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I Built My Identity Around Being Bipolar. Then My Doctor Said I’m Not Bipolar
What happens when what’s wrong with you isn’t what’s wrong with you?

Thoughts?
I think it's a good article, good food for thought. I've had many such patients I've inherited from other psychiatrists who were diagnosed in the 1990s through 2010 when Bipolar was a very popular diagnosis. It has caused me to take my time as an outpatient psychiatrist in diagnosis and keep an open mind, knowing sometimes patients don't fit into our nice little DSM check box diagnoses all the time, and sometimes both the treatment team and the patient need time to gather all the information that may not be immediately obvious to any party.![]()
I Built My Identity Around Being Bipolar. Then My Doctor Said I’m Not Bipolar
What happens when what’s wrong with you isn’t what’s wrong with you?www.phillymag.com
Thoughts?
Are you schizoaffective if you do not experience mood instability or psychosis without medication for months or years? Conventional wisdom says patients who have experienced severe symptoms of serious mental illness like bipolar, schizophrenia, or schizoaffective need to be on medication for the rest of their lives to prevent recurring symptoms. In such cases is the initial diagnosis always wrong, or is it a little more complex than that?Roses are red,
Violets are blue,
You're schizoaffective,
And so am i.
I hate this kind of circular reasoning where people claim someone couldn't have had schizophrenia or bipolar disorder if they have done well off meds. Even in the days of Kraepelin when there werent medications that helped, many patients did fine for 20+ years without recurrence of illness. There is a certain confirmation bias at play - the patients who get well, stay the hell away from psychiatry and so its the people who keep coming back when they stop their meds that we see that plays into this nonsense. As many on this forum know, I hold the minority opinion that most people with severe mental illness do not need long-term medications, and also believe we are doing tremendous harm to patients by exposing them long-term to toxic drugs they don't need. As I have a specialized practice now, I don't treat these patients but I have treated pts with bipolar disorder and schizophrenia with intermittent medications (i.e. during acute episodes) or without meds in the past. I also think psychotherapy, lifestyle modifications, nutrition, physical activity etc are woefully underutilized in treating patients with serious mental illness.In such cases is the initial diagnosis always wrong, or is it a little more complex than that?
I hate this kind of circular reasoning where people claim someone couldn't have had schizophrenia or bipolar disorder if they have done well off meds. Even in the days of Kraepelin when there werent medications that helped, many patients did fine for 20+ years without recurrence of illness. There is a certain confirmation bias at play - the patients who get well, stay the hell away from psychiatry and so its the people who keep coming back when they stop their meds that we see that plays into this nonsense. As many on this forum know, I hold the minority opinion that most people with severe mental illness do not need long-term medications, and also believe we are doing tremendous harm to patients by exposing them long-term to toxic drugs they don't need. As I have a specialized practice now, I don't treat these patients but I have treated pts with bipolar disorder and schizophrenia with intermittent medications (i.e. during acute episodes) or without meds in the past. I also think psychotherapy, lifestyle modifications, nutrition, physical activity etc are woefully underutilized in treating patients with serious mental illness.
Obviously, I am not discounting that some pts do need lifelong/long-term medications (for instance, I would not advocate that insanity acquittees go off their meds) but the flawed paradigm of condemning people to a lifetime of medication due to risk aversion is dangerous and there is no good data to support the use of long-term meds for the majority of patients.
This is something I've been curious about actually because the literature I've read on first break psychosis states that it is more likely that people who discontinue treatment will relapse. But the number referenced was 50%, which would indicate that the other 50% of patients did fine with interrupting antipsychotic medication after they were in recovery. I've also seen it mentioned that, while continuing antipsychotics is associated with decreased release in the short-term (<3 y), in the long-term (7 years+) the relapse rates between the groups are equivalent. However, function and recovery rates were improved in the groups that had reduction/discontinuation of antipsychotics.
I've had a hard time rectifying how this conflicts with standard practice, but I guess that's just something I'll have to explore further during my outpatient years and post residency.
The author above likely had an identity disturbance if she had so little sense of self that she identified primarily as a disease.
