Synesthesia of Distress And Other Stories: A Q&A with Owen Scott Muir

Owen Scott Muir, MD, is a child and adult psychiatrist. He’s been on faculty at Baylor College of Medicine, NYU, and Hofstra-Northwell. He is the co-author of “Adolescent Suicide and Self Injury: Mentalizing Theory and Treatment” (Springer Nature, 2020). He is an accomplished academic and speaker, and has presented keynotes at numerous academic conferences as well as Spotify’s Post Pandemic Homecoming. He was a visiting lecturer teaching architecture students at Pratt School of Design. He is a prolific writer with his daily “health-themed” Substack newsletter, the Frontier Psychiatrists. He is currently the Chief Medical Officer at iRx Reminder LLC and he is a multiple-time founder with two exits.

Awais Aftab, MD, is a clinical assistant professor of psychiatry at Case Western Reserve University. He is interested in conceptual and philosophical issues in psychiatry and is the author of Psychiatry at the Margins.

Owen Scott Muir is a fellow psychiatrist on Substack. This post is part of a mutual Q&A collaboration (see my responses to the questions he posed to me). Dr Muir is a bit different from the usual guests I feature here for Q&As, given the general focus of this publication on conceptual and critical issues. However, his personal experience of Bipolar Disorder and psychiatric treatment, his clinical experience of working with patients with complicated problems poorly accommodated by the system, his dissatisfaction with existing treatments, and his optimism for the widespread utilization of neurostimulation to transform the landscape of psychiatric treatment ensures that readers will find this interview to be of interest. He shares things with a candidness and vulnerability that I admire. My own assessment of the efficacy of treatments such as transcranial magnetic stimulation is more cautious and guarded, nonetheless, I agree that newer protocols such as Stanford Accelerated Intelligent Neuromodulation Therapy (SAINT) are highly promising and need more uptake in clinical practice. Dr Muir describes himself as a physician who works with people who have lost all hope. This comes with seriously humbling experiences. He has lost patients to suicide (heartbreaking), put up with lawsuits (dismissed), outlandish allegations of impropriety (also dismissed), and internet stalkers, which is a lot for any clinician to go through.

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Aftab: What has been your experience with mental illness and psychiatric care?

Muir: The experience has been divided into before and after I became a health professional. I'm also a musician and recording engineer, so I think about listening to music before and after you know Music theory. Listening to music before you write and record music is a different experience — after you hear each part, you hear technique and a lot more mechanism at the same time as you hear the song.

I started receiving psychiatric care at the age of 16 and didn't start medical school until I was 27. After medical training, medical care had a different quality because I was thinking about what the doctor was doing from the perspective of myself as the patient and assessing from the doctor’s perspective.

At this point, I don't separate psychiatric care from medical care in my mind. And as somebody who's had to receive more medical care than I would like — I have psoriatic arthritis, I've had a kidney stone in the last year, I've had a colonoscopy, I've had a tonsillectomy and an appendectomy — I try to be a good patient. I have a lot of respect for doctors. I have a lot of respect for good doctors. It’s a somewhat strange experience to receive psychiatric care while being a psychiatrist yourself.

All of that having been said, remember in my teens and 20s, thinking bipolar disorder was a big, big deal and would be my major problem in life. I also have ADHD, for what it's worth, as well as dyslexia. The shock, for me, is that having other problems like psoriatic arthritis makes it very clear how much of a waste of time worrying about my bipolar disorder was!

I've got a great psychiatrist. He’s seen me for about 25 years now. That longitudinal knowledge of somebody is really valuable. He's seen me over more time points than virtually anybody else in my life other than my mother!

Muir: I've got a great psychiatrist. He’s seen me for about 25 years now. That longitudinal knowledge of somebody is really valuable. He's seen me over more time points than virtually anybody else in my life other than my mother!

I’ve been “psychiatrically hospitalized” as a research subject in my 20s, which was formative. It’s a different experience than being an inpatient, which I later got to do in 2013 because I was depressed enough to need it.

The vast majority of my care has been very good. I try to just do what the doctor says.  I will try most things. Even if I think they're dumb. The road to hell is paved with driving your care plan because you think you know better! I've been pretty lucky with the quality of care I received.

Aftab: How has your personal experience shaped your work as a psychiatrist?

