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In this episode, we talk to award-winning writer Esmé Weijun Wang (she/her) about how she uses her neurodivergence to inspire her writing and advocacy work. Tune in to learn about what it’s like to be multiply diagnosed and how mental health and neurodivergence intersect.
Content Warning: Mental health, self-harm
If you’d like to listen to or watch our interview with Esmé, the episode is available on YouTube, Spotify, and Apple Podcasts.
Vanessa: Hi and welcome to Brainstorm | Changemakers by Tiimo. In this series, we're talking to experts, activists, and movers who are shaking things up in the neurodivergent space. My name is Vanessa and I'm the head of Brand Communications at Tiimo, a Denmark-based startup that gives neurodivergent people the planning power to take charge of their day and feel validated at work, at home, and in their communities.
Today we're joined by Esmé Weijun Wang, an award-winning writer, speaker, and advocate. Esmé is the author of the bestselling essay collection "The Collected Schizophrenias," for which she received the prestigious Whiting Award for nonfiction. Esmé is also the founder of the Unexpected Shape Writing Academy, a dedicated online space for writers with limitations. Esmé, thank you for joining us here today.
Esmé: Thank you so much for having me. It's so great to be here.
Vanessa: Esmé, you were diagnosed with schizoaffective disorder after a long and complicated journey through the US mental health care system. Could you tell us a bit about that? And also, for those who don't know, explain what it means to have schizoaffective disorder.
Esmé: Yeah, so I'll first explain what schizoaffective disorder is, because I think that's a good kind of starting place. I like to describe it as a combination of schizophrenia and a mood disorder because that's essentially what it is. If somebody has a mood disorder such as depression or bipolar disorder and they experience psychosis—and also, I'll talk about what psychosis is—the psychosis happens in a mood episode. So, for bipolar disorder, in a manic episode or in a depressive episode, or in the case of depression, during a depression. And schizoaffective disorder, though, there are different types. So there's the type with just depression.
I happen to have the one with both mania and depression. So when I'm not in an episode of mania or depression, I will have episodes of psychosis in between instead of during those mood episodes. And psychosis is just very simply described as seeing things or experiencing things through your senses that aren't really there. And that can be anything from things you hear to things you see or things you smell or feel.
So that's my kind of basic explanation of what schizoaffective disorder is. And I call it something under the broader umbrella of the schizophrenias, which are schizophrenia and all of its related forms. So in terms of how I got diagnosed, as you can probably tell, it took a really long time for me to get diagnosed from my very first time visiting a psychiatrist, which was when I was about 16 or 17.
So I was first diagnosed with depression and anxiety. When I was 18, I was diagnosed with bipolar disorder, and then when I was in my late twenties, early thirties, I was diagnosed with schizoaffective disorder, bipolar type. And I think there are a number of reasons it took so long for me to get the diagnosis that finally stuck or has stuck to this point. One reason is simply that bipolar disorder does not typically develop until you're in young adulthood, and the schizophrenias tend to not develop until you're about in your twenties. So it was just purely getting older that caused these different diagnoses to pop up. But for the schizoaffective disorder, I personally knew I had schizoaffective disorder for a significantly long time before I got the formal diagnosis, and I think this was in large part because my psychiatrist didn't want me to feel stigmatized.I think it's a very heavy diagnosis to have. It can cause problems with legal matters if your medical records have to be unsealed or other issues. And so I didn't actually get that diagnosis for quite a while.
Vanessa: And as you just pointed out also in interviews, these kinds of diagnoses like bipolar disorder or schizoaffective disorder first tend to appear the symptoms when you are in your twenties. That's the sort of time when you are beginning your college education and that was the case for you. I wanted to ask you, how did the educational system support or fail to support you?
Esmé: Yeah, so the first college I went to was Yale University, and I have an essay in my book called "Yale Will Not Save You," which is about my experience going to Yale and what happened. Essentially, when I got to Yale, there was no talk about being a disabled student. This was not something I thought was unusual because it was the first time I'd ever gone to college. I didn't know that. But there were essentially no disability services that I knew of or would have known to seek out. Also, when I was hospitalized for the first time in my freshman year, they told me I would either have to leave for a semester or I would have to have my mom come out and live with me or a parent come out and live with me for the semester.
Not everyone's parents can do that, but my mom actually was able to do that. And so she came and we moved into an apartment because again, they wouldn't let me live on campus for a semester. And then that happened again in the next year, in my sophomore year, my second year in college. And so that was the point where they were like, "You have to leave, you're going to leave, and then you can apply to come back." But we may or may not let you come back. So I left and I did all the things that I felt that they told me to do. And then I flew back out to New Haven and I did a day of interviews. I think it was something like 5 to 8 interviews that took all day. And then I waited for weeks and weeks and they finally called and just said, "We can't readmit you." So you can either wait for another semester or you can do something else. And I chose to do something else. So I ended up going to Stanford. But when I asked them what was it about the process that I didn't pass, they said, "That's confidential and we can't tell you." So it was just a very difficult process. I was diagnosed in the summer before college started and I wasn't put on medication until I got to college.
I was being monitored with these blood tests to see if I had enough of the medication in my system to see if it was a therapeutic level. And I was not told until one day they called me and said, "Hi, we're the lab at the clinic. And we just wanted to let you know that, I don't know if you know this, but your levels have never been therapeutic the entire time you've been on this medication." And it was around that time that I was having a really bad episode. And so at that point, I was like, "Something really wrong has happened here." And so it was not a very supportive environment. Before I even was hospitalized, a fellow student told me or gave me the advice, "Never tell them you're thinking of killing yourself, even if you are, because it's not going to be good for you." And I didn't quite take that advice to heart. And that is what led me to become hospitalized, was expressing that I had been thinking about hurting myself in that way.
There have been a lot of changes since then. I wrote about that years ago and I continued to advocate for that. Different policies, at least to have like a universal policy among colleges and universities to help students who are living with mental illness but it wasn't until very, very recently about this year that Yale started actually changing its policies. And they did invite me back to give a talk. So I did that earlier this year, 2023.
Vanessa: So policies meant to support and help. And you probably have never received from Yale an explanation.
Esmé: No, never. It's really funny because people ask me, "So have they ever apologized to you?" And I was like, "No, of course not. They would never. They don't even acknowledge me as a former student, which, you know, I guess that's fine. I went to Stanford. Yeah.
Vanessa: I am amazed that they only started implementing new policies this year.
Esmé: Oh my gosh. Yeah. My graduation year was going to be 05, 2005 and it's 2023. It is eighteen years later and it took this long.
Vanessa: I wanted to ask also whether or what changed for you after your diagnosis of schizoaffective disorder, which you received in 2013? What was the aspect, I mean, you talked about even your psychiatrist being concerned about the stigma surrounding this. How did you cope with that?
Esmé: So by the time I was diagnosed with schizoaffective disorder, I had already gone through the process of getting big diagnoses before, like I said, depression and anxiety when I was 16 or 17 and bipolar disorder.
So by the time I was diagnosed with schizoaffective disorder, it was more of a relief than anything for me. So in the book, my book, "The Collective Schizophrenias," I say something like, "Some people don't like diagnoses, disagreeably calling them labels and ways of putting us in a box. But I like to know that I'm not pioneering an inexplicable experience," and that's really how I feel about it, is it would be so much scarier to me if I were experiencing something that was never experienced by another human being in the world. But to know that the things that I was experiencing had a name and that other people had it and I could learn more about it, was really actually just a relief. Mostly.
And I may, we may, we can talk about this later, but I am actually in the assessment process for an adult Autism assessment, which is very new for me. I didn't know about this or I didn't suspect this, and nobody mentioned it to me when I was writing "The Collective Schizophrenias." So that process is very, very different from being diagnosed with a mental illness like bipolar disorder or schizoaffective disorder. So psychiatry is still a very nascent field, and all of the diagnoses are basically just things made up by humans. They look at a group of people who have approximately the same symptoms and then they put a label on it. And so there is no kind of etiology, there's no blood tests, there's no brain tests, there's no kind of more biological tests that they can do. So what they do is just talk to you and listen to discuss your symptoms, and then they figure out what condition best matches.
That's until they have that, or even up until you have that, they're really treating the symptoms. So even for years before I was formally diagnosed with schizoaffective disorder, they were still treating me with antipsychotic medications. I just didn't have that formal diagnosis.
Vanessa: So you have actually a sort of a clinician or research lab background which feeds into "The Collective Schizophrenias," which was published in 2019, and is this blend of personal experience with rigorous research and cultural observation. When did the idea of this book come to you? Was this a longer process?
