Platforming Our Pain Works
Belle Gibson, Scamanda, Me, and You
“This is a true story based on a lie…”
This is the refrain watchers hear at the opening of each episode of Apple Cider Vinegar, Netflix’s new show about wellness influencer who faked cancer, Belle Gibson. You might not be familiar with Belle Gibson (I wasn’t), but it only took about three seconds to realize it was a familiar story, especially if you listened to the podcast Scamanda from a few years back or if you’ve hung around social media over the last decade.
Pain performs. That’s the bottom line. And some people have learned how to leverage their pain, real or imagined, to garner more of their own bottom line. And if you think that’s just other people, people out there, bad people, I’ve got news for you: that’s all of us. That’s me and, if you have any kind of platform—writing, speaking, teaching, singing, etc.—that’s you too.1
If you’ve been here long, you’ve seen me write through the death of my brother, the divorce of my parents, my own years of singleness, my struggles with church, pregnancy losses, infertility, being a witness to gun violence, multiple cross-country moves, the arrest of my brother for sexual abuse and the fall out that happened after it, and so much more. I’ve “opened up a vein and bled”2 all over the pages of the Internet for more than twenty years. And I have no qualms about a future of doing the same.
There is a saying, “Write from your scars, not your wounds,” which sounds nice, but the truth is our best work is borne from vulnerability, not bandages. I’ve volleyed back and forth about my position on this for years, asking myself, “Should I write about this now?” or “Should this be read by others right now?” and “Is there more work in me that needs to happen before I publish this?”
Ultimately, I feel certain in my heart that my work is to make sayable, to take what is all mixed up, unsaid, or unclear, and make it clear. But I am also determined to write what is true, to not lie, to, as best as I can, dig down deep enough to mine what is true about any given situation—even if it isn’t the truth as others see it. But also, to stay relentlessly awake to the ways I am no better than any grifter when it comes to the temptation to monetize my pain.
Who Gets to Tell the Real Truth?
There is a scene toward the end of the miniseries where Belle is being interviewed. She’s wearing a bright pink sweater and her eyes are pooling with tears. We’ve just spent six hours watching her lie, scheme, steal, and grift her way to success, and our empathy is low for her. But when she’s asked the question, “Did you really have cancer?” she says something like, “I thought I had cancer.” The interviewer follows up, “Did you really have radiation?” and Belle says, “I thought I had radiation.”
The viewer recalls this moment when Belle, accompanied by her assistant, brings her feverish son to a man in a dilapidated warehouse, as if that’s a normal place for medical care. The doctor is barefooted and casual, and later, he brings Belle into the room to receive her own care. The doctor is a quack, having Belle strip down to her underwear and strapping a pulsing belt on her waist and somehow “seeing” her organs and brain, diagnosing her with a liver issue, while she sits there in terror and sobs. We, the viewer, think, “What a bad mother. Bring your kid and yourself to a real doctor.”
But there at the end, during the interview, when we have no cares left to give for her, we’re suddenly faced with the reality that, despite her grifting, lying, love-bombing self, it might be possible that she really didn’t know any better, that she thought that was a real doctor and that was good medical care. That she really did have all kinds of issues being diagnosed by a barefoot dude in a warehouse. And she believed him.3
And you know what? I get that. I know a lot of people who have never taken their kids to the pediatrician and if they took their kid to a doctor like that, they’d think it was normal, and then that kid grows up and believes that is normal. And I get that because I have so many moments in my life of realizing, “Wait, this is not normal,” about many things in my own life and upbringing.
Being able to say what is true about our lived experience—even if everyone around us points and says, “That’s not true,” or “That’s not the way it happened,” or “That’s not a legitimate [doctor, pastor, parent, etc.],”—is critical for our own healing and growth. We have to be able to say what feels true, even if, to a relatively objective person, it may be verifiably untrue.