Muir: They’re inseparable. I am, for the most part, an interventional brain medicine doctor — my day-to-day clinical work and research focuses on accelerated transcranial magnetic stimulation and other neuromodulatory techniques that do not involve traditional medication. This became my focus after I got treated with transcranial magnetic stimulation for my bipolar depression. I first received this in 2015. It was remarkably effective, vastly more potent than I had expected from the literature. And the knowledge that things could be so much better, so much more quickly, which was not accessible in literature then, has shaped my career. If I had not gotten TMS, it's hard to imagine that I would be focusing on brain stimulation and intervening directly on the brain. 

Aftab: What frustrates you the most about psychiatry as it is practiced today?

Muir: I'll start with payment models because that’s the root of all evil. You can’t get the outcomes right if you get the incentives wrong. Right now, doctors get paid not for getting and keeping people well but for evaluating and managing patients. It doesn't matter how well you evaluate them. It doesn't matter how well you manage them. It just matters that you do a thing. We don't get paid enough for managing highly complex conditions in the outpatient setting because they are assumed, so to speak, never to exist there. The levels of medical necessity that guide payers pretends that acutely suicidal patients exist only in the inpatient setting. From this, incoherence proceeds apace. We have this strange series of payment models that dictate care for everybody in a direction that I feel is fundamentally misaligned with what would be best for our patients.

I find this endlessly frustrating.

Other areas of associated frustration are words like “prescriber,” reflective of a professional conceptualization that restricts our role to dispensing medications. Physicians are there to develop a comprehensive understanding of clinical problems, an understanding that lends itself to the development of an effective treatment plan. Our jobs are not fundamentally about prescribing. I am of the view that we got sold a bill of goods by industry, predominantly Pharma and the relentless advertising machine built by Arthur Sackler. Even pharma itself has been co-opted by Pharmacy Benefit Managers and “third-party payers” in the US, which has changed the bounds of what we could think about as appropriate care.

Muir: The systems we work in present us with limited options of diagnosis and treatments, and these options frame our thinking and fence it in. We spend too much time choosing between options that are suboptimal. Subsequently, not enough time to challenge how the question is framed and expanding the menu of answers available to us.

The systems we work in present us with limited options of diagnosis and treatments, and these options frame our thinking and fence it in. We spend too much time choosing between options that are suboptimal. Subsequently, not enough time to challenge how the question is framed and expanding the menu of answers available to us. It's a tragic lack of understanding, cognitive bias, and fenced-in expectations, with dreadfully little compassion and empiricism guiding the path forward when people need it the most.

Aftab: What role have online platforms such as Twitter/X, Substack, and LinkedIn played in your career?

Muir: Clubhouse was a big turning point for me — Carlene (MacMillan, M.D., my wife) and I were early on the platform and got a big following. We had 10,000 people night listening till we had to say. It made me realize that with the right online platforms, public health messaging can get out and away; that’s compelling. That promise was not fulfilled on Clubhouse. And it hasn't been fulfilled on any other platform. I think Substack is probably the closest to it right now. LinkedIn is decent, but it’s more business-facing than public health and public-facing. Compelling explanations that consider trust, I think that’s part of the business we’re in. We need to build trust as health professionals, and showing up in the spaces where people are learning their information is part of that. I’ve also been stalked relentlessly on social media, so it’s a source of trauma for me. I recognize it, I recognize the potential, and I would like to see more of the good and less of the bad. And that’s a hard path for anybody, including me.

Aftab: Some people experience mental illness, especially those on the bipolar spectrum, as a double-edged sword. It brings a lot of disruption and disability, but some patients also find it to be a source of creativity and energy with a positive impact. Is that something you can relate to?

Muir: There is little I can imagine relating to more? I have a relationship with whatever bipolar disorder is. It is complicated. I’ve written about it before. I think any common condition when we’re talking about neuropsychiatric illness, exists in the population because those same underlying genetics provide an advantage. It might not be an advantage to the person at the moment, but there is a definite advantage to the gene pool for having some people around who have bipolar disorder. That’s a scientific way of saying we need each other. And we need some people who have big ideas. And sometimes, people who are prone to big ideas can go off the deep end. And then we need to support those people on the way back. Because without them, we don’t have any big ideas. We also need people who support, are even-keeled, and are cautious. It’s that teamwork of humanity that I relate to the most.