Esmé: It started when I wrote my first essay in the book, which was "Perdition Days." It was an essay that found a home in this defunct website called The Toast. I got $50 for it, and it weirdly became a big hit, just went a little bit viral during its time. So I was then interested in writing more about the experiences that I was going through and just researching things that I didn't know about the schizophrenias. And the more essays I accumulated, the more I was interested in putting a book together. Long story short, my agent at the time was not interested in representing me for this book, and she did not think the book was a good idea. I ended up submitting it to a contest called The Gray Wolf Nonfiction Prize, and they selected it. And that's why it's published is because Gray Wolf, which is a small press here in the United States, picked me out of a contest, otherwise it would not have been published. So that was a very, very fortunate thing. And that really was kind of the beginning of the entire book was writing one essay, finding that people found it interesting, and then just kind of going down this rabbit hole of writing more and more essays about the schizophrenias.
Vanessa: It had an incredible reception. The book, you didn't expect that I assume.
Esmé: No, not at all. It was a New York Times bestseller. When they told me that, I was like, "What? Are you sure?" Cuz this was published by a really small press, like, really small compared to the Big Five or, I don't even know if they're called Big Five anymore, but since there was a merger. Yeah, but with Penguin, Random House, I believe, HarperCollins, it was a small press and I was so surprised. It was a bestseller and it stayed on the list for a few weeks and that was very exciting to me.
Vanessa: And ignited a huge discussion. And for our listeners and viewers, it would be lovely if you could read an excerpt from "The Collective Schizophrenias."
Esmé: So I'm just going to read a tiny, tiny bit from the first essay, which is called "Diagnosis."
Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort and death – all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.
People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe” – not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of being with a schizophrenic “who has seemingly crossed over from the human world to the non-human environment”, because other human catastrophes can bear the weight of human narrative – war, kidnapping, death – but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.
Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is not to be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.
That's just a little bit from the very beginning of the book.
Vanessa: Thank you so much. You touch on this also in your essay. But there is this myth perhaps, especially regarding writers, that mental illness can fuel creativity, can heighten perception, and in this sense that your mental illness is a gift in a way inseparable from your talents. What is your take on this?
Esmé: I personally do not like this narrative. I think it takes away from me as a person and what I have done to become the writer that I am. It also, I think, takes away from the incredible amount of suffering that happens with these mental illnesses. Often a major symptom that has to be there for these to be diagnosed is some kind of impairment to your life or some sensation of suffering. And so schizoaffective disorder has caused a great deal of suffering in my life. And I do not think that for the most part, experiencing that suffering is a good way to be a writer. Like I find that when I'm in the worst of it, I cannot write anything. I did manage to write "Prediction Days" when I was going through it, but I didn't write the whole thing. It was kind of bare bones and it was really a way for myself to get through the experience.
But for the most part, I feel it's more of a hindrance than a bonus. What I will say is that I do think I have received some interesting experiences from having schizoaffective disorder and my various other neurodivergences, but they are not useful in the moment. They're usually only useful if I look back on them and try to make those into some kind of art.
Vanessa: And you said something interesting and I think something rather unique. And I quote, "I believe that living with limitations is something that can exist alongside an ambitious life." I think this is a wonderful quote. And I wanted to ask if this is something you always held, that belief, or is this something that was really hard won in that journey that you went through?
Esmé: Yeah. I mean, this is, yeah, it's a lifelong process. I think I came to that realization when I went through my life because I was first a very ambitious child. I was raised with high expectations, I was raised with high expectations for myself. And so when I was diagnosed with these things and was going through really hard times with my mental health, I didn't know what to do with that ambition that I had because it didn't go away just because I was very sick. So I tried to find ways to live with schizoaffective disorder and the other kind of mental conditions that I have and physical conditions that I have because I have a whole variety of them. Interestingly, I don't like to think of myself as overcoming them because that's something that a lot of places will say if they're writing about me, they'll be like, the headline is, "Esmé Weijun Wang Overcomes Limitations" or something like that.
And I don't think it's really overcoming the limitations. It's more like you're living inside of the limitations. And that's what my business, the Unexpected Shape, is all about. It's all about the unexpected shapes that we encounter in our lives, the boundaries that we have in our lives, and what we make inside of those unexpected shapes.
Vanessa: And given these unexpected shapes. So what does that unexpected shape look like for you? How do you define success when you are chronically ill?
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Esmé: Oh my gosh, huge question right? That's the million dollar question. It's really interesting because I teach a class called Dream Hunting with Limitations, and in that class, one of the first things that we do is to figure out what is your definition of success?
Because I think a lot of people think about success as something they want to reach without ever actually pinpointing what success means to them. To me, there's a more amorphous definition of success, like I want to be a writer. I want to be a good writer. I want to be a great writer. That's the more amorphous thing. And then I have these definitions of success that are very concrete. Like I would love to receive the MacArthur grant someday, which is this grant here in the United States. And so I think having both the more amorphous definition as well as these more concrete things, which then can often turn into goals which are beneath that, is a helpful way for me at least to think about success.
Vanessa: How does that translate in practice? Like I'm thinking of your career, of how ambitious you have been and have succeeded. How do you go about setting boundaries there in terms of your own expectation and others? You know, you have to do live TV interviews, you have book tours, you have responsibilities vis a vi your publishers. What does it mean in practical terms? Maybe this is more or less about advice.
Esmé: Yeah, so in practical terms, first I have to know what my own limitations are. So for example, my cognition drops significantly as the day goes on. So at around like four or five o'clock, I'll stop being able to think of things that I would have thought of very easily. I'll forget words, forget names. So that is a limitation that I discovered because that has happened to me because of my illnesses or disorders or whatever you want to call them. So then it's my job to notice that limitation and then pass that on to whoever I'm working with. Let them know, hey, if you want me to do something later on in the day, either it needs to be scheduled for earlier or if it has to be later in the day, it can't be something like a speech that I have to give or a talk that I have to give without notes. Like I will need notes. Otherwise, I won't be able to give the talk.
So it's stuff like that where I figure out what my limitations are. Or for example, I need a place to lie down approximately every hour. So if I'm doing a long day of events or book touring, or if I'm at a book festival or something, I will have to ask them. I will need a room to lie down in. And then they generally work to provide that for me. So my agent and I have created this document that we jokingly call my rock star rider, because you know how rock stars have these things like I need to have seven grapefruits and one salad in my room when I arrive, just stuff like that.
But for me, it's stuff like if we're on a campus and I'm going to have to get from place to place on a campus, I need to have a wheelchair. If I am flying internationally, I need to fly business class because I can't remain sitting in one place in a very tight space for quite that long of a time, like a 13-hour flight or 14-hour flight. So there's just things like that that they end up getting addressed because of that rider, which is very helpful. And that way you don't have to repeat yourself all the time. And honestly, for people who are not doing public events all the time and don't feel like they don't have this kind of ability to tell people what their needs are, I do think it's still useful to have a document that has your limitations and needs listed on them and even to give them to the people in your life like your friends and family.
You can just say, "This may sound weird, but I've learned that I have a number of limitations and things that I need in order to best live my life. And would you mind looking at this document and seeing if that would be useful to you?" And usually they'll say yes because they love you. And if they say no, then you may want to reconsider whether or not you want to have them in your life. So that would be the advice that I would give.
Vanessa: And it's also a great thing to become aware of what the limitations are. I mean, that sounds like very useful advice.
Esmé: Yeah. I mean, you have to bump up against them first for a long time before you're like, "Yeah, that's a limitation I have now."
Vanessa: Neurodivergence has become a much-discussed topic in recent years, and as you mentioned, Autism before, that's one of the conditions it encompasses — ADHD, dyslexia, the umbrella is quite vast. However, there seems to be a noticeable absence, at least in Europe, of discussions around schizophrenia and schizoaffective disorder. In this context, why do you think that is, especially after you have ignited this conversation in the US with your book?
Esmé: Well, I am honestly very interested in this question because when I first came upon the term neurodivergence, it was on social media, and I was learning about a lot, but I also was thinking about how a lot of the things apply to me. But I also did not want to use the term neurodivergent to describe myself if it was not my term to use, if that makes sense. So I started investigating: Does neurodivergence include schizophrenia? And I found out that for most people, using that term does include the schizophrenias. Yes, I do think that for a very practical reason, this is not normally thought of under the neurodivergent umbrella simply because it is considered a mental illness that's in the DSM, whereas Autism spectrum disorder and ADHD are considered more — they're not in the DSM, which is the United States kind of Bible of disorders, the Diagnostic and Statistical Manual. So that's one reason, I think, because people tend to think of schizophrenias as a mental illness, which is a separate category, than neurodivergence, which is over here. Yes. So those are a few things that I think make the difference.
Also, I do feel like just the conversation about schizophrenias is still pretty limited in the United States. I do think that my book helped in some way with the stigma regarding that diagnosis. This umbrella of diagnoses that includes schizotypal, personality disorder, schizophrenia, and schizoaffective disorder and a couple of other things. But there's still a huge, huge stigma of these things. My book hopefully helped. I hope it helped in some ways, but I think it's still very scary for people to tell other people that they're living with schizophrenia.
Vanessa: I think your example also helped enormously. I'm sure that people must have reached out to you to say, you know, "Yeah, what an amazing thing to have a role model in this context." And speaking of being a role model, you founded a writing academy for writers with limitations, The Unexpected Shape. What was your intention in starting this project?
