Anyone else have bigtime opposition from friends and family w/ your UC?

Hey everyone. I'm new to the forum, so I figure I should also take the opportunity to introduce myself. I'm 27 years old, I'm a massage therapist, and I have a degree in research psychology, hoping to get a master's in Speech Language Pathology (if I can manage to control the UC) I have been living with UC for just over a year. (pancolitis) I also have arthritis due to colitis. I'm on imuran remicade and methotrexate. (tried asacol, prednisone, sulfasalazine)

Anyhow, to the topic:

I am curious to know if this is a common experience, and how you all have deal with it if it has happened to you;

It has become increasingly difficult for me to deal with many friend's and many family member's comments and feelings about my having UC. It seems like acquaintances when the find out about my having UC, immediately have a solution for me. Usually something a friend has tried for some sort of problem that's unrelated to UC. "Ooo, my sister had stomach problems and ____ stopped everything! I'm gonna get you the brochure!" I realize they only wanna help. But no matter what I do I seem to be making them upset. It's very frustrating. So far I've tried two methods. 'The Explain How UC works Method', and the 'Awesome I'll Try That Out, Thanks SO Much' method.

The "Explain How UC Works" method has seemed to either not phase people or just make them mad. This is pretty strange for me. I am not e mean or blunt person, I would rather lose an argument than a friend. I have a lot of experience talking with people about touchy subject without offending, and I'm pretty good at it, or so I thought. It seems like when it comes to health stuff, a lot of people can get very defensive when you say something that challenges their current beliefs on it. But I can't even explain how UC works to most friends and family. It is strange and becoming hurtful. They hear "ulcer" and think its stomach ulcers and tell me not to eat spicy food, or hear diarrhea and tell me to eat healthy food.

But the comments are starting to really bother me more than they probably should. I'm becoming more angry whenever I hear them.

The majority of my friends and family members now think that I'm not getting better cause I'm just leading a sloppy lifestyle, eating nasty food and being a slob (they are becoming increasingly blunt about it). Some of them think I'm fine and I'm not working as much as usual because I'm just lazy and I'd rather be at home. (although in my past Ive always either had two jobs or full time school and full time work. I've never been lazy, and they know this, or so I thought). They have refused to even google the term "Ulcerative Colitis"

Many of them suggest ridiculous cures, and then get mad when I haven't tried them.

I don't mean to sound complainy, but this is the toughest thing I'm dealing with right now, and I am excited to have finally found a community of people who are dealing with UC.

But I'm just not sure how to deal with it anymore. They all know how to cure me, they are mad that I'm not trying their ideas (although I have, they just think I'm lying about trying them cause I'm not cured yet) I can't educate them, and I feel like I can't deal with their comments anymore, It's killing me. It makes no sense to me, it's so weird I feel like its a bad long-running joke, or I'm stuck in the twilight zone. The thing that is holding me together is my sweet loving wife. She's off the charts incredible. So has anyone dealt with this?

Sorry to hear that you've been dealing with awful comments and how you can be cured - I've dealt with this so many times too. My family especially is the most irritating because they THINK they know all about this terrible illness and what I should do... I hate to tell them that most things they've offered won't work as UC is a flare/remission and isn't always ruled by diet. One time, my sister said, "Is it because in high school you were eating Whataburger almost every weekend - is that why you messed up your stomach?" I wanted to kill her.

Anyways, congrats on your mission on being a Speech Language Pathologist. I'm an Occupational Therapist and I know that speech therapists are a great asset in the healthcare field!

Welcome to the club. I have also heard about how I caused the problem and "X" will cure you, and blah...blah...blah. I have concluded that many people really just don't care about anything except themselves. They will give you an hour long discourse about a hangnail or how hard their life is because they have to deal with their kids, or vacuum, or cook or whatever. I have found it is easier to deal with it on my own and with Maisie my daughter than to try and listen to everyone else. These boards excluded of course.

I think a lot of times the people around us are desparate to find a simple solution to what ails us because they're so threatened by it. Hee you are, a close friend/family member, young, healthy, and yet suddenly you got a terrible condition (their thinking.) If they can believe it was something you did - drinking too much, eating the wrong thing, etc. - then they believe they can keep from getting this terrible condition themselves. It's a sort of magical thinking, in a way.

