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Ulcerative Colitis
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Posted 4/22/2011 11:22 PM (GMT 0)
maybe you could make them all t-shirts w/colon's on them and "team not so sickly girl on the back". JK ; )
Posted 4/22/2011 11:35 PM (GMT 0)
I agree with others that your fiance should be the one to close the door. It should not fall on you. You didn't start it, nor did you ask for it. As others have said, he should just gently explain that you appreciate their concern, bu you are not comfortable talking about it.

Just as another point of view, I was also somewhat secretive about my UC for a long time. Recently, it hit me that by telling people, and giving some information about the disease, we are creating awareness about it. So many people have this disease, and yet most people know nothing about it. The more people who know, the more awareness we create, the more donations that might be given, and the more understanding people will become.

Post Edited (mom2panda) : 4/23/2011 7:47:51 AM (GMT-6)

Posted 4/23/2011 2:04 AM (GMT 0)

runawaybride3 said...
Oh yes, the unrequested suggestions!!

"I read this thing that said food might be a factor in UC, did you know that?"

"Why do you eat milk products, don't you know that everyone who has a sensitive stomach should stop eating lactose immediately?!"

"I would never take medicine, it will kill you. Just eat healthy and take garlic supplements."

"So you have to go to the bathroom more often than other people, at least you don't have arthritis/diabetes/migraines."

"Just hold it in, we'll be there in an hour."

Sigh!


Ha ha ha ha .. oh I have heard all of these many times.. all I can do anymore is laugh .. its the only thing that keeps me sane
(I'm not laughing at you by the way.. just laughing cause I can relate)

Post Edited (superdoo615) : 4/22/2011 8:26:59 PM (GMT-6)

Posted 4/23/2011 3:22 AM (GMT 0)
"Just hold it in; we'll be there in an hour." (LOL!) Whoever makes this kind of comment needs to read the Website at ccfa.org-- to bone up on the major issues IBD patients face. Beth75's suggestion for matching T-shirts is great-- because all relatives who get them can then join a "TAKE STEPS March" sponsored by CCFA annually to raise money for further medical research on IBD. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/23/2011 1:45 PM (GMT 0)
subdued- My husband has talked to them about this and other issues we have and it is always a big argument with them. I have talked to them and it is a arguement. It is always poor them. They do wrong and never apologize and then blame me or my husband. Like we were just telling people about your illness and well we can't tell anyone Teresa or Bens problems they get mad. I have been dealing with them for 11 years now and I just don't go over to their house, they have a family picinic every year and we go to that to see my husbands Grandma and Aunt and we will go to his Grandmas house once in awhile but as far as my in laws I stay away from them and I don't talk to them on the phone anymore. Like I said we have had more issues with them then just this. Like they had my son over at their house and put him in the front seat of the car(he was three). I told them not to do it and they did it again and again. I finally went off on them and then they got I was serious. Also, last summer my father in law took my older son over night and my son came home saying my father in law was talking about us to my husbands brother. Saying we were a holes and so were my parents and he told my son he is fat and that he eats like crap and he should be his dad. When we comfronted my father in law all he said was well, he wasn't suppose to hear that and it is all true. You don't say that to a 7 year old. So, now my kids aren't allowed over there, period. Oh, the summer before he was at their lake home and he broke his arm and they only called me when they got to the hospital and they needed my permission to treat him. they didn't call me on the way nothing.The hospital is a hour away. Then when we got there my mother in law was complaining because it was talking so long and she couldn't get a fish fry. He broke his hand and wrist and had to have surgery and she was complaining about a fish fry. I have given them chances but as of last year my kids can't be alone with them and my older son because of what my father in law said doesn't want to go over there. I also distance myself and hardly see them maybe one or twice a year. My husband doesn't see them really either. He is fed up with it also.

Runawaybride3 I have heard it all exspecially from my in laws. I think people don't get it. My favorite is just hold it. Yeah because that works. lol

