Is anyone embarrassed by this disease?

[Amberly]

I am. I'm not one to talk about my disease openly, and to be honest, I'm still in denial about having a chronic illness. Having been sick for the past four years, I got into this routine of pretending to be absolutely fantastic even when I'm at my worst, so I never really talked to people about what I felt and whenever I try to now, they don't really understand, which just turns me off even more to the idea of opening up about it. I tend to just tell people who seem curious that "I'm not in the best health." Some of my closest friends still don't know or understand.

Just recently while Skyping with a friend, who am I almost positive knows I don't like people to know about my Crohn's, started discussing the not so pretty side of Crohn's; not only in a carefree matter like it was almost funny, but also in front of a lot of people she was hanging around with. Who know me. Who I don't want to know about it. It hurt.

My brother's friend was over earlier and at a time that I was very sick to say the least. He made a comment about it which just added salt to the wound. And I was so upset I just told him to get over it and quietly sulked in my room.

I get sick all the time. Its like a game. Just recently I had two really good days that I felt awesome. And then I got sick all over again. :/

I need to talk to my college's disability center as well for next semester, since this one was so hard for me. But I'm so embarrassed I can't even bring myself to call them. Does Crohn's count as a disablity? I know that I should communicate with people so they understand but I'm such a reserved person its really hard to be open about something that I haven't fully accepted yet.

I'm not ashamed to be sick. Its made me who I am. But yet, I'm still incredibly embarrassed by it. If that makes any sense.

I suppose I'm just not taking this newly diagnosed thing very well. :/
I haven't been able to try any treatment yet either because I am playing phone tag with my doctor. So thats frustrating.

Any tips guys? On how to deal or go about talking to people?
Because I feel like I'm slowly losing my sanity.

I truly hope you all are well.

 

[UnXmas]

I actually find it easier to let people know I'm ill. Otherwise some of my behaviour seems strange. Like if I leave a social gathering go to the loo a lot of times or for a ong time, or if I don't want to eat at a meal out, or even if I'm just tired and unenthusiastic, I'd rather people know that illness is a reason for my behaviour.

When it comes to the reaaly embarrassing stuff - like losing control of my bowels - it's going to be embarrassing no matter what.

It just takes some judgement to work out the best time to tell people and how much to tell. It's not like I introduce myself to new people by stating that I'm unwell, but if I need to explain an unusual behavior, I would bring it up.

I need to talk to my college's disability center as well for next semester, since this one was so hard for me. But I'm so embarrassed I can't even bring myself to call them. Does Crohn's count as a disablity? I know that I should communicate with people so they understand but I'm such a reserved person its really hard to be open about something that I haven't fully accepted yet.

I don't know if it's called a disability, but it's an illness which could effect your study so you're entitled to help. My uni's disability centre was always nice to me, even before I had a diagnosis. I provided them with a doctor's note explaining that I needed access to toilets during exams, etc. and that was organised for me with no hassle. It depends what help you'd think you need.

Have you been ill for a while? I've been ill many years and I have found it gets easier to accept and talk about in time.

 

[Lisa]

Your illness may be considered a disability - it differs in different areas, and also how sick you are. There are other members here from California who can help you out with that....

And to answer your question - no, I am not embarassed by the disease...it is something that I have learned to live with and accept that I'm going to have good and 'bad' times with it. When I was younger I was in denial -didn't tell people about it, hid my 'issues' and illness...which wasn't always a good thing.

Have I been embarassed by the disease? SURE! Like having an accident when out with friends.....~really~ smelly gas.....having friends come visit me in the hospital when I look like sh*t.....(I HATE having visitors when I'm sick!!).....

Hopefully you will be able to contact your doctor soon - don't be afraid to keep calling....if you are feeling poorly you don't want to wait too long and let things progress further.

paso

 

[muppet]

I was when I was younger, but I've had the disease for 30 years now and my experience has been that the sooner you get over it, the sooner most other people will, too. I have sort of a devil-may-care attitude these days about what other people think of me. I try to be a nice guy, try to do the right thing, don't worry overly much about my appearance (but stay well groomed), and if someone childishy makes a big deal when I occasionally have to release a fart, that's on them, not me.

I find my stress has been much lower, at least as it regards my disease, which has only improved my health. Now if I could stop sweating about finances, family, house maintenance, my kids' health...

 

[gillmc]

Yep.....I am embarrassed to the point that I don't want to start a relationship with a guy and have them present in my house when I need to run to the loo or have to fart! I would be soooo worried it would turn into a shart (which has happened when Im alone) but god forbid it happens when Im with someone :/ The highly offensive smell left behind in the bathroom after a bm is sickening to me so lord only knows how a guy would feel about it! Sleeping together is another concern, I tend to release gas during the night and again the smell is horrendous....like something has crawled up my bum and decomposed!!

I can't even go for long walks any more like I used to just in case I get the 'urge' and need to dash to the nearest loo....there are no loos in the countryside (it's not the first time I have had to have an emergency bm behind a tree while my sis is on the lookout!) SO yes, embarrassed much!

 

[muppet]

The urgency and odors are things that should generally resolve with treatment, though, which may include diet moderation as well as your medications. I know that when I'm running to the bathroom suddenly, soiling myself, or even just smelling really badly, it's because my disease isn't being controlled as well as it could be.

A strong treatment regimen, almost certainly including diet, and good compliance, will definitely help reduce your risk of embarrassment.

But even when you're flaring, if someone can't be understanding: to hell with them.

 

[Scaryman]

I'm not embarrassed to have this disease. I see it can be a curse socially, financially, physically, etc. but if people make fun of me going to the bathroom a Ron during a flare, or pick on my diet then they can politely go to hell. Just a nicer way of saying I don't need to be near people like that, I didn't nor did anyone ask for this chronic disease. It's not our fault we got it. If others can't see that then screw them! Again that's just my opinion

 

[Area Man]

I am. I'm not one to talk about my disease openly, and to be honest, I'm still in denial about having a chronic illness. Having been sick for the past four years, I got into this routine of pretending to be absolutely fantastic even when I'm at my worst, so I never really talked to people about what I felt and whenever I try to now, they don't really understand, which just turns me off even more to the idea of opening up about it. I tend to just tell people who seem curious that "I'm not in the best health." Some of my closest friends still don't know or understand.

Just recently while Skyping with a friend, who am I almost positive knows I don't like people to know about my Crohn's, started discussing the not so pretty side of Crohn's; not only in a carefree matter like it was almost funny, but also in front of a lot of people she was hanging around with. Who know me. Who I don't want to know about it. It hurt.

My brother's friend was over earlier and at a time that I was very sick to say the least. He made a comment about it which just added salt to the wound. And I was so upset I just told him to get over it and quietly sulked in my room.

I get sick all the time. Its like a game. Just recently I had two really good days that I felt awesome. And then I got sick all over again. :/

I need to talk to my college's disability center as well for next semester, since this one was so hard for me. But I'm so embarrassed I can't even bring myself to call them. Does Crohn's count as a disablity? I know that I should communicate with people so they understand but I'm such a reserved person its really hard to be open about something that I haven't fully accepted yet.

I'm not ashamed to be sick. Its made me who I am. But yet, I'm still incredibly embarrassed by it. If that makes any sense.

I suppose I'm just not taking this newly diagnosed thing very well. :/
I haven't been able to try any treatment yet either because I am playing phone tag with my doctor. So thats frustrating.

Any tips guys? On how to deal or go about talking to people?
Because I feel like I'm slowly losing my sanity.

I truly hope you all are well.

Why are you whispering?

 

[gillmc]

^ I find this post to difficult to read...too small and blurred!