I am a generative person. I write a daily healthcare newsletter. Part of the reason I write a daily healthcare newsletter is the stigma of bipolar disorder. I don’t want people to accuse me of being manic all the time. This is not because I don’t have bipolar disorder, but it is because people worrying about my bipolar disorder isn’t a good use of their time or my time. And the easiest way to mitigate that risk is to be as generative as I actually am. I am a generative person whether I am up or a little down, and as long as I’m not too depressed, I get a heck of a lot done at baseline. The problem with that is that, because I’m publicly identified as having bipolar disorder.—this is my fault. I told the world! I didn’t want it to be a secret that could be a weapon against me — that people would assume if I, for example, wrote an intermittent newsletter, where I wrote one thing a week.  And then I wrote one thing a day… that I was hyperverbal and symptomatic. And one of the ways I mitigate against the risk of people getting the wrong idea is, I’m just relentlessly generative. I get out a column every single day. Or a podcast. Or something. That way, it’s something that happens every day, and so people aren’t going to peg my generativity on an underlying neuropsychiatric problem.

Muir: Does bipolar disorder help me understand more of the world than if I didn’t? Yes. It’s not even the extra energy that mania can sometimes provide; it’s the knowledge of what it’s like to be at the whims of an underlying biology. In this regard, I think I have probably learned more from my psoriatic arthritis than I have from my bipolar disorder.

But does bipolar disorder help me understand more of the world than if I didn’t? Yes. It’s not even the extra energy that mania can sometimes provide; it’s the knowledge of what it’s like to be at the whims of an underlying biology. In this regard, I think I have probably learned more from my psoriatic arthritis than I have from my bipolar disorder. With psoriatic arthritis, which is an auto-immune condition, some days, my joints work, and some days they don’t. Some days, I can get up the stairs, and some days, I’m profoundly disabled and can’t. It’s surprising not to be able to walk down the street. I am intermittently disabled. I’ve had uveitis, a condition where your vision blurs from inflammation of the front of your eye. Someday, I’ll be a little bit blind. Some days, I’m not. Some days, my knees work. Some days, my hips give out. Similarly, with my mood, there are days when it's low, and there are days when I'm more irritable. More up. And that's mania. I’m always a little amused. When people are worried that someone identified with bipolar disorder. “might be manic.” They’ll say it exactly like that: “I’m worried you might be manic.”  This makes sense because plenty of people are defensive about their symptoms of mania, especially if they lose insight as one of those symptoms, and nobody wants to get in a fight about whether somebody else is having a neuropsychiatric problem. But we don’t say things like “I’m worried you might have psoriasis” to someone who has obvious psoriasis all over their body. We don’t worry about someone’s arthritis when they can’t walk down the street. We acknowledge it. Oh my gosh, your arthritis is getting in the way of your walking today. What can we do to help?

I’m not trying to romanticize bipolar disorder; most of the time, it’s miserable. Sometimes, it allows you to experience things that help you understand the world better. It is a connection to the cycles of the earth that has allowed me to suffer in ways that give me tremendous insight into the suffering of others. The onion, I think, sticks the landing on this better than any psychiatric textbook: “Manic-Depressive Friend A Blast While Manic.”

The stigma about it is the only part I dislike. The rest of it’s tolerable. I’ve been lucky in that I’ve gotten great treatment, and my physicians have been overwhelmingly good. I don’t have a particularly nasty or pernicious course of the illness, although it turns out I’m refractory to traditional treatments. I’ve gotten to try everything. Transcranial and magnetic stimulation, along with treatment of my underlying autoimmune condition, have been a remarkable combination to keep me well.

I don’t consider bipolar disorder to be my biggest health problem because I have PTSD, I have psoriatic arthritis, and I’ve had a bunch of other this and that. It’s a pain in the ass to have health problems. But getting to experience those health problems firsthand has made me a better physician, so I’m pretty lucky — the things that suck for me also make me better at the thing I’m able to do for the world.

Aftab: What aspects of psychiatric problems did you find to be the most challenging?