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Your memory of the above study is way off... They randomized first breakers treated to remission for 6 months (highly selected group) to maintain dose or try a taper strategy for 18 months... after that it was doctor's discretion. The taper would stop if the patient got worse. After 3 years, the taper group relapsed more but the overall relapse rate after 7 years was equal, with around 2/3 relapsing at least once. < 10% were able to discontinue antipsychotics.
The taper group, however, did show higher (but less than 50%) rates of 6 month remission at 7 years and were on lower doses.
Take homes: A very small number of people might come off antipsychotics after a first break successfully. Many of these drugs have wicked long half lives and maintaince dose can be way lower than hospital doses (2-3 mg of haldol). Trying to taper down antipsychotics is worth it if someone achieves remission for 6 months but they will probably not come off completely.
Remember, each relapse comes with a risk of job loss, family loss and prison time, never mind the literature on duration of untreated illness.
This seems like a totally unwarranted swipe at her character, given this is sort of the result that the mental health system pushes for generally, especially for people classified as SMI. Do all peer support specialists have identity disturbances? The system tries to socialize people into the role of "mental patient who takes their meds like a good girl/boy" and then we try to say they are the problem when they allow a major part of their self-definition to be based on their diagnosis?
Would you say this about people who identify largely as cancer "survivors", and spend huge amounts of time on advocacy work related to that?
That's...kind of breathtaking, I have to say.
Regarding your other comments, you're correct, I should have said <20% of first episode psychosis who achieved remission went on to be med free at that time point. I don't know how I passed 6th grade. I also agree that everyone deserves a chance to taper down after their first episode, but with great caution and that function is much much important than symptoms (as long as the pt can handle the sx). I also think that we should remember that 2 mg of haldol daily at steady state is actually pretty strong... and likely enough for the average person who achieves remission.
This is tangentially related, what happens to people who survive to old age with schizophrenia? Do they improve? I know the morbidity is higher, but assuming they do well enough to survive. I've heard some disorders like BPD for example improve with older age. Schizophrenia made me curious because I always hear it associated with youth (in terms of the onset), and I was curious if it would also taper as a person ages assuming they can get through the pitfalls of having it. I know they're not the same disease but the way in which schizophrenia tends to emerge in youth and Alzheimer's in old age and the way some of the symptoms overlap has always made me associate the two with each other.
I didn't mean this statement to be breathtaking or controversial, but over investment in a single component of your person is exactly what I would call a degree of identity disturbance, and I said likely. I also didn't mean it as an insult, but as a characterization that may be secondary as you say to socialization. I would say the same thing about someone who overinvests *their sense of self* in anything, be it surviving cancer, being a CEO, being a parent, being a psychiatist, ect. If your sense of self is so simple that you can define it in one word, as the author claimed, you have a deficiency that can likely be worked on to help with a more rounded and fulfilled life resistant to insult
It's not necessarily a trauma reaction.Borderline personality disorder (which is what I assume you mean by BPD, not bipolar disorder) is an entirely different beast. This is a trauma reaction
It's not necessarily a trauma reaction.
It's not necessarily a trauma reaction.
Agreed, and individuals with borderline personality disorder often have a history of trauma in childhood. At the point the “trauma reaction” has evolved into a pattern of unstable behavior, mood, and self-image that is pervasive and ingrained in the personality once the personality has been formed, it goes beyond “trauma reaction” regardless of whether the pattern’s pathogensis may be based in trauma.
I said that if a diagnosis, or anything else, is a part of who you are, that's healthy. If anything is so central that it alone defines you, that is a deficit. As psychiatrists we should be able to point out elements of character pathology when discussing a diagnosis and not view that as an assault on the person. Over investing your identity in one thing doesn't make you a bad person nor does having minimal capacity for empathy. Having borderline pd or NPD doesn't make you bad. Having had no close relationships doesn't make you bad, but I'll have to discuss that when making a formulation. Who am I without cancer is very different from I felt a sense of purpose from using my experience to help others with cancer and now I'll have to replace that.I think this is an overly simplistic and even insensitive way of viewing it, honestly. People with chronic illness identify the illness as a part of who they are...
While that's technically true, every single case I've seen has evolved from childhood trauma.
