Navigating invisible illness: Medically unexplained symptoms and the power of narratives 2026 Stone et al

[Andy]

Background
People with invisible or unexplained illnesses lack an explanation for their suffering. The lack of a coherent narrative limits their capacity to make sense of their experience and inhibits their recovery.

Objective
To describe common illness narratives and how they are used by doctors and patients to make sense of symptoms.

To explore how alternative narratives can be used to empower people who live with ill-defined suffering.

Discussion
Medical consultations are social constructs that follow accepted rules. People describe symptoms that are supposed to drive diagnosis, and then evidence-based protocols enable cure. Diagnosis lends medical authority to a person’s illness, enabling access to social goods, including healthcare resources. Without a diagnosis, people can be left without words to make sense of suffering, without community to provide support and without healthcare resources to relieve symptoms. General practitioners (GPs) can provide critical support for people living with uncertain and disabling illness.

Open access

 

[MrMagoo]

Background
People with invisible or unexplained illnesses lack an explanation for their suffering. The lack of a coherent narrative limits their capacity to make sense of their experience and inhibits their recovery.

Objective
To describe common illness narratives and how they are used by doctors and patients to make sense of symptoms.

To explore how alternative narratives can be used to empower people who live with ill-defined suffering.

Discussion
Medical consultations are social constructs that follow accepted rules. People describe symptoms that are supposed to drive diagnosis, and then evidence-based protocols enable cure. Diagnosis lends medical authority to a person’s illness, enabling access to social goods, including healthcare resources. Without a diagnosis, people can be left without words to make sense of suffering, without community to provide support and without healthcare resources to relieve symptoms. General practitioners (GPs) can provide critical support for people living with uncertain and disabling illness.

Open access

A bit long for my liking, but a useful piece if only the GPs would take it on board.

 

[ahimsa]

I did not read the whole thing. It might be good, but I stopped when I saw a quote from Shorter's 1993 book called "From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era." I'm not sure I'd trust anyone who takes that book seriously.

Quote from the publisher's website for the book:

Newly popularized diseases such as "chronic fatigue syndrome" and "total allergy syndrome" are only the most recent examples of patients complaining of ailments that express the truths about the culture in which they live.

There's an MEpedia entry for Edward Shorter with more links to things he's written.

 

[Sean]

Without a diagnosis, people can be left without words to make sense of suffering, without community to provide support and without healthcare resources to relieve symptoms.

What if they have an incorrect diagnosis, particularly an unfalsifiable one, which the diagnostician/clinician refuses to reconsider and instead continually forces the incorrect diagnosis and its adverse consequences upon the patient? What happens then?...

Exactly the situation we have today with the whole MUS/FND/psychosomatic paradigm.

General practitioners (GPs) can provide critical support for people living with uncertain and disabling illness.

Sure, but not the sort you, um, offer. A bullshit diagnosis is worse than no diagnosis. If you don't know what the problem is, just say so, don't paper over the ignorance with crap, and give out bogus advice to fill the therapeutic vacuum, and then blame the patient for it not working.

That is all patients are asking for, and yet it seems to be the single most impossible and terrifying task for a doctor to do.

And the consequences are utterly appalling.

 

[JellyBabyKid]

General practitioners (GPs) can provide critical support

What support?! Mine's just told me I have "reached the end of what the NHS can offer" and that's for multiple conditions.

Diagnosis on its own solves nothing, although in my experience if you have ME, LC, ADHD or autism that is almost all you are given, except maybe a "lifestyle management" course.

Edit to add: And lots of books and articles telling you how these are all overdiagnosed nonsense diagnoses and you just need to try harder and stop thinking about it.

 

[Trish]

I did not read the whole thing. It might be good, but I stopped when I saw a quote from Shorter's 1993 book called "From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era." I'm not sure I'd trust anyone who takes that book seriously.

Quote from the publisher's website for the book:


There's an MEpedia entry for Edward Shorter with more links to things he's written.

I have just read it too. It also uncritically quotes Showater and the ideas of socially constructed illness. Also stuff that sounds like Sharpe's 'illness without disease'. And encourages GP's to construct a narrative about the illness the patient likes.

