This blog entry developed from a conversation here, and went off onto too much of a tangent to leave there!
The commentary was discussing that the BPS school claimed that 20% of patients could recover (dubious in and of itself), and found this an acceptable percentage (which would not be acceptable in cancer, etc.)
The rather unfortunate message, here, is that those 20% of patients "really try" and are worthy of wellness. Those who don't get better must not be trying hard enough, and therefore they deserve their fate. When you state that recovery is 'all up to the patient', this is the sentiment lurking behind it.
What lurks behind all of this is the stigma against people with psychological disorders. You would never hear this about cancer, but you WOULD hear it about schizophrenia: "20% recovery rate, wow". There's some terrible kind of intersection of:
After all, you've tried everything.
I've said this before, but it was a long time ago, and it is worth repeating.
When I went to Mayo Clinic, I had no evidence I was ill, and in fact, my GP, the only one I've had my whole, adult life, insisted I wasn't. After all, the CBC, the only test he'd bothered to run, showed nothing. For those non-US folk, that includes nothing endocrinological and nothing immunological (except white blood cell count). Therefore, I must be in psychological distress, instead. (The 'instead' is important, here.)
He trotted out every creepy thing you hear on the boards: "I believe it's real... to you," etc. I remember preparing myself for a psychological diagnosis at Mayo. My sister, on the phone, said to me, "if it is a psychological diagnosis, that doesn't mean it isn't real," and this was a real effort on her part (Anthro PhD, not EdPhD).
Up to this point the doctors had been treating me with a mixture of cautious sympathy and a careful attempt not to agree with my symptomology -- the next day was the first that they did a real endocrinological test, the ITT.
Suddenly, everyone's attitude changed. "There really is something wrong with you. These are the worst numbers I have ever, ever seen," said the endo. Suddenly, her note of caution shifted to veritably oozing sympathy. Goodness gracious, I must really be in medical distress, just like I'd said! I would go on to get neurological confirmation of my subjective symptoms as well.
I felt a sweeping tide of relief. As they ran more tests, immunological, endocrinological, and neurological systems continued to show profound dysregulation and disorder. I had repeated confirmation that what I was experiencing was real, and I was safely out the other side and firmly into the realm of embodied medicine.
And from this place of safety, I turned and looked back.
I thought about how I'd been treated when people had no confirmation, yet, of my illness. The caution like a dropcloth over a real landscape of wariness, pity, and disdain. I guess I couldn't blame them. If I were psychologically ill enough to be making all of this up, there was no telling what I might do.
But then I thought about my sister's words. Say they found nothing, or nothing serious, anyway. Where would I be? How would people be treating me, right now? How would they behave towards me? What if I lived in a place where my doctors were actively discouraged from running the tests that confirmed my subjective distress? Some of you reading this don't have to guess.
As for my GP, he was so firmly entrenched in the BPS school of thinking that he assured me that having had "so many tests" that some "could not help but be irregular". Basically, once someone has decided you are disturbed, you can't go back from it, even if proof is set in front of them. I remember saying, "...but all the irregularities are in the same two body systems!" (It was two at the time -- most of the immunological and digestive stuff would come later.)
He literally hand-waved me. As in, he waved his hand in the air, brushing away that I had failed every autonomic test, showed MRI irregularities and signs of chronic immune activation, absolutely failed to produce cortisol or growth hormone during ITT, the 'gold standard' for endocrinological disorders. That while I was there I had been diagnosed with three, related disorders, none of which were ME because this is the United States.
I've never quite encountered another physician like him, but he did send a special message to my next physician (in all caps) informing her I was under treatment for depression -- not true, and never have been, but what do the facts matter? His emotional conviction was given far more weight than my objective testing.
The point is that I became aware of my privilege as someone without a psychiatric diagnosis (except in my GP's imagination, apparently), and began to question the way that we view psychiatric diagnosis as a society. I brushed up against being diagnosed with vegetative depression and -- what? -- delusions of physical illness? And my future from that position looked horrifying. I could see myself doing time in a psychiatric facility until I was willing to 'admit' I didn't 'really' feel sick.
Recently, one of the BPS school put out an article that the BPS model had 'failed to destigmatize' mental illness. Of course it did. There is no discernible attempt to destigmatize mental illness by the BPS model. Its proponents have called sufferers the 'undeserving ill', and continue to treat what they view as a mental illness with all the archaic disgust and disdain of their forebearers. Psychological disorders are still imaginary in the BPS model, something that can be overcome with will and right-thinking; and patients who can't / won't recover don't deserve to.
