Feeling depressed and isolated

i would try to focus on getting your UC under control - then you won't have to deal with the things you are saying -

have you created a signature, letting us know when you were dx'd, what meds you have used/currently using, any other pertinent info ?

people are people - plain and simple - some understanding and helpful, others not so much - spend time with the first, not so much with the second -

Unfortunately, it boils down to what your own expectations are and your reactions to when things aren't meeting them. Not that you're wrong to feel how you do, it's just that's the only part in your control.

Have you actually been teased or ridiculed? or is this just something you are fearing? It's also normal for people to change the subject, not understand, not want to ask questions, etc...that's their issues, not yours.

Do people actually know you have UC...or have you always glossed over it by calling it stomach problems?

I agree with Stud and Laurie...good advice.

Hang tough, you will find your comfort zone. In truth, I don't care if people understand how I'm feeling, but I'm honest in how I'm doing....and I tend slip in a few blunt details with a bit of a comedic twist, depending on who I say it to. If people want to know more, they'll ask.
In general, life goes on....and everyone has their own crap to deal with and limitations as to how much info they can take in. If you're as empathetic as you expect people to be...they'll react to your issues in a way that you feel Ok with.

q

Hey WorriedUCer,

-I know exactly how you feel with the whole "pushing friends away" thing. I do it too. Not exactly intentionally; but when in a flare, it is almost too difficult for me to talk/relate to anyone. Between going to work and doctor's appointments, i don't even have the energy to make conversation anymore. I don't think about this too much right now-but I know when I'm better I'll want to have those friends again...but I'll have to explain my absence...and all I can think of is that I look like a horrible friend!

I first started showing symptoms as a teen--and believe me, I told no one. I felt the same--that I'd be met my either straight up ridicule or just ignored and misunderstood. It took a very long time after my diagnosis to tell any friends--it's still a short list.

-My issue with family (I'm not sure if this is similar to what you get) is that so many TRIVIALIZE this condition! they know I have UC, yet they refuse to accept what I have to go through.

Here's an example (probably looks familiar to a lot with UC/Crohns):
relative: how are you feeling?
me: not great, i'm sick right now
relative: well have you tried [diet/testing thyroid levels/literally anything random]
me: seriously? no. i'm working on finding the right medication right now.
relative: oh. well what else have you been up to lately?
me: nothing. i'm too sick.
relative: [finds something else to talk about]

I'm so serious... that's pretty much an actual conversation I had recently. And it's sad because I do love my family...but the absolute lack of compassion I receive from certain family members blows my mind. I've also had the issue where if I do mention how much pain or difficulty the disease causes me, I'm thought of as complaining and stuff. *sigh*

imagardener2-i think it's amazing that you have a partner who understands UC and works with you on it. I can only hope to someday find a partner who understands UC as well. i didn't have much hope for myself before UC, sooo we'll see what happens, haha!

Anyways-WorriedUCer, my best advice is--like juststud said, getting your UC under control, to the best of your ability, should be your #1 priority so that it's not taking over your life.

Also, see if you can speak with a therapist for a bit. When I was in school, I was able to get free counseling for about 3 months. (I went to 1 CCFA support group and honestly, at the time it just made me sadder.) The therapist helped tho-she actually had experience with IBD patients so nothing was off limits. I felt a million times better, mentally. I've never even told my family I went because I don't think they'd understand. It's nice just to have that hour a week that is just to work on your mind. If you can do it, it's, in my opinion, definitely one of the best things you can do for yourself.

Hope my ramblings helped a bit. Even though you feel isolated, you're not alone. Work on keeping yourself happy, and feel better <3

Uc is an invisible disease that often starts at a young age. We look completely normal and healthy on the outside, which is what everyone sees, and many don't take our complaints seriously because of it. Many of our peers have no experience or knowledge of uc or of chronic illnesses as a whole, more so they don't expect it from a person our age. Your peers are very social and and active. Uc is socially isolating and can leave you housebound, when we're flaring our world might involve just the bathroom and the bedroom, and since we're feeling awful leaving the house or socializing aren't possible. Uc causes incredible uncontrollable urgency, we need a bathroom pronto and fear accidents that creates a lot of anxiety. Uc is an embarrassing disease involving bowel movements, which are a social taboo. When acquaintances don't understand uc and that bad days happen with sudden cancellations, they inadvertently feel slighted/put down. They're failt, not ours.

I agree first and foremost, get your uc under control with a solid treatment plan. Your health should be your first and foremost concern. If you're uc is negatively impacting your quality of life then speak to your gastroenterologist and get aggressive in treating those symptoms. I'm in remission (meaning an absence of uc symptoms), so uc doesn't impact my day-to-day life. I can go out, work, play, socialize without worries about uc butting in it's ugly head.