There's lots of nice sounding stuff about being a supportive GP, but in the end I think they conclude, without saying it explicitly, that ME/CFS is a MUS and fits into 'illness without disease'.

 

[Peter T]

Constructing preferred narratives is very worrying. I remember when I started working as a Speech and Language Therapist over forty years ago, there was still a belief among many doctors and families that the patient should have hope. This generally involved a misleading narrative of potential recovery even in terminal illnesses.

This may have been comforting in the short term and patients may have colluded in this. However in degenerative conditions it was exceedingly counter productive to effective management of inevitable of deterioration. When I was first diagnosed with ME/CFS I was happy to be told that recovery was not only possible but likely. Indeed it came as something as a shock when some six years in I was confronted by a neurologist who told me I would have this condition for life.

I have made my health worse and the practicalities of life worse, by failing to give up on the ideas that any improvement is irreversible and what I need to do is push on till I got better.

 

[Turtle]

I can't read and remember all this and I won't try either, but I do have one question.
Does Shorter want to control the narritive as in; just a nice narritive to keep the patients quiet?

 

[tornandfrayed]

Constructing preferred narratives is very worrying. I remember when I started working as a Speech and Language Therapist over forty years ago, there was still a belief among many doctors and families that the patient should have hope. This generally involved a misleading narrative of potential recovery even in terminal illnesses.

This may have been comforting in the short term and patients may have colluded in this. However in degenerative conditions it was exceedingly counter productive to effective management of inevitable of deterioration. When I was first diagnosed with ME/CFS I was happy to be told that recovery was not only possible but likely. Indeed it came as something as a shock when some six years in I was confronted by a neurologist who told me I would have this condition for life.

I have made my health worse and the practicalities of life worse, by failing to give up on the ideas that any improvement is irreversible and what I need to do is push on till I got better.

I so strongly agree with this. I clung on to the hope that recovery would happen for about 20 years and it was entirely negative for my health and wellbeing.

 

[rvallee]

I got curious about this so-called "power of narratives" and, whew:

The dominant illness story in Western culture is the ‘restitution narrative’. It describes the expected course of illness: symptoms are supposed to coalesce into patterns, patterns lead to diagnosis, diagnosis guides evidence-based treatment, and treatment leads to cure.

I mean this is a narrative, alright. In the fantasy section. Did we entirely miss that medicine is omnipotent and omniscient? Even in the narrow range of illnesses medicine understands, this is still a completely false narrative, with zero overlap with reality. In fact medicine is still pretty much impotent at most illnesses, there is so much work left to do.

And of course this narrative is only there as an opposite to the other narrative, which is entirely about and originates from the medical profession itself:

Doctors share the expectation of a symptom-diagnosis-protocol-cure narrative arc and can feel impotent and helpless when this narrative fails. As general practitioners (GPs), we can feel increasingly anxious about ‘missing something’, feeding the understandable anxiety of our patients, who find it difficult to trust us when we can’t find ‘the answer’.

What is a narrative in the context of this op-ed anyway?

Listen carefully to the patient’s narrative, including their requested management (if any)

Facts, details, patient history, basic information.

So this is basically a regression to the pre-science days, but framed as a good thing, as a simple-but-wrong solution to hard problems. It completely ignores the fact that the vast majority of illness impacts are material and tangible, that we live in a physical universe where ideas have no power on their own:

GPs can help by affirming the reality of the suffering, seeking to understand a person’s own illness narrative and offering helpful alternatives

Having a narrative that is ‘good enough’ gives people a life raft until the narrative shipwreck is repaired.

None of this actually matters if no support is offered. This is literally just "thoughts and prayers", in the exact framing that uses it dismissively, and pretty much places illness in some ethereal plane where earthly concerns no longer matter, to either the medical profession or the patients. Can't pay your bills? Doesn't matter, you got a good story to tell. About to be evicted because you can't pay rent anymore? Hey, you've got a good narrative going, don't let those small details bother you. Can't afford food, or can but have no ability to prepare it? Do CBT, I guess.

The doctor–patient relationship is an essential tool in conveying trust, understanding and empathy, as well as ongoing scientific curiosity, so that people are able to live with invisible illnesses and their associated invalidation.

