When Your Doctor's Humility Jumpstarts Your Recovery
On childhood diagnosis, full recovery, and the healing power of money
From age 12 to age 37, Sarah Fay was diagnosed with six different mental illnesses. In her 40s, unable to live independently, she moved back in with her mother. One day, she saw a new psychiatrist, expecting yet another diagnosis. But he said something that turned her world upside down and sent her on a path to full recovery. He said, “I don’t know what you have.” Fay’s journey out of illness led her to see to all her diagnoses as misdiagnoses. Sarah Fay is a writer, author of memoir Pathological, and the founder of Substack Writers at Work. She teaches at Northwestern University. Here we talk about the personality quirks of our prehistoric ancestors, why working at McDonald’s is more difficult than academia, and how diagnosis can impede healing.
Jessica: You had six mental health diagnoses. You discovered that all were incorrect or inadequate. What happened?
Sarah: The word I use is misdiagnoses. In my investigation into the DSM [psychiatry handbook used as the authoritative guide to mental health diagnoses] and its history I discovered that they're all misdiagnoses. Not one of them will encapsulate the mental and emotional suffering that goes with what we call depression or anxiety. The terms used couldn't encompass what was actually going on with me.
Your first misdiagnosis-- using your term-- was anorexia. How did you start to understand that this was not an adequate label for your experience?
I think a good way to think about it is that they missed the point.
When I was diagnosed as having anorexia nervosa, I was told, "You are an anorexic." So it was in me, it was me, it was an identity. What was missing was-- I was 12 years old when I received the diagnosis. I had not been eating. I had lost a tremendous amount of weight. All of that was true, but I did not have the three characteristic symptoms of anorexia. I was not weighing myself all the time. I was not counting calories, and I did not think I was fully fat. I couldn't eat. I had a stomach ache, and I had a pit in my stomach.
Now I know that's how my body manifests sadness. My parents were divorcing and I was going to a new high school and I was terrified and I was extraordinarily sad. They gave me this label, but it didn't hit on what was really going on. I mean, I went to an exceptional eating disorders clinic, so it wasn't as if I had bad care. But when you're pathologized, you start to see yourself as the diagnosis, or you adopt it as part of you. There is no recovery once you've done that.
Right.
I don't "become" a cold when I get it. I don't see myself as “someone chronically with a cold.”
And you just have to manage the cold for the rest of your life.
Exactly. <Laughs.> And even if you're not manifesting symptoms, the cold is always still there.
And your six diagnoses were: anorexia, anxiety--
Anorexia, generalized anxiety disorder, major depressive disorder. Then ADHD, then OCD (then ADHD and OCD with anxious and depressive elements, though I didn't count that as separate). And then I was diagnosed with bipolar 2 and bipolar 1. I didn't count those as two.
Academia is very forgiving. If I'd had to work at McDonald's 10 hours a day, I would've been fired.
So you had these six misdiagnoses. At the same time, you had very real distressing experiences. You sensed that the world was not real. You had suicidal feelings.
I was dysfunctional. I couldn't live independently. There was nothing normal about my situation.
Everybody says, "You were so high functioning, you got a PhD!" No, academia is very forgiving. If I'd had to work at McDonald's 10 hours a day, I would've been fired. I couldn't have shown up. But teaching three days a week, writing my dissertation-- that I can do because I can have these breakdowns and then come back.
What do you think were the causes of your suffering, if not these official "disorders"?
Myriad factors. Through my twenties, I drank a lot. We all know that will lead to severe depression. All these little choices. I do have mental illness in my family. Who were my parents? When did they divorce? What toxins have I put in my body? Also, I was so financially insecure. Living with that is just horrible. All these were factors. There's no one thing that caused it, and that is why they will never find one thing to cure it.
What else contributed to your suffering?
Well, I think the main thing was-- I get a diagnosis very young. I start identifying with diagnoses. I start searching for healing in diagnoses. Then I'm in a mental health system that never tells me I can recover. And the best I can hope for is managing my symptoms. Even if I feel better, I'm not really better. It's lurking underneath; the next episode is around the corner.
They say to my parents, "She's likely going to die of anorexia, either by suicide or by health issues.” The statistic is 60% of people with anorexia fully recover. What if someone had given me that stat?
Yet you've emerged! You describe yourself as fully healed. How did it happen?
Why my life changed was: I saw a new psychiatrist. We did the 30 minute intake. I waited for him to proclaim a new diagnosis. And he said, "I don't know what you have."
