Sunlight breaks through the clouds and comes in Dr. R’s office window. On the street below, rain soaks the pavement. The two together seem wrong: sun, rain.
I face him and take in his encouraging smile. His white shirt is perfectly crisp. I try to smile too, then glance back at the sunlight and the wet pavement. Without looking at him, I say, “I don’t want to change my meds—ever,” hearing the tremor in my voice. I’m still wrecked—shaky, cold-sweaty, brain-zapping—from having tried to go off my medications.
This is my second mistake in moving toward recovery from mental illness. Before that, I’d linked recovery to “normalcy” believing I shouldn’t be in therapy. It seemed obvious: “normal” people don’t need therapy or take psychotropic drugs; recovered people shouldn’t either.
If I’d had the guidance of Dr. R or someone who’d recovered, they’d have told me how wrong I was. Some people have been on medication for so long that their bodies are dependent. Withdrawal had already brought me to the brink of ending my life twice; this time, it brought me close enough to vow never to try to go off my meds again.
Changing my medications—going off one to try another, upping the dosage of this one, lowering the milligrams of that one—has only complicated my mental health struggles. When new drugs and dosages are changed and changed again, it’s impossible to know what helps and what harms, how much is the drugs and how much is the result of mental illness. I now have a baseline where the side effects are minimal. Having the drugs in my system is my normal. And it doesn’t mean I’m sick.
Dr. R nods. “Okay. Any reason you don’t want to ever change your meds, ever again?” He says this slowly.
I tell him my baseline theory. Whatever painful emotions, troubling thoughts, and unwanted behaviors come, I won’t answer them with medication changes.
Dr. R nods, Got it. Not a problem. “Ultimately, it’s your treatment.”
I look out the window onto Michigan Avenue at the cars streaming through the stoplight. It’s hard to make that decision and have him agree. Until then, I did as my doctors told me to do. Should I really be the one to determine what’s best for me?
*
Had I known about the principle of shared-decision making in psychiatric treatment, I may not have hesitated. For two decades, studies have shown that treatment tailored to patient preferences is associated with
greater engagement in treatment,
an improved therapeutic relationship,
increased patient satisfaction, and
improved outcomes of care.
That doesn’t mean a clinician isn’t involved, just that treatment is aimed at recovery, not maintenance as it is now, i.e., we’re given the chance to do more than just “manage” our symptoms. And treatment isn’t determined by the clinician and accepted by the patient. The clinician may make suggestions, but the patient is in charge.
I know how that may sound. I can imagine how it would have sounded to my mother during my worst times. How could I—chronically suicidal and unable to live independently—really determine my own treatment?
Maybe I couldn’t have been in charge while in crisis. Someone in a psychotic or manic or suicidal or depressive episode may not have the inner resources to do that.
Self-determined treatment takes that into account. It involves deciding what we want when we’re in remission, i.e., stable, or even before we ever walk into a mental health professional’s or GP’s office. A mental health advance directive.
It might come in the form of the shared decision-making card developed by Maria O’Connell and Janis Tondora, both professors of psychiatry and researchers in the Program for Recovery and Community Help at Yale School of Medicine.
On the shared-decision making card, patients mark the three most important things they want from their clinician and treatment, e.g., obtain medication that works for me, ask who I want to be involved in my care, respect my time, be informed of all options for treatment, receive an accurate diagnosis, not be rushed.
O’Connell and Tondora stress how important this could be for someone in crisis. And think how it could serve young people—or any of us—in preparation for when we have to articulate our mental health needs.
A card like this—or a document—can only help our clinicians. We ask so much of them. They can’t be everything and all to us. They can’t know what we need if we don’t tell them. To get the best treatment, we have to create our own care.
*
Shared-decision making likely wouldn’t exist as a principle if not for the Recovery Movement. Unfortunately, the day I sat in Dr. R’s office, I’d never heard of the movement. During my twenty-five years in the mental health system, no one mentioned it. I was in and out of hospitalization programs, in and out of psychiatrists’ and therapists’ and GPs’ offices, and it never came up. I’d learned about Sigmund Freud and cognitive behavioral therapy and second-generation anti-psychotics and a lot of misinformation about the supposed chemical imbalance theory of mental illness (which would turn out to be and always have been totally false) but nothing about the legions of people and groups in the Recovery Movement who have been trying to tell us that we can, in fact, recover from mental illness, even serious mental illness, and psychiatric disorders if we receive the right treatment.
