Article
Ageing
Care
Change
5 min read

Delicate, fragile, frail: how we cope when we age

The insights and analogies that help.

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An old woman wearing a shawl looks pensive.
Valentin Balan on Unsplash.

“Who could dissect a portion of the human frame without marvelling at its delicacy, and trembling at its frailty?” mused preacher Charles Spurgeon in the nineteenth century. Songwriters, artists, authors and surgeons alike are fascinated by frailty. Within, beneath and beyond that fragile frame though, could there be a deeper reality, waiting to arise – and endure? 

Fragile Lives is the ‘heart-stopping memoir’, operation by operation, of heart surgeon Professor Stephen Westaby. “The finest of margins,” he writes, “separates life from death, triumph from defeat, hope from despair – a few more dead muscle cells, a fraction more lactic acid in the blood, a little extra swelling of the brain. Grim Reaper perches on every surgeon’s shoulder.” 

To what shall we compare this fragility of frame? - which means we can shatter sudden as glass, our “breath becoming air” in the blink of an eye? (Paul Kalanithi, a young neurosurgeon, called his memoir When Breath Becomes Air as he fought his own battle with cancer). A snowflake? A spider’s web? A butterfly wing? In Dutch still life paintings, the transience of life is variously depicted in dry, fallen withering petals, rotting fruit, and a glass vessel, like a vase. At some funeral services, it is said that we are made from dust, and to dust we shall return. Elsewhere in the Bible, we are likened to a mist that appears for a little while and then vanishes, or to a flower that withers away, a fleeting shadow that does not endure. Our days are a mere handbreadth, our life but a breath, writes one Bible songwriter. 

Medics talk more commonly of frailty than fragility – and it’s not just a byword for old age. According to the British Geriatrics Society, not all old people live with frailty; not all people living with frailty are old, though age is a recognised risk factor, with nearly 40 per cent of adults aged 85-90 being frail. Described as a vulnerability to external stressors which can result in sudden marked deterioration in function, frailty might feature as a combination of falls, immobility, delirium, incontinence, and increased side effects of medications, suggesting the body is struggling to cope. “A minor infection or minor surgery results in a striking and disproportionate change in health state – from independent to dependent, mobile to immobile, or lucid to delirious,” writes a team of doctors in The Lancet

Frailty is a sign of advanced biological rather than chronological age. Often, it’s an unwelcome term, with consultant physician Patricia Cantley noting that, “from a patient or relative’s point of view, the word frailty seems to be at best somewhat vague and at worst, derogatory and demotivating”. She prefers to talk in terms of paper boats. Picturing young healthy patients as little tugboats of wood and steel, built to withstand storms, she likens the frail patient’s clinical situation to a paper boat, which can sail the sunny seas, but is soon buffeted and may be brought down by ‘medical winds’. 

Encompassing also psychological and cognitive symptoms alongside the physical, frailty is not a fixed state, nor is decline in mind and body inevitable once frailty begins. Seen increasingly as a dynamic spectrum, reversal of frailty is sometimes possible; the paper boat being, to a degree, storm proofed and made to chart a different course. According to Dr John Travers, professor of public health at Trinity College, Dublin, twenty minutes of daily exercise can reverse physical frailty and build resilience in over 65-year-olds, while others suggest that movement based mind-body therapies such as tai-chi and yoga can strengthen both mind and body. Could there also be something of a spiritual strengthening in the frail patient? As the body decays and declines, could the soul, the spiritual self, enlarge, emerge and ultimately endure as life ebbs away? This was certainly the sentiment of Paul, one of the early church leaders, in the Bible, who, after much suffering, wrote: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day…we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 

Her late Majesty Queen Elizabeth II was seen on our television screens to diminish physically in her last days, her purple hands, tiny frame and walking cane causing concern among viewers. She was, at her funeral, described simply as “our sister Elizabeth”, her small coffin dwarfed by pageantry and a crowd of 2,000 including presidents and kings. And yet, the former Moderator of the Church of Scotland has revealed that she talked much of her Christian faith in her dying days, while her funeral was an explosion of scripture, hymns and sermons that expressed the strength of her personal faith. “It was her way of eloquently, beautifully and powerfully speaking to me and 4.1 billion other people of her Christian faith,” writes Pastor Skip Heitzig. For me, the funeral brought to mind the tides (continuing with the theme of the sea). As the tide recedes, the waters move away from the shore, in what is known as an ebb current. As the tide rises, water moves toward the shore in a flood current. As our Queen’s life ebbed away physically, her spiritual self arose, roaring like a mighty flood. Ocean motion, in currents, waves and tides, is driven by the sun, moon and the planets. Our late Queen also looked upwards, to her God, for spiritual succour that would turn life’s ebb to a soul-flood.  

Hymnwriter Timothy Dudley-Smith sought a similar exchange, from the physical to the spiritual, the mortal to the immortal, in yet more words about boats, in his hymn “My boat so small”, based on the Breton Fisherman’s Prayer. 

“Adrift when strength and courage fail, O Spirit, breathe to fill my sail” 

And, happily, he trusts a safe voyage, finishing with - “My voyage done, all trouble past, to haven bring my soul at last.” 

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Review
Books
Care
Comment
Psychology
7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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