Esmé: Yeah, so I actually started teaching classes for people who were living with limitations before I started teaching writing classes. And that was mostly because I didn't think that I had anything to teach about writing.
I thought, well, I just happened to write, and I don't really write nonfiction and all this stuff. So I was teaching classes about restorative journaling while going through difficult times, and I was teaching the dream hunting with limitations class and things. And then I started teaching these writing classes, and I realized that the writing classes that I was teaching about writing personal nonfiction and memoir, which is what the Unexpected Shape Writing Academy is right now, it may expand to fiction writing later, but right now it's about those things.
And my classes were tailored for people who are from marginalized communities who are living with limitations because these are the classes that I needed and can teach. So, for example, most of the classes are one hour long, and that is because I cannot sit for more than an hour. Generally, I need to lie down. It's too much energy to keep myself upright in a chair.
So for me, it's necessary because I can't teach for an extremely long time, and for my students, it's really nice that they're taught online and therefore you can be lying down. You don't have to be on the camera. And then it progressed into, okay, so I'll make recordings of these lessons in these classes and then people can watch them any time they want, and they'll have transcripts, live transcripts. They'll have notes that go with them. I'm trying to make them accessible. People get access to them for six months, so they have a lot of time to go through all of the lessons. But yeah, so there are a lot of reasons I started it, but it did stem from this idea that there are people who are like me out there who are ambitious living with limitations, whatever that means, living with some kind of illness or a neurodivergence, or simply they have kids and they have not a lot of time.
People are living with all kinds of limitations always. It's just the nature of life. And so I felt that as a marginalized writer who is queer and disabled and also Taiwanese-American and things like that, it was really important for me to speak to marginalized communities too because there are so many voices that are not being published. And I really wanted to help students get connections with agents. Hear from editors and learn kind of how to put together a book proposal and things like that that are usually taught in MFA’s. And MFA is can be very expensive. An MFA is a master of fine arts here in the United States. So yeah, that is in a nutshell the reason I started at the Academy.
Vanessa: Talking about the writing academy. I want to ask about the writing academy and who can apply. It sounds like it's very broad. It's not like you have to have a particular type of limitation.
Esmé: No, not at all.
Vanessa: So you can just join and it's international, right? Anybody around the world can join.
Esmé: Yeah. So we have some free resources. I'm creating something called the ten day MFA that's going to be free so people can sign up for that. If they go to my website, they'll be able to find it. They can sign up for my newsletter, which is what I'll announce when it's finished. But I'm currently creating that it’s for students who feel like they weren't able to get an MFA or don't have the time to get an MFA or drop the money to get an MFA.
And basically I'm sharing all of the things I think that I took away from my MFA that were important and I'm just giving it for free in ten a ten-day series of lessons. And then we have these lower-cost options. Are the Academy 101 classes, which are classes that are more foundational or like the one-day writing kickstart for people who haven't written in a long time and they really want to get their writing going, or they just want to start writing or building a writing practice all living with limitations, which I think is very tricky for a lot of people because people are always being told, you have to write every day or you're not a real writer. And I get so angry about that because that's not true for so many people. I used to talk to a lot of women about this particularly, and they especially would be like, I cannot write every day I have childcare responsibilities and I have other responsibilities as a as a woman in this world to take care of.
And I don't have the time necessarily to write every day. So yeah, there there are those foundational classes and then we have, you know, you can take all the, the kind of the writing intensive classes and then there's the even higher level of all inclusive where you get all the things and you know, so we have a number of things available that are really special.
Vanessa: It sounds like a wonderful project and a wonderful, wonderful alternative to to a sort of more traditional MFA where there are no accommodations really, for for writers who have to have to live with these limitations. Iwant to close the interview with a question that you also touch on in a very powerful essay in the Collective Schizophrenias, which is the people who surround those who live with mental illness. And I wanted to ask if you could give to those who want to support their loved ones with schizophrenia and schizoaffective disorder. Some advice.
Esmé: Yeah. So my first. My first thing is I'm speaking directly to you all. You are the people, the loved ones, your you are on a big and important journey as well as the person who is living with the illness. You, I would tell you to read read as much as you can, learn as much as you can about this, because the more you read about it, the more you'll be able to help the person that you're dealing with and living with and loving. So yes, of course, I'm going to recommend my own book. The Collective Schizophrenias, but there are a lot of other books out there. Hidden Valley Road is interesting, even though it's very, very different from mine. That one was Oprah's Book Club pick. There are lots of books out there.I think mine is pretty much one of one of the big memoirs that is about living with it. And Alan Sachs's The Center Cannot Hold is another one. But so just read a lot and then communicate with the person as much as you can.
What do they need? Do they Do they know what they need? Help them figure out what they need.Which can be a very difficult journey. But a fruitful one. And I think and then the last thing that I would try to remember is that this is still a person. This is still a person who loves blueberry pie and hates the sound of crows and loves to watch daytime television or whatever.
Like, this is a person who has desires and likes and dislikes. And it may seem if they're in a psychotic episode or if they have been struggling with the schizophrenias for a very long time and they're very high support, it may seem like they're not there anymore. They're not a real person. And that's something that I address in my book quite a bit, especially in an essay called Toward the Pathology of the Possessed. But they are there, they're a person. Please remember, that.
Vanessa: Esmé, thank much for all your insights and for sharing your experience with us.
Esmé: Thank you for having me.
Vanessa: And that wraps up today's conversation with Esmé Wang. If you'd like to delve deeper into Esmé’s work, follow her on Instagram at @esmewwang. If you're a writer with limitations, check out Esmé’s Writing Academy and her tips and tools for writers at esmewang.com. We'd love to hear your thoughts on this interview DM us @TiimoApp or drop us an email at community@tiimo.dk.
Thanks for tuning in. And see you next time!
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If you or someone you know is dealing with mental health challenges, please remember that you're not alone. Reach out to mental health professionals, support organizations, or crisis helplines for assistance and guidance. Here are some resources to consider:
In this episode, we talk to award-winning writer Esmé Weijun Wang (she/her) about how she uses her neurodivergence to inspire her writing and advocacy work. Tune in to learn about what it’s like to be multiply diagnosed and how mental health and neurodivergence intersect.
Content Warning: Mental health, self-harm
If you’d like to listen to or watch our interview with Esmé, the episode is available on YouTube, Spotify, and Apple Podcasts.
Vanessa: Hi and welcome to Brainstorm | Changemakers by Tiimo. In this series, we're talking to experts, activists, and movers who are shaking things up in the neurodivergent space. My name is Vanessa and I'm the head of Brand Communications at Tiimo, a Denmark-based startup that gives neurodivergent people the planning power to take charge of their day and feel validated at work, at home, and in their communities.
Today we're joined by Esmé Weijun Wang, an award-winning writer, speaker, and advocate. Esmé is the author of the bestselling essay collection "The Collected Schizophrenias," for which she received the prestigious Whiting Award for nonfiction. Esmé is also the founder of the Unexpected Shape Writing Academy, a dedicated online space for writers with limitations. Esmé, thank you for joining us here today.
Esmé: Thank you so much for having me. It's so great to be here.
Vanessa: Esmé, you were diagnosed with schizoaffective disorder after a long and complicated journey through the US mental health care system. Could you tell us a bit about that? And also, for those who don't know, explain what it means to have schizoaffective disorder.
Esmé: Yeah, so I'll first explain what schizoaffective disorder is, because I think that's a good kind of starting place. I like to describe it as a combination of schizophrenia and a mood disorder because that's essentially what it is. If somebody has a mood disorder such as depression or bipolar disorder and they experience psychosis—and also, I'll talk about what psychosis is—the psychosis happens in a mood episode. So, for bipolar disorder, in a manic episode or in a depressive episode, or in the case of depression, during a depression. And schizoaffective disorder, though, there are different types. So there's the type with just depression.
I happen to have the one with both mania and depression. So when I'm not in an episode of mania or depression, I will have episodes of psychosis in between instead of during those mood episodes. And psychosis is just very simply described as seeing things or experiencing things through your senses that aren't really there. And that can be anything from things you hear to things you see or things you smell or feel.
So that's my kind of basic explanation of what schizoaffective disorder is. And I call it something under the broader umbrella of the schizophrenias, which are schizophrenia and all of its related forms. So in terms of how I got diagnosed, as you can probably tell, it took a really long time for me to get diagnosed from my very first time visiting a psychiatrist, which was when I was about 16 or 17.
So I was first diagnosed with depression and anxiety. When I was 18, I was diagnosed with bipolar disorder, and then when I was in my late twenties, early thirties, I was diagnosed with schizoaffective disorder, bipolar type. And I think there are a number of reasons it took so long for me to get the diagnosis that finally stuck or has stuck to this point. One reason is simply that bipolar disorder does not typically develop until you're in young adulthood, and the schizophrenias tend to not develop until you're about in your twenties. So it was just purely getting older that caused these different diagnoses to pop up. But for the schizoaffective disorder, I personally knew I had schizoaffective disorder for a significantly long time before I got the formal diagnosis, and I think this was in large part because my psychiatrist didn't want me to feel stigmatized.I think it's a very heavy diagnosis to have. It can cause problems with legal matters if your medical records have to be unsealed or other issues. And so I didn't actually get that diagnosis for quite a while.
