Unmeasured Minds
A guest post on the neglect of suffering and its clinical cost
Alex Mendelsohn is a physicist and psychiatric patient based in the UK. He has been diagnosed with 9 different psychiatric conditions over the years, including depression, bipolar disorder and anxiety disorder, after suffering a strange and rare case of serotonin syndrome due to a low-dose antidepressant ten years ago. He has previously written about his experience of the mental health system in an article for Physics World, and he wrote the article “Lithium story: eight guidelines, eight recommendations” for the Lancet Psychiatry, and in a 2025 article for Bipolar Disorders, Alex Mendelsohn proposed a new notation for reporting serum lithium levels that focuses on time post-dose and dosing regimen. He writes on his Substack, The Psychiatric Multiverse.
Similar to the overview effect experienced by astronauts who view the earth from space and subsequently cannot see our planet the same way again, the experience of mental illness has irreversibly shifted my perspective of what it means to be human. An astronaut’s insight is publicly viewed as valuable. Generally, the opposite is true for the mentally ill. Nearly every time I speak of my condition, it’s not a flurry of curious questions that greets me, but an uncomfortable silence.
I became fully aware of my perceived worthlessness while clinging to life at the end of 2019. Four years of wrestling with the eternal flame of an undiagnosed severe mental illness1, triggered by an extreme adverse reaction to the antidepressant sertraline, had resulted not in triumph, but a heap of debilitation. When I looked out into the world, I did not see the delicate beauty of a flower in bloom, nor the melancholic murmur of an afternoon downpour. I saw only death. On the worst days, I was curled up in a corner, too terrified to move, until the fear reduced enough to climb into bed and stare at the ceiling.
To make sense of the persistent loop of fear that was permanently occupying my inner brain, my imagination conjured up life and death scenarios for every circumstance I wandered into. An empty road would be enough for me to visualize a fictitious car ramming straight into my midriff. To be clear, I did not hallucinate these realities—they remained within the confines of my imagination. It did not mean they felt any less real. From the point of view of my emotional brain, I had been hit by that car. My inner brain was rapidly making, then reinforcing, fear associations with every object around me. I reached out to my local mental health center for help. They prescribed me the atypical antidepressant mirtazapine.
Two weeks into taking the medication, it was clear mirtazapine was not having any effect other than restful sleep. I continued to take the antidepressant for six further weeks because, according to my GP, eight weeks was the generally accepted length of time for a failed trial of an antidepressant.
I had originally wanted to take bupropion, one of the few antidepressants that don’t directly act on serotonin pathways in the brain. My psychiatrist told me that because it is not licensed for anxiety or depression in the UK, I required two failed trials of an antidepressant before it could be prescribed (it is available in the US and many other countries as a first-line antidepressant). Before mirtazapine, I had only one failed trial on my figurative mental illness curriculum vitae: the antidepressant venlafaxine. My severe reaction to sertraline didn’t count. I was only on it for four days. Fifty-two short of a failed trial.
By the time I asked my GP to refer me to the mental health treatment center to discuss bupropion, I was in so much mental pain I spent evenings scuttling back and forth between the living room and the kitchen. Every lap I would look towards the red flicker of the oven clock’s rightmost LED digit, hoping it would change to the next number. It signified I was a minute closer to the unsatisfying relief of deep sleep.
On a Sunday afternoon, I received an unexpected call from a Community Psychiatric Nurse at my local mental health center.
Instead of a referral, the nurse offered me two options: continue with the mirtazapine, or switch to an antipsychotic. Quoting from the report made about our conversation, I stated that I feared tardive dyskinesia, a rare but potentially permanent side effect that can cause uncontrolled jerking or slow writhing movements. In severe cases it can be debilitating. The nurse explained to me that “all medications [have a] potential for adverse effects.”
An inquiry about bupropion and a referral to a center in Northampton for repetitive Transcranial Magnetic Stimulation treatment were both denied. I stated that I felt like my “options are being taken away.”
The nurse expressed in the report that they “discussed, at length, with [Alex] that no medication is going to be able to resolve all of his concerns re anxiety.” Stating later on, “He is aware that he is very focussed upon trialling medications that he feels may help. He catastrophises when he meets with a challenge that medication is not the sole answer” [sic].
The lowest point of my life, when I was closest to suicide, was after that phone call. I immediately collapsed into tears at the bottom of the stairs. The ones I had been going up and down throughout my entire life. It felt like the problem was not that I needed help, it was that I wasn’t trying hard enough to get better. This was despite the fact I had done everything my previous clinicians had asked of me. In the four years after my severe reaction to sertraline: I stopped drinking, ate healthily, exercised daily, meditated hourly and attended over 250 counseling sessions. Other than medication, there was nothing left to try.
