Caregiving and the Sharing of Stories

I see it all the time - the way we feel we are entitled to one another’s stories. The knowing of them, the sharing of them. It’s a pitfall I see in social media culture, as someone who literally got to where they are because they shared their story on social media.

Perhaps it is this first hand exposure that has me feeling the way I do. As I scrolled through my socials, as one does, I noticed multiple accounts I follow sharing “life updates” involving medical events. These medical events, though, did not belong to the poster. They were the medical experiences of loved ones - aging parents and children and spouses - that the creator had taken it upon themselves to share.

I see this done well, and I see it done poorly, and it was the latter I took note of today. I follow many accounts, and have built many relationships with, people who share their caregiving journey in a way that feels respectful to the person involved. I do not minimize the impact that sharing our stories can have. And I’ve seen this done poorly, where personal details are shared in a way I wouldn’t want if I was that individual, and I feel myself cringing inside.

I have also been both people.

During my first transplant journey, my story was very public. I come from a small town, people know who I am, they know my family, and I realize full well that what happened to me wasn’t “normal”. People were curious. And, when things went sideways and I spent an extended amount of time in the ICU, details were shared in a way that I didn’t control. I know why my loved ones did this, and I don’t blame them for this. My husband still fiercely protected my privacy by not allowing photos to be circulated (My one request). I don’t discount community support in getting us through that time. And, when I was awake and coherent, I found out details of my own story on social media. I found out details about my own self that hundreds of other people knew first. It was jarring to say the least.

I still continued to share updates, but it became more important to me that I control the narrative. I wanted the situation to be seen from my lens, through my eyes, and not the story society portrays of organ transplantation.

Months later, I found myself facing another surgery (replacement of my entire abdominal wall) and this time I made a promise. I did not publicly share news of my surgery until about a week prior. I had a handful of people in a group chat, and other than that no one got updates. The only update I allowed others to post on my behalf was when I was out of surgery and recovering. Despite all the efforts I took to protect myself in this vulnerable time, still words that were shared felt invasive. I read back the update when I was coherent and it felt wrong.

As someone who has had positive experiences sharing their story and negative ones, who has read social commentary on their own experience and their own body, it gives me insight into this subset of culture. Every time I see these caregiver posts, from adult children of aging parents or medical parents of kids, I wonder what that individual at the centre of this must be thinking. Are they aware information about their bowel habits are being shared online, or their caloric intake, or that pictures are being distributed of them in very intense situations post surgery?

While not everyone will have a similar reaction to being shared online as I did, I do wonder how this public story culture had eroded at the right for privacy. It has me examining this idea that disabled or sick individuals are entitled to less privacy and respect than able bodied individuals, which bleeds into a larger societal conversation on ableism.

I think, too, of some writers I admire facing down diagnosis’ who refuse to name their conditions. They refuse to give detail or description, because in doing so we’ve lost the point of the story. The point isn’t in gory detail but in how we chose to survive. It isn’t what they endured but the wisdom they have acquired that matters, and I tend to agree. The majority of what I experience is public knowledge. I write about most of my conditions and experiences as a way of processing. But I hope to be known for my insight and wisdom rather than “that girl with the chronic illnesses.” And at the end of the day, my hope is for my story to be told in my words. I do not want to celebrate the cultural norm of sickness and survival, to fit into the narratives handed to me.

And while I am not currently in a caregiver role, I have been before and I know I will be again. And I hope in those situations I can hold my loved one’s story with as much grace and dignity as they deserve.