As Gandhi said, "it sounds like a good idea". I wouldn't know, though, never seen it, rarely heard of it. I have never had any level of such relationship with a medical professional that goes beyond a simple transaction with a cashier. It's all very transactional and self-limiting.

Invisible illness can resolve without a diagnosis being reached, can remain undiagnosed, or can become obvious over time.

Damn, how could we possibly handle such problems without this "well, Jim, team A could score more goals than team B and win, or team B might score more goals than team A and win, now back to the studio for 5 minutes of gambling ads" level of analysis?

This is actually even more delusional than I expected, and I expected delusional. And to answer my question, what does "narrative" mean in this context? Nothing, and everything. A substitute for reality, basically reality avoidance. This is, itself, a narrative, about themselves, where we are merely shadows on walls they cast themselves. Now that is IMAX-level projection.

 

[bobbler]

Background
People with invisible or unexplained illnesses lack an explanation for their suffering. The lack of a coherent narrative limits their capacity to make sense of their experience and inhibits their recovery.

Objective
To describe common illness narratives and how they are used by doctors and patients to make sense of symptoms.

To explore how alternative narratives can be used to empower people who live with ill-defined suffering.

Discussion
Medical consultations are social constructs that follow accepted rules. People describe symptoms that are supposed to drive diagnosis, and then evidence-based protocols enable cure. Diagnosis lends medical authority to a person’s illness, enabling access to social goods, including healthcare resources. Without a diagnosis, people can be left without words to make sense of suffering, without community to provide support and without healthcare resources to relieve symptoms. General practitioners (GPs) can provide critical support for people living with uncertain and disabling illness.

Open access

One major thing here is that (even if that was accurate understanding and wasn’t unhelpful to those who have it) the fake story bs being taught to someone who acts as gatekeeper to investigations and triage is getting in the way of them doing the actual curiosity bit when someone first presents.

It’s stopping diagnosis from being accurate and I’m afraid I think has been invented by those who wanted to divert great swathes into being bucketed to not receive access to such real healthcare.

It’s acting to make sure for those ‘whose face fits’ (lots of mus and fnd articles explicitly include dog whistles of certain demographics like women and trauma claims) don’t get grown up ‘let’s hear your symptoms and when they first started’ then looking at it seriously with face value without bias clouding what’s heard with assumptions the way a man with a potential heart problem or who was a steel worker and suddenly can’t move one day would. Tho it’s become so silly even they probably are now being told to spend two weeks breathing carefully then come back in case it’s hysterics too.

It’s also alongside some strange attitude that once you’ve ignored anything long enough you can call it chronic even if it’s a broken leg in our now crap nhs doing the exact opposite of the sales spiel about ‘wellness’ or ‘prevention’ that those behind it are giving to politicians. It’s gerrymandered access to basic healthcare where things just get fixed on time and doesn’t get worse where necessary for great swathes of the population- and made them sicker by delay, deny tactics. Pretending telling those doing that dirty job to not forget to say ‘there,there, I know it’s hard’ whilst they are forced to not treat them or at least get adjustments out in place to avoid deterioration is just silencing and foot on neck.

And the narratives certainly shouldn’t be coming from anyone other than the very middle of the pack, representative cross-section of those who’ve had it long enough with enough experience not realise the sunny upland lies was bs if they just end up scraping heaped. It’s quite outrageous this entitlement that the bunch they harm then get their truth being not theirs but the same parasites think they can hog that and tell some lie for them instead. Talk about old fashioned make you want to vomit patetnalism based on them not wanting to he self-effacing about the impact of their own profession and actions on ALL its supposed to serve.

If you decide to chop out a chunk from getting service any longer because budget wise you decide you can’t treat everything so it’s best to just leave some behind then you don’t get to rewrite truth on the success or impact of that. I love how they still in their deluded minds want to pretend WE are a lot of appointments and why services are overwhelmed when most of us had decades too terrified or ill or having been told ‘don’t bother coming round here’ ….then apparently are being lied about as more work than everyone else - it shouldn’t be allowed to gerrymander facts.

 

[MrMagoo]

I should have read the whole thing but couldn’t be bothered. There was some good stuff in it though.