Vanessa: And as you just pointed out also in interviews, these kinds of diagnoses like bipolar disorder or schizoaffective disorder first tend to appear the symptoms when you are in your twenties. That's the sort of time when you are beginning your college education and that was the case for you. I wanted to ask you, how did the educational system support or fail to support you?
Esmé: Yeah, so the first college I went to was Yale University, and I have an essay in my book called "Yale Will Not Save You," which is about my experience going to Yale and what happened. Essentially, when I got to Yale, there was no talk about being a disabled student. This was not something I thought was unusual because it was the first time I'd ever gone to college. I didn't know that. But there were essentially no disability services that I knew of or would have known to seek out. Also, when I was hospitalized for the first time in my freshman year, they told me I would either have to leave for a semester or I would have to have my mom come out and live with me or a parent come out and live with me for the semester.
Not everyone's parents can do that, but my mom actually was able to do that. And so she came and we moved into an apartment because again, they wouldn't let me live on campus for a semester. And then that happened again in the next year, in my sophomore year, my second year in college. And so that was the point where they were like, "You have to leave, you're going to leave, and then you can apply to come back." But we may or may not let you come back. So I left and I did all the things that I felt that they told me to do. And then I flew back out to New Haven and I did a day of interviews. I think it was something like 5 to 8 interviews that took all day. And then I waited for weeks and weeks and they finally called and just said, "We can't readmit you." So you can either wait for another semester or you can do something else. And I chose to do something else. So I ended up going to Stanford. But when I asked them what was it about the process that I didn't pass, they said, "That's confidential and we can't tell you." So it was just a very difficult process. I was diagnosed in the summer before college started and I wasn't put on medication until I got to college.
I was being monitored with these blood tests to see if I had enough of the medication in my system to see if it was a therapeutic level. And I was not told until one day they called me and said, "Hi, we're the lab at the clinic. And we just wanted to let you know that, I don't know if you know this, but your levels have never been therapeutic the entire time you've been on this medication." And it was around that time that I was having a really bad episode. And so at that point, I was like, "Something really wrong has happened here." And so it was not a very supportive environment. Before I even was hospitalized, a fellow student told me or gave me the advice, "Never tell them you're thinking of killing yourself, even if you are, because it's not going to be good for you." And I didn't quite take that advice to heart. And that is what led me to become hospitalized, was expressing that I had been thinking about hurting myself in that way.
There have been a lot of changes since then. I wrote about that years ago and I continued to advocate for that. Different policies, at least to have like a universal policy among colleges and universities to help students who are living with mental illness but it wasn't until very, very recently about this year that Yale started actually changing its policies. And they did invite me back to give a talk. So I did that earlier this year, 2023.
Vanessa: So policies meant to support and help. And you probably have never received from Yale an explanation.
Esmé: No, never. It's really funny because people ask me, "So have they ever apologized to you?" And I was like, "No, of course not. They would never. They don't even acknowledge me as a former student, which, you know, I guess that's fine. I went to Stanford. Yeah.
Vanessa: I am amazed that they only started implementing new policies this year.
Esmé: Oh my gosh. Yeah. My graduation year was going to be 05, 2005 and it's 2023. It is eighteen years later and it took this long.
Vanessa: I wanted to ask also whether or what changed for you after your diagnosis of schizoaffective disorder, which you received in 2013? What was the aspect, I mean, you talked about even your psychiatrist being concerned about the stigma surrounding this. How did you cope with that?
Esmé: So by the time I was diagnosed with schizoaffective disorder, I had already gone through the process of getting big diagnoses before, like I said, depression and anxiety when I was 16 or 17 and bipolar disorder.
So by the time I was diagnosed with schizoaffective disorder, it was more of a relief than anything for me. So in the book, my book, "The Collective Schizophrenias," I say something like, "Some people don't like diagnoses, disagreeably calling them labels and ways of putting us in a box. But I like to know that I'm not pioneering an inexplicable experience," and that's really how I feel about it, is it would be so much scarier to me if I were experiencing something that was never experienced by another human being in the world. But to know that the things that I was experiencing had a name and that other people had it and I could learn more about it, was really actually just a relief. Mostly.
And I may, we may, we can talk about this later, but I am actually in the assessment process for an adult Autism assessment, which is very new for me. I didn't know about this or I didn't suspect this, and nobody mentioned it to me when I was writing "The Collective Schizophrenias." So that process is very, very different from being diagnosed with a mental illness like bipolar disorder or schizoaffective disorder. So psychiatry is still a very nascent field, and all of the diagnoses are basically just things made up by humans. They look at a group of people who have approximately the same symptoms and then they put a label on it. And so there is no kind of etiology, there's no blood tests, there's no brain tests, there's no kind of more biological tests that they can do. So what they do is just talk to you and listen to discuss your symptoms, and then they figure out what condition best matches.
That's until they have that, or even up until you have that, they're really treating the symptoms. So even for years before I was formally diagnosed with schizoaffective disorder, they were still treating me with antipsychotic medications. I just didn't have that formal diagnosis.
Vanessa: So you have actually a sort of a clinician or research lab background which feeds into "The Collective Schizophrenias," which was published in 2019, and is this blend of personal experience with rigorous research and cultural observation. When did the idea of this book come to you? Was this a longer process?
Esmé: It started when I wrote my first essay in the book, which was "Perdition Days." It was an essay that found a home in this defunct website called The Toast. I got $50 for it, and it weirdly became a big hit, just went a little bit viral during its time. So I was then interested in writing more about the experiences that I was going through and just researching things that I didn't know about the schizophrenias. And the more essays I accumulated, the more I was interested in putting a book together. Long story short, my agent at the time was not interested in representing me for this book, and she did not think the book was a good idea. I ended up submitting it to a contest called The Gray Wolf Nonfiction Prize, and they selected it. And that's why it's published is because Gray Wolf, which is a small press here in the United States, picked me out of a contest, otherwise it would not have been published. So that was a very, very fortunate thing. And that really was kind of the beginning of the entire book was writing one essay, finding that people found it interesting, and then just kind of going down this rabbit hole of writing more and more essays about the schizophrenias.
Vanessa: It had an incredible reception. The book, you didn't expect that I assume.
Esmé: No, not at all. It was a New York Times bestseller. When they told me that, I was like, "What? Are you sure?" Cuz this was published by a really small press, like, really small compared to the Big Five or, I don't even know if they're called Big Five anymore, but since there was a merger. Yeah, but with Penguin, Random House, I believe, HarperCollins, it was a small press and I was so surprised. It was a bestseller and it stayed on the list for a few weeks and that was very exciting to me.
Vanessa: And ignited a huge discussion. And for our listeners and viewers, it would be lovely if you could read an excerpt from "The Collective Schizophrenias."
Esmé: So I'm just going to read a tiny, tiny bit from the first essay, which is called "Diagnosis."
Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort and death – all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.
People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe” – not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of being with a schizophrenic “who has seemingly crossed over from the human world to the non-human environment”, because other human catastrophes can bear the weight of human narrative – war, kidnapping, death – but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.
Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is not to be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.
That's just a little bit from the very beginning of the book.
Vanessa: Thank you so much. You touch on this also in your essay. But there is this myth perhaps, especially regarding writers, that mental illness can fuel creativity, can heighten perception, and in this sense that your mental illness is a gift in a way inseparable from your talents. What is your take on this?
Esmé: I personally do not like this narrative. I think it takes away from me as a person and what I have done to become the writer that I am. It also, I think, takes away from the incredible amount of suffering that happens with these mental illnesses. Often a major symptom that has to be there for these to be diagnosed is some kind of impairment to your life or some sensation of suffering. And so schizoaffective disorder has caused a great deal of suffering in my life. And I do not think that for the most part, experiencing that suffering is a good way to be a writer. Like I find that when I'm in the worst of it, I cannot write anything. I did manage to write "Prediction Days" when I was going through it, but I didn't write the whole thing. It was kind of bare bones and it was really a way for myself to get through the experience.
But for the most part, I feel it's more of a hindrance than a bonus. What I will say is that I do think I have received some interesting experiences from having schizoaffective disorder and my various other neurodivergences, but they are not useful in the moment. They're usually only useful if I look back on them and try to make those into some kind of art.
Vanessa: And you said something interesting and I think something rather unique. And I quote, "I believe that living with limitations is something that can exist alongside an ambitious life." I think this is a wonderful quote. And I wanted to ask if this is something you always held, that belief, or is this something that was really hard won in that journey that you went through?