Muir: It wasn’t until I had a pretty, crucial realization that I was able to understand enough to feel like I could drop my judgment about the problems other people were having. The crucial piece, for me, was realizing that there is a process similar to synesthesia in the distress of people with neuropsychiatric illness. In synesthesia, we have a condition where somebody can experience a sound as a color or a color as a sound. It’s a crossing of sensory perception. And we accept that this exists. My ability to understand the distress of somebody else, as real, and genuine, is built on an underlying hypothesis. I think there is such a thing as a synesthesia of distress. That some people have a cross wiring of things that most of us wouldn’t experience as distressing. But for them, say, banana bread (I’m rolling with the first thing that came to my mind! You can substitute with your preferred example) could be the most distressing thing you could imagine. And it’s not up to us to judge whether banana bread should be distressing. Only, it is incumbent on us to recognize, that, for someone else, banana bread could actually be as distressing as the most distressing thing we could imagine. Once you get past judging the thing someone is distressed by, and you focus on the quality of the distress, you can make some progress because you stop being so judgmental. When I got there and realized that everyone’s story of their own experience makes sense to them, I made a lot more progress as a psychiatrist. I stopped judging people's experience as valid or invalid and just assumed it was valid to them. And that has made all the difference.

Aftab: Given that you inhabit these dual roles of patient and physician, have you noticed any differences in what you value and prioritize as a patient vs what you value and prioritize as a clinician? (Just as an example, sometimes clinicians can be more focused on symptom control and relapse prevention while patients can be more focused on preserving day to day functioning, even if that means living with some degree of active symptoms)

Muir: I try to be a good patient. I don’t run my own show. I know a lot of doctors in patient roles have a really hard time with that. But for me, I’ve seen the road to hell is paved with great ideas for what you should do for yourself, and so I try not to be my own doctor to the degree possible. In all fairness, I have a doctor, who’s great, and I’m married to a doctor, who is great, and I’m pretty observant, and so I try to bring those observations to my team, to my therapist, to my physician, to my many physicians, across multiple disciplines. I come in, with as much humility, as I can muster, and say, help, and say yes to the treatment plan, my doctor comes up with, and if it doesn’t work, I tell him that too, and I trust him to not keep doing things that are dumb.

My psychiatrist has been my psychiatrist for over 20 years. So he’s got a really long longitudinal view of me, longer than almost anybody else in my life, other than my immediate family, and very close friends from childhood. And that is one of the things that people need to understand is valuable. The long-term relationship that anybody has with a physician, when they have a long-term, lifelong, waxing and waning condition like bipolar disorder, it’s that knowledge of you over time that is valuable. So when my doctor sees me, he’s got a lot of different time points in my life to compare them to. And that is invaluable in his decision-making. Which, of course, supports my life quite nicely.

Again, it’s not my psychiatric illness that causes the most problems in my day; that has been, relatively speaking, not much of a problem for a while now. I am extremely cautious with my symptoms because I have a medical license that requires my judgment to be intact if I’m going to take care of other people. And so I very actively manage to keep my doctor very informed of everything that’s going on with me. On a day-to-day basis, the most crappy part is the auto-immune stuff.  When I was younger, I had this catastrophizing that a lot of people with mood disorders do about, “Oh my God, what am I going to do?” … “What if I get depressed again?” That seems quaint now. Depression is bad. But I have twin children, and both of them have had neurosurgery. Both of them are OK. There is just no experience of bipolar disorder that is anywhere near as terrifying or awful for me as worrying about your own child's health. Or your inability to walk because of an inflammatory condition.

Muir: There is just no experience of bipolar disorder that is anywhere near as terrifying or awful for me as worrying about your own child's health. Or your inability to walk because of an inflammatory condition.

Aftab: At the depths of your despair, what kept you going?

Muir: My wife. That’s an easy answer. Carlene MacMillan is a saint who loves me. I am alive and well because of her faith in me and her ability to say sensible things and understand when I need them the most. I had a period with a depressed episode in 2014, before I got TMS for the first time, where I had symptoms that I knew were psychotic. I had a preoccupation that I was dying from a medical condition. When I finally got around to telling Carlene that this was going on, she was able to address it very calmly. She knew being calm was the right answer because that’s what she does. If a plane was on fire, and she was the pilot, that plane would be landed with a calm announcement about the plane being on fire.

Aftab: At the height of your mania, what kept you grounded?