What is the trigger for the pattern of unstable behavior, mood, and self image? I stand by what I said.
The "BPD and trauma" link is over-exaggerated and not as strong as we'd like to think it is (although it is strong, the field acts like it's a given when that's not necessarily true). I also think that PTSD is often misdiagnosed as BPD. PTSD can be accompanied by emotional and interpersonal dysregulation.
I met a prominent BPD researcher who does a lot of longitudinal studies and she told me her work suggested a lot of times it's just a really emotional kid and the parents don't know what to do with said kid. Which results in reinforcing problematic behavioral patterns and invalidation. Even DBT's biosocial model says that it's repeated invalidation and doesn't specify trauma, although of course trauma is extremely invalidating.
While that's technically true, every single case I've seen has evolved from childhood trauma.
What is the trigger for the pattern of unstable behavior, mood, and self image? I stand by what I said.
@cara susanna is right on the money - depending on the study something around 20-30% of people with BPD don't have any identifiable history of trauma. The biosocial DBT model, of only requires a mismatch between emotional needs/reactivity of the child and sensitive responsiveness of the parent. Worth noting the very psychodynamic, attachment-centered MBT model comes to more or less the same conclusion.
I have seen many. Only about 1/2 of BPD pts have significant childhood trauma history. However those pts are the ones who have a worse course, are more severely impaired, more greatly utilize health services, and more likely to have other psychiatric comorbidities (e.g. depression, bipolar, PTSD, substance abuse).How many legit cases of BPD have you seen with no trauma history?
How many legit cases of BPD have you seen with no trauma history? And keep in mind, I'm not identifying trauma only as childhood abuse. Relationships with others that are experienced as traumatic by the patient (emotional abuse, severe bullying by peers) can be just as traumatizing as a child who's suffered physical or sexual violence and in some cases, a more prominent trigger for the dysfunctional relationships we see with BPD. YMMV.
I have seen many. Only about 1/2 of BPD pts have significant childhood trauma history. However those pts are the ones who have a worse course, are more severely impaired, more greatly utilize health services, and more likely to have other psychiatric comorbidities (e.g. depression, bipolar, PTSD, substance abuse).
I have spent a lot of this year working in an IOP focused on people diagnosed with BPD, so....lots? I am sure if you stretch the definition of trauma enough you can account for all of them, but the term begins to lose meaning and much explanatory power. After all, if one is traumatized by an event that happens in most people's lives without great incident, it is hard to say the event caused the dysfunction.
How many legit cases of BPD have you seen with no trauma history? And keep in mind, I'm not identifying trauma only as childhood abuse. Relationships with others that are experienced as traumatic by the patient (emotional abuse, severe bullying by peers) can be just as traumatizing as a child who's suffered physical or sexual violence and in some cases, a more prominent trigger for the dysfunctional relationships we see with BPD. YMMV.
I mean, that's true, but I'm not the one extending the definition. We know that the definition goes beyond just physical or sexual violence and that one event experienced without pathologic difficulty by one patient can be severely traumatic to another.
Nevertheless, at this stage of my career, I will respectfully agree to disagree. Perhaps I'll change my mind in a few years.
To throw my interpretation of it in there...I would agree that one event experienced without pathologic difficulty by one patient can be severely traumatic to another. However, I would venture to say that instead of stretching the definition of trauma to whatever the patient says it is, perhaps it is the patient's personality disorder that is causing them to misinterpret events that the majority of the population can cope with as particularly traumatic. This view would seem to get to the core of borderline personality disorder itself: poorly developed self image (so will misinterpret even fairly benign negative social interactions with as severely disorienting), preoccupation with abandonment, emotional lability, separation insecurity, etc. So depending on how far one is willing to stretch the definition of "trauma", it could certainly seem like many of these patients are experiencing "trauma" in their childhood (especially with vague things like "emotionally abusive") when in fact it is their personality disorder which is causing them to interpret and react to these stimuli in a different and maladaptive way vs the rest of the general population.
This may explain some of the disconnect between what the research shows (which is that there are a significant portion of patients with BPD who experience no true childhood trauma or abuse) and what these patients end up reporting as vague "trauma". Kind of a chicken or the egg thing.