The abandonment by the Community Nurse was the culmination of multiple abandonments throughout my psychiatric treatment. My severe reaction to an antidepressant was an exceedingly rare presentation of serotonin syndrome resulting in chronic and devastating psychiatric symptoms. Rather than take an interest in my case, psychiatrists time and time again left me to my own devices. I felt like an outlier, a statistical fluke to be ignored. In the eyes of my psychiatrists, rare translated to never.
I could only see a lifetime of challenges ahead of me. I did not know how I was going to find a clinician willing to prescribe treatments that had a good chance of working. But even if I did, and I found a remedy, I still had to reintegrate myself into a society full of stigma and misunderstanding about the nature of mental illness. Those with mental illnesses with a strong neurobiological basis are all too often put into the category of mental health problems that are reactions to stressful life circumstances. Clinicians and support staff have frequently tried to suggest my disease was “manageable.” Prominent sources of guidance often tell sufferers to “cope” with their condition. Abundant magazines and blogs chronicle tales of people “focusing on” or “overcoming” their mental health problem. The messaging I received made it seem like severe mental illness did not exist. It made me feel worthless.
The antipathy I experienced relating to my severe mental illness was in contrast to the fondness I felt towards extreme phenomena in experimental physics. I understood the importance of weird and exotic systems. It is here where the laws of physics are the most obvious to see—where the signal-to-noise ratio (SNR) is greatest.
There are at least two methods that physicists use to obtain a high SNR. The first is through the active generation of many extreme events. Supercolliders, like the Large Hadron Collider, utilize this technique by crashing together bunches of highly accelerated particles. Detectors are placed at the collision sites to pick up the byproducts.
The second way to achieve a high SNR involves the passive collection of signals. Naturally weak signals are collected using extremely sensitive experimental instruments placed in well-controlled conditions. This significantly reduces the background noise. An example here would be interferometers like LIGO that can measure very slight fluctuations in a gravitational field.
In my lowest of lows, I could no longer ignore the divide between the perceived worthlessness of severe mental illness and the value of extreme events in physics. We marvel at the beauty of a nebula born from the death of a collapsing star, are humbled by the mind-bending strangeness of quantum systems, and are enraptured by the mysterious nature of dark energy. As well as providing meaning to countless lives, the pursuit of understanding these phenomena has led to the technological age we all benefit from. In contrast, as a severely mentally ill person, I was solely an aberration to correct. No one saw me as a living embodiment of the cosmic wonders that have captured so many imaginations.
In the absence of sensitive measurement instruments, and the clear moral implications of creating extreme neurological phenomena within a human being, I realized that people already in an extreme neurological state should be seen as highly valuable. What was severe mental illness, I wondered, if not an extreme phenomenon?
Those who experience the most severe presentations should provide the greatest chance of finding signals that lead to determining the biological causes on the biopsychosocial spectrum. Moreover, these towering signals within our tortured yet wondrous inner universes could mark the beginning of a broader understanding of mind and brain. To put it another way, if you want to figure out why the wind blows, you start with hurricanes.
My state of depression transformed into agitation. I rose from my slumped posture and began pacing purposefully along a corridor within my home. Why, I wondered, was my brain not seen as worthy of measurement? An opportunity to examine a rare and extreme case of generalized anxiety was missed. All the clinicians I had seen, like the one on the end of the aforementioned phone call, were unable to deduce the severity of my disease. When I had tried to ask my clinicians if they could take any kind of dynamic physical measurement, fMRI, EEG, MEG to name a few, they told me that even if they took a scan, they would not be able to interpret it due to its complexity.
Tired from a half-hour of furious thought, I finally sat down, and pondered an unlikely future. “What would I say if I made it back to the land of the healthy?” I asked myself.
As the days and months clawed their way forward, as the struggle to stay alive continued, my thoughts found their edges.
While the brains of those with severe mental illness contain numerous malfunctioning parts, they also likely contain unique adaptations to those very malfunctions. The chaotic nature of our symptoms allows us to empathize with almost anyone who has lost some degree of control in their lives. Our stories of perseverance are a source of comfort for those facing problems that may feel insurmountable. The insights and strategies we used to get through the long periods of emotional distress would be useful for navigation of the stressors we all face in life. I believed that if I could find my way back to remission, my experiences would be of great value to the mentally healthy.
The severely mentally ill have the potential to be the great equalizers in psychotherapeutic and psychiatric debate. We understand the rudimentary nature of every part of the mental health system. It is likely we have trialed multiple modalities of psychotherapy and psychiatric medications from different classes, have received multiple different diagnoses, and still come out sick. Many of us therefore understand that there is no world where either psychotherapy or psychiatric treatment can solely dominate in the treatment of mental illness. While environmental factors are crucial for our recovery, and can strongly influence our mood and behavior, there are some things the outside world cannot touch. Places the compassionate hand of a psychotherapist cannot reach. In the same vein, while psychotropics have the potential to loosen the interminable bonds of severe symptomatology, they cannot influence the shapeshifting effects of unhealthy relationships and social structures. I knew that if I was lucky enough to fall into the treatment that finally helped, I could write articles and research papers, grounded by the failure of countless interventions.
