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Suleika Jaouad's Survival Mechanisms (Replay)

2025-11-15 - source - Read full transcript

Steve Levitt (host)Suleika Jaouad

Key insights

For many patients, the hardest part of getting sick is not the diagnosis but the months of being disbelieved beforehand.

Before her leukemia diagnosis, Jaouad was told she likely had anxiety and given antidepressants, then told by a Chinese herbalist she might have a parasite. Doctors ran nearly every test except a bone marrow biopsy because she was 'too young' to need it. She frames this as especially common for young women, whose physical symptoms get read as psychological.

illness-and-identity

Being declared cancer-free is the start of a second ordeal, not the end of the fight.

Jaouad expected to 'fold back into the world of the living' with gratitude once cured, but instead felt ashamed she couldn't function, didn't recognize herself, and found the outside world scarier than the hospital had become. She had no framework for what she later understood as PTSD.

illness-and-identity

Toxic-positivity platitudes force sick people to perform a role instead of feeling what they actually feel.

Jaouad describes being bombarded with lines like 'God doesn't give you more than you can handle' and 'stay positive,' which she ties to Barbara Ehrenreich's writing on toxic positivity. The result was a split self: a graceful, brave 'leukemic starlet' persona for others, and a private self experiencing fear, anger, grief, and envy with no outlet.

illness-and-identity

The most useful response to someone in crisis is honest presence plus a specific, familiar gesture - not a perfect script.

Jaouad's rule: say you don't know what to say, tell them 'I'm here, I love you,' and then do the thing you already do well (cook, walk a dog, dance on the sidewalk outside their hospital window) rather than searching for profound words that don't exist.

showing-up-for-others

Fear of a friend's mortality can freeze even people who know better, and the freeze can last until it's almost too late.

Jaouad avoided her dying friend Max because she couldn't bear losing him the way she'd already lost others in her 'cancer crew.' They only had their most honest conversation a few months before he died, after he directly named her absence and its cause.

showing-up-for-others

Comfort with one category of hardship doesn't transfer to comfort with a different one.

Levitt, who lost a son and a sister and has been divorced, says he talks easily with others who've had those same losses but finds it much harder to discuss hardships he hasn't personally experienced, like cancer or losing eyesight - undercutting the idea that surviving hard things generally makes someone good at supporting others through hard things.

showing-up-for-others

Asking about someone who died, rather than avoiding the subject, is usually welcomed, not painful.

Both Jaouad and Levitt agree people avoid asking questions about the dead for fear of upsetting the bereaved, but the grief is already constantly present for that person - being asked and being able to talk about the person who died is experienced as a gift, not a reminder.

showing-up-for-others

Unstructured daily journaling, stripped of any quality bar, was Jaouad's core coping tool and later became a shared public practice.

In the hospital she wrote in her journal every day regardless of length, sometimes just a word, with no pressure to write well. She rebuilt that same 100-day structure into The Isolation Journals when Covid lockdown began, inviting contributors to supply prompts because daily journaling alone tends to circle the same material.

creative-processing-of-trauma

Cancer memoirs written from years past the ordeal can alienate patients who are still in acute danger.

Jaouad found most survivor memoirs followed a hero's-journey arc (return braver, stronger, wiser) that didn't match her situation mid-treatment with an unproven clinical trial and real odds of dying. The Fault in Our Stars, fiction with no guaranteed happy ending, felt truer to her state and became one of her favorite books.

creative-processing-of-trauma

Levitt argues that refusing to pay bone marrow donors reflects squeamishness about money more than sound ethics.

He proposes $20,000-$30,000 payments to increase the share of registered donors who follow through years later when actually matched to a stranger, offered N.M.D.P. $100,000 of his own money to pilot it, and was refused; he attributes the refusal to fear of media backlash rather than a real ethical problem, since society already pays people for other sacrifices.

bone-marrow-donor-incentives

Money can meaningfully increase donor registration, as shown by a real crowdfunded case.

Jaouad describes a friend, underrepresented in the registry as an Indian American, whose Silicon Valley network crowdfunded a reward for whoever matched him; roughly 15,000 people from the Indian community signed up and he found his donor - evidence Jaouad cites in favor of Levitt's compensation idea, while noting it must be paired with demystifying what donation actually involves.

bone-marrow-donor-incentives

A human-scale appeal - a message from the actual recipient - may convert reluctant registered donors better than cash.

Jaouad proposes that a video message from the person needing the transplant would turn an abstract stranger into a specific human ('someone's mother or child or sibling'), which she and Levitt agree could work as well as or better than payment, while raising open questions about consent and manipulation.

bone-marrow-donor-incentives

Books referenced

Between Two Kingdoms - Suleika Jaouad - Jaouad's memoir about being diagnosed with leukemia at 22, the years of treatment, and the harder-than-expected return to everyday life after being declared cancer-free; Levitt calls it one of the most powerful books he has ever read.
The Fault in Our Stars - John Green - Levitt asks about it; Jaouad says she read it half a dozen times during her sickest weeks because, unlike survivor memoirs, it did not guarantee a happy ending and portrayed sick young people as full people, not just patients.
The Book of Alchemy - Suleika Jaouad - One of two new books Jaouad published in the past year, mentioned by Levitt at the end of the episode.
The Alchemy Journal - Suleika Jaouad - The second of Jaouad's two new books mentioned at the end of the episode.
Freakonomics - Steven Levitt and Stephen Dubner - Levitt references writing it as his own entry point into an unfamiliar world (New York publishing), drawing a parallel to Jaouad being thrust into publishing, music, and Hollywood circles.