Esmé: Yeah. I mean, this is, yeah, it's a lifelong process. I think I came to that realization when I went through my life because I was first a very ambitious child. I was raised with high expectations, I was raised with high expectations for myself. And so when I was diagnosed with these things and was going through really hard times with my mental health, I didn't know what to do with that ambition that I had because it didn't go away just because I was very sick. So I tried to find ways to live with schizoaffective disorder and the other kind of mental conditions that I have and physical conditions that I have because I have a whole variety of them. Interestingly, I don't like to think of myself as overcoming them because that's something that a lot of places will say if they're writing about me, they'll be like, the headline is, "Esmé Weijun Wang Overcomes Limitations" or something like that.
And I don't think it's really overcoming the limitations. It's more like you're living inside of the limitations. And that's what my business, the Unexpected Shape, is all about. It's all about the unexpected shapes that we encounter in our lives, the boundaries that we have in our lives, and what we make inside of those unexpected shapes.
Vanessa: And given these unexpected shapes. So what does that unexpected shape look like for you? How do you define success when you are chronically ill?
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Esmé: Oh my gosh, huge question right? That's the million dollar question. It's really interesting because I teach a class called Dream Hunting with Limitations, and in that class, one of the first things that we do is to figure out what is your definition of success?
Because I think a lot of people think about success as something they want to reach without ever actually pinpointing what success means to them. To me, there's a more amorphous definition of success, like I want to be a writer. I want to be a good writer. I want to be a great writer. That's the more amorphous thing. And then I have these definitions of success that are very concrete. Like I would love to receive the MacArthur grant someday, which is this grant here in the United States. And so I think having both the more amorphous definition as well as these more concrete things, which then can often turn into goals which are beneath that, is a helpful way for me at least to think about success.
Vanessa: How does that translate in practice? Like I'm thinking of your career, of how ambitious you have been and have succeeded. How do you go about setting boundaries there in terms of your own expectation and others? You know, you have to do live TV interviews, you have book tours, you have responsibilities vis a vi your publishers. What does it mean in practical terms? Maybe this is more or less about advice.
Esmé: Yeah, so in practical terms, first I have to know what my own limitations are. So for example, my cognition drops significantly as the day goes on. So at around like four or five o'clock, I'll stop being able to think of things that I would have thought of very easily. I'll forget words, forget names. So that is a limitation that I discovered because that has happened to me because of my illnesses or disorders or whatever you want to call them. So then it's my job to notice that limitation and then pass that on to whoever I'm working with. Let them know, hey, if you want me to do something later on in the day, either it needs to be scheduled for earlier or if it has to be later in the day, it can't be something like a speech that I have to give or a talk that I have to give without notes. Like I will need notes. Otherwise, I won't be able to give the talk.
So it's stuff like that where I figure out what my limitations are. Or for example, I need a place to lie down approximately every hour. So if I'm doing a long day of events or book touring, or if I'm at a book festival or something, I will have to ask them. I will need a room to lie down in. And then they generally work to provide that for me. So my agent and I have created this document that we jokingly call my rock star rider, because you know how rock stars have these things like I need to have seven grapefruits and one salad in my room when I arrive, just stuff like that.
But for me, it's stuff like if we're on a campus and I'm going to have to get from place to place on a campus, I need to have a wheelchair. If I am flying internationally, I need to fly business class because I can't remain sitting in one place in a very tight space for quite that long of a time, like a 13-hour flight or 14-hour flight. So there's just things like that that they end up getting addressed because of that rider, which is very helpful. And that way you don't have to repeat yourself all the time. And honestly, for people who are not doing public events all the time and don't feel like they don't have this kind of ability to tell people what their needs are, I do think it's still useful to have a document that has your limitations and needs listed on them and even to give them to the people in your life like your friends and family.
You can just say, "This may sound weird, but I've learned that I have a number of limitations and things that I need in order to best live my life. And would you mind looking at this document and seeing if that would be useful to you?" And usually they'll say yes because they love you. And if they say no, then you may want to reconsider whether or not you want to have them in your life. So that would be the advice that I would give.
Vanessa: And it's also a great thing to become aware of what the limitations are. I mean, that sounds like very useful advice.
Esmé: Yeah. I mean, you have to bump up against them first for a long time before you're like, "Yeah, that's a limitation I have now."
Vanessa: Neurodivergence has become a much-discussed topic in recent years, and as you mentioned, Autism before, that's one of the conditions it encompasses — ADHD, dyslexia, the umbrella is quite vast. However, there seems to be a noticeable absence, at least in Europe, of discussions around schizophrenia and schizoaffective disorder. In this context, why do you think that is, especially after you have ignited this conversation in the US with your book?
Esmé: Well, I am honestly very interested in this question because when I first came upon the term neurodivergence, it was on social media, and I was learning about a lot, but I also was thinking about how a lot of the things apply to me. But I also did not want to use the term neurodivergent to describe myself if it was not my term to use, if that makes sense. So I started investigating: Does neurodivergence include schizophrenia? And I found out that for most people, using that term does include the schizophrenias. Yes, I do think that for a very practical reason, this is not normally thought of under the neurodivergent umbrella simply because it is considered a mental illness that's in the DSM, whereas Autism spectrum disorder and ADHD are considered more — they're not in the DSM, which is the United States kind of Bible of disorders, the Diagnostic and Statistical Manual. So that's one reason, I think, because people tend to think of schizophrenias as a mental illness, which is a separate category, than neurodivergence, which is over here. Yes. So those are a few things that I think make the difference.
Also, I do feel like just the conversation about schizophrenias is still pretty limited in the United States. I do think that my book helped in some way with the stigma regarding that diagnosis. This umbrella of diagnoses that includes schizotypal, personality disorder, schizophrenia, and schizoaffective disorder and a couple of other things. But there's still a huge, huge stigma of these things. My book hopefully helped. I hope it helped in some ways, but I think it's still very scary for people to tell other people that they're living with schizophrenia.
Vanessa: I think your example also helped enormously. I'm sure that people must have reached out to you to say, you know, "Yeah, what an amazing thing to have a role model in this context." And speaking of being a role model, you founded a writing academy for writers with limitations, The Unexpected Shape. What was your intention in starting this project?
Esmé: Yeah, so I actually started teaching classes for people who were living with limitations before I started teaching writing classes. And that was mostly because I didn't think that I had anything to teach about writing.
I thought, well, I just happened to write, and I don't really write nonfiction and all this stuff. So I was teaching classes about restorative journaling while going through difficult times, and I was teaching the dream hunting with limitations class and things. And then I started teaching these writing classes, and I realized that the writing classes that I was teaching about writing personal nonfiction and memoir, which is what the Unexpected Shape Writing Academy is right now, it may expand to fiction writing later, but right now it's about those things.
And my classes were tailored for people who are from marginalized communities who are living with limitations because these are the classes that I needed and can teach. So, for example, most of the classes are one hour long, and that is because I cannot sit for more than an hour. Generally, I need to lie down. It's too much energy to keep myself upright in a chair.
So for me, it's necessary because I can't teach for an extremely long time, and for my students, it's really nice that they're taught online and therefore you can be lying down. You don't have to be on the camera. And then it progressed into, okay, so I'll make recordings of these lessons in these classes and then people can watch them any time they want, and they'll have transcripts, live transcripts. They'll have notes that go with them. I'm trying to make them accessible. People get access to them for six months, so they have a lot of time to go through all of the lessons. But yeah, so there are a lot of reasons I started it, but it did stem from this idea that there are people who are like me out there who are ambitious living with limitations, whatever that means, living with some kind of illness or a neurodivergence, or simply they have kids and they have not a lot of time.
People are living with all kinds of limitations always. It's just the nature of life. And so I felt that as a marginalized writer who is queer and disabled and also Taiwanese-American and things like that, it was really important for me to speak to marginalized communities too because there are so many voices that are not being published. And I really wanted to help students get connections with agents. Hear from editors and learn kind of how to put together a book proposal and things like that that are usually taught in MFA’s. And MFA is can be very expensive. An MFA is a master of fine arts here in the United States. So yeah, that is in a nutshell the reason I started at the Academy.
Vanessa: Talking about the writing academy. I want to ask about the writing academy and who can apply. It sounds like it's very broad. It's not like you have to have a particular type of limitation.
Esmé: No, not at all.
Vanessa: So you can just join and it's international, right? Anybody around the world can join.
Esmé: Yeah. So we have some free resources. I'm creating something called the ten day MFA that's going to be free so people can sign up for that. If they go to my website, they'll be able to find it. They can sign up for my newsletter, which is what I'll announce when it's finished. But I'm currently creating that it’s for students who feel like they weren't able to get an MFA or don't have the time to get an MFA or drop the money to get an MFA.
And basically I'm sharing all of the things I think that I took away from my MFA that were important and I'm just giving it for free in ten a ten-day series of lessons. And then we have these lower-cost options. Are the Academy 101 classes, which are classes that are more foundational or like the one-day writing kickstart for people who haven't written in a long time and they really want to get their writing going, or they just want to start writing or building a writing practice all living with limitations, which I think is very tricky for a lot of people because people are always being told, you have to write every day or you're not a real writer. And I get so angry about that because that's not true for so many people. I used to talk to a lot of women about this particularly, and they especially would be like, I cannot write every day I have childcare responsibilities and I have other responsibilities as a as a woman in this world to take care of.