How many legit cases of BPD have you seen with no trauma history? And keep in mind, I'm not identifying trauma only as childhood abuse. Relationships with others that are experienced as traumatic by the patient (emotional abuse, severe bullying by peers) can be just as traumatizing as a child who's suffered physical or sexual violence and in some cases, a more prominent trigger for the dysfunctional relationships we see with BPD. YMMV.
I'm curious about the assertion that BPD is overdiagnosed. I feel like I see it all tgg time and am generally not shy about diagnosing it. If it truly is overdiagnosed I'm sure I'm one of the worst offenders, but it's usually pretty clear in my view.
Very interesting article. Thanks for sharing. There was en entity called "pseudoneurotic schizophrenia" at one point but then went out of use. The boundaries between schizoaffective/bipolar, borderline personality disorder aren't always so clear. I did have a couple of female patients on the inpatient unit where I struggled between the three dx. The severity of the mood/psychosis seemed the deciding factor. And the idea that patients with a chronic psychotic illness uniformly get worse in functioning with age isn't a universal rule either. There are a lot of exceptions that do not fit with our neat DSM boxes and this woman could be one of those.
For a lot of patients I try to minimize what the diagnosis label means and I make it explicit that in psychiatry we're prone to changes. And let's face it; most of the time we aren't treating disease categories but managing symptoms.
One thing that irked me is her psychiatrist saying she doesn't have a "biological illness". We are doing the field a big disservice if we keep propagating this false dichotomy. Heck, even Borderline PD has more than 40% genetic heritability. I would also question revisiting the diagnosis now based on her current functioning/ongoing sx.
If it's pretty clear, you're either seeing insanely personality disordered people or you're overdiagnosing in my opinion. I could tell horror stories about how I've witnessed people obtain that diagnosis (Saw a resident make the dx once in the medical service in someone who I didn't believe carried the dx. I asked why the dx was made and the resident said it was because the patient was tearful, yelling at nurses, irritable with her roommate, constantly pushing her call button, endorsing passive suicidality, overstating her pain (resident said "faking"), and seeking attention...in the context of cancer diagnosis made 2 days prior).
In my experience, people think it's a slam dunk dx because many of the symptoms are similar to common pathologic human behavior in times of crisis and usually by the time we see these patients, they are in crisis. They're dysregulated, possibly suicidal, their life is in shambles, they've lost loved ones, and they just can't get it together. But what's key is their life story, not how they look/what they share when we evaluate them. I never make the diagnosis on the inpatient unit (either medical or psychiatric) unless the patient is someone who has been closely tied to the mental health system for years and we have evidence of the disorder or unless I get a ton of collateral from family members who've known the patient his/her entire life.
Well said. I only differ from this in that if the patient reacts to being told about the criteria/phenomenology of BPD by saying some variant of "oh my God, I didn't know there was a name for that!/you're describing my life/how did you know?" then maybe overwhelming collateral is less necessary.
Ha. I love this.Well said. I only differ from this in that if the patient reacts to being told about the criteria/phenomenology of BPD by saying some variant of "oh my God, I didn't know there was a name for that!/you're describing my life/how did you know?" then maybe overwhelming collateral is less necessary.
As I mentioned above, I constantly see PTSD misdiagnosed as BPD. I mean, if you have an adult woman who is perfectly fine until she's sexually assaulted in the military, is that really a personality disorder?
It certainly could be. I think this is where the BPD vs Complex PTSD arguments stem from.
Personality develops by age 18. Diagnostic validity for BPD has even been found as early as age 12. If someone is completely fine until a traumatic event happens, that suggests it is more of a trauma reaction and not so much a pervasive style of coping and relating to the world. Emotional and interpersonal dysregulation are criteria of BPD but certainly not unique to that disorder. Sometimes I wonder if all personality disorders should have developmental trajectory requirements for diagnosis like Antisocial does.
Complex PTSD is a whole other can of worms, but long story short: there isn't much research evidence to support it as a separate diagnostic entity or subtype of PTSD.
