Article
Comment
Mental Health
4 min read

We need to weep over the wreckage of mental illness

While its now OK to talk about mental illnesses, we need to weep over the harm caused and how we’ve tried to treat them, writes Rachael Newham.

Rachael is an author and theology of mental health specialist. 

 

 

A grey and white wall graffited with a tag a image of a person crumpled and crying.

Today, February 1st, is Time to Talk Day. It's part of a long-running campaign encouraging people to have open and honest conversations about mental health. It's aim is to break down the barriers of stigma and misunderstanding. It has been a staggering success - what was a fringe issue talked by those only affected by mental illness a decade ago is now part of common parlance. Mental health training is widely available, and the charity’s work has been seen to have a significant positive impact on the mental health conversation 

However, as our familiarity with the language of mental health has grown so too has the way we use it. People might talk about having PTSD after a bad date, or their friend being ‘so OCD’ about the way they organise. Unwittingly, as psychotherapist and author Julia Samuels points out, “[we have] awareness without real understanding.” 

However, awareness without understanding means we actually don’t reach those most impacted by mental illness. We know about mental health in the way we know about our physical health - but we are no more aware about the serious, sometimes lifelong mental illnesses which rob people of hope, joy and vitality - sometimes leaving them with lifelong disability.  

If you ask most people about mental illness they may tell you about depression and anxiety; the two most common mental illnesses which have become the acceptable face of mental illness. It’s reflected in the way funding is channeled to interventions that get people with mental illnesses back to work, or to NHS ‘Talking Therapies’ which offers short term psychological therapies (both of which are important initiatives) but have cut the number of inpatient beds from over 50,000 in 2001 to under 25,000 in 2022[3] which means those at the more severe end of the spectrum of mental health to mental illness are left to travel 300 miles for the care they need. 

We have to survey the wreckage that severe and enduring mental illness causes, before we can begin to rebuild a society that is kinder - without prejudice or stigma. 

Whilst it’s right that we have raised awareness about the most common conditions, we can’t ignore the illnesses which are termed ‘severe and enduring mental illnesses’ which include those such as bipolar disorder, major depression, schizophrenia and complex post-traumatic stress disorder.  

For people living with these conditions, the general mental health advice that we give; for example getting enough sleep and time outdoors may not be enough to keep the symptoms at bay. Just as general physical health advice like getting your five a day will not cure or prevent all severe physical illnesses. Medication, hospitalisation, and at times even restrictions of freedom like being detained under the mental health act might be necessary to save lives.  

These are stories that we need to hear. The debilitating side effects of life saving medications that can raise blood pressure, cause speech impediments. The injustices to confront (such as the fact that black people are five times more likely to be detained under the mental health act than their white counterparts) and the adjustments to life that those with disabilities are required to make to their lives.  

We have to survey the wreckage that severe and enduring mental illness causes, before we can begin to rebuild a society that is kinder - without prejudice or stigma. We have to listen to the perhaps devastating, perhaps uncomfortable stories of those who live with severe and enduring mental illness. The mental health npatient units miles from home, the lack of freedom, the searing - unending grief.  

Weep for the lives lost, the crumbling systems, the harm caused both by mental illness and the way we’ve tried to treat them. 

By hearing these stories, we are accepting them as a part of reality. For those of us in churches it might be that the healing didn’t come in the way we expected, it might be also be all of us accepting that the systems designed to care for those with mental illness have in fact, caused more harm. It’s seeing the injustices and understanding that we, our systems and professionals need to change our attitudes.  

Understanding and acceptance of the injustice are the way forward- that’s the only way change can come.  

It might look like standing in the rubble, it might feel too huge and all but hopeless.  

And yet in scripture and in life that is so often the only way we can begin to rebuild. 

In the book of Nehemiah, one of the Old Testament prophets who had lived in exile far away from home for his whole life, we see that upon hearing about the state of the walls of Jerusalem, before he did any of the things we expect heroes and innovators to do- he wept. In fact, it’s estimated that for four months he wept over the state of the place that had once been the envy of the ancient world.  

Perhaps we too need hear the stories and then weep. 

Weep for the lives lost, the crumbling systems, the harm caused both by mental illness and the way we’ve tried to treat them and then slowly, we can begin the work of rebuilding.  

It isn’t a work that can be done alone by a single agency much less a single person - it requires society to hear stories of the more than just ‘palatable’ mental illnesses with neat and tidy endings to the messy and sometimes traumatic stories that are there if we just care to listen to them. It might be reflected in the petitions we sign, the way we vote, the stories we choose to read. 

So ,this Time to Talk Day - I’m saying let’s continue the amazing work of talking about mental health - we need to keep talking about anxiety and depression. But let us also make conversations wider, so that they encompass the whole continuum of mental health and illness. 

 We’ve seen the difference Time to Talk can make - now it’s time to talk about severe and enduring mental illnesses, too. 

  

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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