Media referenced

American Symphony - movie - Academy Award-nominated documentary directed by Matt Heineman, chronicling Jaouad's second cancer recurrence and bone marrow transplant alongside her husband, musician Jon Batiste; shot from roughly 1,500 hours of unfunded, undistributed footage.
Life Interrupted - article - Jaouad's New York Times column, one of the earlier public forms her cancer story took, before the book Between Two Kingdoms.

Companies

N.M.D.P. (formerly Be The Match) - The bone marrow donor matching registry; Levitt did pro bono consulting work with them via his University of Chicago team, and Jaouad joined its board less than a year before this conversation.
The Isolation Journals - The daily journaling community Jaouad launched at the start of Covid lockdown, built on a 100-day journaling project she first did in the hospital; invited artists and writers to contribute prompts.

Techniques and frameworks

The anthropologist reframe - Jaouad's lifelong survival mechanism for unfamiliar, intimidating environments (from her first day of kindergarten not speaking English to attending the Oscars): pretend to be an outside observer taking notes rather than a participant who has to belong, which dissolves imposter syndrome.
Show up with presence, not eloquence - Jaouad's advice for supporting someone in crisis: admit you don't have the right words rather than saying nothing, say 'I'm here, I love you,' and offer the specific thing you already love to do (cook, walk a dog, dance) instead of reaching for a grand gesture.
No-pressure daily journaling - The practice underlying both Jaouad's hospital coping and The Isolation Journals: write every day regardless of length or quality, with no expectation of polish, to work through material that circles back on itself.

Summary

This is a replay of a May 2024 conversation, aired as Levitt notes Jaouad's cancer has since returned for a third time. The bulk of the episode is a close reading of her memoir Between Two Kingdoms: the months of being told her worsening symptoms were anxiety or a parasite before doctors finally ran the test that found leukemia at 22, and the strange relief of finally having a diagnosis she could name. Jaouad pushes back on the idea that stoicism served her - she says she was scared and seeking answers the whole time, but wasn't taken seriously, a pattern she connects to being a young woman whose physical symptoms get read as psychological.

A recurring thread is what actually helps people in crisis versus what feels helpful but isn't. Jaouad describes toxic-positivity platitudes ("stay positive," "everything happens for a reason") as forcing a performed, graceful "leukemic starlet" self onto patients who are also feeling real fear, anger, and envy with nowhere to put it. Her counter-model is blunt: admit you don't have the right words, say "I'm here, I love you," and then do the specific thing you already do well - a friend's two-minute dance on the sidewalk outside her hospital window mattered more than any eloquent card. The conversation extends into Jaouad's own failure to show up for her dying friend Max, and Levitt's parallel confession about a cousin's cancer he never called about - both landing on the point that comfort with one kind of hardship (Levitt has lost a son and a sister) doesn't generalize to comfort with a different kind.

The middle section covers Covid, when Jaouad turned her hospital-era coping mechanism - daily, unpolished journaling - into a public project, The Isolation Journals, rebuilding the same 100-day structure she'd used years earlier. She also talks about why cancer memoirs written by long-recovered survivors alienated her mid-treatment, and why John Green's The Fault in Our Stars, which refuses a guaranteed happy ending, felt truer to her situation and remains one of her favorite books.

The back half turns into a genuine economics debate. Levitt, drawing on pro bono work he did with the bone marrow registry N.M.D.P. (formerly Be The Match), argues the registry should pay donors $20,000-$30,000 to raise the follow-through rate among people matched to strangers years after signing up; he says the organization refused even a self-funded $100,000 pilot, which he chalks up to fear of ethical backlash rather than real ethical grounds. Jaouad, who has since joined N.M.D.P.'s board, is sympathetic but flags the harder question of where that money comes from when patients are already choosing between rent and treatment costs. The two also workshop a non-cash idea - sending reluctant donors a video message from the actual person waiting for a transplant - that both find more promising, tying back to the episode's larger point that specificity and humanity move people more reliably than abstraction.

The episode closes on lighter material - Jaouad and her husband Jon Batiste's habit of prank-calling strangers, including a ten-minute call with author Jonathan Franzen - and on the Academy Award-nominated documentary American Symphony, which captured her second cancer recurrence and bone marrow transplant from roughly 1,500 hours of unfunded footage. Jaouad describes her core survival mechanism, used since she arrived at kindergarten not speaking English: reframing herself as an anthropologist observing an unfamiliar world rather than a participant who has to belong, which she says makes imposter syndrome evaporate on contact.

Notable Quotes

"The fear in writing in the first person or writing about a traumatic experience, like an illness, is that you're not read as a writer; you're read as a sick person." - Suleika Jaouad

"Tell the truth of your inability to find the perfect words because the perfect words do not exist." - Suleika Jaouad

"The greatest joy when you've lost someone is to know that they're remembered, is to be curious." - Suleika Jaouad

"Why in society do we pay people for just about anything that they do, except saving a life?" - Steve Levitt

"Illness or upheaval is very democratic and I've always chafed at the idea of being described as 'inspiring' for merely having survived an illness I never would have chosen in the first place." - Suleika Jaouad