And I don't have the time necessarily to write every day. So yeah, there there are those foundational classes and then we have, you know, you can take all the, the kind of the writing intensive classes and then there's the even higher level of all inclusive where you get all the things and you know, so we have a number of things available that are really special.
Vanessa: It sounds like a wonderful project and a wonderful, wonderful alternative to to a sort of more traditional MFA where there are no accommodations really, for for writers who have to have to live with these limitations. Iwant to close the interview with a question that you also touch on in a very powerful essay in the Collective Schizophrenias, which is the people who surround those who live with mental illness. And I wanted to ask if you could give to those who want to support their loved ones with schizophrenia and schizoaffective disorder. Some advice.
Esmé: Yeah. So my first. My first thing is I'm speaking directly to you all. You are the people, the loved ones, your you are on a big and important journey as well as the person who is living with the illness. You, I would tell you to read read as much as you can, learn as much as you can about this, because the more you read about it, the more you'll be able to help the person that you're dealing with and living with and loving. So yes, of course, I'm going to recommend my own book. The Collective Schizophrenias, but there are a lot of other books out there. Hidden Valley Road is interesting, even though it's very, very different from mine. That one was Oprah's Book Club pick. There are lots of books out there.I think mine is pretty much one of one of the big memoirs that is about living with it. And Alan Sachs's The Center Cannot Hold is another one. But so just read a lot and then communicate with the person as much as you can.
What do they need? Do they Do they know what they need? Help them figure out what they need.Which can be a very difficult journey. But a fruitful one. And I think and then the last thing that I would try to remember is that this is still a person. This is still a person who loves blueberry pie and hates the sound of crows and loves to watch daytime television or whatever.
Like, this is a person who has desires and likes and dislikes. And it may seem if they're in a psychotic episode or if they have been struggling with the schizophrenias for a very long time and they're very high support, it may seem like they're not there anymore. They're not a real person. And that's something that I address in my book quite a bit, especially in an essay called Toward the Pathology of the Possessed. But they are there, they're a person. Please remember, that.
Vanessa: Esmé, thank much for all your insights and for sharing your experience with us.
Esmé: Thank you for having me.
Vanessa: And that wraps up today's conversation with Esmé Wang. If you'd like to delve deeper into Esmé’s work, follow her on Instagram at @esmewwang. If you're a writer with limitations, check out Esmé’s Writing Academy and her tips and tools for writers at esmewang.com. We'd love to hear your thoughts on this interview DM us @TiimoApp or drop us an email at community@tiimo.dk.
Thanks for tuning in. And see you next time!
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If you or someone you know is dealing with mental health challenges, please remember that you're not alone. Reach out to mental health professionals, support organizations, or crisis helplines for assistance and guidance. Here are some resources to consider:
In this episode, we talk to award-winning writer Esmé Weijun Wang (she/her) about how she uses her neurodivergence to inspire her writing and advocacy work. Tune in to learn about what it’s like to be multiply diagnosed and how mental health and neurodivergence intersect.
Content Warning: Mental health, self-harm
If you’d like to listen to or watch our interview with Esmé, the episode is available on YouTube, Spotify, and Apple Podcasts.
Vanessa: Hi and welcome to Brainstorm | Changemakers by Tiimo. In this series, we're talking to experts, activists, and movers who are shaking things up in the neurodivergent space. My name is Vanessa and I'm the head of Brand Communications at Tiimo, a Denmark-based startup that gives neurodivergent people the planning power to take charge of their day and feel validated at work, at home, and in their communities.
Today we're joined by Esmé Weijun Wang, an award-winning writer, speaker, and advocate. Esmé is the author of the bestselling essay collection "The Collected Schizophrenias," for which she received the prestigious Whiting Award for nonfiction. Esmé is also the founder of the Unexpected Shape Writing Academy, a dedicated online space for writers with limitations. Esmé, thank you for joining us here today.
Esmé: Thank you so much for having me. It's so great to be here.
Vanessa: Esmé, you were diagnosed with schizoaffective disorder after a long and complicated journey through the US mental health care system. Could you tell us a bit about that? And also, for those who don't know, explain what it means to have schizoaffective disorder.
Esmé: Yeah, so I'll first explain what schizoaffective disorder is, because I think that's a good kind of starting place. I like to describe it as a combination of schizophrenia and a mood disorder because that's essentially what it is. If somebody has a mood disorder such as depression or bipolar disorder and they experience psychosis—and also, I'll talk about what psychosis is—the psychosis happens in a mood episode. So, for bipolar disorder, in a manic episode or in a depressive episode, or in the case of depression, during a depression. And schizoaffective disorder, though, there are different types. So there's the type with just depression.
I happen to have the one with both mania and depression. So when I'm not in an episode of mania or depression, I will have episodes of psychosis in between instead of during those mood episodes. And psychosis is just very simply described as seeing things or experiencing things through your senses that aren't really there. And that can be anything from things you hear to things you see or things you smell or feel.
So that's my kind of basic explanation of what schizoaffective disorder is. And I call it something under the broader umbrella of the schizophrenias, which are schizophrenia and all of its related forms. So in terms of how I got diagnosed, as you can probably tell, it took a really long time for me to get diagnosed from my very first time visiting a psychiatrist, which was when I was about 16 or 17.
So I was first diagnosed with depression and anxiety. When I was 18, I was diagnosed with bipolar disorder, and then when I was in my late twenties, early thirties, I was diagnosed with schizoaffective disorder, bipolar type. And I think there are a number of reasons it took so long for me to get the diagnosis that finally stuck or has stuck to this point. One reason is simply that bipolar disorder does not typically develop until you're in young adulthood, and the schizophrenias tend to not develop until you're about in your twenties. So it was just purely getting older that caused these different diagnoses to pop up. But for the schizoaffective disorder, I personally knew I had schizoaffective disorder for a significantly long time before I got the formal diagnosis, and I think this was in large part because my psychiatrist didn't want me to feel stigmatized.I think it's a very heavy diagnosis to have. It can cause problems with legal matters if your medical records have to be unsealed or other issues. And so I didn't actually get that diagnosis for quite a while.
Vanessa: And as you just pointed out also in interviews, these kinds of diagnoses like bipolar disorder or schizoaffective disorder first tend to appear the symptoms when you are in your twenties. That's the sort of time when you are beginning your college education and that was the case for you. I wanted to ask you, how did the educational system support or fail to support you?
Esmé: Yeah, so the first college I went to was Yale University, and I have an essay in my book called "Yale Will Not Save You," which is about my experience going to Yale and what happened. Essentially, when I got to Yale, there was no talk about being a disabled student. This was not something I thought was unusual because it was the first time I'd ever gone to college. I didn't know that. But there were essentially no disability services that I knew of or would have known to seek out. Also, when I was hospitalized for the first time in my freshman year, they told me I would either have to leave for a semester or I would have to have my mom come out and live with me or a parent come out and live with me for the semester.
Not everyone's parents can do that, but my mom actually was able to do that. And so she came and we moved into an apartment because again, they wouldn't let me live on campus for a semester. And then that happened again in the next year, in my sophomore year, my second year in college. And so that was the point where they were like, "You have to leave, you're going to leave, and then you can apply to come back." But we may or may not let you come back. So I left and I did all the things that I felt that they told me to do. And then I flew back out to New Haven and I did a day of interviews. I think it was something like 5 to 8 interviews that took all day. And then I waited for weeks and weeks and they finally called and just said, "We can't readmit you." So you can either wait for another semester or you can do something else. And I chose to do something else. So I ended up going to Stanford. But when I asked them what was it about the process that I didn't pass, they said, "That's confidential and we can't tell you." So it was just a very difficult process. I was diagnosed in the summer before college started and I wasn't put on medication until I got to college.
I was being monitored with these blood tests to see if I had enough of the medication in my system to see if it was a therapeutic level. And I was not told until one day they called me and said, "Hi, we're the lab at the clinic. And we just wanted to let you know that, I don't know if you know this, but your levels have never been therapeutic the entire time you've been on this medication." And it was around that time that I was having a really bad episode. And so at that point, I was like, "Something really wrong has happened here." And so it was not a very supportive environment. Before I even was hospitalized, a fellow student told me or gave me the advice, "Never tell them you're thinking of killing yourself, even if you are, because it's not going to be good for you." And I didn't quite take that advice to heart. And that is what led me to become hospitalized, was expressing that I had been thinking about hurting myself in that way.
There have been a lot of changes since then. I wrote about that years ago and I continued to advocate for that. Different policies, at least to have like a universal policy among colleges and universities to help students who are living with mental illness but it wasn't until very, very recently about this year that Yale started actually changing its policies. And they did invite me back to give a talk. So I did that earlier this year, 2023.