The extremes of emotion the severely mentally ill experience are very difficult to contain. When we try, it causes us an extraordinary amount of anguish, on top of our already painful existence. Usually, we still try. Usually, we fail. In my interactions with clinicians, I paid the price required to contain my emotions. I felt like a number. I felt like almost none of the clinicians cared whether I lived or died. But I understood the game. Be compliant, do not contradict, ask questions you already know the answers to, and you will eventually get the treatment you need.
What I would have given for an honest conversation with a psychiatrist. What I would have given for my input to be valued. Perhaps the hours, sometimes days, of excess suffering after almost every clinician interaction might have been averted. Empathy given to the severely mentally ill in our time of need is empathy returned if a beneficial treatment is found. There is nothing more valuable to a psychiatrist than a past patient advocating for the care they received.
An unlikely future became an exhausting present. I fought the psychiatric system for a year before I was finally prescribed bupropion, the first treatment to significantly improve the symptoms of my depression. A further year later, I was prescribed pregabalin, the first treatment that significantly reduced my generalized anxiety symptoms.
When I became well enough, I started to engage with the academic side of psychiatry. Here I saw light at the end of the tunnel. As part of a lived experience advisory panel, I saw how psychiatric researchers are valuing people with previous experience of mental illness. From equality and inclusivity to data analysis, researchers understood the importance of lived experience input. Patient and public involvement is growing. Nevertheless, there is much more work to be done. For instance, to my knowledge, there is no way for a patient to suggest a research topic to psychiatric researchers and funding agencies. Patients are included in the process only after it has been decided by researchers.
I managed to find a path to recovery. But there are many severely ill psychiatric patients who have yet to find their path. They have neither a voice nor a language. To speak, they require advocation for a psychiatric system that has the patience to listen and understand their suffering. Only then can they make an informed treatment choice. To be able to describe their pain, they need scientifically curious clinicians. I’ve come across too many clinicians who believed current knowledge adequately described psychopathological phenomena. The development of a voice feeds a greater need for a language; the development of a language feeds the need for a voice. Each plays off the other.
There is still a long road ahead for me, but I hope I can play my little part in delivering that unlikely future I dreamt about on the worst day of my life. For those of you out there who have also suffered the bombardment of worthlessness by a world that does not understand: You are valuable. I intend to prove it—one article at a time.
See also:
I’m using the NIMH definition: “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.”
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One of the most painful aspects of mental illness -- or of almost any deep suffering -- is how thoroughly it convinces us that we are alone in our pain. It whispers that no one sees us. It screams that no one believes us. It howls, barbarically, that no one cares whether we live or die. That conviction feels like truth when you’re inside the prison of suffering. But it’s also part of how suffering works. It’s one of its cruelest, most self-perpetuating symptoms, pushing us deeper into isolation and despair.
Reading this piece, I was struck by how vividly it captures that inner, estranged world. But I also find myself wondering (not in contradiction to the author’s experience, but in concern for what it reveals) whether some of what’s described as clinician neglect is, in fact, the unbearable distortion that suffering itself produces. Pain can act like a funhouse mirror: it can turn care into dismissal, make empathy feel like condescension, and twist caution into cruelty or abandonment.
If that’s true, then it’s not enough to ask clinicians to care more, or even to care more visibly. Most clinicians already care deeply, and we're devastated when our care doesn’t come through. We wrestle daily with this heartbreaking dilemma: what would make our care land when someone’s internal landscape is structured to keep it out?
So I keep turning this over: How can we do better at helping our care register? What kinds of systems, structures, or interpersonal gestures can help make care detectable to someone whose illness warps every signal? What kinds of messages -- what tone, what timing, what trust -- can survive the distortion field of fear, shame, and hopelessness? How do we help even a faint flicker of attunement take root, so it might grow into something sustaining?
If we could find the key to that lock, I think we’d be doing more than fixing a “broken system.” We’d be helping people feel less alone in the most isolating moments of their lives.
Every time I hear your story I get more and more infuriated by how much your concerns were dismissed. Sure, serotonin syndrome might be rare, but it was entirely plausible. It seems to me that few clinicians stop to consider plausibility and pharmacological principles when it comes to adverse effects though. If only more would listen when patients express their concerns and see it as an opportunity to illuminate their blindspots, rather than dismiss. *sigh* Gives us something to bang a drum about, I suppose!