The right treatment depends on self-directed care. Since the 1970s, the Recovery Movement has focused on patients’ rights. By then, the government policy to close psychiatric institutions and replace them with community mental health centers had failed. Only a third of the promised mental health clinics had been built, inpatient beds were scant, and funds meant for community services ended up mired in bureaucracy or wasted on maintaining the remaining dilapidated institutions.
During this period, a group of strong-willed ex-patients set out to abolish the mental health system, liberate patients who’d been abused and mistreated in psychiatric institutions, and create a new system of care. The movement’s core members took their cues from the civil rights movement, including Black Power and gay pride, coining the term insane pride. Various groups organized the movement, including the Insane Liberation Front based in Portland, Oregon (1970); the Mental Patient’s Liberation Front in Boston (1971); the Mental Patient Liberation Project in New York City (1971); and the Network Against Psychiatric Assault in San Francisco (1972).
The movement went by various names: the Mental Patient Liberation Movement, the Psychiatric Survivor’s Movement, and the Ex-Patients Movement. In most cases, non-patients weren’t allowed. Often, membership was limited to patients who’d been hospitalized; those who’d received outpatient care didn’t qualify. Mental health professionals were occasionally granted a tangential connection to some groups.
At first, they sought to overturn psychiatry, not improve the current system. To them, psychiatry was a capitalist industrial complex. Reform wasn’t possible, only abolition. The slogan “Nothing about us without us” sent the message that mainstream psychiatry’s days were numbered.
The movement’s leaders focused on fighting for the rights of “psychiatric prisoners” based on their own experiences. Howie Geld—a.k.a., Howie the Harp, a nickname given in honor of his love for the harmonica, which he learned to play while institutionalized after a suicide attempt as a teenager—ran the Mental Patients’ Liberation Party and eventually founded the Community Access mental health center in New York City. Leonard Roy Frank, a one-time graduate of the Wharton School of Business who was hospitalized for paranoid schizophrenia and subjected to thirty-five rounds of ECT treatments and thirty-five psychosurgeries, was one of the primary writers on the staff of Madness Network News, the movement’s media outlet, which published the views of ex-inmates and psychiatric survivors. Other pivotal activists included Sally Zinman, Dan and Su Budd, Tom Wittick, Dorothy Weiner, Tanya Temkin, and Rae Unzicker.
Judi Chamberlin, a self-described “crusader,” was the movement’s most visible spokesperson. When she was in her twenties, she sought treatment for postpartum depression. After her first office visit, a psychiatrist quickly prescribed her two potent antipsychotics: Thorazine and Stelazine. She didn’t improve. The psychiatrist said she should be hospitalized. Over six months in 1966, she went in and out of six New York hospitals. She went into treatment a housewife suffering from depression and came out a patient diagnosed with “chronic schizophrenia with homicidal and suicidal tendencies.”
With the help of a psychologist and finding purpose in the Women’s Liberation Movement, she recovered and joined the cause for patients’ rights.
Her 1978 book On Our Own: Patient-Controlled Alternatives to the Mental Health System called for a system in which people with mental illnesses weren’t “passive recipients of institutional ‘care’” and instead were encouraged “to see the strong and positive aspects of themselves as they, in turn, help others.” As Dan Fisher—a protégé of Chamberlin’s and a clinical psychiatrist who healed from schizophrenia and has been working in the Recovery Movement since its inception—told me, if the Diagnostic and Statistical Manual (DSM) is psychiatry’s “bible,” On Our Own was and is the Recovery Movement’s “bible.”
The Recovery Movement made history-making strides throughout the 1970s. Privately funded community centers run by those with lived experience of mental illness started across the country: Horizon House in Philadelphia, Fellowship House in Miami, The Green Door in Washington, D.C., and Thresholds in Chicago. These centers managed to keep their doors open without proper funding or government support, so determined were they to give people the ways and means to heal.
