Storytelling regret

I told Mabel’s story to a patient who was kind enough to ask- but had been rude to my staff and frankly too cavalier and too familiar with me. I will tell my daughter’s story as often as I can, but I didn’t like how she asked so nonchalantly “so, what happened to your baby?” It wasn’t nerves or awkwardness; I think it was her personality. “So you knew, then?” she asked matter-of-factly when I told her about the low fluid, the non functioning kidneys and potential for small lungs. “No, we didn’t know if she would live or die. No one could tell. We just had to wait and see when she was born.” I was annoyed that she seemed to imply that knowing ahead of time made it easier for me. It minimized all the grieving I did in my pregnancy and all the grieving I did (and am still doing) afterwards. Worst of all was her casualness about it all. I was left with the impression that she thought it could never happen to her. Newsflash- it could. It probably won’t, but it could.  For the first time, I felt some regret about sharing.

Have you ever shared your loved one’s story and regretted it afterwards?


12 thoughts on “Storytelling regret

  1. I’ve had a number of people dismiss the twins and our loss. They were so tiny, we didn’t know them yet, etc. I’m sure you’ve heard such comments.
    And it’s so annoying to have people assume that it’s easier because you knew there was a risk. Would they rather lose their partner to terminal cancer or a deadly car crash? Most likely, they’d rather not lose him/her, just as we’d rather have our children with us.

  2. I understand how you feel. I have been careful (maybe too careful) who I tell about my story. However, it still backfired. One woman said, “…if you would be more careful…” I almost wanted to punch her.

  3. I think I would have been uncomfortable with that woman’s tone as well.

    At 4.5 years out from my loss, my perspective on this has changed so much over time. I think for several years I was in a place of wanting (needing) to grieve out loud, sometimes perhaps even beligerantly as a kind of response to all those people who trivialised my son’s death and the impact it had on our family. I also just had a need to have him remembered, to have him count, to speak his name aloud. I inserted him into any conversation with the slightest opportunity. I felt a need to talk about him often and repeatedly (perhaps I was processing my trauma too?). This of course led to a lot of hurt with the poor/stupid/thoughtless responses people gave.

    Over time, partly because my needs in the grieving process feel different and partly to protect myself and his memory from those hurtful comments, I have become more…maybe not guarded, but selective in how and when I’ll talk about him. I feel like it is a privilege to know about him, and not everyone deserves that. And I’ve also learned to be ok with the fact that very few (*Very* few) people besides my husband or I will value or understand that privilege and what he has meant and continues to mean to us. As you say, he is not a casual trivilaity to be inserted into any conversation. I don’t feel the same guilt or confusion I once did in omitting him from passing conversations about my family constellation and its history. Now, it feels like a special intimacy that he is remembered as he is by a spcial few.

    Reflecting on these changes is one of the ways I really know deep down that it has gotten better; I’ve recognised how far we’ve come from those early months of raw and ferocious grieving. I’m grateful for that and for the lessons he continues to teach me.

    • this is very inspiring (not sure if that’s quite the word- hope giving? up lifting? brightening?) to hear how it changes. You describe my feelings perfectly- that need to grieve out loud, to say her name out loud, to make her story count. I’m still very much in that place- though I can see how it’s changed a bit from the earlier days. it’s helpful to see what things might be a few years down the road. thank you!

  4. I’m so sorry that you had that difficult experience. I think it says a lot more about that person and her own needs than it does about your story and when you should share. There’s an essay in the NY Times right now about a woman who had an extended ICU stay and was near death, soon after her mother’s death, and the pressure (both internal and external) that she felt to mold both of those experiences to a cultural narrative… in order to fulfill an overriding societal psychological need that really had nothing to do with her and her mother’s own lived experiences. It sounds like your patient needed to shove your experience into a happy narrative in her own mind. It’s just denial, really… and the whole point of sharing the reality is to combat that denial. So while I understand that you need and deserve to protect yourself, I hope that one bull-in-a-china-shop individual won’t throw you off course.

    • yes- I’m totally learning to recognize how people need my story to have some sort of happy ending (spoiler: when a baby dies, there is no “happy” ending), but people can’t process that, they don’t know what to say to fill the space, they don’t want to process it- so they say dumbass things. I know this- I’ve learned, but yet I”m still surprised how it comes out differently! For now, I just throw this into my learning experience bucket. I”m sure I”ll be able to take something from this experience and put it to good use later on.

      • I had thought about this in med school, too, in the context of cancer. We require cancer survivors to have some sort of redemptive story about their transformative experience… When really they’re exhausted, vomiting and trapped in their own scary, rebellious bodies. It’s such an unfair burden to place in someone who is already suffering – just as you’ve had to carry so many unfair burdens… Including the burden of being forced into a conversation with that patient!!!

      • good analogy- those with cancer. It’s totally an unfair burden! I often tell myself, everyone has their own burdens, but sometimes it’s hard to see others’ and remember that. I have to take some responsibility. SHe was responding to my sign, which said I love talking about my daughter and am open to questions. But isnt it the burden we take on as healthcare providers? We need to care for others regardless of our own burdens!

  5. The therapist who leads my support group says there are two types of people who ask questions: those who ask because they care, and those who ask because they are curious. Broken down so simply, it helped me understand why certain interactions felt so rough to me. The unpleasant interactions are always the ones with people who ask out of curiousity, not compassion. I can’t always tell the difference in the beginning of the conversation, though. The knowledge just helps me deal with the aftermath. I am sorry this happened to you. I hope you have more interactions with compassionate people, than with curious ones.

    • brilliant your therapist is! yes- that distinction is right on. this lady felt like she was merely curious. I dont think she even said the simple “i’m sorry” that most people figure out.

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