The Ex-Patients’ Club – The New York Times

Health


On a recent Friday morning, Daniel, a lawyer in his early 40s, was in a Zoom counseling session describing tapering off lithium. Earlier that week he had awakened with racing thoughts, so anxious that he could not read, and he counted the hours before sunrise.

At those moments, Daniel doubted his decision to wean off the cocktail of psychiatric medications which had been part of his life since his senior year in high school, when he was diagnosed with bipolar disorder.

Was this his body adjusting to the lower dosage? Was it a reaction to the taco seasoning he had eaten the night before? Or was it what his psychiatrist would have called it: a relapse?

“It still does go to the place of — what if the doctors are right?” said Daniel.

On his screen, Laura Delano nodded sympathetically.

Ms. Delano is not a doctor; her main qualification, she likes to say, is having been “a professional psychiatric patient between the ages of 13 and 27.” During those years, when she attended Harvard and was a nationally ranked squash player, she was prescribed 19 psychiatric medications, often in combinations of three or four at a time.

Then Ms. Delano decided to walk away from psychiatric care altogether, a journey she detailed in a new memoir, “Unshrunk: A Story of Psychiatric Treatment Resistance.” Fourteen years after taking her last psychotropic drug, Ms. Delano projects a radiant good health that also serves as her argument — living proof that, all along, her psychiatrists were wrong.

Since then, to the alarm of some physicians, an online DIY subculture focused on quitting psychiatric medications has expanded and begun to mature into a service industry.

Ms. Delano is a central figure in this shift. From her house outside Hartford, Conn., she offers coaching to paying clients like Daniel. But her ambitions are grander. Through Inner Compass Initiative, the nonprofit she runs with her husband, Cooper Davis, she hopes to provide support to a large swath of people interested in reducing or quitting psychiatric medications.

“People are realizing, ‘I don’t actually need to go find a doctor who knows how to do this,’” she said. In fact, she added, they may not even need to tell their doctor.

“That sounds quite radical,” she allowed. “I imagine a lot of people would hear that and be, like, ‘That’s dangerous.’ But it’s just been the reality for thousands and thousands of people out there who have realized, ‘I have to stop thinking that psychiatry is going to get me out of this situation.’”

Increasingly, many psychiatrists agree that the health care system needs to do a better job helping patients get off psychotropic medications when they are ineffective or no longer necessary. The portion of American adults taking them approached 25 percent during the pandemic, according to government data, more than triple what it was in the early 1990s.

But they also warn that quitting medications without clinical supervision can be dangerous. Severe withdrawal symptoms can occur, and so can a relapse, and it takes expertise to tease them apart. Psychosis and depression may flare up, and the risk of suicide rises. And for people with the most disabling mental illnesses, like schizophrenia, medication remains the only evidence-based treatment.

“What makes tremendous sense for Laura” and “millions of people who are over-diagnosed and over-treated makes no sense at all for people who can’t get medicine,” said Dr. Allen Frances, a professor emeritus of psychiatry at Duke University School of Medicine.

“Laura does not generalize to the person with chronic mental illness and has a clear chance of ending up homeless or in the hospital,” he said. “Those people don’t wind up looking like Laura when they are taken off medication.”

It was hard to say what a life after psychiatric treatment would look like for Daniel, who asked to be identified by only his first name to discuss his mental health history. He has been tapering off lithium for nine months under the care of a nurse-practitioner, and settled, for the moment, at 450 milligrams, half his original dose.

He had become convinced that the drugs were harming him. And yet, when the waves of anxiety and insomnia hit him, he wavered. Daniel is a litigator. He had depositions coming up at work, and the way his thoughts were jumping around scared him.

“I can’t avoid that fear, you know, ‘I’m doing a lot better on less lithium, but it’s just going to fall apart again,’ ” he told Ms. Delano.

Ms. Delano listened quietly, and then told him a story from her own life.

It happened a few months after she quit the last of her medications. On a night walk, her senses built to a crescendo. Christmas lights seemed to be winking messages at her. She recognized hypomania, a symptom of bipolar disorder, and the thought crossed her mind: The doctors had been right. Then some kind of force moved through her, and she realized that these sensations were not a sign of mental illness at all.

“I was like, ‘This is you healing,’ ” she said. “This is you, coming alive.”

