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.
I think part of it is seeing patients as partners in their own treatment, and engaging fully with the suggestions we make. Instead of dismissal, explaining the scientific rationale behind an assertion that a particular treatment isn’t suitable. Finding solutions together to try, instead of putting up roadblocks. Planning long term strategies for treatment. What’s on the horizon when the current treatment eventually fails, etc. No placating - we don’t want to be told that our chronic illness is highly treatable or hear how it’s analogous to something like diabetes. The brain is connected to every other part of the body. Think about what that must be like when things go wrong. I need some hope for the future because this battle with depression is exhausting and over the course of a lifetime, it takes everything away from you bit by bit.
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!
You give such a fascinating and necessary view on the nature of severe suffering from mental health problems. Keep it up, even when it seems hard to convince others of the value of your perspective. Thanks for your honesty.
Thanks for reminding me of the hell of severe depression and a mental "health" system that had misdiagnosed me. My experience was of severe BPI (including psychosis) misdiagnosed as BPD... ended in NGRI before I finally got the appropriate diagnosis and treatment. I'm an advocate for euthenasia for severe mental illness because my life was not worth living in that decade, and the tiny chance I had a misdiagnosed treatment responsive illness, is not justification, to me, for making those that don't, continue to suffer. Now, it's years since I've had a mood episode, probably more than ten since a depressive episode, and close to that for mania. I do add that I have an idiosyncratic depression treatment strategy that I'm fortunate my psychiatrist is willing to go along with (given ECT is the alternative territory) ... deliberately induce a switch to mania with a tricyclic, and once the switch has started, cease it and clobber the mania with antipsychotic and hope I land in euthymia. My psychiatrist has noted he'd come in for criticism if I landed in hospital manic (or worse) in the meantime, but I've always negotiated this successfully.
Anyway... that was a digression... As someone who has subsequently gone into medicine, it's often easy to take on the jaundiced clinician attitude to all the situational depression that comes through the system... I'm so sceptical about what my hospital offers people with depression, which is effectively ECT if meds haven't worked... buproprion is I'm pretty sure only subsidised for one month for smoking cessation here, so unless patients have the funds to pay for it, the public system won't... But yes, the arrogance of clinicians is intensely frustrating, and I note that it's very hard to negotiate the system and maintain compassion and integrity
My bugbear is the mental health system and conditions and issues... When I have a severe psychiatric illness, you can call it a serious mental illness if you like, but to call it a mental health issue - like it's something a bit of positive psychology can fix - (our justice system uses that phrase to describe the NGRI cohort - like they just couldn't get their shit together to manage their issues properly, as of the nothing really wrong with them, they just lack self management skills) - mental health is the sphere of positive psychology, as someone with a serious illness, I want to be seen by a mental illness practitioner, who's studied mental illness, not someone who's specialised in positive psychology.
A close friend in Arizona has been undergoing extreme insomnia, anxiety and depression the past few years. I'm shocked at how awful his providers have treated him. They only prescribe addictive psychiatric and sleep drugs and make no attempt to suss out why he's feeling what he does. These people have certificates and degrees in some area of mental health or psychology, and they are clueless and careless. Granted, he has Medicaid as his only insurance, so the good psychiatrists and psychologists are out of reach. The U.S. system is awful. He's tried suicide and was carted off and locked up for a week, with no medication or counseling. When you attempt or threaten suicide, punishment, not treatment, is what is dished out.
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.
I think part of it is seeing patients as partners in their own treatment, and engaging fully with the suggestions we make. Instead of dismissal, explaining the scientific rationale behind an assertion that a particular treatment isn’t suitable. Finding solutions together to try, instead of putting up roadblocks. Planning long term strategies for treatment. What’s on the horizon when the current treatment eventually fails, etc. No placating - we don’t want to be told that our chronic illness is highly treatable or hear how it’s analogous to something like diabetes. The brain is connected to every other part of the body. Think about what that must be like when things go wrong. I need some hope for the future because this battle with depression is exhausting and over the course of a lifetime, it takes everything away from you bit by bit.
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!
You give such a fascinating and necessary view on the nature of severe suffering from mental health problems. Keep it up, even when it seems hard to convince others of the value of your perspective. Thanks for your honesty.
A very well-written piece about healthcare advocacy. The patient can be the best source of information
Thanks for reminding me of the hell of severe depression and a mental "health" system that had misdiagnosed me. My experience was of severe BPI (including psychosis) misdiagnosed as BPD... ended in NGRI before I finally got the appropriate diagnosis and treatment. I'm an advocate for euthenasia for severe mental illness because my life was not worth living in that decade, and the tiny chance I had a misdiagnosed treatment responsive illness, is not justification, to me, for making those that don't, continue to suffer. Now, it's years since I've had a mood episode, probably more than ten since a depressive episode, and close to that for mania. I do add that I have an idiosyncratic depression treatment strategy that I'm fortunate my psychiatrist is willing to go along with (given ECT is the alternative territory) ... deliberately induce a switch to mania with a tricyclic, and once the switch has started, cease it and clobber the mania with antipsychotic and hope I land in euthymia. My psychiatrist has noted he'd come in for criticism if I landed in hospital manic (or worse) in the meantime, but I've always negotiated this successfully.
Anyway... that was a digression... As someone who has subsequently gone into medicine, it's often easy to take on the jaundiced clinician attitude to all the situational depression that comes through the system... I'm so sceptical about what my hospital offers people with depression, which is effectively ECT if meds haven't worked... buproprion is I'm pretty sure only subsidised for one month for smoking cessation here, so unless patients have the funds to pay for it, the public system won't... But yes, the arrogance of clinicians is intensely frustrating, and I note that it's very hard to negotiate the system and maintain compassion and integrity
My bugbear is the mental health system and conditions and issues... When I have a severe psychiatric illness, you can call it a serious mental illness if you like, but to call it a mental health issue - like it's something a bit of positive psychology can fix - (our justice system uses that phrase to describe the NGRI cohort - like they just couldn't get their shit together to manage their issues properly, as of the nothing really wrong with them, they just lack self management skills) - mental health is the sphere of positive psychology, as someone with a serious illness, I want to be seen by a mental illness practitioner, who's studied mental illness, not someone who's specialised in positive psychology.
They were the ones who defined "normal" when it actually doesn't exist. Very well written. Respect.
A close friend in Arizona has been undergoing extreme insomnia, anxiety and depression the past few years. I'm shocked at how awful his providers have treated him. They only prescribe addictive psychiatric and sleep drugs and make no attempt to suss out why he's feeling what he does. These people have certificates and degrees in some area of mental health or psychology, and they are clueless and careless. Granted, he has Medicaid as his only insurance, so the good psychiatrists and psychologists are out of reach. The U.S. system is awful. He's tried suicide and was carted off and locked up for a week, with no medication or counseling. When you attempt or threaten suicide, punishment, not treatment, is what is dished out.