In the shadows of diagnosis

Diagnostic overshadowing is when physical health problems, pain, or not yet diagnosed health conditions are not taken seriously, or are seen as delusional, attention-seeking, or made up because someone has a mental health diagnosis and/or self-injury scarring.

*Invalidation

Invalidating someone else is not merely disagreeing with something that the other person said.
It is a process in which individuals communicate to the other that the opinions and emotions of the target invalid, irrational, selfish, uncaring, stupid, most likely insane, and wrong, wrong, wrong.
Invalidators let it be known directly that their target’s views and feelings, do not count for anything to anybody at any time or in any way.

David M. Allen. MD

*(slide used by Sue Phillips Survivor Activist, ‘Much More Than a Label, CAPS Advocacy, with thanks by RITB)

One of our members ended up in ITU recently because of diagnostic overshadowing as her diagnosis of BPD, makes her especially vulnerable to diagnostic overshadowing. It can be a life threatening norm for service users with that diagnosis. She had spent a year suffering with physical ill health being disbelieved until she became critically ill.

These are other examples from members of their experiences of diagnostic overshadowing;

“I went to a GP twice a few years ago in agony. For two days she explained away every symptom & told me to go & tell CMHT about the pain. Told me no need to go to A&E it would pass, left me in worst pain imaginable.
Family member found me on day 3 & got me to hospital. I had a hole in my stomach from a perforated ulcer & had septicaemia. Literally hours to live as organs were shutting down. Now left with hefty surgical scar & developed epilepsy & have kidney damage because of the amount of time I had septicaemia for. All because a GP refused to look beyond PD label & consider that I may actually have been ill”.

“I’ve had similar it was an embolism, the terror of not being able to breathe and being told you’re basically making it up will never leave me”.

“Around 10 years ago I went to the GPs stating my asthma had got worse. I was put on a course of steroids and I have a nebuliser at home. Months and months went by and my breathing got worse. I continued going to the surgery but saw many different doctors. They ALL told me that it was anxiety due to my mental ‘illness’. I tried to disagree.
Approximately 4 months later I collapsed in the street. Was rushed to A&E. Don’t remember much for weeks after that. Apparently I had pneumonia and suspected pulmonary embolism was in ICU on a ventilator”.

“I have had two major experiences of diagnostic overshadowing. My symptoms of thyrotoxicosis were said to be panic attacks. To make it worse the thyroid issues were a side effect of lithium. Some years later my abdominal pain was thought to be psychosomatic when I actually had appendicitis. My GP was my hero on that occasion for insisting they operate”.

“various things being put down to be me being over-anxious. I used to use a stick because of pain in feet and knees but a SHO was adamant that I was using the stick in a pathological way and wanted me to stop using it. Not sure if he thought my pain wasn’t real or I was using the stick for attention or I was in the sick role… (Pain is mostly sorted through podiatry diagnosing it properly and giving me orthotics and physio exercises.)”

“Told that being transgender is just a phase and due to my mh ‘illness’. Arguing that my voices are real. Stating that some of my medication gives me suicidal side effects and makes voices worse. Physical illnesses being put down to mh difficulties”

“I was first given a MH dx age 12 which coincided with my mother convincing doctors I was a not to be trusted and was attention seeking as usual when in fact I had developed septicaemia from a burst appendix. I almost died and was in PICU for 6 weeks. I can still remember my mum standing at the end of my hospital bed post op calling me a liar.
There are many other examples from my childhood and I believe that abusive care givers are often complicit with medics re dx overshadowing. After all a dead child can’t tell…”

“The whole Venlafaxine withdrawal process was a nightmare of diagnostic overshadowing. GPs and MH workers don’t acknowledge it exists. Physical and mental symptoms attributed to pre-existing MH diagnoses or not existing at all”.