Personality develops by age 18. Diagnostic validity for BPD has even been found as early as age 12. If someone is completely fine until a traumatic event happens, that suggests it is more of a trauma reaction and not so much a pervasive style of coping and relating to the world. Emotional and interpersonal dysregulation are criteria of BPD but certainly not unique to that disorder. Sometimes I wonder if all personality disorders should have developmental trajectory requirements for diagnosis like Antisocial does.
Complex PTSD is a whole other can of worms, but long story short: there isn't much research evidence to support it as a separate diagnostic entity or subtype of PTSD.
So in this instance if trauma occurs you're saying BPD can not occur? Or only if it happens after 18? I'm curious why the cognitive schema of abandonment changes from age 17 years and 355 days to 18 years old...
Ive never been a fan of the "by 18 rule"
No, but if there are absolutely no behaviors or symptoms suggestive of BPD in adolescence and it suddenly develops in adulthood after a trauma, I think that suggests it's more likely a trauma reaction than a personality disorder. Personality disorders are supposed to be lifelong, pervasive patterns of behavior.
This is true, which is why I question the diagnosis being made in most cases on an inpatient psych unit when the patient has no history in the chart, though I often see it done.
However, if I'm treating someone at the age of 50 and they meet criteria for BPD and I know this from my longterm relationship as the treating psychiatrist, I don't really care whether they had traits in adolescence or not. That isn't part of the diagnostic criteria and for good reason. Likewise, if I treat a 25 yo with no BPD traits, but in learning about her hx, she tells me about her teen years, full of BPD-type stuff, didn't receive any treatment (no DBT), but with no current symptoms (no interpersonal conflicts, maintaining long-term relationships, doing well at work/school, etc), I don't make the diagnosis just because she had traits as a teen.
They are supposed to be but in reality they are not. 80% of patients with borderline personality disorder do not meet criteria at 5-10 year follow up. This is one reason why the personality disorder construct lacks validity. The test-retest reliability of these diagnoses is also low. This is why the field has moved away from the personality disorder diagnosis to assessment of personality functioning. I find this a much more useful and valid construct for what we're talking about.Personality disorders are supposed to be lifelong, pervasive patterns of behavior.
They are supposed to be but in reality they are not. 80% of patients with borderline personality disorder do not meet criteria at 5-10 year follow up. This is one reason why the personality disorder construct lacks validity. The test-retest reliability of these diagnoses is also low. This is why the field has moved away from the personality disorder diagnosis to assessment of personality functioning. I find this a much more useful and valid construct for what we're talking about.
This is true, which is why I question the diagnosis being made in most cases on an inpatient psych unit when the patient has no history in the chart, though I often see it done.
However, if I'm treating someone at the age of 50 and they meet criteria for BPD and I know this from my longterm relationship as the treating psychiatrist, I don't really care whether they had traits in adolescence or not. That isn't part of the diagnostic criteria and for good reason. Likewise, if I treat a 25 yo with no BPD traits, but in learning about her hx, she tells me about her teen years, full of BPD-type stuff, didn't receive any treatment (no DBT), but with no current symptoms (no interpersonal conflicts, maintaining long-term relationships, doing well at work/school, etc), I don't make the diagnosis just because she had traits as a teen.
They are supposed to be but in reality they are not. 80% of patients with borderline personality disorder do not meet criteria at 5-10 year follow up. This is one reason why the personality disorder construct lacks validity. The test-retest reliability of these diagnoses is also low. This is why the field has moved away from the personality disorder diagnosis to assessment of personality functioning. I find this a much more useful and valid construct for what we're talking about.
This is true, which is why I question the diagnosis being made in most cases on an inpatient psych unit when the patient has no history in the chart, though I often see it done.
However, if I'm treating someone at the age of 50 and they meet criteria for BPD and I know this from my longterm relationship as the treating psychiatrist, I don't really care whether they had traits in adolescence or not. That isn't part of the diagnostic criteria and for good reason. Likewise, if I treat a 25 yo with no BPD traits, but in learning about her hx, she tells me about her teen years, full of BPD-type stuff, didn't receive any treatment (no DBT), but with no current symptoms (no interpersonal conflicts, maintaining long-term relationships, doing well at work/school, etc), I don't make the diagnosis just because she had traits as a teen.