My parents were both gone before I developed UC, and my husband has been my rock. For other family and friends, I usually just say "I appreciate your concern, but I'm doing okay, thanks."

I don't think it's just UC or Crohn's that brings out this behavior in people. My M-I-L died of lung cancer, she was a nonsmoker. She was a fantastic person who mothered everyone in her life, family and friends. You would not believe the comments I heard from people who should have loved her.

It's fear and ignorance. People want to distance themselves from disease and make it your fault even when there is no fault to be placed.
Yes you really learn who your friends are, who is compassionate and who is just a blanking idiot.
I will only share my condition with someone who I can help in some small way. No one else deserves that information...except you guys.

Ask your husband to speak to his mother. I remember once telling my husband "You'd better make her stop doing that, because if she doesn't I'm kicking her out of my house for good!" Nuff said!

Wow thanks guys! I feel better just knowing I'm not the only one. My circle of friends has really shrunken a lot. I have always been an open person with tons of friends and I always invited people over all the time. I've had to change that. Much smaller groups of friends.

I was expecting people to tell me to keep trying to convince people that it's not my fault, and each them how the disease works...

I am really loving this board already!

I have had a few good friends research the colitis (I guess they thought I hadn't considered the internet as a source of info) and come back to me and say 'wow, did you know they really don't know what colitis is caused by?' (Well, uhm, yes, I did know that:) Most people mean well, and they're just trying to be solution oriented. It's frustrating, but I try to keep reminding myself of this. And as I've mentioned in a post before, my parents are totally convinced that I should just have my colon removed and voila, problem solved!

It helps me to have a husband who laughs with me about it, and hearing other peoples stories here is a great support too. Good luck with your healing!

Yes, thanks subdued, I think that is what I meant to say.....that it is just a complicated disease, and it takes time to figure out what the root issues are, and how to address them. I think we live in a culture that just assumes there is a pill or holistic treatment that will miraculously address any disease. It's difficult for each of us to come the that realization for ourselves, and it can be frustrating to shepherd even the most well meaning friends and family through the process.

Good call on the magical thinking, Judy2. That makes a lot more sense than the "people are morons" theory I had consigned myself to...

I just wish it were a bit different. I am still new this and I'm trying to get used to it. It is easy to get bitter and I'm starting to... I have really gained a big appreciation for people who have lived many years with a chronic condition, especially ones that are visually apparent, and still have an upbeat attitude when dealing with new people who are accidentally ignorant. It must have taken them years to become so strong.

he he "accidentally ignorant" I like that one. Could be a terrible band name

Ha ha, yeah exactly! My wife always get little "helpful" hints from friends and acquaintances, concerning my UC. Sometimes it's funny. But many times they will check up to see if we've tried it and get upset with her. It's tough on my wife too.

This forum really is AWESOME! I haven't been in this good of a mood in ages!

Sorry, it sounds terrible that I'm so happy to hear about people's tough times with UC, but I live in a smallish town, and I'm the only one I know with UC.

Don't worry, your not alone, I had one know it all tell me that as my grandad also had ulcerative colitis it was obviously caused by a bad family diet. I have never lived with him so how the hell she worked that one out I'll never know. She was right with the family link tho, as I have hereditary UC, not diet linked in any way. I just learnt to agree with everyone and their stupid suggestions and stopped talking about it to anyone, then they couldn't bug me!!!

To me it was the easiest way out, they soon learnt to shut up, and if the old diehards kept on I blinded them with information from the specialist!!

Good luck, Heather

Fortunately I haven't had anyone offer me any idiotic advice and overall my those in my life are reasonably supportive. The one exception would be my parents. My father is a dysfunctional relationship altogether so I won't go into that, but my mother has really disappointed me. She was diagnosed with UC several years ago and hasn't had a flare in probably 20 years and doesn't take medication. So basically I'd say if she has it, it's very mild if she even truly has it at all. Anyway, my case has been anything but mild and is pretty problematic like it is for most of you on this board. I'm not one to go on and on nor complain but you'd think she'd want to know how her daughter is doing. Whenever I call her and after some superficial chit chat, try to bring up the topic, she gets very quiet and changes the subject. I know she loves me, but she never proactively calls me anymore and I've stopped bringing up the topic when I do call her. The only reasoning I can come up with is that is pains her to hear that her daughter is going through something like this and avoiding it is her way of pretending it's not happening.....