My world imploded. The world literally looked different. I thought, "No one knows." It gives me goosebumps still.
What opened up for you in that moment of "I don't know" that hadn't been available to you before?
It’s the moment I started researching psychiatric diagnosis. I had to know everything about them. What I discovered was that they aren’t scientifically valid and are rarely reliable, they’re constructed—I had no idea.
And I had never been presented with the option of healing-- ever. I never heard the word recovery, in 25 years in the mental health system.
I thought, "No, no, no. You do not recover from mental illness and you do not become an executive at Google."
That's fascinating.
The same doctor who said, "I don't know" told me about a patient of his who had schizoaffective disorder, and who completely recovered and became an executive at Google. He said this in passing-- it wasn't a promise. And I thought, "No, no, no. You do not recover from mental illness and you do not become an executive at Google."
I have no aspirations to become an executive at Google. But it felt, in some ways, like the pinnacle of functioning. I could have healed many times along the way if I'd been told that recovery was possible. They call it "the clinician's illusion," which is that people who only see people who are suffering believe that it is not possible to heal.
What's interesting to me, Sarah, is it sounds like in your process of healing and recovery, the turning point was that conversation with the psychiatrist who said, "I don't know." It wasn't a specific medication or a specific therapeutic approach like CBT.
Yes.
What started to happen— either internally or externally—that allowed these symptoms to start to fall away or be less distressing to you?
So much of it was just knowing that it was possible. That's it.
Wow.
Not everyone will recover, but no one will recover if they're not given the chance. I was chronically suicidal for five years.
And now you felt like it's possible to heal.
Also, I changed my life completely. It wasn't like one day I was better.
Walk me through it-- what were the little micro steps you took?
It was so challenging. Most people will never do it. I didn't smoke, I didn't drink, and I didn't do drugs. Those are exacerbating issues. I gave up sugar, she says, sadly. <Laughs.> I gave up white flour.
I don't eat highly processed foods. I mean, I like me a French fry. I go to bed at the same time, I wake up at the same time. I exercise every day. I walk, I get fresh air. I have animals who take care of me. Actually, I just serve them. <Laughs.> But it is very fulfilling.
I am more financially stable than I've ever been. That is something we do not talk about—it is a huge part of mental health.
The other thing, I have to say, that has helped tremendously is I am more financially stable than I've ever been. That is something we do not talk about-- it is a huge part of mental health. Looking back, I know that had so much to do with it. And look at how many people in the United States suffer from that.
I loved your point about how in 1968, the DSM switched from having "reaction" in the conditions’ names to just focusing on the symptoms. Wouldn't be amazing if some anxiety could be recognized as "financial stress reaction"?
Exactly.
Someone I know had terrible acne in high school, and he was incredibly depressed and anxious because he felt so self-conscious about his appearance. He started taking Accutane—he said it was the single most effective mental health medication he's ever tried. <Laughs.> It cleared up his acne, he started feeling better about himself, his depression and anxiety lifted. He was having a reaction to this difficult teen experience.
Exactly. I mean, I lived in New York City as a poet. You can't be more financially insecure than that!
In math there's an idea of an "existence proof"— you can prove a mathematical object exists if you can find an example of it. That doctor gave you an existence proof of someone who recovered.
It sounds like that permitted you this beautiful sense of self-efficacy, and you started to do things for yourself that helped.
Yes. And I know this is terribly unsexy, but diet has a huge part to play in it. It's very different making dietary changes just to stay sick. If you're being told you will always be sick for the rest of your life, why would you ever stop eating chocolate?
And now you don't get to do the one thing that gives you joy!
I'm not saying McDonald's is a bad—I'm not trying to demonize. But the reality is that doesn't fuel your brain.
You've talked about evolutionary psychiatry as another lens on emotional suffering-- the idea that certain traits are adaptive for us as a species. Why does evolutionary psychiatry make more sense to you?
If we look at the big four-- anxiety, depression, mania, and psychosis, those conditions have been with us since antiquity. These experiences are part of the human condition. We're giving them names--"major depressive disorder"-- and those names are wholly inadequate. If every patient knew that, this wouldn't be a problem. The problem is no one's telling them.
