Thanks for this wonderful piece. It is interesting how similar psychosis is to the structural dissociation I have, though, of course, also different. The difficulty finding someone who can understand and help is similar. “Psychotherapists specializing in psychosis were hard to come by, and without a trained clinician addressing these issues, metacognitive insight was difficult for me to acquire.” It may be that even fewer clinicians know how to work with dissociation. At least clinicians believe in psychosis; many don’t believe in dissociation.
In particular, this: “schizophrenia is a distinct loss and breakdown of the self. One of those potential losses is the ability to have a narrative that aligns with reality. One could argue that to restore sanity, one would need to bring back that ability to self-narrate in a way that also matches up to others’ observations”
Dissociative amnesia is also a breakage of the self. Without memories of critical events of my past, and continuing to dissociate/forget as an adult, I was unable to form “a narrative that aligns with reality.” And my recovery has required building a self-narrative that aligns with what happened to me, and who people really are, and who I am and might be.
Also, thanks for sharing the insights on movement; I will try them out.
Soon after I started reading this I thought "oh it's another one of THOSE, supremely privileged people from highly educated and very affluent backgrounds making pronouncements that have no relationship to the situation of the vast majority of humans struggling with mental illness, especially psychosis". But I kept reading, and found an interesting, informative and self and society aware account, and was reminded of a need for open approach to others' accounts and withholding judgement. Ok, fencing coach almost threw me off that path of humility, but only briefly. Thank you for this text.
As to the main point (not a psychiatrist) I think working on the metacognition level is important and can be helpful with all care and recovery, physical and mental, because humans are creatures of meaning; even if it might be more challenging in psychosis.
[I'm not sure of I have any followers interested in those topics here, but highly recommended a read]
Hi, author (Sarah) here. I laughed, appreciating at your comment. I admittedly can be very privileged but I try to listen to people of all backgrounds, keeping in mind that we do come with our own biases. It's comments like yours that keep us grounded and aware of our perspectives! Thanks for reading, and I'm really glad you got something out of it.
Thank you for sharing this. It seems to me that the single most important step to recovery is the notion that it is possible and I think thats a big part of what society in general really struggles with
Wonderful insight into your journey, thanks so much for sharing. A couple points stood out, one was that in adolescence, you had PTSD. The role of psychological injuries in contributing to psychosis needs to be acknowledged, rather than the dominant biomedical paradigm. Another crucial point is that "I felt heard and understood by my psychiatrist." The therapeutic alliance is so powerful in healing, yet it is very rarely measured and discussed between treatment provider and client. If this practice was seen as standard of care, then outcomes would improved markedly.
Just started listening to this. So much to love here. Thank you. I have had a family member suffer. It is terrible to witness when you cannot help. And there is so much stigma out there.
I’d recommend Lauren of the YouTube channel “Living Well With Schizophrenia”. I believe she also has schizoaffective disorder. She shares her real life experiences to raise awareness. She recently started to post discussions with researchers and other voices in psychology particularly discussing lived experience.
Hi, Sarah. Idk if you’ll see this—I’m just now reading this piece because Dr. Aftab has collected the personal accounts together in one post. Would you feel comfortable sharing the name of the clinic where you found holistic treatment? I’d love to learn more about it.
My twitter is under construction atm and im focusing on new york literary and arts, so for professional related inquiries on psychology please go to my LinkedIn or Bluesky! You can find me on X too but I might be more cranky lol
Thanks so much for your piece! I had psychosis during the first year of my PhD in behavioral neuroscience (I was also 23). Understanding the science of it while also experiencing my own brain changing its state further pushed my mind to the brink. It is indeed a long road to recovery. It’s been 5 years for me, no idea how I was able to finish my degree in the interim. We are such beautiful testaments to the resilience of human mind.
Anyway! I am wanting to write about my experiences too, I would love to chat with you more and/collaborate :)
Completely delighted to find another person writing about severe mental illness on Substack. I can also recommend Mat’s Blog on Schizoaffective Disorder, the Manic Messiah by Erick Wales, and Practicing Mental Illness by George Hofmann.
Thanks for this wonderful piece. It is interesting how similar psychosis is to the structural dissociation I have, though, of course, also different. The difficulty finding someone who can understand and help is similar. “Psychotherapists specializing in psychosis were hard to come by, and without a trained clinician addressing these issues, metacognitive insight was difficult for me to acquire.” It may be that even fewer clinicians know how to work with dissociation. At least clinicians believe in psychosis; many don’t believe in dissociation.
