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Spread the light: Emi Nietfeld’s journey with foster care and PTSD
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Spread the light: Emi Nietfeld’s journey with foster care and PTSD

Because stigma festers in the dark and scatters in the light
Transcript

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Happy Mental Health Awareness Month! In its honor, we’ll be bookending the month with two special editions of Spread the light.

💫 Spread the light with Dr Devika B. First-person accounts of living with mental illness that dispel stigma and stereotypes and instead, spread hope and light — also a YouTube channel and podcast on Apple and Spotify

Because stigma festers in the dark and scatters in the light

A few weeks ago, I was lucky to sit down with Emi Nietfeld (more about her below) to dive into lessons from her journey with foster care and post-traumatic stress disorder (PTSD). Below, please find snippets from a wide-ranging and nuanced conversation (edited for length and clarity) — including interrogating fallacies like the just-world hypothesis and self-reliant individualism triumphing over circumstance — to how medical bias towards those with stigmatized diagnoses or living in poverty can show up.

Emi Nietfeld is a journalist, mental health activist, and the author of Acceptance: A Memoir, a journey from foster care and homelessness to Harvard and Big Tech. As a journalist, she writes for places like The New York Times, The Atlantic, and Slate and is passionate about critiquing unrealistic expectations of “resilience” put on vulnerable youth. She lives in New York City with her family and stuffed animals. 

Trigger warning: In this interview, we talk about childhood neglect, PTSD, suicidality, self-harm, depression, and disordered eating.

Above, you’ll find the audio recording of the podcast episode and below, a transcript. The written version of the conversation has been lightly edited for clarity and length.

If you’d prefer to watch the video interview version, click here.

If you or a loved one needs help for a mental health crisis, don’t hesitate to call or text 988 at anytime — or reach them online here. Find other resources here, search for a US treatment facility here, and find a US-based therapist here.

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Wishing you light,

Dr Devika Bhushan


DB: I reached out to Emi after her remarkable NYTimes piece, I edited mental illness out of my college applications, came out in December 2022. Can you tell us about how that piece came about and how your story began?

EN: Ever since I applied to college in 2009, I have been really passionate about the way that college admissions works, particularly for youth from non-traditional backgrounds and youth who have dealt with mental health issues.

I had a really complicated childhood and adolescence. And I had to explain it when I was 16 and 17 years old and learn how to package this complicated story that included parental neglect, my parents' mental illness, but also my own mental health struggles, including hospitalization, self-harm, and an eating disorder.

In her book, Emi shares: “‘Come to the house,’ I begged the adults, sure that if anyone saw how we lived, they’d understand why I was increasingly miserable.” But “no one came,” she wrote. She describes being hospitalized at 13 for a suicide attempt — and had clean air, hot water, meals there. “As soon as I got home, I wanted to go back,” she wrote.

Even though 80% of foster youth have significant mental issues, it felt like colleges wanted diverse candidates, but didn't necessarily want some of the aftermath that comes with those experiences.

I felt like there was so much pressure to be kind of this perfect victim: Be somebody who could check a box for them, but who wasn't going to need anything special or require special support.

I think that's a devastating thing to go through as a young person. I think it can get really, it gets really complicated for teenagers and children who are still going through that phase of, ‘What is my identity?’

And for me, it was definitely worse because nobody was talking about it. It would've been really helpful to have somebody that I could see publicly who was like, ‘Hey, I've been there. I had to make these edits in my application. And you know what? It's okay. You're still a whole person.’

DB: How has stigma and discrimination affected you?

EN: I was told that my mental health issues were basically because of me, you know — that I was not strong enough, that I was bad, that I should have been able to deal with what was going on at home. And if I had tried harder, I would've been able to.

Those messages can make it so hard to say, ‘No, the problem isn't me.’

I wish that I could go back and tell my younger self: ‘It is not your fault. It’s totally natural that when bad things happen to us, we respond. That is part of what makes us human. And that's totally okay.’

A few of my early experiences with stigma were when I told adults what was happening for me at home: my Mom was a hoarder, there was gaslighting happening, and emotional abuse. The more honest I was, the less people trusted me.

I found that as I moved through the system of getting medication and receiving diagnoses that unfortunately, sometimes doctors would trust me less because I had received a specific diagnosis.

Like a lot of traumatized young people, I was given a borderline personality disorder diagnosis. Because I was self-harming; I struggled with my emotions.

I experienced so much judgment from having that in my file. People saw that in my chart and then treated me in a certain way because of it.

We want people to seek help and get treatment. And I also hope that people in the future receive better treatment than I got or so many people are getting in part because of their socioeconomic status or their demographics. I really hope that therapy and medicine moves forward.

DB: It's such a striking example. With borderline personality disorder, like bipolar disorder, a set of very loaded stereotypes accompany these terms. Unfortunately, when you show up as a patient with one of these descriptors in your file, so do all of those stereotypes.