She told Daniel that she couldn’t promise he would never have another manic episode. But she could tell him that her own fear had dissipated, over time. “I get to write my own story from here on in,” she said. “And that takes an act of faith.”

Peer support around withdrawing from psychiatric medications dates back 25 years, to the early days of digital social networks.

Adele Framer, a retired information architect from San Francisco, discovered such groups in 2005 while going through a difficult withdrawal from Paxil. At the time, Ms. Framer said, physicians dismissed severe withdrawal as “basically impossible.”

People circulated between the groups, comparing “tapers” in “a viral information-sharing process,” said Ms. Framer, who launched her own site, Surviving Antidepressants, in 2011. Users on her site exchanged highly technical tapering protocols, with dose reductions so tiny that they sometimes required syringes and precision scales.

Dr. Mark Horowitz, an Australian psychiatrist, discovered Ms. Framer’s site in 2015 and used the peer advice he found to taper off Lexapro himself.

“At that point, I understood who the experts were,” he said. “I have six academic degrees, I have a Ph.D., I know how antidepressants work, and I was taking advice from retired engineers and housewives on a peer support site to help come off the drugs.”

In recent years, mainstream psychiatry has begun to acknowledge the need for more support for patients getting off medications.

This is most visible in Britain, whose health service has updated its guidance for clinicians to acknowledge withdrawal and recommend regular reviews to discontinue unnecessary medications. In 2024, the Maudsley Prescribing Guidelines in Psychiatry, a respected clinical handbook, issued its first “de-prescribing” volume. Dr. Horowitz was one of its authors.

There are early signs of movement in the United States, as well. Dr. Jonathan E. Alpert, chairman of the American Psychiatric Association’s Council on Research, said that the group plans to issue its own de-prescribing guide.

The American Society of Clinical Psychopharmacology is working on a guide to help doctors identify when a medication should be discontinued. “There has never been an incentive in industry to tell people when to stop using their product,” said Dr. Joseph F. Goldberg, the group’s president. “So it really falls to the nonindustry community to ask those questions.”

Dr. Gerard Sanacora, the director of the Yale Depression Research Program, said there are practical reasons the current health care system “doesn’t provide much support” for patients seeking to reduce medications: Relapse prevention can be time-consuming, and many physicians are only reimbursed for 15-minute “med management” appointments.

But he said it was important that trained clinicians still have a role. In a “taper,” patients encounter difficulties of two kinds: withdrawal, and the relapse of underlying conditions. It takes skill to distinguish between them, he said, and a licensed practitioner guarantees “some level of minimum competency” during a period of especially high risk.

“The main thing is, they can worsen and kill themselves,” he said of patients.

Ms. Delano entered the conversation in 2010, when she began blogging about her life. She was 27 years old, living with her aunt and uncle and attending day treatment at McLean Hospital in Massachusetts. Her platform was Mad in America, a website where a range of former psychiatric patients exchanged stories about their treatment.

Within that subculture, Ms. Delano stood out for her eloquence and charisma. She had grown up in Greenwich, Conn., where she was a top student and standout athlete. A relative of Franklin D. Roosevelt, she was presented as a debutante on two successive nights at New York’s Waldorf Astoria and Plaza hotels.

On her blog, and later in a 10,000-word profile in The New Yorker, she described the shadow plot of her psychiatric treatment.

In ninth grade, she was diagnosed with bipolar disorder and prescribed Depakote and Prozac. In college, her pharmacologists added Ambien and Provigil. Over the years, this list expanded, but she still seemed to be getting worse. Four times she was so desperate that she checked herself into psychiatric hospitals. At 25, she made a harrowing attempt at suicide.

Then, at 27, she picked up a book by the journalist Robert Whitaker, “Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America.” In the book, Mr. Whitaker proposed that the increasing use of psychotropic medications was to blame for the rise in psychiatric disorders. In scientific journals, reviewers dismissed Mr. Whitaker’s analysis as polemical, cherry-picking data to support a broad, oversimplified argument.

But for Ms. Delano, it was an epiphany. She mentally reviewed her treatment history and came to a radical conclusion. “I’d been confronted with something I’d never considered,” she writes in “Unshrunk.”“What if it wasn’t treatment-resistant mental illness that had been sending me ever deeper into the depths of despair and dysfunction, but the treatment itself?”