Your gastroenterologist only treats the physical symptoms not the emotional anxieties, stress, and depression that often goes hand-in-hand with uc. Coping with chronic illness is extremely difficult. A number of us seek consulting, therapy, and are on antidepressant and/or antianxiety medications. It's worth pursuing if you're struggling.

As you get better, it'll be easy to get out there and socialize and be as active as your peers are. As others have said, being ill helps you find your true friends which are those who want to know what's wrong, listen, want to help, and are flexible and understand what a bad day and cancellation mean. Some try evangelizing, it's a lot of work to educate others but it can be rewarding (versus uneasy feelings of bottling everything up/hiding everything related to uc). It's not for everyone, and you got to be a little careful around those peers who might tease you. I'd say pick a couple close friends and family and educate them. Having a few to confide in and understand is essential when you're ill.

Good luck, it's not easy and most all of us struggle with these same issues.

If you've become sick of the pretense, then don't pretend any longer unless you absolutely have to (e.g. you'd lose your job otherwise). Personally I feel the same way as you - I've had enough of self-centred people who go on and on ad infinitum about their woes but wouldn't even spend 30 seconds listening to yours. I don't have much motivation to socialise anymore, given I can't eat or drink anything without suffering, and socialising is too boring to do stone-cold sober. I'd make the effort for somebody I really like, which is almost nobody to be honest. I'm certainly not putting myself out for acquaintances or for family members who don't give a toss.

I'm actually facing a dilemma at the moment, as one aunt has reached out to me and invited me to her house in Spain for Easter - that's obviously not far away now. She has said I would have my own bedroom with en suite bathroom and that I needn't feel obliged to spend all my time with them. It sounds like a pretty good setup but it still doesn't stop me from being panic-stricken about being ill, about having dire urgency attacks in the middle of nowhere and so on. I don't want to go to Spain and then have an absolutely miserable time. Not sure how to deal with this one.

In an ideal world, of course you'd 'fix' your UC but some issues aren't always fixable. I hope you can manage to fix your symptoms, but if you can't, you're not alone in dealing with this inutterably tedious crap.

I can't thank you all enough for responding with such constructive and practical advice. NiceCupOfTea, you and I sound like kindred spirits :)! I too am sick of the endless, meaningless and superficial conversations. I just wish that people were more real and honest, if you ask me how I am I'm going to rightly or wrongly assume that you actually want to know or indeed care how I am and vice versa. I would much prefer someone be real with me and bond with me on a human level rather than brag about their latest car, money etc only to find out that they've divorced their partner last week. I'm sick of the pretence and I'm sick of people acting as though everything is a competition, I just would like a few "real" and supportive friends in my life who I can laugh with and don't see me going to the bathroom more than the usual person as any big deal.

Justgettinby, my family is a little different, particularly my mother, in that she doesn't trivialise it but she just finds the whole thing distasteful and "disgusting" which she actually said to me when I was growing up. To be honest I think it's that attitude that has messed me up the most. If you think my illness is disgusting then you are essentially telling me that you find ME disgusting This is the same person that told me when I was 14 years old and came to her in a fragile moment seeking reassurance that one day I would get married that "you will just have to hide your illness from them". I have thankfully been very fortunate to find a partner who completely understands my illness. He scopes out bathrooms for me at all times, ranks them based on privacy and has broken speed limits many a time to get me to a bathroom. Until that point I'd never had someone show me that it was ok, I wasn't disgusting or unloveable because of my illness and made me feel like it was no big deal. He doesn't have an illness and is fit and healthy so theoretically shouldnt understand, but he just does. Its been both s blessing and a frustration because it's made me realise that it's bit such a hard thing to be a decent human being, you don't need to have an illness to have a bit of empathy. And I know it's their problem and not mine, but I've got to go out into the world with these people on a daily basis and I've really only found 1 person who doesn't care, seriously?? I can't imagine people acting the way they do to someone with diabetes, or MS. Why is it any different?

Quincy, you are right and interestingly I'd never though of it like that before. No one has ever actually outright teased me or ridiculed me, I've always "tested" them to see whether they were tolerant or a jerk and used that as a proxy measure. That being said, I think you do get an impression of a person and our judgements aren't usually far off. For example, I quickly knew my partner was understanding and kind. So I don't necessarily think my intuition is off but I guess I've got to give people the benefit of the doubt before judging them too harshly.

Charityjoy, my goals have changed somewhat in the past few years. I had a major stroke two years ago at the age of 31 so I have since reevaluated my life. The things that I used to take pride in such as my career now hold little appeal for me as I don't feel there's much meaning there and my tolerance for people has also gone down. I desperately want to see more of the world and so I would say that is my main goal at this time, and I'm also learning French. I hope that's what you mean by goals or do you mean illness related goals?

It's nice to know there are other people out there who are going through what I am on a daily basis. I don't know anyone else that has an illness and so it can make you feel like you're the only one so this in itself has been really nice.