Friends and family don't understand. Circle of friends getting smaller and smaller...

It seems like since I've been diagnosed with UC, my group of friends has dwindled quite a bit. It's for different reasons for different individuals, but it is happening, nonetheless.

I have some old friends, who I've known for years and was once very close to, fade away into non-friend-ness. I realize that just happens sometimes, maybe a fluke. But they don't really EVER want to know about my health, it's weird for them to hear, so they drop it and back off. I'm pretty reserved about it, I don't really bombard anyone with UC, I rarely talk about it. I'm uncomfortable doing it now for many reasons.

Anyhow, I'm a pretty friendly person, and I love to make new friendships and new acquaintances. It seems like when I get to a point in a new friendship where it is appropriate to reveal more about myself, and explain about UC, it goes sour. Most of the time it's me that has the problem with them though, which historically, is weird for me. I guess I'm changing.

Most new friends respond with stuff like, "Ooo, my sister tried [insert stupid gimmick or product here] and it helped her sore throat, I bet it would help you too!!" Or "You know if you eat really healthy, there is no way you could have stomach problems, it's not possible. You need to start eating better." Sometimes people will get mad at me for not going to an event they have planned, or not being able to eat out with them somewhere. I have (had) friends who were very pro-natural stuff and anti-medical doctor.

After trying 2 or 3 time to explain that my colitis is autoimmune, and how it works,what I've tried, what I do to stay healthy, etc., and they don't get it, I just sort of want to end the friendship. Normally when I disagree with someone about something, it doesn't bother me much. Historically, I've had friends from many walks of life with wildly differing opinions on things that mater to me. But friend's opinions on UC REALLY affects me A LOT. If a friend is going to be rude or ignorant about UC, I just tend to back off.

My group of friends is down to like two. Weird for me. I wish there were more people who understood, or tried. But I can't find them. (except for here, of course)

Has this been the case for you guys and gals??? Do you find yourselves being more selective about friendships after the UC diagnosis?

The way I see it is if a friend backs off when they find out you have a chronic illness, either they don't know how to react to such news so they avoid it or they get scared off completely...if they make no effort to try and understand what you are going thru then you don't need them in your life since they were not true friends to begin with.

I have been lucky. I have a great number of friends but I choose who I am really close to. Not because of my Uc but it's just my natural tendancy to be somewhat friendly but standoffish at first. I have 4 friends who I have known for 20+ years that have stuck with me thru it all and to me that is all I need.

Bear in mind I do not have the UC diagnosis, but rather a life sentence of IBS/D like symptoms, due to having my lower colon removed to surgery. On a good day I may have 15 bm's, but a bad day 20 or more, repeated trips to the bathroom, etc., etc. I've been at this for 11 years now. My entire life has changed. My surgeon predicted it would but I honestly thought he meant post-op pain, not on going bowel issues. I think I have what works for me, vs what makes things worse for my gut, figured out. And yet out of the blue I still have a bad day.

I can definitely relate to your experiences with friends and family. How that circle has dwindled. My husband and I are empty nesters now and I always thought we'd be going out more at this stage, not less. I worry I hold him back but he says no, he likes being home bodies and eating home cooked meals (I know couples who are never home). So we see friends far less than we used to. Is it because of m situation? Possibly. Eating out with friends is a real challenge for me. I've often not eaten at all and I get the looks, the questions - you aren't going to eat anything? Ah but you see I know what happens when I do eat - repeated trips to the bathroom. Who wants to spend a few hours at a TGIF? For example.......traveling isn't easy. I have to pull back on solids to travel and eat light the entire trip. This is yet again where others don't understand - they always want to tell me what they specifically do on their vacations - throw caution to the wind, what diet, eat everything in sight and pig out. Pigging out for me? Well, you might as well just glue a toilet to my rear end.....no thank you. lol

My main point in my rambling is, I've been the gamut with this situation I landed in (by the way, I did beat cancer but my life has really been turned upside down). In the beginning I tried to educate others, asking them how they feel after an intestinal virus? Right away, oh awful, you poor thing, etc. But the problem lies in when you tell them you feel this way ALL the time. They then tell you about a med or approach their Aunt Agnes or a coworker tried. I should try that too!

Sure let's fill my gut with experimental drugs, hollistic herbs, whatever people THINK I need now.

I already know what I need by now, 11 years later, a plain diet, small meals, a bathroom (I know where bathrooms are everywhere, interstate rest stops, the mall, the grocery store, every hotel my family stays at I discover all the off the beaten path bathrooms, lol).