“I needed cornea transplants, there’s a strict criteria for eligibility which I fitted but the ophthalmologist had a problem with loonies. It took staff a year of persuasion to see me in clinic. He referred to me as “that girl” and assumed that history of self-harm meant I would bang my head against the wall after surgery. I had no history of head banging. He didn’t speak to me, my GP, or a psychiatrist. He made a clinical judgement based on his prejudice and I was partially sighted. I was deeply depressed because of my sight.
He also interfered with optometry when I had substantial difficulties with medical lenses. They came up with a novel method of assisting me and he vetoed it, threatening them that he would not see me”.

“I tend to let my peak flow get lower before seeking help because I worry they will think I’ve not blown hard enough into the peak flow meter or not used my inhalers.
I agonise over seeing GP unless I can justify it, it must be ‘bad enough’ and couldn’t be construed as in my imagination”.

“I have known of service users to receive late cancer diagnoses because of diagnostic overshadowing and one woman’s husband was asked when she was in labour, “is she sure?” as her baby’s head started crowning”.
“I collapsed on a MH ward and when the paramedics arrived the staff nurse said ‘she’s PD’ as if to suggest ‘don’t bother, she’s faking’. My BP was critically low and they found I had heart problems that were causing the sudden drop”.

From hypermobility, to autism, any physical illness or pain which causes anxiety, drug withdrawal symptoms, bowel impaction through psychiatric medication being left to the point of obstruction and rupture, to poor management of long term physical conditions, to late cancer diagnoses – diagnostic overshadowing can kill.

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What a criticism of recovery is – a discussion

A: Sometimes it concerns me that there is a straw man about what a criticism of recovery is.

If we take the biomedical model view (that is not actually that widespread but is definitely a bugbear of the ‘recovery movement’) that, I suppose going back to Dementia Praecox, there was little likelihood of ‘recovering’ from mental health issues, then I for one can acknowledge that the ‘recovery movement’ pushed the possibility of ‘recovering’ out of that belief.

I would argue, as I said above, that this ‘never recover’ model was less wide spread than the myth would have, but it did exist. I was told by at least one person in the early nineties after being diagnosed that my life was over take my pills and sign on, but many others were very encouraging right from the start.

However, thinking of talking to founders of this group, my criticism was that austerity would make recovery harder.

But it’s not rocket science. This knowledge base goes back to Durkheim and his research in changes in suicide rates. And as such given the time it takes to gather data, there will be evidence to either condemn or vindicate us on changes in recovery rates in five years or so. Obviously the data will be scattered, open to interpretation, there will be methodological differences and ideological spin. But I am willing to state here and now my money will be that there will be sufficient evidence (if there isn’t already) that austerity has worsened recovery rates.

I would also argue that there is room for a discourse analysis that looks at how ‘metalanguage’ of recovery policy after acknowledging people can recover but then denying the effects of the economy and austerity policy then becomes more punitive, which personal testament in this group has borne witness to.

B: My perception is that ‘never recover’ was not as widespread as sometimes promoted by certain factions.
Now that’s swung to the polar opposite, no one is permitted to have long term issues or refer to them as probably permanent.
Now you will & must recover, you are obligated to and regardless of context and the political operating system we live in.
Austerity, neonormative neorecovery with fixed outcomes as we have does make whatever we view as ‘recovery’ (if it’s a concept you subscribe to) impossible for some folk.

I never subscribed to recovery at any point before austerity, for me there was something malleable about it which would always fit a self-serving agenda regardless. It always felt like a dodgy car to me. I’m aware that’s probably a minority perception, that more of us saw something good it which changed over time. #ideologydar

A: I suppose for me, I hate being ‘unwell’ (obviously), so the idea that I could recover was for me a massive a driving factor, and indeed I have been a ‘lot’ weller than now. My breakdown in 2011 was devastating for me, due to having got so much better before.

But I do agree, especially in hindsight, that the idea of recovery is somewhat malleable, and now I am 9 years into what was originally a PhD level research project, I can recognise it is an issue of what is called subjectivity too. I was obviously aware of that before 2009 or I wouldn’t have come up with the research!