Posted 4/23/2011 4:16 PM (GMT 0)
Teresa: That is terrible, they are very disrespectful. I wouldn't see them after going through all that either. To top it off, they are really inconsiderate about your IBD. My in-laws aren't that bad, they are really good hearted people, they just yap, I don't think they would do any of that other stuff. It is my fiance's fault for discussing it with them so in depth. It was fine when it was just UC, now they are involved in all aspects of what is going on with my treatment. I know why he told them - it is because they are having a very stressful family event and I don't want to promise that I will be there because UC is so unpredictible. It is also very far away and I need a pet sitter or I need to bring my pets and it's just a lot to deal with when I can't even predict whether I will be feeling well in a few months from now. My condition has been stable for a while but all my meds were recently changed and I could end up flaring up. My UC is very up in the air right now. I understand why he told them so much but I think he could have probably told them a lot less and it would have had the same result. People just don't know when to stop.
Posted 4/23/2011 5:47 PM (GMT 0)
I have the opposite problem my mother and siblings treat uc as if it is a disease I made up to get attention. I just had a total colectomy and not a single relative has come over to see me or help my family. Families can be very strange.
On the other hand, I feel like your fiancee's family is thirsty for knowledge about the disease because you are prescious to them but it also sounds like they are a little fascinated by it. You have to admit it is a disease without a lot of answers and interesting conflicting theories.
Setting personal boundaries when you don't want to talk about it is very important. People often don't realize when their questions are way out of bounds. Yesterday I had an executive job recruiter who is reviewing my husband for a position call and ask about my surgery. I gently reminded them that researching family health conditions of job candidates is illegal and that my condition is protected under ADA. Needless to say my husband doesn't want to work for them anymore.
Posted 4/23/2011 6:02 PM (GMT 0)
Subzeromambo - that is just absolutely terrible. I am so sorry to hear that you have no support from your family. Deplorable.

Good for your husband in not going for that job. Hard to believe that your condition would actually have an effect on whether he would get the job or not. Ridiculous that they would ask!
Posted 4/23/2011 8:27 PM (GMT 0)
LOL I know what you mean. My ex girlfriend who I was with for a couple of years knew about my condition only because she was with me when I first had symptoms and went to the hospital with me. If I only knew, I wouldve acted like I was fine and went to the hospital by myself. I kept it a secret and only told my immediate family and my girlfriend knew about it ofcourse. I figured I wouldnt tell my aunts, uncles, cousins etc because I didnt want them asking me if I am fine every 5min or if they see me at a family gathering with a beer in my hand, they might snatch it from me and tell me no like im a kid. We also ALL go to the beach every weekend during the summer and make a lot of food over there, I dont want them asking me if I can eat this or that.

My ex girl on the other hand, told her WHOLE family!! grandparents cousins everybody! So every time I see her family I'd have her aunts asking me if im ok, some telling me what I have like theyre doctors, others telling me that I dont have inflammation, that I have parasites and suggesting some home remedies, what the?, some making jokes, her mom once said that no other girl would like me because of my condition lol these people were crazy. She even told her friends and co-workers. On top of that, we had mutual friends so when she told her friends, thw word spread then some of mine knew too! Good thing we broke up eventually, No trust there and I deserve better



If they cant deal with it, its not your problem

Post Edited (Ernee) : 4/23/2011 2:32:22 PM (GMT-6)

Posted 4/24/2011 2:00 AM (GMT 0)
I'm guessing he talked to his family the way he did because he needed some kind of support as your caregiver/support person. It's a big job to have and can be really difficult for them, so he may have needed to share the load with others or just get some feedback and support. It doesn't really make it right that he talked about your personal health information without your permission, but I don't think it was a malicious act.

I think the best thing would be to either handle it yourself or assign the task to him. If you want to take care of it, you should just be able to tell the next one to inquire, "I am doing fine. As much as a I appreciate your concern, I am not comfortable talking about this." and then redirect things to another topic. If you want him to take care of it, then he can just tell them that you would prefer not to discuss the matter with them anymore and ask them to stop mentioning it.

It sounds like they really are concerned for your well being though, which is great even if sometimes annoying!
Posted 4/30/2011 8:19 PM (GMT 0)
run: He did it for his own purposes. He is trying to get out of going to a family event and he thinks this is a good excuse.

I received 2 more "get well" cards this week and multiple inappropriate posts on my facebook wall. Very annoyinng...
Posted 5/1/2011 3:06 PM (GMT 0)

notsosicklygirl said...
You guys are right. I need to be honest. I will tell them that I appreciate their concern but that I am doing "ok" and I prefer not to talk about it. :)

I don't know why it is so hard to simply state the truth sometimes.

bookworm, that is too funny that they all treat you like you're at the end. That's kind of how my fiance's grandparents treat me. They are 85 years old and they treat me like I am in such bad shape. It's odd.

I think you have received some good advice in this thread. If it bothers you that much then tell them it is extremely complicated, the doctors and medical science have no cure nor clue and you spend enough time staring into the UC tea leaves each day trying to piece it together so you would just like the family to go about their own business and for family time to not be about this confusing disease as it will end up wasting everyones time further adding to the frustration.
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