Vanessa: So policies meant to support and help. And you probably have never received from Yale an explanation.
Esmé: No, never. It's really funny because people ask me, "So have they ever apologized to you?" And I was like, "No, of course not. They would never. They don't even acknowledge me as a former student, which, you know, I guess that's fine. I went to Stanford. Yeah.
Vanessa: I am amazed that they only started implementing new policies this year.
Esmé: Oh my gosh. Yeah. My graduation year was going to be 05, 2005 and it's 2023. It is eighteen years later and it took this long.
Vanessa: I wanted to ask also whether or what changed for you after your diagnosis of schizoaffective disorder, which you received in 2013? What was the aspect, I mean, you talked about even your psychiatrist being concerned about the stigma surrounding this. How did you cope with that?
Esmé: So by the time I was diagnosed with schizoaffective disorder, I had already gone through the process of getting big diagnoses before, like I said, depression and anxiety when I was 16 or 17 and bipolar disorder.
So by the time I was diagnosed with schizoaffective disorder, it was more of a relief than anything for me. So in the book, my book, "The Collective Schizophrenias," I say something like, "Some people don't like diagnoses, disagreeably calling them labels and ways of putting us in a box. But I like to know that I'm not pioneering an inexplicable experience," and that's really how I feel about it, is it would be so much scarier to me if I were experiencing something that was never experienced by another human being in the world. But to know that the things that I was experiencing had a name and that other people had it and I could learn more about it, was really actually just a relief. Mostly.
And I may, we may, we can talk about this later, but I am actually in the assessment process for an adult Autism assessment, which is very new for me. I didn't know about this or I didn't suspect this, and nobody mentioned it to me when I was writing "The Collective Schizophrenias." So that process is very, very different from being diagnosed with a mental illness like bipolar disorder or schizoaffective disorder. So psychiatry is still a very nascent field, and all of the diagnoses are basically just things made up by humans. They look at a group of people who have approximately the same symptoms and then they put a label on it. And so there is no kind of etiology, there's no blood tests, there's no brain tests, there's no kind of more biological tests that they can do. So what they do is just talk to you and listen to discuss your symptoms, and then they figure out what condition best matches.
That's until they have that, or even up until you have that, they're really treating the symptoms. So even for years before I was formally diagnosed with schizoaffective disorder, they were still treating me with antipsychotic medications. I just didn't have that formal diagnosis.
Vanessa: So you have actually a sort of a clinician or research lab background which feeds into "The Collective Schizophrenias," which was published in 2019, and is this blend of personal experience with rigorous research and cultural observation. When did the idea of this book come to you? Was this a longer process?
Esmé: It started when I wrote my first essay in the book, which was "Perdition Days." It was an essay that found a home in this defunct website called The Toast. I got $50 for it, and it weirdly became a big hit, just went a little bit viral during its time. So I was then interested in writing more about the experiences that I was going through and just researching things that I didn't know about the schizophrenias. And the more essays I accumulated, the more I was interested in putting a book together. Long story short, my agent at the time was not interested in representing me for this book, and she did not think the book was a good idea. I ended up submitting it to a contest called The Gray Wolf Nonfiction Prize, and they selected it. And that's why it's published is because Gray Wolf, which is a small press here in the United States, picked me out of a contest, otherwise it would not have been published. So that was a very, very fortunate thing. And that really was kind of the beginning of the entire book was writing one essay, finding that people found it interesting, and then just kind of going down this rabbit hole of writing more and more essays about the schizophrenias.
Vanessa: It had an incredible reception. The book, you didn't expect that I assume.
Esmé: No, not at all. It was a New York Times bestseller. When they told me that, I was like, "What? Are you sure?" Cuz this was published by a really small press, like, really small compared to the Big Five or, I don't even know if they're called Big Five anymore, but since there was a merger. Yeah, but with Penguin, Random House, I believe, HarperCollins, it was a small press and I was so surprised. It was a bestseller and it stayed on the list for a few weeks and that was very exciting to me.
Vanessa: And ignited a huge discussion. And for our listeners and viewers, it would be lovely if you could read an excerpt from "The Collective Schizophrenias."
Esmé: So I'm just going to read a tiny, tiny bit from the first essay, which is called "Diagnosis."
Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort and death – all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.
People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe” – not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of being with a schizophrenic “who has seemingly crossed over from the human world to the non-human environment”, because other human catastrophes can bear the weight of human narrative – war, kidnapping, death – but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.
Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is not to be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.
That's just a little bit from the very beginning of the book.
Vanessa: Thank you so much. You touch on this also in your essay. But there is this myth perhaps, especially regarding writers, that mental illness can fuel creativity, can heighten perception, and in this sense that your mental illness is a gift in a way inseparable from your talents. What is your take on this?
Esmé: I personally do not like this narrative. I think it takes away from me as a person and what I have done to become the writer that I am. It also, I think, takes away from the incredible amount of suffering that happens with these mental illnesses. Often a major symptom that has to be there for these to be diagnosed is some kind of impairment to your life or some sensation of suffering. And so schizoaffective disorder has caused a great deal of suffering in my life. And I do not think that for the most part, experiencing that suffering is a good way to be a writer. Like I find that when I'm in the worst of it, I cannot write anything. I did manage to write "Prediction Days" when I was going through it, but I didn't write the whole thing. It was kind of bare bones and it was really a way for myself to get through the experience.
But for the most part, I feel it's more of a hindrance than a bonus. What I will say is that I do think I have received some interesting experiences from having schizoaffective disorder and my various other neurodivergences, but they are not useful in the moment. They're usually only useful if I look back on them and try to make those into some kind of art.
Vanessa: And you said something interesting and I think something rather unique. And I quote, "I believe that living with limitations is something that can exist alongside an ambitious life." I think this is a wonderful quote. And I wanted to ask if this is something you always held, that belief, or is this something that was really hard won in that journey that you went through?
Esmé: Yeah. I mean, this is, yeah, it's a lifelong process. I think I came to that realization when I went through my life because I was first a very ambitious child. I was raised with high expectations, I was raised with high expectations for myself. And so when I was diagnosed with these things and was going through really hard times with my mental health, I didn't know what to do with that ambition that I had because it didn't go away just because I was very sick. So I tried to find ways to live with schizoaffective disorder and the other kind of mental conditions that I have and physical conditions that I have because I have a whole variety of them. Interestingly, I don't like to think of myself as overcoming them because that's something that a lot of places will say if they're writing about me, they'll be like, the headline is, "Esmé Weijun Wang Overcomes Limitations" or something like that.
And I don't think it's really overcoming the limitations. It's more like you're living inside of the limitations. And that's what my business, the Unexpected Shape, is all about. It's all about the unexpected shapes that we encounter in our lives, the boundaries that we have in our lives, and what we make inside of those unexpected shapes.
Vanessa: And given these unexpected shapes. So what does that unexpected shape look like for you? How do you define success when you are chronically ill?
(interview continues below)
Esmé: Oh my gosh, huge question right? That's the million dollar question. It's really interesting because I teach a class called Dream Hunting with Limitations, and in that class, one of the first things that we do is to figure out what is your definition of success?
Because I think a lot of people think about success as something they want to reach without ever actually pinpointing what success means to them. To me, there's a more amorphous definition of success, like I want to be a writer. I want to be a good writer. I want to be a great writer. That's the more amorphous thing. And then I have these definitions of success that are very concrete. Like I would love to receive the MacArthur grant someday, which is this grant here in the United States. And so I think having both the more amorphous definition as well as these more concrete things, which then can often turn into goals which are beneath that, is a helpful way for me at least to think about success.
Vanessa: How does that translate in practice? Like I'm thinking of your career, of how ambitious you have been and have succeeded. How do you go about setting boundaries there in terms of your own expectation and others? You know, you have to do live TV interviews, you have book tours, you have responsibilities vis a vi your publishers. What does it mean in practical terms? Maybe this is more or less about advice.
Esmé: Yeah, so in practical terms, first I have to know what my own limitations are. So for example, my cognition drops significantly as the day goes on. So at around like four or five o'clock, I'll stop being able to think of things that I would have thought of very easily. I'll forget words, forget names. So that is a limitation that I discovered because that has happened to me because of my illnesses or disorders or whatever you want to call them. So then it's my job to notice that limitation and then pass that on to whoever I'm working with. Let them know, hey, if you want me to do something later on in the day, either it needs to be scheduled for earlier or if it has to be later in the day, it can't be something like a speech that I have to give or a talk that I have to give without notes. Like I will need notes. Otherwise, I won't be able to give the talk.
So it's stuff like that where I figure out what my limitations are. Or for example, I need a place to lie down approximately every hour. So if I'm doing a long day of events or book touring, or if I'm at a book festival or something, I will have to ask them. I will need a room to lie down in. And then they generally work to provide that for me. So my agent and I have created this document that we jokingly call my rock star rider, because you know how rock stars have these things like I need to have seven grapefruits and one salad in my room when I arrive, just stuff like that.