She quit five drugs over the six months that followed, under the guidance of a psychopharmacologist. She describes a brutal withdrawal, complete with constipation, diarrhea, aches, spasms and insomnia, as “angsty energy that had lived in me for years began to scratch viciously beneath the surface of my skin.”

But she also experienced a kind of awakening. “I knew it as clear as day, the second it occurred to me,” she writes. “I was ready to stop being a psychiatric patient.”

Born in 1983, five years before Prozac entered the market, Ms. Delano was part of the first large wave of Americans to be prescribed medications in their teens. Many readers recognized, in her blog entries, elements of their own stories — the way a diagnosis had become part of their identities, the way a single prescription had expanded into a cocktail.

She also provided something the ex-patient community had lacked: an aspirational model. Her life had clearly flourished after quitting her medications. In 2019 she married Mr. Davis, an activist she met in the ex-patient movement; they are raising two boys in an airy, sun-drenched colonial-style house.

On the Surviving Antidepressants website, users sometimes invoked her name wistfully.

“I thought I’d be like a Laura Delano and others and heal right away,” a user from Kansas commented.

A French user, struggling to wean off Valium, returned to Ms. Delano’s videos as to a mantra.

“9.30 am: I manage to stop a panic attack with agitation, by breathing.

10:30 a.m.: It rains. I spend time on my smartphone. Laura Delano. Laura Delano. Laura Delano. On a loop. Maybe I’m in love.”

Emails began to flow in to Ms. Delano as she blogged about quitting her medications. Most were from people who wanted her advice on tapering. Often, she said, they had tried to taper too fast and were spinning out.

She encouraged them, assuring “overwhelmed, exhausted partners and parents” that what they were witnessing was not relapse, but withdrawal. Ms. Delano found that she was spending 25 hours a week on these calls. And a coaching business was born.

“I saw the demand for what I had to offer and made the difficult decision to stop giving my time away for free,” she writes in her memoir.

The market for assisting withdrawal from psychiatric medications is becoming crowded these days, with some private clinics charging thousands of dollars a week. And a watershed moment arrived last month, when Health Secretary Robert F. Kennedy Jr. announced that the new “Make America Healthy Again” commission would examine the “threat” posed by antidepressants and stimulants.

Mr. Kennedy has long expressed skepticism about psychiatric medications; in his confirmation hearings, he suggested that selective serotonin reuptake inhibitors, or S.S.R.I.s, have contributed to a rise in school shootings, and that they can be harder to quit than heroin. There is no evidence to back up either of these statements. But Mr. Davis agreed.

“He might be the only person in the room who gets how serious it can be,” Mr. Davis wrote on X during the hearings.

Ms. Delano and Mr. Davis both offer coaching — for $595 a month, you can join a group support program. But the venture that excites them more is their nonprofit, Inner Compass project, which, for $30 a month, links up members via livestreams, Zoom gatherings and a private social network.

They dream of a national “de-prescribing” network along the lines of Alcoholics Anonymous, said Mr. Davis, who became the group’s executive director early this year. “We know there is a sea change coming,” he said. “It’s already beginning. In a lot of circles, it’s deeply unfashionable to take psych meds.”

Ms. Delano has tempered her language since her Mad in America Days, when she protested outside annual meetings of the American Psychiatric Association, denouncing the use of four-point restraints and electroshock machines.

In the early pages of her memoir, she assures readers that she is not “anti-medication” or “anti-psychiatry.”

“To be clear, I am neither of these things,” she writes. “I know that many people feel helped by psychiatric drugs, especially when they’re used in the short term.”

Still, there is no mistaking the bedrock of mistrust that underlies her project. “I feel for psychiatry,” she said. “It’s a big ask we’re putting on them, to basically step back and consider that their entire paradigm of care is inadvertently causing harm to a lot of people.”

Earlier this month, Mr. Davis flew to Washington to hand-deliver copies of “Unshrunk” to elected officials and explore whether Inner Compass might find new sources of funding in the new, pharma-skeptical dispensation. He wanted to make sure, he said, “that the people working on policy are at least considering our ideas.”