But while saying what is untrue, or unverified, or colored by extreme pain or marginalization can lead to healing and growth for us personally, building a whole platform upon it will only make us (and everyone around us) sicker
If the Platform is Pain and Dopamine is the Medicine, Getting Offline is the Cure
All of us understand how clicks, likes, comments, and shares affect our brains. More of them means, ding, ding, ding, success! Fewer means failure. We become like rats in a lab pulling a lever for more of the good stuff, making ourselves dopesick on dopamine. The makers designed this stuff to work like that and like good lab-rats, we are happy to comply.
Quiet, ordinary, faithfulness does not give us the hits we want. Nor does the normal rudimentary stuff of life. Not even beauty gives it. It’s the salacious stuff or the sicky stuff or the sad stuff, this gets the engagement, this drips the sticky, sweet syrup right into our gaping mouths. We eat it up when it comes across our feeds and, if we’re savvy enough, we learn how to serve it up to others.
Pain performs. It’s just a fact of the algorithm. Were you a victim of something? Are you a whistleblower from an abusive organization? Did you get a bad diagnosis? Are you Struggling with a capital S?
Pain is part of life, we all feel it, we all experience it. We will go through various kinds of it and various stretches of it throughout life, and when we experience it, it is good and right for us to invite others into it with us. That is being human and it is good. But when our particular pain becomes a particular platform, when it becomes the thing that gets us likes, comments, shares, etc., and we keep on ramping it up, the pain either has to get worse on its own, or we have to make it worse in order to get more of the dopamine that eases the pain for just a moment.
If your platform is pain, dopamine is medicine. And because it feels good to get your medicine (reward), it can feel good to keep on sharing your pain (pushing the lever) or even sharing the antidote to your pain (For Belle, she created a whole foods regimine). And if the actual real issue in your life is resolved or can be resolved, that threatens to remove the medicine you think you need. It seems better to stay in your pain, continue pressing the lever, even making yourself sicker or more stuck in your circumstances, in order to get the reward.
The fix isn’t to pretend you’re not sick or stuck or sad or struggling, it’s to take your pain offline. It’s to take it to real people in your real community. People who go with you to the doctors and bear witness to the real pain (or the real quackery). People who can help you get what you actually need instead of an endless supply of fake medicine. People who can bear witness to you, your life, your grief, sadness, shame, fear, and pain in holistic ways instead making you perform that pain for their own gain.
I know so many people who have found communities of sameness online, who would feel terribly, terribly alone in their circumstances if they didn’t have spaces online where they can show up and say the things that feel painfully true to them. I want to provide some of those spaces here on Sayable.4 I think those spaces can be good. But those spaces are limited and unless there is an incredible amount of intentionality from both the hosts and those who join, they can become insular and septic, they can inadvertently make the pain worse, they can trap others into bastions of pain instead of liberating others into a life of love.
How can we become more cognizant of pain performance in our life, work, and those we support?
Familiarize yourself with the whole body of someone’s work. Is there a persistent theme of a particular pain? Is everything they write about being abused or being sick or being a victim of someone else’s actions? Or is there breadth to their work?
Recognize that you are not in the doctor/therapist/pastoral offices with these people. You are only hearing their reporting on it—often reported on in the midst of their very real pain. It makes us sound like a monster to question the extent/source/diagnosis of someone’s pain, but the reality is that we are not privy to what is said between a caretaker and the ones they care for, and if that person takes to the Internet with their experience, they do have a lot of incentive to make things sound worse than they are. Despite my general belief that people tell the truth, people do lie, especially when there is personal gain from it.
Recognize the real heroes among the sick, abused, and marginalized are often not the ones talking about it at all publicly, not monetizing it, not offering pithy phrases as antidotes for it, or building whole businesses out of it. All their energy is going to healing in healthy ways.
Pay attention to your own desires to be seen or recognized in the midst of your pain and pause before taking it to the Internet. Is there a friend you can text with instead? Is there some deep work you need to do in your journal? Do you need to set up an appointment with your therapist? Being seen in our pain is necessary. Don’t shame yourself for it. But sometimes we need a friend or therapist to bear witness to it. Or sometimes we need to sit with our pain long enough that we can see it more fully ourselves.