But for me, it's stuff like if we're on a campus and I'm going to have to get from place to place on a campus, I need to have a wheelchair. If I am flying internationally, I need to fly business class because I can't remain sitting in one place in a very tight space for quite that long of a time, like a 13-hour flight or 14-hour flight. So there's just things like that that they end up getting addressed because of that rider, which is very helpful. And that way you don't have to repeat yourself all the time. And honestly, for people who are not doing public events all the time and don't feel like they don't have this kind of ability to tell people what their needs are, I do think it's still useful to have a document that has your limitations and needs listed on them and even to give them to the people in your life like your friends and family.
You can just say, "This may sound weird, but I've learned that I have a number of limitations and things that I need in order to best live my life. And would you mind looking at this document and seeing if that would be useful to you?" And usually they'll say yes because they love you. And if they say no, then you may want to reconsider whether or not you want to have them in your life. So that would be the advice that I would give.
Vanessa: And it's also a great thing to become aware of what the limitations are. I mean, that sounds like very useful advice.
Esmé: Yeah. I mean, you have to bump up against them first for a long time before you're like, "Yeah, that's a limitation I have now."
Vanessa: Neurodivergence has become a much-discussed topic in recent years, and as you mentioned, Autism before, that's one of the conditions it encompasses — ADHD, dyslexia, the umbrella is quite vast. However, there seems to be a noticeable absence, at least in Europe, of discussions around schizophrenia and schizoaffective disorder. In this context, why do you think that is, especially after you have ignited this conversation in the US with your book?
Esmé: Well, I am honestly very interested in this question because when I first came upon the term neurodivergence, it was on social media, and I was learning about a lot, but I also was thinking about how a lot of the things apply to me. But I also did not want to use the term neurodivergent to describe myself if it was not my term to use, if that makes sense. So I started investigating: Does neurodivergence include schizophrenia? And I found out that for most people, using that term does include the schizophrenias. Yes, I do think that for a very practical reason, this is not normally thought of under the neurodivergent umbrella simply because it is considered a mental illness that's in the DSM, whereas Autism spectrum disorder and ADHD are considered more — they're not in the DSM, which is the United States kind of Bible of disorders, the Diagnostic and Statistical Manual. So that's one reason, I think, because people tend to think of schizophrenias as a mental illness, which is a separate category, than neurodivergence, which is over here. Yes. So those are a few things that I think make the difference.
Also, I do feel like just the conversation about schizophrenias is still pretty limited in the United States. I do think that my book helped in some way with the stigma regarding that diagnosis. This umbrella of diagnoses that includes schizotypal, personality disorder, schizophrenia, and schizoaffective disorder and a couple of other things. But there's still a huge, huge stigma of these things. My book hopefully helped. I hope it helped in some ways, but I think it's still very scary for people to tell other people that they're living with schizophrenia.
Vanessa: I think your example also helped enormously. I'm sure that people must have reached out to you to say, you know, "Yeah, what an amazing thing to have a role model in this context." And speaking of being a role model, you founded a writing academy for writers with limitations, The Unexpected Shape. What was your intention in starting this project?
Esmé: Yeah, so I actually started teaching classes for people who were living with limitations before I started teaching writing classes. And that was mostly because I didn't think that I had anything to teach about writing.
I thought, well, I just happened to write, and I don't really write nonfiction and all this stuff. So I was teaching classes about restorative journaling while going through difficult times, and I was teaching the dream hunting with limitations class and things. And then I started teaching these writing classes, and I realized that the writing classes that I was teaching about writing personal nonfiction and memoir, which is what the Unexpected Shape Writing Academy is right now, it may expand to fiction writing later, but right now it's about those things.
And my classes were tailored for people who are from marginalized communities who are living with limitations because these are the classes that I needed and can teach. So, for example, most of the classes are one hour long, and that is because I cannot sit for more than an hour. Generally, I need to lie down. It's too much energy to keep myself upright in a chair.
So for me, it's necessary because I can't teach for an extremely long time, and for my students, it's really nice that they're taught online and therefore you can be lying down. You don't have to be on the camera. And then it progressed into, okay, so I'll make recordings of these lessons in these classes and then people can watch them any time they want, and they'll have transcripts, live transcripts. They'll have notes that go with them. I'm trying to make them accessible. People get access to them for six months, so they have a lot of time to go through all of the lessons. But yeah, so there are a lot of reasons I started it, but it did stem from this idea that there are people who are like me out there who are ambitious living with limitations, whatever that means, living with some kind of illness or a neurodivergence, or simply they have kids and they have not a lot of time.
People are living with all kinds of limitations always. It's just the nature of life. And so I felt that as a marginalized writer who is queer and disabled and also Taiwanese-American and things like that, it was really important for me to speak to marginalized communities too because there are so many voices that are not being published. And I really wanted to help students get connections with agents. Hear from editors and learn kind of how to put together a book proposal and things like that that are usually taught in MFA’s. And MFA is can be very expensive. An MFA is a master of fine arts here in the United States. So yeah, that is in a nutshell the reason I started at the Academy.
Vanessa: Talking about the writing academy. I want to ask about the writing academy and who can apply. It sounds like it's very broad. It's not like you have to have a particular type of limitation.
Esmé: No, not at all.
Vanessa: So you can just join and it's international, right? Anybody around the world can join.
Esmé: Yeah. So we have some free resources. I'm creating something called the ten day MFA that's going to be free so people can sign up for that. If they go to my website, they'll be able to find it. They can sign up for my newsletter, which is what I'll announce when it's finished. But I'm currently creating that it’s for students who feel like they weren't able to get an MFA or don't have the time to get an MFA or drop the money to get an MFA.
And basically I'm sharing all of the things I think that I took away from my MFA that were important and I'm just giving it for free in ten a ten-day series of lessons. And then we have these lower-cost options. Are the Academy 101 classes, which are classes that are more foundational or like the one-day writing kickstart for people who haven't written in a long time and they really want to get their writing going, or they just want to start writing or building a writing practice all living with limitations, which I think is very tricky for a lot of people because people are always being told, you have to write every day or you're not a real writer. And I get so angry about that because that's not true for so many people. I used to talk to a lot of women about this particularly, and they especially would be like, I cannot write every day I have childcare responsibilities and I have other responsibilities as a as a woman in this world to take care of.
And I don't have the time necessarily to write every day. So yeah, there there are those foundational classes and then we have, you know, you can take all the, the kind of the writing intensive classes and then there's the even higher level of all inclusive where you get all the things and you know, so we have a number of things available that are really special.
Vanessa: It sounds like a wonderful project and a wonderful, wonderful alternative to to a sort of more traditional MFA where there are no accommodations really, for for writers who have to have to live with these limitations. Iwant to close the interview with a question that you also touch on in a very powerful essay in the Collective Schizophrenias, which is the people who surround those who live with mental illness. And I wanted to ask if you could give to those who want to support their loved ones with schizophrenia and schizoaffective disorder. Some advice.
Esmé: Yeah. So my first. My first thing is I'm speaking directly to you all. You are the people, the loved ones, your you are on a big and important journey as well as the person who is living with the illness. You, I would tell you to read read as much as you can, learn as much as you can about this, because the more you read about it, the more you'll be able to help the person that you're dealing with and living with and loving. So yes, of course, I'm going to recommend my own book. The Collective Schizophrenias, but there are a lot of other books out there. Hidden Valley Road is interesting, even though it's very, very different from mine. That one was Oprah's Book Club pick. There are lots of books out there.I think mine is pretty much one of one of the big memoirs that is about living with it. And Alan Sachs's The Center Cannot Hold is another one. But so just read a lot and then communicate with the person as much as you can.
What do they need? Do they Do they know what they need? Help them figure out what they need.Which can be a very difficult journey. But a fruitful one. And I think and then the last thing that I would try to remember is that this is still a person. This is still a person who loves blueberry pie and hates the sound of crows and loves to watch daytime television or whatever.
Like, this is a person who has desires and likes and dislikes. And it may seem if they're in a psychotic episode or if they have been struggling with the schizophrenias for a very long time and they're very high support, it may seem like they're not there anymore. They're not a real person. And that's something that I address in my book quite a bit, especially in an essay called Toward the Pathology of the Possessed. But they are there, they're a person. Please remember, that.
Vanessa: Esmé, thank much for all your insights and for sharing your experience with us.
Esmé: Thank you for having me.
Vanessa: And that wraps up today's conversation with Esmé Wang. If you'd like to delve deeper into Esmé’s work, follow her on Instagram at @esmewwang. If you're a writer with limitations, check out Esmé’s Writing Academy and her tips and tools for writers at esmewang.com. We'd love to hear your thoughts on this interview DM us @TiimoApp or drop us an email at community@tiimo.dk.
Thanks for tuning in. And see you next time!
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If you or someone you know is dealing with mental health challenges, please remember that you're not alone. Reach out to mental health professionals, support organizations, or crisis helplines for assistance and guidance. Here are some resources to consider:
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