Fifty years ago, those in the Recovery Movement knew that healing occurs when patients are treated as human beings, play a role in their treatment, are given the opportunity to recover, and aren’t assumed to be suffering from chronic conditions. As Phyllis Vine points out in Fighting for Recovery: An Activists' History of Mental Health Reform, the term chronically mentally ill riled those in the movement.
Chronic typically means persistent but is often understood to mean lifelong. As Stephanie Bernell and Steven Howard, researchers in public health, show, there is no uniform definition of chronic, not even within the Department of Health and Human Services. Some say it’s any condition lasting longer than three months, some longer than a year, some “of long duration,” and some simply an illness that “cannot be cured.”
The general idea behind the term is that our conditions are hopeless. They aren’t. Not when we dictate our own care. Those in the Recovery Movement knew this, as do so many today.
I straighten my skirt and enter the café. Matt’s already there, waiting. He sits at the counter, a full cup of hot chocolate in front of him. The cafe isn’t crowded. He stands and hugs me, pressing his body against mine. Definitely not a friendly hug. I think people call this lust. How long has it been—a decade?—since anyone hugged me like this?
At the counter, I order a cappuccino, which the barista starts to make with glacial slowness.
This is the third mistake I make in my recovery from mental illness. The first: believing that I couldn’t continue in therapy because (supposedly, to my misguided brain) mentally healthy people aren’t in therapy. The second: thinking I needed to be off my meds. Neither, it turns out is true.
This time, my logic goes something like this: If I can be in a romantic relationship it will mean I’ve recovered from serious mental illness. Isn’t that the sign of mental wellness—being in a happy, stable romantic relationship? Don’t you need to be mentally healthy to cohabitate and compromise and commit? Certainly someone with a fragile mind, someone who’s been chronically suicidal and hasn’t been able to live independently and has instead been living with her mother would be considered too disabled to even think of partnering with another human.
I turn back to Matt, who’s looking at me with such longing, my face flushes and I turn away. We met on a dating app years ago. We won’t talk for six months or a year and then get together, always with that underlying sexual tension. Nothing’s ever happened.
The barista finishes frothing the milk for my coffee and expertly fluffs it into the cup. I pay and sit on the stool next to Matt. He tells me about the house he’s building on his farm.
To say we have nothing in common is an understatement. He was once a trader who retired at forty-five and now farms soybeans in Michigan. He also sails on racing teams. His hobbies include being outdoors and hunting, which he says he does responsibly though I’ve never been able to understand how killing animals for sport is responsible.
I’ve spent the past twenty-five years reading, writing, and teaching others how to read and write while battling mental illness. Most of my energy has gone toward managing manic nights of pacing the streets of Brooklyn, the compulsive need to eat only one color of food, racing thoughts that tell me I’m dying, and depressions so thick I’ve had to duck into Chicago alleys and cry. I’ve tried to make sense of my thoughts and feelings, those ineffable parts of us, via diagnoses and initialisms (GAD, OCD, MDD, ADHD, BP, etc.).
“I’m ready now,” Matt says, smiling sheepishly, and I wonder what he’s ready for. “I’m ready to settle down.” He’s almost fifty, balding but attractively so, and has never been in a long-term relationship. “Well, not marry, but…” He gives me a look: I would have sex with you right now. After a beat: “I’ve missed you.”
This seems unlikely, given we’ve collectively spent maybe fifteen hours together, but my stomach flutters. It’s a dull flutter because I’ve taken a healthy dose of Klonopin to be here. It has me feeling open, not so much at ease but easy. And it feels good to be wanted.
He knows about my illness—though not the depths of it. The last time we saw each other, sitting in this same café, I blurted out my current diagnosis—reckless, wanting to see what would happen. Would he say, oh in a tone that makes the word sound more like ick, and lean back in his chair, establishing a little more space between us? No, he was unfazed, practically oblivious. His uncle, he said, was bipolar too. He loved his uncle.
“I think we should…try,” he says. “Long distance.”