But most of all I just no longer seek understanding. I gave up that dream. How can someone who can eat anything they want and poop once a day w/o problems (ie blood in your case, D in mine) relate to what we struggle with? Some people have tried to understand what I go thru. But that's a small number.

Hang in there. Vent here where you'll instantly have people on your side. Even IBS'ers can relate to what you go thru (although our symptoms are different). I hope you don't mind that I popped in here.

My best to you.

Maybe we expect too much from our friends and families. How can they possibly understand about having UC? Before I had UC, I would never be able understand what it is like to live with it. Even my wife, who tries, does not come close to understanding. Example, when I informed her about the coconut macaroon cure,lol, she told me she would make homemade coconut macaroons for me.
 
I have kept all my friends since I got UC. I do not get into detailed discussions about my condition in social situations. When questioned about it I give short answers. I do not seeking help or advice, because I know that they cannot provide anything useful. When advice is offered, I politely thank them but usually ignore their advice. I remind myself that they are just trying to be helpful, but they can not.
 
I remind myself that I am angry because I must deal with UC 24/7. I need to remind myself that getting UC is not my fault and by the same token, it is not my friends and family’s fault that they cannot offer me useful help with my condition. However they are an important part of my life, so I need to keep them close.
 
Good luck with your situation.

Sue made a good point. I am in my 50's and at our age, we are all facing some medical problems even if minor. So it may not be as much as an issue at my age as with youger people. Most of my friends are younger than me, but not by much.

Since I have been in remission for over a year, the UC subject does not come up often. However, if I am invited out or to someone's home, there are obviously things that I do not eat or drink. Only if they question things do I say that I have certain dietary habits I must abide by.

I have been EXTREMELY lucky in that I have not lost a single friend because of UC ... in fact, I have gained a couple!

I used to be one of those people who kind of falls off the wayside when faced with illness - not knowing what to do or say. After UC though, to hell with it all! I am just upfront as needed and will say something like, "I am so sorry for your xyz illness. I admit I don't know anything about it and it makes me feel a bit apprehensive. Can you tell me more about it and is there anything I can do for you?" By being up front with my anxiety and offering help, I have made more friends and kept the ones I have.

Life is too short ... if your friends just do not understand and they are slipping away. It's time to make new ones who are made of much sterner stuff.

Wow! So much good advice here! Thanks so much for listening and responding!

It's kind of hard to put my finger on what happens with many friends. A lot of good friends, like 15 year old friendships, just sort of ended when I got sick. I didn't really over talk about it, I also didn't say nothing; some found out through me, a short explanation, some through my family members. But they all just quit communicating with me, even when I tried to keep communicating with them. I couldn't go out and do all the stuff they wanted to, so maybe that's a big part of it. (at that point I was having 30-40 bloody BMs daily) No-one would visit. Maybe it creeped them out??

With the new friends, NABO, maybe you are right (about possibly expecting too much from them). I ask myself that sometimes. It just gets weird with some people. I have met a some people that want to talk about it all the time. Any time we get together its "oh have you tried garlic? Garlic cure my friends whatever-it's-called. Ok, oh how about exercise? Have you tried that?" And I have to explain that I've tried those things or haven't, why or why not, why it didn't work, etc., etc. So I usually say to them, "When I'm alone I have to deal with and think about UC all the time, when I'm with you I just like to pretend life is normal again. I don't want to talk about UC right now, I just want to hang out with you." But it just doesn't seem to work with those particular people. I have a ton of acquaintances like that. I've just started avoiding them, ha ha

I have another friend who recently started selling health food products. We've been friends for years. We had lost touch and are now spending time together again. All she can talk about to me and my wife is her products. All of the "how are you doing-s" are seen to her as invitations to try a product. If I'm well, she wants to announce at her store that her stuff is capable of "curing" colitis. If I'm not well, she wants to know what I've been eating, recommend a product, etc.

It just gets weird with most new people I meet. And that^^^ sort of weird. They have cure for me and are mad if I don't try it, or some don't want to hang out after finding out. It's so odd. I don't really bombard anyone with info, I just give a quick one or two sentence explanation of what it is, the end. And only after the friendship has hit a point where it'd appropriate.

I guess I'm just getting pickier with people. If someone can't keep from acting weird after they know me, I just kinda want to end it. I hope it's not hard on my wife, she is very friendly. But she's so supportive she'll do anything to make me comfortable, including sticking with me when I don't wanna hang out with new friends gone weird.


I also had some terrible experiences with a few friends and family members after I was diagnosed. Might be why I'm so uncomfortable making new friends when it comes time to explain my disease. Here is a threat I started about it a while back

https://www.healingwell.com/community/default.aspx?f=38&m=1781459