Muir: I’ve been lucky that my mania has not robbed me of insight for the most part. I can usually tell. And I’ve never had florid, psychotic mania.  I have been irritable enough that it’s been problematic and required treatment. But being able to look at what’s happening in real-time and notice that you are irritable, and that’s probably mania, and you should probably do something about it! I’ve been lucky that the insight has remained intact. I remember writing an email to my program Director and Residency training that was about eight pages long—I’m glad I didn’t send it! I had been on medical leave for a depressive episode. I couldn’t tell what was wrong with it on the day I wrote the email. It was too long. Why was I going on and on?  It bugged me.  The next day, I just pulled out the YMRS.  And I went through it, about myself. Yes, I was singing while walking down the street. That rates as an eight on the “pressure speech” item. It turns out that I have made some abrupt decisions…. I had been more irritable. I have been more sarcastic. I just walked through the elements of a rating scale with good anchor points. And I had a 26. Which meant I had mania. Which is why I was still out on medical leave in the first place.  I guess the answer is “science” and “the love and support of the people in my life who are awesome, like my wife.”

Aftab: You mentioned trauma from being stalked relentlessly. Can you say more about the context?

Muir: I’ve been stalked for years, and I do have some intrusive experiences and some pervasive negative ideas about the world. I have lived through a lot. I lost a patient to suicide, my dad two months later, and my sister died three weeks after that. Then, I had other losses, friends, and family, and even patients under the care of people I worked with because the work I do is with highly suicidal people. To be stalked by the parent of a patient who died by suicide, with a lawsuit for medical malpractice, which was subsequently dismissed with prejudice, and now going through the process of a meaningless appeal, all of that is very frustrating. I have an active defamation lawsuit against that person who is stalking me, and honestly, it’s bad. It’s stressful to have somebody out to get you.

I have been accused of some pretty horrific things online and none of these things are true. And it doesn’t matter that they’re not true because it blew up a lot of opportunities and continues to do so today. It has caused tremendous damage in my life. I remember when New York Post published an article about it. I had a very vulnerable patient who I was treating with transcranial magnetic stimulation for free. The person was trans and worked in a marginalized job. Unfortunately, this individual couldn’t bring themselves to continue treatment with someone who had been accused of the things that I had been accused of by my stalker. The fact that this whole situation had deprived a vulnerable person of the care they needed was devastating to me. It continues to be devastating to this day. I’m a decent doctor, but I do a hell of lot less clinical work on account of this trauma than I would otherwise. I don’t take the same risks that I might otherwise to help patients in distress because I’m scared. Because I’ve learned to be scared. I’ve learned to avoid cases that are likely to have difficult outcomes. Because frankly, I can’t go through this again. I still take difficult cases, but I don’t take that many of them. And given the tens of thousands of hours of experience I have done this job, that’s probably a loss for more people than just me.

Muir: To be stalked by the parent of a patient who died by suicide, it is very frustrating. I’m a decent doctor, but I do a hell of lot less clinical work on account of this trauma than I would otherwise. I don’t take the same risks that I might otherwise to help patients in distress because I’m scared. Because I’ve learned to be scared. I’ve learned to avoid cases that are likely to have difficult outcomes.

Aftab: Ozempic… you’ve been open about the fact that you’ve used it for diabetes and weight gain. Do you think psychiatrists should become familiar with using Ozempic and related medications?

Muir: I believe GLP-1 drugs will become part of the mainstay of the psychiatrist toolkit. we have been tasked for years with managing the weight gain from our oral medication’s, and have done so with limited aplomb.

Aftab: You are of the view that psychopharmacology has over-promised and underdelivered. How do you think neurostimulation can avoid the same mistakes?

Muir: The standards we hold our clinical inquiry to matter. The ethics with which we conduct our research matter. I think good study, design, large posts, marketing data, carefully categorizing risks and benefits, and not accepting small effects of interventions as good enough is really important. We worshiped at the altar of 50% symptom improvement, and we got the gods we prayed to. We must strive for better outcomes and take our patients’ suffering seriously. Part of that is being honest about our history, and part is being serious about measurement. And the biggest part is listening to what our patients say and believing that their experiences contain truths to which we must listen.

Muir: We worshiped at the altar of 50% symptom improvement, and we got the gods we prayed to.

