Explainer
Comment
Death & life
4 min read

What they don’t tell you about when someone you love dies

Sharing her experience of her husband’s death, Yvonne Tulloch charts grief’s journey and shares signposts to help. Part of the How to Die Well series.

Yvonne Tulloch is Founder and CEO of AtaLoss, helping bereaved people find support and wellbeing. 

A group of grieving friends with their hands on each others backs.
The Good Funeral Guide on Unsplash.

Turn on the news and death is all around us. Yet somehow, we think it will never happen to us.  In one sense that’s good. We have a child-like innocence that protects us from the harsh realities of life.   

A few years ago, as a church minister, I thought I knew about death.  I’d been trained to take funerals and had supported families when a loved one had died.  But it wasn’t until I was bereaved myself - when my husband died suddenly of a heart attack - that I realised how little even I knew.  

Although busy, life had been good until then.  My husband had a successful job, my own work was going well and our three children were flying the nest and finding their feet in university.  Little did I know that in one, short phone call from a colleague, our lives would change forever.   

Simon had been found dead in his hotel in Spain, and I was faced with telling each of the children and his mother, the worst news anyone could convey.  Concerned about social media the news was embargoed until all family members knew, then I had to go to Spain to find, as well as identify the body, and bring him home.  I had to work out our finances – no one knew what we had to live off – close accounts and put things in my name.  I discovered our house wasn’t insured, nor our car for me to drive, that bank accounts were frozen, and that no organisation is geared up to help.  Everyone insists on speaking to the account holder or seeing the actual death certificate before being willing to oblige.  I had a funeral and thanksgiving to organise – two big occasions in just 3 weeks - and a mountain of admin to deal with, which would be difficult at any time.  

Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.

We’ve been a death-denying culture, I now realise, for many years. With death invariably happening in hospices or hospitals, we’ve pushed death away and pretended it doesn’t happen.  Consequently, we’ve lost knowledge of bereavement and the art of support.  We’ve tended only to think about preparing for funerals and then counselling if the person isn’t doing well.  But what about all the other help that’s needed?  Understanding and support is necessary in all manner of ways.  Bereavement is one of the most stressful times of life, affecting everyone sooner or later and every part of their life.  Grief is a journey of adjustment of who we are to a new existence – one that takes a long time and never comes at a convenient time.    

At first most of us are shocked or emotionally numb; we run on adrenaline and we’re in survival mode.  At the funeral others can think we’re doing well, and we can too.  But it’s after, when the real sadness tends to hit, when the future must be faced and by then support has dropped away.   

Many of us experience a roller coaster of changing reactions and responses which we don’t recognise as us or don’t associate with grief.  

There are the physical reactions, for instance. I couldn’t eat, I couldn’t sleep, I was cold and I shook for months, I had a heavy ‘weight’ in my gut and was taken to hospital three times with suspected heart problems - our bodies are always in tune with our emotions.   

And there are the psychological reactions.  We can experience anxiety, anger and guilt; we can’t concentrate or remember, or function to do the most basic of tasks.  I kept thinking I was seeing Simon and had a psychosis which made me feel separated from the world.  We can think we’re going mad.  

Grief is a natural response to loss which we need to work through for our future wellbeing.

For me help came from two initiatives I was fortunate to find: Care for the Family’s Widowed Young Support and The Bereavement Journey course run by a church in London.  In each of these I discovered others who had been bereaved, who understood what I was going through and who helped me to navigate the alien territory I found myself in.  They also helped me to understand my spiritual responses which had been the biggest surprise.  I had never doubted my Christian faith but with bereavement, that too was challenged, and God, who had always felt present, suddenly disappeared.  I realize now that this is natural.  Grieving is a process of deconstruction and reconstruction of meaning, and therefore some of whatever meaning we had before the person died, will deconstruct as we grieve. 

Roll on a few years and I’m on the other side, running a charity helping people to understand that in our death-denying society bereavement impacts greatly, and that grief is a natural response to loss which we need to work through for our future wellbeing.  Support is needed in various ways which we direct to through our signposting website ataloss.org.  And I’m helping people myself through The Bereavement Journey course to find healing and hope, offering also spiritual support for the faith questioning I find most people have.  Unfortunately, though, because we’ve neglected death, many haven’t been supported through a bereavement in the past and are carrying loss which is unresolved.   

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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