Also, my brain is designed to keep me alive, not make me happy. It thinks we are on the veldt and lions are running after us. The panic attack I had recently was because my mother was suffering from Alzheimer's. I am not endangered. But I was having a panic attack as if it were-- my brain is trying to keep me safe. It is misguided, but it is doing its job. I joke that if we were living in primitive times, you would want me in your tribe because I am on high alert at all times. <Laughs.>
When you are given a diagnosis as a young person and carry that into adulthood, you've done great damage to yourself, because you equate emotional and mental suffering with diagnoses.
I think about friends in the computer software field. If your job is to prevent malicious attackers, you have to be very meticulous to the point of obsessiveness. Some of these tendencies are quite adaptive for some jobs.
And when you have these periods-- either we call them mania or anxiety-- your body and mind are going to compensate with depression. That makes total sense to me. You are moving in that manic-depressive or anxiety-depression wave. The brain is trying to recover. It's like, "slow down!"
If you could shout something from the rooftops so that people would be better informed, what would it be?
No one has asked me that!
When you are given a diagnosis as a young person and identify with it and carry that into adulthood, you've done great damage to yourself, because you equate emotional and mental suffering with diagnoses. In fact, mental and emotional suffering are just part of the human condition.
Also: diagnoses are scientifically invalid and, for the most part, unreliable.
Invalid and unreliable because they are inadequate or because they might be wrong?
No DSM diagnosis is scientifically valid. We cannot prove it. There is no test. You might take one online—funded by Eli Lilly, a pharmaceutical company that produces psychotropic drugs. But there's no blood test. There's nothing that can say, "You definitively have depression."
Unreliable means you can have two qualified psychiatrists in a room seeing the same patient at the same time, and they will come up with different diagnoses.
There's a similar critique of the Implicit Association Test used for implicit bias: if you test the same person two different times, you'll get two different scores.
Right. So these diagnoses only exist via self-reported symptoms and a clinician's opinion. That's not to say that diagnoses are worthless. But they are not hard and fast. How could I get six different diagnoses? OCD and ADHD with depressive and anxious elements? That's not a diagnosis. That's a salad. <Laughs>
What if we said to people, "I'm not 100% sure, but this is the diagnosis we're going to work with. This is why. These are the medications I would think about. Let's have a conversation”? The worry is if people knew diagnoses were flawed, they wouldn't get help or trust their providers. That's not true.
What I'm hearing, Sarah, is that you're advocating for radical humility.
I'm not anti-psychiatry. I think there are wonderful providers. For the most part, people mean well. But there's hubris.
The DSM is a cultural artifact, a cultural statement of what a couple hundred psychiatrists decide. "This is what we're going to call major depressive disorder. It's going to have nine symptoms, and you're going to need five." When they wrote the criteria for major depressive disorder, people asked Robert Spitzer, the architect of the DSM, "Why not four? Why not six?" He said, "We went around the room. Four seemed like too few and six seemed like too many." That was his reasoning. And that’s still the criteria for being diagnosed with major depressive disorder to this day.
If evolutionary psychiatry says these traits (being anxious, depressed, etc.) are adaptive, how do you see medication fitting in?
I don’t think anyone—evolutionary psychiatrists included—would argue that we should be in distress. We live in an abnormal world totally unsuited to humans—driving, flying in planes, being on social media. These aren’t things we were meant to do. Our systems are doing their best to cope, but that’s all they’re doing: coping. I’m fine with medication being part of that. Medication has many downsides and many upsides depending on the individual. An imperfect bandaid-ish remedy to an extreme situation.
I am still on two medications. One I've been on for 15 years, the other, six or seven. I've tried many times to go off them and the withdrawal is so severe and awful. This is the other thing they don't tell you. Some people do go off. My friend Marya Hornbacher, who wrote Wasted and Madness, was on 20 medications and got off all of them.
How did you know that you’d finally recovered?
My mind was completely different. I was functioning differently, interacting with people differently. I used to have to drown out racing thoughts. The world was completely different.
I was at lunch with my father. I said, "Dad, I think, I think I'm recovered a hundred percent." And he said, "I know you have." That was all I needed—for one other person to see it in me. He said, "I've never seen a change so complete in someone." To this day, I'm just so grateful every day that it's happened.
The End of Bias: A Beginning, my book about how people have reduced bias and become more fair, just, and humane, is now out in paperback.
Loved this interview. "And I had never been presented with the option of healing-- ever. I never heard the word recovery, in 25 years in the mental health system." This is so telling and so sad. Also makes me love the Jungians out there even more... Do you ever listen to This Jungian Life? They're always talking about depression and anxiety as symptoms, as a way of your psyche trying to get your attention, to help you find wholeness.