At least it is not cancer

Sorry you have to deal with the insensitivity. I have no good reply back because after a certain amount of time dealing with that I would just go off.

They must be the kind of people who comfort a parent whose child died by saying "At least you have another one." Some people are just clueless. I never like to descend to a nasty level but you could say "No it's not cancer, just a incurable disease that lasts a lifetime." Look them in the eyes unblinking until they turn away.

No one in my family has ever said anything to me but I am not the kind of person you say stupid things to (not saying you are) but for some reason they just don't. It sounds like your parents are self-involved and talking about their cancer experience with not much empathy for your daily life.

I thought about it and I think the best thing to do is ask them not to talk about my health this year.

Last Thanksgiving got really really ugly. I got in a big fight with my sister because I said to my dad "there are days I wish it was cancer." My sister jumped all over me and told me that my illness was not nearly as bad as cancer because it did not kill people. Bla bla bla. I admit that it was an awful thing for me to say to a cancer survivor but I kind of lost my composure when he gave me the "at least it is not cancer" lecture yet again. (And my Mom chastised me for not wearing Depends daily.) I love family gatherings!

Are you sure are familie are not related? Just a little ?

Ugh it's so frustrating and I am really sorry you are going through this.
You might or might not want to pull the remicade is chemotherapy too card bla bla bla.
Or you might want to ask them if they crapped out quarts of blood and mucous and if each BM feels like passing a balloon filled with hot lava. And if they are so tired that the only way they can function is to get bags of blood. And if they have so much inflamation in their colon they don't know the difference between gas/mucous or a real BM. Ask them if they had to wear pull ups when they were your age. Ask them how they think they would feel if they had an invisible disease that was terribly painful and debilitating and the people who should be supporting them won't support them but instead accuse them of being * insert what they call you ( lazy, faker, drama queen , hypochondriac are what I get)


But the key with that speech is to say it quietly and calmly and even if they look upset just keep plowing on. And then look at them and wait for them to stumble for an answer. I also probably wouldn't do it in front of 30 people. Maybe like 2-4 of the main problem people.

Good luck and us know what happens.

your parents are absolutely right, we should have a distance and be aware of the fact that so many people would do everything to change places with us. And - our disease may become curable soon and then many people will surely die at the prospect of us being cured for good

Dealing with insensitive and ignorant comments like that can be frustrating but consider the source of where those types of stupid comments come from...people that think like that aren't worth stressing over by any means....sometimes people will learn the hard way too for saying such stupid things like that.

no i don't agree with you Quincy :) if someone says things like that e.g. "at least it's not...." etc, i take it as a way to alleviate the frustration resulting from someone's illness. As far as I've (unfortunately) noticed, very few people would say it just because they are mostly happy to hear that someone is suffering. Most people would rather say things like that "I imagine how much you suffer, it's such a horrible horrible disease leading directly to cancer etc..." And do you think they are compassionate? i really doubt it. I once met a young woman diagnosed with uc. She told me a story about her sister who had always been pathologically jealous of her so when she heard about her sister's diagnosis, she really had the prime time of her life. Suddenly, after one year, it turned out that it wasn't really uc but a bacterial infection and the woman was healthy. Her sister immediately started having health problems, first she was diagnosed with diabetes and finally with some serious neurological disease. Of course it can be unrelated, but this woman is more than sure that this sudden decline of her sister's health has been caused by the change of uc diagnosis.

Cancer can be cured. UC cannot.

Thankfuly, Ewa, you're not a family member. You'd not like my response in person.

q

Just wanted to let you guys know that I survived Thanksgiving without any cancer lectures. My older sister did look at me and say, "You are so lucky to be so thin. I guess that is a benefit of Ulcerative Colitis." errrrrrrrr ok.

Anyway, I am glad to know that I am not the only one with family members who just don't get it. At least I can laugh it off. A cure for UC? God, I hope so. I would like to gain enough weight to not be so "thin" and "lucky."

Hope everyone had a drama free Thanksgiving.

I'm glad you survived Thanksgiving. I've kind of started cutting the people who don't understand the basics of empathy out of my life. I'll put up with a handful of insensitive nonsense comments after disclosing my UC, but that's it. I have fewer friends, but they're better friends.
I've said, "Don't pretend to have any idea what I'm going through" to family members a few times. It generally shuts them up.