The commentary was discussing that the BPS school claimed that 20% of patients could recover (dubious in and of itself), and found this an acceptable percentage (which would not be acceptable in cancer, etc.)
The rather unfortunate message, here, is that those 20% of patients "really try" and are worthy of wellness. Those who don't get better must not be trying hard enough, and therefore they deserve their fate. When you state that recovery is 'all up to the patient', this is the sentiment lurking behind it.
What lurks behind all of this is the stigma against people with psychological disorders. You would never hear this about cancer, but you WOULD hear it about schizophrenia: "20% recovery rate, wow". There's some terrible kind of intersection of:
- It's in your mind
- You could get better through the force of your will
After all, you've tried everything.
I've said this before, but it was a long time ago, and it is worth repeating.
When I went to Mayo Clinic, I had no evidence I was ill, and in fact, my GP, the only one I've had my whole, adult life, insisted I wasn't. After all, the CBC, the only test he'd bothered to run, showed nothing. For those non-US folk, that includes nothing endocrinological and nothing immunological (except white blood cell count). Therefore, I must be in psychological distress, instead. (The 'instead' is important, here.)
He trotted out every creepy thing you hear on the boards: "I believe it's real... to you," etc. I remember preparing myself for a psychological diagnosis at Mayo. My sister, on the phone, said to me, "if it is a psychological diagnosis, that doesn't mean it isn't real," and this was a real effort on her part (Anthro PhD, not EdPhD).
Up to this point the doctors had been treating me with a mixture of cautious sympathy and a careful attempt not to agree with my symptomology -- the next day was the first that they did a real endocrinological test, the ITT.
Suddenly, everyone's attitude changed. "There really is something wrong with you. These are the worst numbers I have ever, ever seen," said the endo. Suddenly, her note of caution shifted to veritably oozing sympathy. Goodness gracious, I must really be in medical distress, just like I'd said! I would go on to get neurological confirmation of my subjective symptoms as well.
I felt a sweeping tide of relief. As they ran more tests, immunological, endocrinological, and neurological systems continued to show profound dysregulation and disorder. I had repeated confirmation that what I was experiencing was real, and I was safely out the other side and firmly into the realm of embodied medicine.
And from this place of safety, I turned and looked back.
I thought about how I'd been treated when people had no confirmation, yet, of my illness. The caution like a dropcloth over a real landscape of wariness, pity, and disdain. I guess I couldn't blame them. If I were psychologically ill enough to be making all of this up, there was no telling what I might do.
But then I thought about my sister's words. Say they found nothing, or nothing serious, anyway. Where would I be? How would people be treating me, right now? How would they behave towards me? What if I lived in a place where my doctors were actively discouraged from running the tests that confirmed my subjective distress? Some of you reading this don't have to guess.
As for my GP, he was so firmly entrenched in the BPS school of thinking that he assured me that having had "so many tests" that some "could not help but be irregular". Basically, once someone has decided you are disturbed, you can't go back from it, even if proof is set in front of them. I remember saying, "...but all the irregularities are in the same two body systems!" (It was two at the time -- most of the immunological and digestive stuff would come later.)
He literally hand-waved me. As in, he waved his hand in the air, brushing away that I had failed every autonomic test, showed MRI irregularities and signs of chronic immune activation, absolutely failed to produce cortisol or growth hormone during ITT, the 'gold standard' for endocrinological disorders. That while I was there I had been diagnosed with three, related disorders, none of which were ME because this is the United States.
I've never quite encountered another physician like him, but he did send a special message to my next physician (in all caps) informing her I was under treatment for depression -- not true, and never have been, but what do the facts matter? His emotional conviction was given far more weight than my objective testing.
The point is that I became aware of my privilege as someone without a psychiatric diagnosis (except in my GP's imagination, apparently), and began to question the way that we view psychiatric diagnosis as a society. I brushed up against being diagnosed with vegetative depression and -- what? -- delusions of physical illness? And my future from that position looked horrifying. I could see myself doing time in a psychiatric facility until I was willing to 'admit' I didn't 'really' feel sick.
Recently, one of the BPS school put out an article that the BPS model had 'failed to destigmatize' mental illness. Of course it did. There is no discernible attempt to destigmatize mental illness by the BPS model. Its proponents have called sufferers the 'undeserving ill', and continue to treat what they view as a mental illness with all the archaic disgust and disdain of their forebearers. Psychological disorders are still imaginary in the BPS model, something that can be overcome with will and right-thinking; and patients who can't / won't recover don't deserve to.