And the people who we trust with our medical care are also humans with biases and access to all these stereotypes. Even when we show up for something completely unrelated to our mental health, having a label like this on our chart can sometimes make us a more “difficult” patient, one who’s less trusted with our symptoms. And there's good evidence that folks with mental health diagnoses actually get treated very differently for physical health symptoms, because their experiences are invalidated to a greater extent. It’s called diagnostic foreshadowing — I know neither of us is a stranger to this.

EN: That's so horrible, especially because being exposed to certain mental health stressors can really put people at risk for other physical health conditions.

DB: Absolutely. As you know, people with serious mental illness are dying today two decades sooner, not just because of suicide, but also from chronic medical illness like diabetes, heart disease, and cancer, that is more progressive than it might otherwise have been, thanks in part to receiving less evidence-based care — and from the cumulative toll of the stress we experience.

EN: Yeah, it's so hard. I have chronic pain, and there's clear link between trauma and chronic pain. And also, for years, I would see the doctor and it would be like — this is just part of having post-traumatic stress disorder, right? It makes you more sensitive. And that can stop you from looking at life factors, environmental factors, underlying root causes. If somebody just tells you it's psychosomatic, you're not gonna be like, ‘Oh, maybe I should stop wearing those tight jeans.’ I wore tight jeans the other day and I was like, ‘Wow, okay. This is what I was going through a few years ago. It wasn't in my head. It was these pants.’

DB: Yes, absolutely! ….You’ve written: “The same crisis that leads to an outpouring of support for a wealthy child might cause a foster youth to be sent to a locked facility, prescribed antipsychotics, and forced to change schools.”

EN: I talked to 11 different students for this piece, coming from a really wide range of backgrounds, races, ethnicity, income levels. And I expected to see a huge difference in the mental health conditions people were struggling with.

But actually, the students' experiences were much more similar than I expected — but the consequences for those experiences was much wider.

There's a whole system that protects people who have power. And these are children — all children should be protected.

It seemed just so very unfair that if you go through a mental health hospitalization at an elite private school, they will make it sound like you had a concussion or mono —versus at a lot of schools, it's just like, ‘Too bad, so sad. We're not going to count any grades from when you were there.’

Even when the law says that this is not okay, it's something that happens — and it's something that most people don't recognize happens. They assume if you're poorer, you must be sicker, it must be impacting you in some way that's more dangerous or scary. 

If you're coming from a place of comfort — a middle-class, White American — it's hard to imagine having a crisis, showing up in tears in a teacher's office and being taken against your will to a locked facility and having your life turned upside down. Even though it's something that happens all the time.

I think it's crucial for admissions officers, college counselors, and teachers to know that range of experiences. So that when you're writing a letter, looking at an application, or deciding how to treat somebody, you recognize: it's not just this person's mental health issue, it's this whole society that responds to different people very differently.

It’s very naive on colleges’ part to think that just because somebody isn't disclosing or isn't forced to disclose a mental health condition, that they haven't got one.

There's a lot of evidence that mental health conditions tend to emerge during [adolescence and] college.

I spoke to some people for the story who specifically put off seeking treatment [for a mental health condition] in high school because they were worried that it would affect their college application.

And those people had some of the hardest times in college.

Because it can take years to find the right therapist, the right medication to kind of stabilize. If it’s possible for that to happen before showing up on campus, it seems like a win all around.

DB: You've also written about how we have this very unrealistic outlook of holding the individual singly responsible for their failures, their successes, and the harm that does in not acknowledging all of the structural constraints for the experiences we have. Can you share more about that?

EN: So much of this stems from the fact that we live in an individualistic culture, and we have so much invested in this idea of meritocracy and the just-world hypothesis, where good things happen to good people.

We're just inundated with these stories of people who overcome the odds, right? Who are told by their doctor, ‘Oh, you're never going to walk again.’ And they are able to walk. And we get this narrative that reflects on them as a person — that they're a good person. And somebody who doesn't defy the expectations is somehow bad.

I think that that shows up a lot in therapy, unfortunately, particularly for people who are lower-income or seeing therapists who might not have the same amount of training as those in higher paid environments.

I was really exposed to that when I was trying to get help — this idea that only I was responsible for my behavior, for my emotions, for my depression or my eating disorder.

Emi has written: “Both success and failure were up to me alone, I was valuable only when I triumphed, and if I couldn’t overcome, I’d be better off dead.”

It is so important for people to have agency and to help people recognize what their agency is.

It's also important to be aware of the harm that can come from placing this burden squarely on the individual.

DB: What’s one myth in this space that you’d like to bust? 

EN: I really want to end this myth that being healthy or recovered or successful means not being affected by the journey or by the bad things that might have happened.

Photo of Emi with the quote: "I really want to end this myth that being healthy or recovered or successful means not being affected by the journey."