In particular, this: “schizophrenia is a distinct loss and breakdown of the self. One of those potential losses is the ability to have a narrative that aligns with reality. One could argue that to restore sanity, one would need to bring back that ability to self-narrate in a way that also matches up to others’ observations”
Dissociative amnesia is also a breakage of the self. Without memories of critical events of my past, and continuing to dissociate/forget as an adult, I was unable to form “a narrative that aligns with reality.” And my recovery has required building a self-narrative that aligns with what happened to me, and who people really are, and who I am and might be.
Also, thanks for sharing the insights on movement; I will try them out.
Soon after I started reading this I thought "oh it's another one of THOSE, supremely privileged people from highly educated and very affluent backgrounds making pronouncements that have no relationship to the situation of the vast majority of humans struggling with mental illness, especially psychosis". But I kept reading, and found an interesting, informative and self and society aware account, and was reminded of a need for open approach to others' accounts and withholding judgement. Ok, fencing coach almost threw me off that path of humility, but only briefly. Thank you for this text.
As to the main point (not a psychiatrist) I think working on the metacognition level is important and can be helpful with all care and recovery, physical and mental, because humans are creatures of meaning; even if it might be more challenging in psychosis.
[I'm not sure of I have any followers interested in those topics here, but highly recommended a read]
Hi, author (Sarah) here. I laughed, appreciating at your comment. I admittedly can be very privileged but I try to listen to people of all backgrounds, keeping in mind that we do come with our own biases. It's comments like yours that keep us grounded and aware of our perspectives! Thanks for reading, and I'm really glad you got something out of it.
Thank you for sharing this. It seems to me that the single most important step to recovery is the notion that it is possible and I think thats a big part of what society in general really struggles with
Enjoyed this post. A patient with agency. Provides context to our long-form conversation around lived experience for me.
Loved your article collab!! Thanks for reading!
Thank you. I felt there was a great need for this conversation. I am sure you probably understand why given my views. Please feel free to restack!
Wonderful insight into your journey, thanks so much for sharing. A couple points stood out, one was that in adolescence, you had PTSD. The role of psychological injuries in contributing to psychosis needs to be acknowledged, rather than the dominant biomedical paradigm. Another crucial point is that "I felt heard and understood by my psychiatrist." The therapeutic alliance is so powerful in healing, yet it is very rarely measured and discussed between treatment provider and client. If this practice was seen as standard of care, then outcomes would improved markedly.
Just started listening to this. So much to love here. Thank you. I have had a family member suffer. It is terrible to witness when you cannot help. And there is so much stigma out there.
Just. Love. This.
Schizoaffective is what my family member had as well. It was always super confusing what was different b/n the two.
Thank you for sharing your insights! I'm curious what first person narratives dealing with psychosis you would recommend.
There aren't many out there! The two most popular ones are The Center Cannot Hold by Elyn Saks and The Collected Schizophrenias by Esmé Weijun Wang.
I’d recommend Lauren of the YouTube channel “Living Well With Schizophrenia”. I believe she also has schizoaffective disorder. She shares her real life experiences to raise awareness. She recently started to post discussions with researchers and other voices in psychology particularly discussing lived experience.
Great... thank you!
Have a look at my comment below to see people who are writing about psychosis on this platform.
this is a very powerful testimony, thank you for sharing it
What a great read, thanks for sharing.
Hi, Sarah. Idk if you’ll see this—I’m just now reading this piece because Dr. Aftab has collected the personal accounts together in one post. Would you feel comfortable sharing the name of the clinic where you found holistic treatment? I’d love to learn more about it.
You can also reach out to Sarah on X/Twitter too: @sarahanmy.
My twitter is under construction atm and im focusing on new york literary and arts, so for professional related inquiries on psychology please go to my LinkedIn or Bluesky! You can find me on X too but I might be more cranky lol
Linkedin.com/in/sarahanmyers
Sarahanmy.bsky.social
Hi! Sorry im late to reading this. The clinic i went to was called Palm Health, located in Ladue, St. Louis, Missouri.
Thanks so much for your piece! I had psychosis during the first year of my PhD in behavioral neuroscience (I was also 23). Understanding the science of it while also experiencing my own brain changing its state further pushed my mind to the brink. It is indeed a long road to recovery. It’s been 5 years for me, no idea how I was able to finish my degree in the interim. We are such beautiful testaments to the resilience of human mind.
Anyway! I am wanting to write about my experiences too, I would love to chat with you more and/collaborate :)
Hi Madison, so sorry I didn't see this sooner. It would be great to connect. I've sent a request via LinkedIn
Completely delighted to find another person writing about severe mental illness on Substack. I can also recommend Mat’s Blog on Schizoaffective Disorder, the Manic Messiah by Erick Wales, and Practicing Mental Illness by George Hofmann.