UC to J-Pouch Story

Offering Support: What to Say in a Difficult Situation

Posted by jenellepower on October 21, 2008

I’m finally getting around to posting again after dealing with some new issues (Positive: returning to work full-time and going back to the gym. Negative: unforeseen financial ramifications from being sick and my first appointment with the j-pouch surgeon where I was told it’s not clear that I don’t also have Crohn’s, so the OK for the next surgery is pending the results of another pathologist reviewing my case).

I’ve been thinking a lot about what others say to me. I realize it can be a very difficult situation and people are unsure how to react. I’m also aware that I do not always say the

Here is a picture of me about 5 months post-surgery.
Here is a picture of me about 5 months post-surgery.  I'm a bit thinner and have less hair but am starting to look normal again.

most appropriate thing in every situation, though when I’m in unsure, I

tend to lean toward not saying enough rather than saying the wrong thing. That isn’t necessarily better, just a natural tendency of mine.

So here are some points/tips regarding what to say to someone who is going through the surgery process (or at least what I would like to hear – I’m sure others having differing opinions) and possibly in other situations:

1. Don’t predict the future. Telling someone that everything will work out isn’t necessarily helpful. At times, it can feel like you’re downplaying the struggle that the individual is facing. For example, now that I’m worried about my pathology report, people say things like “I’m sure it’ll be fine and you’ll get the next surgery.” I don’t find that resurring at all. If the surgeon doesn’t know, then you don’t know. Something like, “I hope it works out for you” or “I’m sure the waiting must be really difficult” would be much more helpful.

2. Do not try to show empathy by comparing your own experiences to mine. I’m not saying that other people don’t also have difficult experiences or that because my experience was so horrible that no one is permitted to complain about their own difficulties. I find it odd that some people are very hesitant to even mention feeling sick or tired around me. The fact that I am so sick does not make you less sick. However, when I am sharing my experience at the hospital, for example, telling me about your trip to the ER with a migraine is not helpful. Just listen and respond, don’t compare. The exception is when you actually experienced the same illness and are comparing/contrasting your experiences. I say to my partner that “unless someone has had their intestine threaded through their abdomen, they just don’t understand”.

3. Acknowledge other people’s feelings without judging. Often when I’m sharing an experience or a recent problem, I just want someone to say something along the lines of what psychologists call Reflection of Emotion. For example, “That must be really frustrating” or “Poor you, that must be difficult” or even “That must suck”. It doesn’t have to be eloquent; it just has to show you’re listening to the situation. Never tell someone they shouldn’t feel the way we feel. We have little control over the emotions we experience in reaction to an experience.

4. Follow the lead of the person who’s sharing their experience. This is relevant both to the amount of information the person wants to share and the topic the person wants to focus on. Try to be sensitive to what a person is telling you. If a person is providing vague answers, don’t push for details they don’t want to share. I think this is also applicable to those close to someone who has had the difficult experience. My partner has found himself in situations where he has been pressed for information about my illness that he was not comfortable sharing. In addition, I sometimes find myself repeating the same issue in a conversation. If someone continues to bring up the same subject repeatedly, then perhaps they feel that issue is unresolved for them or maybe they would like to talk about it further.


5 Responses to “Offering Support: What to Say in a Difficult Situation”

  1. Erica said

    Thank you for this post, as the sister-in-law of Mark I often struggled to find ways to show support. I know in the beginning it was common for me and others to say “oh, you’ll be better soon” or “hope you feel better” – not realizing the magnitude of his illness. I don’t think we teach other how to support through chronic illness and so this post is really important for all friends and family to read.

    Thanks again, and you are looking great 5 months out from surgery!


  2. ucvlog said

    Hi lady,
    You provide very good suggestions about how people should treat you. I have two surgeries down and my takedown is in December. It’s a rough experience and I think outsiders generally want to understand what you are going through but it’s really difficult to express that feeling, especially when you don’t feel much like talking about it. With strangers, I often find myself not telling them at all about my colitis or surgeries until it’s absolutely necessary, partially because I don’t want to burden people with my problems. How do I expect them to react to something so terrible?

    Keep fighting,

  3. jenellepower said

    Hi Erica,

    I’m sure that since you seem to be very aware of offering support that your caring comes through. Providing support is such a difficult and crucial aspect of chronic illness, yet people rarely feel comfortable asking for what they want. I’m so glad you found it helpful!


  4. jenellepower said

    Hi Dennis,

    I’ve been following you on your vlog. I haven’t been through all the posts yet, but so far it’s great. The video really helps make it personal and practical. I find myself being pretty vague with strangers, too. I’ve run into very awkward situations where I’ve met acquaintances after my hospitalization and looked so different that it had to be acknowledged, yet I really didn’t want to get into detail. Definitely tricky.


  5. Kristen said

    So true, so true! I love people comparing their appendix removal or ACL knee surgery repair to my surgeries 🙂

    I’m sorry you are having such a rough go of everything – doesn’t seem fair that nothing seems to go your way time and time again. You are dealing with it very well! I’m still waiting to find out about disability myself. Doesn’t seem right that on top of dealing with horrible illness we have to deal with financial woes too. I don’t think it hit me how difficult the financial stuff would be until I actually stopped getting paid last week.

    Let me know if my limited lawyer skills can be of any help to you. I think your decision to pursue what you told me in your email is a good one.


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