I think we're addicted to this story of ‘what doesn't kill you makes you stronger.’ And these people who have been transformed by tragedy into absolute superheroes. I have a lot of respect for those people… But for most people, the truth is more complicated. And I really think that that's okay.

DB: What are you most proud of in your life so far?

EN: I am really proud of my book, Acceptance. I wanted to write it ever since I was applying for college and going through that grueling experience of marketing myself.

I'm proud of it in part because I went back and I looked at a lot of experiences in my life that I would've preferred to never touch again. I went through thousands of pages of medical records, and really built this understanding of the child welfare system and the teen mental health system, which, frankly, I never wanted to know about. But it forced me to grow so much as a person and to really make peace with stuff as much as I could.

I remember the first time I got a set of medical records: I was sitting on the bus coming home from work. I read a few sentences describing me — that I was histrionic, dramatic. And I remember just slamming my laptop shut, like, ‘I'm done. I can't do this project. Like, I was a bad person. I'm going to have to show the world how terrible I was.’ I was filled with guilt.

A few days later I was like, ‘Okay, I could either quit or I can read this and try to come to terms with it.’

I had hundreds of experiences like that and it really required learning how to view things from different points of view. Recognizing that was this set of medical professionals’ point of view, but that’s not my perspective. It just requires taking into account a lot of things at once and still maintaining this fierce empathy for my younger self.

DB: Just because somebody with a degree and with a white coat has written something down in a chart, it's not the Truth with a capital ‘T’… How do you see your mental health journey as having molded your unique superpowers?

EN: I'm really glad you asked that.

My journey was complicated. It was one thing when I was a teenager and I was dealing with some really intense issues around self-harm and eating and also around getting treatments that weren't exactly effective.

Then I had a different experience as an adult when I was finally ready to get therapy. After these damaging therapy experiences as a teen and young adult, I was very skeptical of getting help for my PTSD and some depression that came with that.

I read a lot of research papers about what works and ended up doing prolonged exposure therapy, a form of cognitive-behavioral therapy where you go over the details of the most traumatic event again and again.

It was excruciating — and I felt better almost right away. Even though I had multiple traumatic events and complex trauma, this approach taught me I could face my memories and be okay. 

I think that complexity has given me a lot of empathy and has helped me see not only mental health, but the world, as a very complicated place where a lot of things that seem like they can’t coexist can be true at once.

I think everybody is a mystery.

We often try to reduce people into like, ‘Oh, you're good, you’re bad.’ But most peoples’ lives aren't like that. So as a journalist, I feel really grateful that I'm able to uncover and tell those stories and then also look one layer beneath the conventional wisdom.

It's what I've always wanted to do since I was a teenager. Especially as there's greater awareness about a youth and adult mental health crisis — I feel really grateful… to really point out some of the gaps in reporting and how the narrative does seem to focus on certain populations who usually have more wealth and resources — but are not everybody in America or even most people.

DB: What are your top tips for staying well?

EN: For me, my physical environment is really important. And part of this might be because I grew up in a home with a lot of hoarding. But it just makes me feel so much happier to be in a room with plants and light. And I'm also glad that as I've gotten older, I've learned how to prioritize that. Just putting up putting up a picture that matters to me. It's especially important when I have to stay home a lot or I'm not feeling well.

And the other thing for me that was a huge game-changer was sleep. It's a struggle for me to stay asleep through the night; I have a kind of a weird sleep schedule. In college, I read a book that inspired me to make getting enough sleep my number one priority. Even if it meant getting a bad grade on an assignment, I’d have to do it.

I remember I had this buzz in my head: ‘I want to die. I want to die. I want to die.’

And I didn't really realize that it was there until I slept for 10 hours and then woke up: ‘Wow, where did that go? How do I feel so much more okay today than I felt yesterday?’

That was the first time that I — in years — remembered not feeling suicidal.

DB: That’s powerful. What do you do when you experience ‘red flag’ symptoms?

EN: After two consecutive nights without enough sleep, I usually find myself thinking, ‘I want to die’ repeatedly.

First, it's so useful to realize that this is just a physical response to being tired.

I make a plan to just get through the day, going to bed as early as possible. I try to do something in the meantime that will help me sleep like a bath, a workout class (I need someone else to push me in that state), or a sleep aid.

After I get some rest, I almost always feel better.

DB: What are your hopes for our collective future?

EN: I hope that we can move to a world with greater equality. Inequality has really been on the rise — and I think it's really harming everybody’s mental and physical health to be on that path.

I also hope that as Americans, we can how to recognize and value interdependence and also cherish vulnerability just as much as we cherish these narratives of single-handed overcoming strength.

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Ask Dr Devika B
Spread the light with Dr Devika B
A vibrant newsletter community by pediatrician and former Acting California Surgeon General, Dr Devika Bhushan, to share actionable and evidence-based insights for well-being — while centering lived experience, equity, and cross-cultural nuances