He leans over, and we kiss. The thought I can do this meets another—This is all wrong.
*
I don’t know it then, but much of the reason I equate being in a relationship with normalcy (which I then equate with health) comes from America’s couple-obsessed culture. Our marriage/relationship fascination has not just one name but two: amatonormativity and matrimania (my favorite). The cultural conversation insists that being married is something to strive for (at least for women), and studies show that most Americans want to be in a serious relationship and cohabitate—for better or worse, till death do them part.
One of the most potent cultural myths is that having a partner makes a person happy, healthy, and fulfilled. It doesn’t. Married people aren’t any happier. (The studies that said married people are happier were found to be flawed.) A single person is just as likely to be healthy as someone legally bound to another person is. For some time, it was assumed that married people were more likely to survive cancer because they were married; it turns out it’s because doctors are biased against single people. Doctors presume we don’t have the social support to survive more aggressive treatments and therefore aren’t as likely to recommend them.
A third of Americans are single by choice. Half of all singletons (a stupid name) don’t even pine for coupledom. Ninety million Americans exist dating-app-free and get to live in a home where the household tasks are done exactly how they like them.
I never asked myself if coupledom was really essential to a happy, fulfilling, healthy life. I just assumed it was. And in my attempt at mental health recovery, thinking that way made me go very far astray.
*
Michigan Avenue is crowded with shoppers. Christmas music comes from speakers mounted to one of the streetlights. I’m nearly at the hotel where I’ll meet Matt.
We text daily—me more than him, me much more than him—and have decided to spend the night together. His farm is an hour-and-a-half drive away and I don’t drive. My apartment just didn’t feel right.
He meets me in the hotel lobby, which buzzes with tourist energy. We hug that same hug. It might be romantic except my heart hurts, and I believe I’m dying. I should know it’s a panic attack surging through my chest and mind, but a panic attack only causes panic because it pretends to be something else.
Luckily, a Klonopin has started to settle me in a soupy way. It’s like being there but not there.
At a sushi restaurant, we have California rolls and awkward conversation. Then we go back to the hotel. After we have sex, the Klonopin and the heavy curtains make the room seem like it’s not there either. I don’t sleep. He does—heavily. Another Klonopin. A little sleep.
Morning comes, and all I want is to escape. Be alone. Walk in the cold. Gingerly, I dress. He doesn’t stir. In the elevator, I text him to say I had to go and thank him for such a wonderful evening. I xx and oo, wondering if that’s too many x’s or too many o’s.
By the afternoon, he still hasn’t texted. My mood swings. Walking, I feel heavy and brittle at the same time. I text. No response. I text again. Soon, the need to hear from him takes hold of my mind like a vice and tightens.
I text again. My mind goes on repeat, texting and checking again and again for the red notification bubble that says everything’s okay, I’m okay, he’s there and we’re together and I’m recovering.
I’ve become the dreaded “desperate” woman. In a romantic relationship, it’s the worst thing you can be. Magazines, websites, and morning talk shows devote whole articles and posts and segments to instructing women on how not to appear desperate. According to Brian Alexander, a writer who’s covered sex and relationships for NBC and Glamour and elsewhere (so m deprived women.” (Who knew they had such extra-sensory gifts?) The desperate woman gives off “telltale signs.” She shows too much affection, dresses scantily, comes on too strong, and buys too many gifts. And, of course, she texts too much.
But I’m way past the point of “seeming” desperate and besides, I’ve felt real desperation. Those nights sitting on the edge of my bed with the pill bottle in my hand. That day walking by the lake trying to figure out how I might avoid having my body wash up on shore.
The despair I feel now is mild and mostly about control. I need him to do what I want—play a role and prove I’m mentally healthy or at least mentally okay. Later, much later, I’ll learn that only I can do this.
To support my work, buy my journalistic memoir Pathological (HarperCollins), a USA Today Bestseller that traces how we’ve come to believe that ordinary emotions are mental disorders. If you’ve already read it, thank you! You can gift a copy to a friend, your local library, or your favorite independent bookstore.
Love this. I have your book and will dive in soon!
Major respect for this essay.