The Privilege of Evidence of a 'Real' Illness

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:
  • It's in your mind
  • You could get better through the force of your will
...that leads up to ¯\_(ツ)_/¯ when it comes to patients' well-being. The mind is 'mysterious', after all. You never can tell what will work. This gives the practitioner leave to give up on the patient entirely. After all, if you bully them, belittle them, force them to exercise against their will, threaten to imprison them, convince their relatives that sympathy, rather than the natural human condition in response to the ill, is maladaptive and 'enabling', question their worldview, manipulate their perceptions, lie to them, and they don't get immediately well, you're not to blame.

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.


It is worth repeating. Thank you.
And in this particularly galling aspect of this illness we are part of a bigger systemic problem--one of worthiness vs unworthiness as human beings. In this we are in a shared struggle.
I sometimes wonder where this brutality stems from with regard to qualifying some people as unworthy--it's not a new problem.

The use of the word 'mind' by medical types is always a red flag for me. There is no mind to speak of in medicine only brain--and that organ is really poorly understood so far. It's almost amusing (if you can step back) at how medicine perceives itself as all knowing -- nothing more to be learned that would shed new light on anything, that gives them the confidence to 'wave their hand' in dismissal.
Thank you for your comment, Snowdrop.

It is a seemingly endless human quest to categorize humans into categories of worthiness and unworthiness -- IMO, an endless quest to justify our own existence on this planet as good and worthy individuals.

Rather than do good works, make intellectual advancements, or help others, some feel so inadequate that all they can do to improve their own sense of self-worth is to create a category of 'bad' Others on whom they can project all the evils of society, or even their own personal sense of inadequacy.

Earlier in the post when I said, "the last Horcrux is actually inside us", I was thinking of those who call themselves 'real' patients and others 'fake' patients.

I feel as though these people have internalized Chalder's narrative of the undeserving ill -- these people MUST exist, the doctors insist that they DO. If we agree with them, but insist we are not part of that group, then the evils can be shifted onto another, smaller subgroup, which appears just fine by us.

Reminds me of how the Pilgrims came to the US to escape religious persecution and immediately then turned on one another in acts of religious persecution.
Thanks Jaime for this well written piece. as you do repeatedly.

My biggest fear when I was at my worst was of being put into a psych unit. Quitting gluten relieved at least 50% of my hyperactive autonomic system at that time. Vitamins, minerals, detox relieved most of the remaining symptoms. My biggest fear now is to need hospitalization for some reason (eg. a fall or car accident) and being forced to eat their food, have no access to my life-support supplements. What a miserable situation we live in.
Yes, ahmo! Hospitalization is now my number-one 'fear that PWOME don't have'. Let's say I get into a car accident and have some kind of physical trauma and I'm knocked out. What's the first thing they do?

Give corticosteroids.

There is a good chance if this were administered to me as first aid, I would slip into a coma. The nurses would be all WTF IT IS JUST HYDROCORTISONE WHY.

Then there's anything that contains anything serotinergic. Any drugs that have mild immunosuppression as a side-effect. Anesthesia.

That totally leaves out the natural consequence (for me) of not having my OTC meds: a rolling sweep in of brain fog, muscle weakness and aphasia, and they wouldn't be able to detect anything in CBC except a slightly low WBC count. Is it possible they'd shunt me to psych?

I hear about PWME going to the hospital and I wonder 'why not just die peacefully at home?' I'm joking, but only sort of. Our illness is so poorly understood that unless you have an advocate right beside you to demand what you need and say loudly that other interventions are inappropriate, you are pretty well screwed.

Unfortunately, I have no such person. My parents try to help, but they don't understand what I take and why, and they are absolute pushovers for anyone who wears a white coat.
"The rather unfortunate message, here, is that those 20% of patients "really try" and are worth 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."

I think a lot in images, and when I think of this concept, which I have done many time in the past, it is always an image of me lying in bed with a group of doctors standing around me, shaking their heads and giving me pitying glances whilst I plead with them to do some investigation.

"Poor boy. He's beyond our help now. If only he didn't have such a weak spirit he might have been alright. Maybe he'll learn one day".
Yes, Cheesus, that paternalistic "well, what can we do?" I had a professor who called this (and attitudes like it) the whaddaya-expect-waltz, from the poem that describes us sort of sleepwalking through our lives, doing not our best but rather performing in accordance with what we believe people deserve from us.
I have whole range of diagnosed mental illnesses from public health. I have spend more than 50 hours next to psychiatrist hoping them do something concrete like write letter to doc to do something on somatic side. Psychiatrist agreed that my condition was not "normal" and response to treatments non existed, but still they did nothing.

Apart from "mental disorders" I have been diagnosed with:
Sleep disorder and apnea
CO2 retention in blood at night

Funny thing is non of these was initiated by psychiatrist, they didn't even suspect them, but fed me sleeping pills while real problems where apnea et. al. Those pills make apnea worse.

I started asking neuropsychological tests to be made but psychiatrist just shrug their head and told me there is nothing there. After spending around 2k€ of public money to make more mental diagnoses, where I gave them ME-ICC paper and got no response. I did neuropsychological test on my own and guess what ADHD and Asperger...

So when ME/CFS have effective treatments I plan to make some inquiries what's appropriate science in psychiatrics. To me it's just not enough to state something is only in patients mind. 20% recovery rate isn't even close.

Personally I'd like to see distributions of mental disorders to be studied. We have things like electromagnetic hypersensitivity which we have no proof (or so my ignorant mind thinks, sorry I might be wrong here) but to me more interesting question is where are all fridge, elevator, tyre, asphalt or car paint hypersensitive? If these really were mental disorders I hypothesize we should see more of them, even distribution and shifts from groups. But we see none.

I'm glad you didn't end up on mental route, its just horrible. My last visit to psychiatrics ended when doc run out of the room (there was me, my wife, nurse and doc present), when she could take it as I asked why they didn't do neuropsychological tests. So much for allowing to talk about anything...
It sounds like an awful experience, Flash of Hope. I think in general that once you're diagnosed with anything system-wide, the default is to assume that any trouble you may be having is due to that issue. I myself got neuropsychiatric testing including IQ measurements, because I was sure I was getting dumber. This was when my brain fog was beginning to really scare me. Fog wasn't the word: the aphasia was really getting bad. I didn't feel like my mind was my own anymore.

I don't know where you are, but the US has often been criticized for 'over-testing'. It is part of the 'consumer experience' here that you can get tested for almost anything, so long as you insist. Treatment is another matter, oddly. I guess it's a matter of liability: most testing is low-risk, most treatment is high risk (for the doc!) because the patient can always try to claim it caused an adverse event.

I wish you luck in your quest to get decent testing and interventions that you need!
ughh, you had a GP just like I had. I had this GP who sent me to psych after psych as he was convinced I had bipolar and he wanted me diagnosed with that, he wasnt happy when they kept telling him I didnt. In the end though he kind of did get his way with getting me diagnosed with a mental health issue as one finally did diagnose me with borderline personality disorder cause I was feeling suicidal and suffering mood swings (which turned out later to be undiagnosed food issues and hormonal issues).

This dr who just had to have me diagnosed with some mental health thing, he even went as far as not following my ME/CFS specialists guidence and not even telling me that my specialist was giving him advice on how to help me (so I then also ended up thinking I'd been abandoned by my specialist and my specialist thought this other was giving me help)
Wow, Tania. It never ceases to amaze, the way that there are those who are so sure they know best. I hope you've found a better physician.

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