Anonymous wrote:I know she feels perfectly fine physically now. Maybe it's just getting to grips with the illness? She is a very anxious person.

Yeah, I would hold you at arms length, too. It is shockingly presumptuous of you to declare that your sister "feels perfectly fine" when she has a chronic illness such as this. She might feel fine today--tomorrow is completely different.

Honestly, you sound very needy. Someone dealing with something like ulcerative colitis is likely physical and emotionally exhausted and has absolutely nothing left to give. And this is a very recent diagnosis that has turned her world upside down, after she spent months trying to get answers of why she was in immense pain.

OP, it seems very likely that you, like your sister, also have anxiety — which is why you are feeling so unsettled with your sister’s behavior, and are personalizing it. It may be a good idea for you to get some therapy to help you deal with your own emotions, especially now. Look for someone who specializes in anxiety disorders.

Hi OP, are you my sister?

When I was diagnosed with IBD, my sister said it wasn’t a big deal when I had to take methotrexate and 6MP, and that potentially losing some hair “wasn’t a big deal” and I would be fine.

Exactly PP. Just sit with her, treat her with kindness, love and understanding. It's a disease that comes with a lot of embarrassing and frightening symptoms. She may not be in pain but she sure as he'll will have a lot of anxieties, for all the reasons mentioned above as well as others she may not be saying about.

From one website: "Symptoms include rectal bleeding, bloody diarrhea, abdominal cramps, and pain." So she may be quiet and withdrawn because she is focusing on not shitting herself, or worrying that she is going to shit herself, or remembering the last time she had blood coming out of her anus and wondering if it's happening again. Or she may be worrying about what's going to happen down the pike, whether she's going to get colon cancer, when she's going to have to have a tube stuck up her pooper again, so on and so on. It's not about you. If you're there for her, even when she's being quiet and withdrawn, you are doing a great thing and being a great sister.

OP, back off and stop trying to figure her out. The relationship between the two of you needs to be of equals, with equal respect for each other, not you walking on eggshells trying to please her or because you're trying to figure her out.

Yep. It's not all about you. Unless you have a chronic condition you hsve no idea what the daily struggle is, in pain or not.

Anonymous wrote:Its like she keeps me at arms length and just goes really quiet. I just want to understand it from her side. I am not scheming at all, just trying to make sense of it.

Except that you are totally discounting things, insisting that she's not really in pain, that she's totally fine physically...but she's not. She was in real pain for six months or so, and she's got a chronic condition that causes discomfort and that requires ongoing treatment and management. Sometimes that is exhausting. If you are constantly downplaying or dismissing her pain/discomfort, then she's pulling away because that's obnoxious. Otherwise, it's probably that she's tired, anxious, stressed, and trying to figure out what her new normal is. Or she doesn't want to talk about it all the damn time, because it already takes up so much of her headspace. And you are making it all about you. It's not all about you. You don't need to understand it to be sensitive and sympathetic.

Its not all about you. Think of how scared and overwhelmed she must feel. You need to show empathy and put yourself in her position.

Don't waste energy trying to "understand it". Really, don't.

Maybe if she is still coming to grips with it, that she isn't in a place to explain it to you as she doesn't get it fully herself. You need to self-educate yourself and not depend on her to to do that all the time. She should only talk about it voluntarily instead of being asked or even badgered. I'm the PP with a chronic condition and I know I'd get really quiet if I had someone saying they wanted to understand it from my side so was probably asking a million questions, and I maybe wasn't feeling up to talking about that day. I also tend to get tired of talking about my issues because sometimes I want to think about something else. I know if I was with my sister, I would want to be talking about other things and getting my mind off things.

My advice is to let her talk voluntarily for some time and not pry. Educate yourself on her condition by talking to a medical professional or signing up for a family support group. Read books, journal articles, etc. Just because she has a chronic condition doesn't make her have the responsibility of educating you.