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Help with family: has this happened to you?

The sister with whom I have had the closest relationship since we were children recently told me, "you are just not as engaged anymore, and you need to know how that affects it affects me, and my [adult] children." I tried to explain that yes, I understood that this is true. I am not as animated as I was prior to these 15 years of unrelenting illness and ongoing disappointments [from failed treatment programs, some which made me more ill]. I am so very fatigued all the time, my mind isn't as sharp, I am not as witty. She complained that I called her more when I was working full time [I was forced to take an early retirement due to poor health] and I paid better attention to her. All of that is true, but the conversation left me feeling, "well, golly, thanks for pointing out yet another loss in my life, as if I wasn't already aware that I am barely managing." I couldn't think of anything more to say. I tried to help her understand that it is hard to live with an invisible disability and truly, I was doing the best I can. She changed the subject - I think she realized she had pushed too hard, but when we ended the phone call, I thought of how many friends have chosen to end decades old friendships. They were ok with my illness at first, but as the years have gone on and my health remains poor, I have watched friends drift away. (Others, I should add, have been amazingly steadfast.) I guess my sister can't so easily do that, being family and all, but I have to admit, this conversation made me trust her less and want to engage with her less. The very opposite of what she wants. My energy is so limited. Any thoughts from my fellow IBDers?

  1. Something similar has happened to me with a family member, so I can relate. I try and let comments and inquiries from my family go in one ear and out the other. I have come to realize that their intentions are always from a good place and their concerns come essentially from a loving and fearful place. Overall, they mostly don't understand our plight and are just concerned and wish things were how they used to be. Which is totally valid. I know the feeling of you wanting to pull away, but I would try my best not. I think your sister just really misses you and the delivery is probably not the best. But from your story that's what I see. She loves you, misses you and is just having a moment. But don't push her away, because then in a way your diagnosis wins. Ps. of course this is just my opinion, you can do whatever feels best. Big hugs, Elizabeth (team member)

    1. Good advice, Elizabeth! Thank you. You consistently offer pearls of wisdom. Again, thank you!

      1. Oh, thanks for the kind words. And it's my pleasure, that's what we are here for. Hugs to you, Elizabeth (team member)

    2. This has not happened to me but sometimes I feel my siblings act like I don't have crohn's at times.

      1. I hear you @innerbanksmile. I have dealt with the same. You aren't alone. Big hugs, Elizabeth (team member)

    3. been there!! We already have a tremendous amount of guilt, just because we have a chronic illness. Much of which we put on ourselves, but none of which is actually our fault. People around us adding to is actually the last thing we need!
      For me, it was mainly from friends. I've cut many people out over the years; people that made me feel like I constantly had to explain myself, or who seemed to get bored of my response always being the same when they ask how I am... I guess it's easier to cut friends out than it is family that you are/were close to, though.
      I had to be selfish, and think about how my relationships were affecting me. Like you said, I have little energy, so I'm very selective about where I spend it. I can't be on the go all of the time anymore, and I need the people in my life to understand that. I also need them to understand that I don't always even have the energy to talk! It might take a while for me to respond to messages, and I don't expect to be made to feel guilty about that!
      The reality is, it's left me with only a handful of friends, but that seems to work better for me!
      ~ Sahara (Team member)

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