Become more discerning about what you like, share, comment on, etc.. There’s a lot of people out there grifting about how there’s enough likes/shares/etc. to go around and we should be generous with them. I love generosity and there is enough to go around. But your generosity also results in their success, and sometimes their success is either premature or just wrong, and we need to take responsibility for the ways we got them there.5
I do believe we need to write from our wounds, that sometimes the best work we do and the best work done in us happens while we’re bleeding. But I also believe that we must resist the urge to do all of our work from the floor, where our perspective is so very limited. And if we find ourselves perpetually working from pain instead of from healing, then we need to consider alternative means of money-making.
When we monetize our pain in perpetuity, we only make ourselves and others sicker.
Do you know someone who might need to read this? Please forward it to them. Also, a reader mentioned recently that she hesitated to share paywalled posts, but that’s how we writers get new readers, so please do share!
I have an old friend who has a massive TikTok following teaching people who to care for their homes when they’re struggling, born out of her own struggle. Another friend uses her social media to exclusively talk about grief and the loss of her husband over a decade ago, helping others through it. Another friend writes about her perpetual singleness, gathering likeminded souls around a topic that pains her daily. All of these women are doing beautiful and good work originally borne out of terrible pain.
https://www.goodreads.com/quotes/24965-there-s-nothing-to-writing-all-you-do-is-sit-down
You can see more of the real Belle Gibson talking about this experience in this 60 Minutes Interview, beginning around the 5 minute mark.
These guiding words for my life and work come from Norman Wirzba on what hospitality is: Making space for the other, Inviting the other into your life, Cultivating the life of the other, Liberating the other into their life (from The Way of Love)
I have been saying for ten years that I got success in writing too soon. Various people with far more influence than I shared my work when my work still needed to be under the dirt, getting nutrients, being hidden. I see the damage that did to me as a writer, thinker, and person, and have spent the last ten years trying to undo it. Now, despite everyone chattering on about generosity in writing and sharing the work of others liberally, I’m really careful about the work I share, endorse, blurb, etc.. It’s not because I don’t want young writers to have success. It’s that I have very different definitions of success than I had years ago. I’m looking for different fruit. I’m not interested in writers who can gather crowds around them, build platforms quickly, churn out work, build a brand, or who network with others they can use to get a leg up.
This post is very timely for me -- thank you. When a former friend wrote a memoir in which she analyzed our friendship and its breakdown, I was very deeply hurt. She wrote so many things about what (she assumed) I thought and felt, such as that I was overwhelmed and oppressed by what she told me about her painful past -- which I never was. I wrote a little bit about this in my own most recent post, and this was my attempt to reconcile things: "For a long time, it hurt deeply to feel so unseen and misrepresented, especially publicly. How could she get it — get me — so wrong? Her descriptions seemed drastically at odds with what we were to each other. But over time, the sting has eased a little. The way I think of it now is that she had a collection of photos of me, and she chose the ones that were most useful to her in telling the story she wanted to tell about herself." Her purpose was to construct her own story, and my role had to be adjusted somewhat to suit her purposes. Coming to this conclusion didn't fix everything for me, but it has eased the sting a bit.
So I am always very interested in any discussions of writing about "true" things in our own and others' lives and about how and when (and if) to process publicly. (By the way, in The Understory you mention Anne Lamott's famous line "if people wanted you to write warmly about them they should have behaved better" -- that never sat well with me because there are actually far worse things than not being written "warmly" about.) Thanks again for this post.
This is really good the Lore. When I was on Facebook, I grew a platform of many followers from my pain. I platformed my pain because I saw that the more touching I could make a post, the more poignant,the more readable— I could get likes and follows.
When I came onto Substack, I wanted to get out of platforming my pain, and at the same time, I was going through significant life stuff. So I had to really think about what I wanted to share and how much I wanted to share and how to balance all of that. And I did write a lot about stuff I was struggling with, but what changed was my heart. What changed was the way I wrote. Not to perform for my audience, but to simply tell people, this is what I’ve been going through and this is what is helping me and this is what I’ve discovered.
And you’re right finding a balance in your work and writing about other things is good too. I don’t know if I’ve got that balance to where I want it to be, but I am mindful of it. And that is what has made the difference between my writing on Substack and my writing on Facebook. 🧡