Aftab: Have you ever felt “pathologized” from having a psychiatric diagnosis or receiving treatment?

Muir: There is plenty of sigma in being unwell, whether a psychiatrist makes a diagnosis or not. There is even more difficulty from suffering and not having a name for it, or a correct name for it. The anti-psychiatry criticism of “pathologizing” is the kind of ablest nonsense that ignores that there's actual pathology causing people pain and suffering that is independent of any attempts to categorize it. The suffering is there, there can be varying degrees of compassion and accuracy in how it is categorized, but I don't know that I’ve ever had anybody get angry with me for making a diagnosis appropriately, at least in my career as an attending.

Aftab: You were a co-author on 2 recent publications reporting post-marketing data pertaining to clinical outcomes with deep TMS and accelerated deep TMS, showing impressive remission rates and durability of response. Many clinicians, patients, and folks in the industry would find these results reassuring. There are, however, more skeptically-minded folks who see such post-marketing data as little more than a product of placebo, expectation, cherry picking, clinician bias, etc. etc. and nothing less than an adequately powered, perfectly blinded, sham controlled, randomized trial would be acceptable to them as evidence. What do you make of this, that we seem to live in two different cultures with wildly different acceptable thresholds of what constitutes acceptable evidence?

Muir: Well, as the author of those papers there’s some bias here. I’m not the lead author, not of most of them. A few. However, the large data sets are not just my data. And I’m skeptical of some of the analyses.  It’s really nice to think we can have large, controlled studies of large effective interventions, but we confront an ethical limit when available data from relatively smaller RCTs shows clearly efficacy. To give you an example, the randomized control trial of fMRI guided SAINT was halted at an interim analysis by the institutional review board because it showed a large effect size and it would’ve been unethical to continue withholding this highly effective treatment from suffering people. Research has a trade-off, and you can’t do huge, blinded trials compared to sham or placebo in things that work remarkably well. You have to develop other study designs to answer those questions. My argument is that collecting extremely thorough data about every patient is a better answer than only ever collecting thorough data about patients via research trials. 

At the same time as we’ve seen increasing placebo response rates in well-controlled drug trials, we’re also seeing increasing placebo response rates in some well-controlled brain stimulation studies. However, in the most challenging to compare treatments, like SAINT/SNT, we’re doing a better job of enrolling patients who are unlikely to respond to placebo. This means those studies show bigger differences because we did a better job of enrolling patients who can demonstrate a difference. In the SNT pivotal trial, the subjects were guessing group assignment at about 50/50.

I also advocate for within-subjects design and mirror image studies, which are hard to do and take more time. I had John Kane as a research mentor, who brought clozapine to America and has done a remarkable amount of work around long, acting injectable antipsychotics in schizophrenia, another condition with a low rate of placebo response. He, quite powerfully, argues that not every condition is best assessed in a double-blind, randomized control trial. Some conditions are better assessed by looking at one person over time and changing when they get the intervention so they can serve as their own control. With a smaller sample size, you get more statistical power and minimize variables this way. This is one of the ways of getting good blinding within a subject without having the same problem of comparing one person to another.

Aftab: What makes you hopeful about the future of psychiatry?

Muir: Brain stimulation treatment is remarkably effective. Psychotherapy is remarkably effective. AI is here and guiding treatment right now. There are large effect-size interventions that are more potent than anything we’ve had access to before! They offer us hope; they expand what we can imagine for ourselves, our families, and our patients. And I hope the fact that a big change is possible pushes us down the road towards better outcomes for everybody, with less harm, less stigma, less hopelessness, less death, less despair, and less suicide. The FDA approval of SAINT neuromodulation is a huge deal. The FDA approval of the PRISM system for PTSD is a huge deal. The FDA approval of the Nightware device is a huge deal. All of these treatments, and so many more, like the monarch eTNS device, are remarkably more potent and safer than anything we've had before. I see a hypothetical and neuro-modulated future where suffering is effectively alleviated. But this changes expectations and payment models, and we're going to need to keep up with it, and we’re not prepared to do that yet. I’m hopeful that the future can be better. I'm frustrated because we are not there yet.

Aftab: Thank you!

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See also:

An Interview with Awais Aftab, M.D of Psychiatry at the Margins

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