The rollout of Mr. Kennedy’s agenda has raised hopes throughout “critical psychiatry” and “anti-psychiatry” communities that their critiques will, for the first time, be taken seriously.

Some in the medical world fear this augurs a deepening mistrust in science. And it is true — the written resources Inner Compass provides are overwhelmingly negative about every major class of psychiatric medications, which remain the only evidence-based treatment for severe mental illnesses.

A section on antipsychotics, for instance, cites studies that purport to show that people who take them fare worse than people who never take them or stop them. (This is misleading; people do not take them unless they have severe symptoms.) A section on antidepressants cites a study suggesting that they cause people to commit acts of violence. (The study was criticized for distorting its findings.)

Dr. Alpert, the head of the A.P.A.’s council on research, reviewed Inner Compass’s resources and described them as “biased” and “frightening.” He said online peer communities risk becoming “echo chambers,” since they tend to attract people who have had bad experiences with medical treatment.

Because quitting psychiatric medications can be so risky, he said, a pervasive mistrust of medical care could have serious consequences.

“I mean, what happens when people taper their medications because of an echo chamber, and they’re more suicidal, or they get more psychotic, and they need to be hospitalized, or they lose their job?” he said. “Who cares about those people?”

This worry was shared even by some of Ms. Delano’s admirers in the world of patient advocacy. Mr. Whitaker recalled acquaintances who, after setting out to quit their medications, fell into “despair

“Once you start going down that road, it becomes your identity,” said Mr. Whitaker. “People want to come off, and the next thing you know, there’s no service provider, no science, and they’re moving into that void.”

Numerous people in withdrawal communities described members who struggled with suicidal thinking, or who had died by suicide.

“More often than not, at least from what I’ve seen, once people conclude that the medications hurt them, then it’s all-or-nothing, black-and-white thinking,” said Kate Speer, a writer and mental health advocate who works as a strategist for the Harvard T.H. Chan School of Public Health. “They can’t recognize the providers are there to help, even when what they have done is not helpful.”

Ms. Delano said the issue of suicide comes up regularly in withdrawal communities. “I know so many people who have killed themselves over the years, in withdrawal or even beyond” she said. In 2023, a young woman who joined Inner Compass died by suicide, she said.

Afterward, Ms. Delano and Mr. Davis consoled distraught community members, who worried that they should have taken some action to intervene.

Ms. Delano said she would call 911 if a member overdosed on pills, but, short of that, she doesn’t weigh in on treatment choices. She noted that many members come to withdrawal groups precisely because they feel they have been harmed by the medical system.

“We have given psychiatry and licensed mental health professionals this godlike power to keep people alive,” she said. “Speaking for myself — this is not an organizational belief, but for me personally — I don’t think anyone should have that power over another human being.”

In Inner Compass gatherings, many people describe tapering processes as so difficult that they had to stop and reinstate medications. Some were on their fifth or sixth attempt, and some wept, describing how challenging it was.

Ms. Delano tries to keep the pressure off. “You’re in the driver’s seat,” she told one coaching client, who had reinstated a low dose of Valium. “It doesn’t mean, quote unquote, giving up or losing or failing.”

Daniel seemed to be looking for some inspiration to stick it out. He was getting better, he was sure of it, accessing levels of emotion that had been blunted by medication for 15 years.

He credited Ms. Delano for getting him this far; it was reading her story in the New Yorker that made him see it was possible to “come off the medications and be OK.” On a recent Zoom session, he showed her the Post-it note that he sometimes pulls out as a reminder to himself.

“IT WAS THE DRUGS,” he had written

“It was the drugs!” Ms. Delano exclaimed. She welled up toward the end of their session, reflecting on how much he had already achieved.

“The trade-off is worth it,” she told him. “The more your life expands — the meaning, the connection, the beauty, the possibility, the more that continues to expand in your life, the more all these beautiful things come online, the less weight, the less power the hard stuff has.”

When they hung up, he was feeling certain of his path again.

She has this effect on him, making him imagine how he will feel when he is off medication — “this better, more complete me,” as he put it. He thinks it will take two or three years to taper off completely.

If it proves too difficult, “I just have to take 450 milligrams and consider myself lucky,” he said. “But there is a desire to, you know, just kind of be free. Free of it.”

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline or go to SpeakingOfSuicide.com/resources for a list of additional resources.



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