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 Posted: Fri Jul 17, 2009 3:21 pm
Hello, I'm new to the forum. I have ulcerative colitis, a chronic autoimmune disease. Basically, the immune system attacks the large intestine and forms ulcers during flare up periods.
I always wanted to complain about my disease to other people, but I just don't want to feel like I'm fishing for sympathy, you know? And I don't exactly want to describe what I actually go through since it's embarrassing. I want to come off as someone who is strong and great, but really- when I do that I always feel like I'm just being misunderstood in the end. Even when I do explain my symptoms, people just don't realize how bad it is.
Example of not telling my teacher:
Teacher: So are you feeling better today?
Me: Well um... sweatdrop
Teacher: ...Anyway.
Example of trying to explain to friend who had an ovary removed (so you'd THINK she'd understand):
Me: Symptoms are really embarrassing... I would get diarrhea 5-7 times a day and have it so much that it just hurts. I'd get nightmares about being anally raped.
Friend: Oh, I've had really bad diarrhea once- I know EXACTLY how you feel.
Me: (...Was she even listening to me?)
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Posted: Fri Jul 17, 2009 7:35 pm
Chronic conditions are really difficult to explain to other people. It's hard to get people to understand...especially when you are young. I am still in high school myself and it's been hard to tell my friends that sometimes I'm too tired to go bowling. Or that I'm not in a bad mood, I just am in pain. Or how scared I am about my progressive conditions. I don't tell very many people. I don't tell my teachers and only my closest friends know about my medical conditions. I don't like people to feel sorry for me.
I think that's what is so great about this guild. It gives us a place to share and support.
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Posted: Sat Jul 18, 2009 2:20 pm
Some people do struggle to get their heads round the idea that you're not pissed off with them, or even pissed off at all, you're just preoccupied with your own problems for the moment.
I know what you mean about embarassing problems, the eczema on my arms is going completely mental at the moment is "weeping", which I think means I need some antibiotics for it sweatdrop instead of bleeding this horrible clear stuff seeps out, it's really gross and I'd NEVER mention it to anyone, if they ask what I'm doing I say I scratched too hard and it's bleeding, otherwise they might run off in the other direction going "ewwww, infected skin!" gonk
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Posted: Sat Jul 18, 2009 10:02 pm
a) Welcome to the guild!!!
b) It's harder for people who dont have chronic diseases to understand how you and others feel....I myself dont truly understand how it feels....myself not having a chronic illness....I mean I was recently diagnosed with depression (i know its not the same but its still a dd) and im being retested for hypothyroid....so maybe one day ill understand but neither are as severe as your condition....the problem with mine and the potential one is that some people dont consider them a reason to go to home or not go out one night....
c) I hope my insesant rambling sorta made sense and if anyone is offended im sorry....but they are part of me that i have to live with...
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Posted: Sun Jul 19, 2009 2:47 pm
Howdy NamuNamu! I know exactly how you feel. I have crohn's disease, the other IBD.. and yeah, it's not a pretty picture. My advice is to be BRUTALLY honest with people around you about this DD. No one will ever understand how you feel completely unless they are going through it themselves, but describing the pain and the symptoms to others in great detail can sort of open most eyes to the realism of this disease.
If you ever need anyone to talk to feel free to message me anytime.
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Posted: Tue Jul 21, 2009 9:21 am
I try to be brutally honest about my symptoms of colitis, but eh- I'm sure people -don't- want to hear about that. I guess I should just work on a way to describe it without mentioning diarrhea... lol.
Thanks for your support everyone :3
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Posted: Wed Jul 22, 2009 9:25 am
"It's like having bad food poisoning every day"
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Posted: Mon Aug 10, 2009 8:51 pm
You should do what my dad does. He has really bad Diverticulitis, which is a problem with his bowels, and it causes him to have to run the bathroom more often than is normal, and he may spend up to an hour at a time in there. It causes him to be late for a lot of things, and people often get mad and just say he is lazy or doesn't care. So, in return, my dad just tells people off, lol. He lets them know that he has a problem without really telling them his personal business, and that if they don't understand then maybe they were right, he really doesn't care about them.
It might sound harsh, but my dad has been able to weed out his true friends that way.
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September S a p p h i r e
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Posted: Fri Aug 28, 2009 4:53 am
I have Linear and Morphea Scleroderma. It's a chronic autoimmune disease where my immune system attacks the tissues. I've lost muscle, fat, and my skin is hard when it's active.
I have to take a chemotherapy drug for it. It makes me sick whenever I take it. When I'm inactive I won't take it....it recently became active again. I hated telling my parents I knew it was active and I needed the medicine I've hated all my life.
I'm not supposed to have this. It's a disease for middle aged women, not 4 year old little girls. People who are 20 think they're too young to have it...I'm turning 17 next week. 13 years of this. Of chemo. Of people wondering why my skin looks weird. I can't even remember what "normal" is.
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Posted: Fri Aug 28, 2009 3:01 pm
*Hugs for Shiori* That sounds really horrible, is there a known "trigger" that makes it active or is completely random?
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Posted: Mon Aug 31, 2009 2:21 pm
AkibeJosephus *Hugs for Shiori* That sounds really horrible, is there a known "trigger" that makes it active or is completely random? I wouldn't say random, but the cause is unknown.
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