And I do still so much want to live without ‘voices’. But I am more sanguine now.

B: For me I looked up to activists who were out there and living but still at times really going through it. None of them made any reference to ‘recovery’. If anything I felt greater acceptance of the ebb & flow.
How do recovery poster boys & girls come back from a major hitting of the deck now?
Public speakers didn’t have to have recovery stories then so we could rise & fall.
I found living with voices easier by accepting them as a permanent feature. The depressive sludge’s and psychotic anxiety (I’d find that useful as a diagnosis!)and paranoia are much harder to deal with.

A: I have (ironically) been arguing with my voices that whilst I would rather not have voices, they are not my ‘mental health’ issue, it is as you say all the other stuff. I am fully aware from past experience that when I deal with the other stuff the ‘voices’ lessen as a consequence anyway.

Another issue I would say is the difference in focus of whatever ‘recovery’ version people subscribe to is an issue I was reading earlier about in Gregory Bateson on epistemology problems in therapy, where focusing on ‘saving’ individuals is kind of invalidating in itself (and given psychosis is often related to ‘being invalidated’ kinda exploitative and dodgy), what is needed, that we do in this group, is to look at the conditions of ‘possibility’ of at least living a more ‘meaningful’ life, which of course is a political project, going back to Aristotle and the relation of the ethical life to the ‘polis’.

B: ‘Meaningful’ has changed now, it’s productivity.

Just been discussing how the current austerity violence can be so damaging that with each punch there’s lasting damage we don’t all recover from, like incremental losses, where your revised 100% drops to 80, then 60 and so on.

A: Definitely ‘violence’ is an accurate word.

See that’s it for me now. I am no longer looking at what I can get ‘back’ to, that ‘me’ is gone for good, but what else I can become. For that reason I have no interest in ‘recovery’. But I do want to feel ‘better’ than I do now.

B: Yes I know I can’t regain the former me and the precarity I live within means I can’t feel ‘better’.

Regarding austerity violence there’s a clear ‘before and after 2010’ difference and in profound ways.
The stasi-like culture of fear, threat. The fact that people are paranoid for feeling potential targets. Precarity with threat erodes sense of self and agency in a particular way.

B: Very much have experienced the same.

C: The hurdle to achieve the idea of recovery seems ridiculously high now the loose definition of it equates with work and a very superficial idea of economic independence.

Many I know went through ups and downs, hell and back as a personal, emotional journey, with stigma of course but not quite as much threat of destitution over them. It wasn’t a complete social duty to ‘recover’ as now.

Fear as a motivator is a huge driver in this culture. That many of us live with more than enough fear anyway seems crazy; that the imposition of recovery for fear of being destroyed is how it is.

What is recovery anyway? Life by its very inevitable shuffle to the grave is killing me, how do I ‘recover’ from that?

D: I have been rereading ‘Recovering Sanity’ by Edward Podvall and his ideas about madness/psychosis and recovery are very relevant and in opposition to the social duty to ‘recover’. Thank you for helping to clarify what is currently happening in the extremely harsh world of mental health services today.

I’m all for taking stuff back a step and highlighting the fundamental misuse of a decent enough idea of helping those that can to do……just wish those of us who can’t were not nailed up as ‘not trying’

B: Or ‘clinging to diagnosis’, ‘sick role’, bio orientated, extreme leftist.

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Are smoke free hospitals allowed to take and destroy inpatients cigarettes and lighters?

[Click on the above embedded tweet to view Twitter]

Here are the attachments sent by the medical director of Barnet, Enfield and Haringey Mental Health NHS Trust following our twitter conversation regarding the destruction of patients property as part of their smoke free practices>

CQC_briefguide-smoke free jun17

Protocol on the use of e-cigarettes and vaporisers circulated

Smoke Free Policy final

Smoke free report june17 sent

WARD NOTICE example