Holding each other's stories
The power of telling and listening to care work experiences
Charlie Warzel interviewed Andrew Kaczynski on the power of sharing his experience as a caregiver. When Kaczynski's infant daughter was diagnosed with cancer, he went from being incredibly private about his family life to sharing the experience on Twitter.
"But when she got sick, and we got the pathology report, we didn’t know what to fucking do. I basically put that first tweet about Francesca out there because I didn’t know what to do. I needed help. I needed help from anyone. It was an act of desperation, I’ll be honest. At that point, we’d only talked to one doctor — the one who diagnosed us — about treatment, and they’re telling you that your kid will be in hospital for months and on a feeding tube. When he gave us the diagnosis I dropped the phone and threw up and my wife had to take over the call. The outpouring of support was something I never in a million years would’ve suspected. People started offering to help, other people began calling and texting. Maybe it’s because my experiences with the internet before that moment were never very positive, but I was shocked."
Even after he discovered Twitter as a source of support, it took a while for him to share the full experience. He felt a certain pressure to stay positive and he didn't want to talk about just how hard it was.
"The last month of Francesca’s life, I finally let people in. There is no silver lining to your child being on a ventilator in the ICU slowly dying. There’s no positive spin to put on it. It was so terrible and horrible and, I don’t know, I find that when I feel the most horrible grief and consuming sadness I want to share about it. Especially now. I find it therapeutic to share with the world how I’m doing."
When we see suffering, we're moved to take action. It's so hard to accept the limits of our powers. Kaczynski reminds us that sometimes just being there is the best way to show support.
"So many people have a desire to help or fix the situation in some way. But they cannot fix it. So, in response to posts, my feeling was and still is: I need you to just be there. I need you to hold my story. Just doing that will help me."
The power of sharing our story can go beyond having people be there.
Stories of care work that get in front of people with power can change things.
Multiple times a day I deny requests from researchers who want to join our private support groups.
I get this slightly alarming bitter laugh when I see requests like this, where someone clearly states they're a researcher and says they won't violate our privacy.
How can a researcher sit in on a private support group and not violate the privacy of the members? No researcher would slip into a caregiver support group in a church basement without getting informed consent, figuring it's fine as long as they don't reveal identifying details in publications. Or maybe they would.
Then, with a nudge from Donna Thomson, I asked myself why I was letting this be a problem. There were other options I wasn’t paying attention to.
As an organization, The Caregiver Space wants to amplify the voices of people doing care work. We want to encourage people to do research on care work. We want to support companies developing products that help caregivers. We want to help reporters and filmmakers to do their work.
How could their enthusiasm to listen to and share the stories of caregivers feel like a problem?
We know the power of a story. To have the relief of letting go of things that don’t need to be secrets. To see our own experiences reflected and normalized by the lives of others. To see stories change things, so things will be a little bit easier for people finding themselves serving as caregivers in the future.
As important as it is to connect researchers and the media to caregivers, it's not something that belongs in a private peer support group. So, I set up a new group.
If you're a caregiver who's eager to share your story with the media, get companies to pay attention to your needs, and let researchers understand what your days are like, I'd love to see you join.
If you're someone looking to connect with family/informal and professional caregivers, we'd love to talk to you. Just not in our safe spaces.
So many people focus their careers on caregiving because of their personal experiences. All people who provide or have provided care are welcome to participate in our communities as individuals. There are valued members of our community who are journalists, filmmakers, entrepreneurs, researchers, and people involved in all sorts of businesses related to care work. They show up as themselves, not as a representative of an organization.
Thank you for all you do Cori. I love how protective of the sacred space you are and also for setting up this opportunity. I think researchers need to capture the experiences of caregivers and share that in literature so that things can change and be improved. I appreciate you setting up that space, to facilitate that connection, its a special thing to provide that in addition to all you both already do.
Thank you for all you do Cori. I'm very glad that you are keeping researchers and poll takers out of the private group. I know as a moderator as I read a new post request, I try to ensure there is no soliciting for funds or attempts to sell a product. It seems lately there are quite a bit more of these and I believe that means the word is spreading even further about this wonderful group. Thank for your awesome resource.