colon". I was pissed that she would openly talk about my medical situation (and get it wrong) publicly.

What annoyed me more than anything were family members talking to friends and family about my condition, not understanding what it is, and getting it so screwed up. My father told me my grandmother that my stomach and intestines were full of ulcers. One of my class mates asked what was wrong and I explained what UC was and how it got me to where I am...somehow this turned to him telling everyone my condition was worse, and the dean of my school saying they were more than willing to help accommodate my "colon cancer".

I just said f* it. I was done explaining it to anyone. When people asked I started just basically saying "its none of your business". I was tired of every phone call, every text, every facebook message being about my condition. Early on, when I got out of the hospital, I had a very rough week. Adjusting to home life, the steroids, plus just all the stress in general. The last thing I wanted was some relative to call me and just want to talk about UC. I made it clear I don't want to talk about it.

Recently it has gotten a little bit better. I have been able to actually explain it to people. And I was so happy when I went to the store to shop for low residue foods, just to find that the stock girl also has UC and knows what I'm going through. I hate to say I am glad others have it, but it feels great to know that I am not alone (just like you guys here on this forum).

Now a days most people seem to leave it alone, but occasionally I either get people who dismiss the condition, or assume I am just a giant ulcer/cancer patient.

OMG, are you me????? That is hysterical, sums up my whole deal and why I don't like people's gossip, they have no idea what they are talking about. They just blab ON and ON.

*sorry, edited out the bad language.
Posted 10/12/2015 11:02 PM (GMT 0)
Yes, the people who are my "friends and family" who can't spend 5 minutes learning what this condition is drive me nuts too. It's the same people, the gossips, they also can't spend 5 minutes learning. :)
Posted 10/12/2015 11:04 PM (GMT 0)

ByeByeUC said...
NSSG,
Wait until you get this one: "Oh, so you had surgery? So you are okay now right? Everything is back to normal." Five years later and that one still infuriates me! It's like, yes I'm ok but I had to have several pieces of my digestive system removed to get to okay and it's a brand new normal!

Someone actually already said this to me. They were like, "so after the last surgery you're back to 100%?". I was kind of mad that firstly, she after all the questions she asks, she can't bother doing 5 minutes of research to figure this out on her own. secondly, that she can't surmise that life without large parts of your intestines will never be the same... People really don't think.

I also have my BF saying, "everyone should have surgery, you're doing so much better and it's the only thing that has helped as far as I can tell", as if surgery is some kind of breeze that should be done without thought. I have to tell him not to say that. Having a colon is always the best case, if you can take Asacol for life, KEEP YOUR COLON!
Posted 10/12/2015 11:08 PM (GMT 0)
I can't really be open with work people. I work in a corporate environment. if i worked in a shop or a smaller place, it would be different. News like health problems spread like wildfire. I would never get another job... the field I am in isn't small but everyone knows everyone. This is my skill-set, it's not like I can just decide to do something else in my 30s, it would take a long time to work my way up. I definitely think you want to keep health information to yourself if you're ever planning on looking for work. I know it's not legal to discriminate based on a health condition but it is legal to hire someone else.
Posted 10/13/2015 12:51 AM (GMT 0)

notsosicklygirl said...

MarsRover said...
Oh man. For me it was like the telephone game. When I went to the hospital for my flare up, one of my friends visited me and posted a picture of me on Facebook. When people asked what was wrong, she just wrote out "infected colon". I was pissed that she would openly talk about my medical situation (and get it wrong) publicly.

What annoyed me more than anything were family members talking to friends and family about my condition, not understanding what it is, and getting it so screwed up. My father told me my grandmother that my stomach and intestines were full of ulcers. One of my class mates asked what was wrong and I explained what UC was and how it got me to where I am...somehow this turned to him telling everyone my condition was worse, and the dean of my school saying they were more than willing to help accommodate my "colon cancer".

I just said f* it. I was done explaining it to anyone. When people asked I started just basically saying "its none of your business". I was tired of every phone call, every text, every facebook message being about my condition. Early on, when I got out of the hospital, I had a very rough week. Adjusting to home life, the steroids, plus just all the stress in general. The last thing I wanted was some relative to call me and just want to talk about UC. I made it clear I don't want to talk about it.

Recently it has gotten a little bit better. I have been able to actually explain it to people. And I was so happy when I went to the store to shop for low residue foods, just to find that the stock girl also has UC and knows what I'm going through. I hate to say I am glad others have it, but it feels great to know that I am not alone (just like you guys here on this forum).

Now a days most people seem to leave it alone, but occasionally I either get people who dismiss the condition, or assume I am just a giant ulcer/cancer patient.

OMG, are you me????? That is hysterical, sums up my whole deal and why I don't like people's gossip, they have no idea what they are talking about. They just blab ON and ON.

*sorry, edited out the bad language.

Oh I feel you. If an explanation into my condition takes more than 5 seconds, no one will actually take the time to understand. Pretty much the only people who do are either those who have something similar, or who have an immediate relative with an IBD. And just like everyone else, blah blah blah blah.

I tried telling someone I have an "autoimmune condition" (I figured it was easier than saying IBD)..the response was "What? AIDS?".......yeah, closed that road pretty early on.

OP, don't let other people ruin your life with this. Shut them down early on, and refuse to engage with them about the topic unless you want to discuss it.
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