suicide

And the beat goes on

/ Siobhan O'Dwyer

The findings from my first collaboration with European colleagues were published this week. This is a significant milestone for me, because it’s exactly the kind of collaborative, international research I was pursuing when I packed up my life and moved to the UK just over a year ago. More importantly, however, it’s a significant contribution to a growing body of research on suicide and homicide risk in people caring for family members with dementia.

My previous research showed that 1 in 6 carers had contemplated suicide in the previous twelve months, that only half of them had ever told anyone they felt this way, and that 20% of them were likely to attempt suicide in the future. This research also found no difference in the rate of suicidal thinking experienced by carers supporting a person with dementia at home, carers supporting a person with dementia in a nursing home, and carers who had been recently bereaved. These were ground-breaking findings and they generated significant interest from the community, the media, playwrights, and other researchers. But there was still so much we needed to understand.

In particular, the research was cross-sectional, so we were only capturing suicidal thoughts at one point in time. Consequently, we didn’t know how thoughts of suicide changed over time and whether carers who thought about suicide after the person with dementia moved into care, or after they died, had also thought about it while caring at home.

This new research addresses that issue. The article has been published ‘open access’, which means you can read the entire thing here for free, but to summarise briefly:

  • The study followed almost 200 carers in the Netherlands for two years, none of whom had depression or anxiety at baseline
  • Over the 2 year period, 40% of carers developed depression and were assessed for thoughts of suicide
  • 12% reported thoughts of suicide, with one third of those reporting suicidal thoughts at multiple time points
  • Thoughts of suicide were seen in various patterns, including only before the person with dementia was admitted to a nursing home, before and after the person was admitted to a nursing home, only after the person was admitted to a nursing home, and after the person with dementia died.

These findings support my previous research and show the incredible toll that caring can take, particularly at key transition points such as institutionalisation and death.

What they also show is that thoughts of suicide are not unique to Australian carers, but rather appear to transcend social, cultural, and political boundaries. Although more research is required to understand how the health and social care policies of different countries might influence suicidal thinking, this is another important step toward understanding and preventing suicide-related thoughts and behaviours in family carers.

It is heartbreaking to do research that shows, time after time, how little the world cares about carers. They are the invisible scaffolding that holds up every part of our society and our communities would crumble without them. This research is only a small contribution to efforts to recognise and support the wonderful work of family carers, but, added to my other work and that of my colleagues around the world, I hope it is a meaningful one.

—

As ever, nothing good is done alone. I am indebted to Dr Karlijn Joling, Professor Cees Hertogh, and Professor Hein van Hout, who conducted the research that provided data for this study. I am particularly grateful to Karlijn, who led the analysis of the data and was a joy to write with. Karlijn, Cees, and Hein share my passion for research that cares and I look forward to our continued collaborationsl

 

Suicide, Euthanasia, & The Bit In Between

/ Siobhan O'Dwyer / 2 Comments

I wrote the following a year ago, but, for various reasons, didn’t post it. Reading Professor Brian Draper’s excellent op-ed on older male suicide today, I decided the time was right to share my reflections on these complicated issues.

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I spend a lot of time thinking about death. It’s kind of an occupational hazard. But lately I’ve been thinking a lot about suicide and euthanasia, and the murky area in between.

The dementia research that my colleagues and I conduct focuses on quality of life, particularly for people living in residential aged care facilities. I’m yet to visit one of these facilities and not cry in the car on the way home. Similarly when I talk to families who are caring for people with advanced dementia at home, my heart breaks. Families says things like “She wouldn’t want to live like this”…. “We wouldn’t let an animal suffer, but he has to”… “Hopefully by the time I get to that stage, euthanasia will be legal”. Dementia’s a bitch (as are many terminal illnesses) and people want the option to die with dignity, so I’m definitely pro-euthanasia.

But I also conduct research on suicide. In that research I encounter people who are isolated, trapped by circumstance, or in terrible psychological pain. I also hear stories of families devastated by a loss they didn’t see coming and cannot understand. Suicide’s a bitch and the tragedy is that it could often have been prevented. So I’m definitely anti-suicide.

But can you be pro-euthanasia and anti-suicide? At their core they’re both about ending a life and many would argue that  there is no difference. From my perspective though, the difference comes down to compassion and suffering. Euthanasia is about offering compassion; suicide occurs in the absence (or perceived absence) of compassion. Euthanasia is about alleviating suffering when all other options have been exhausted, while the suffering that leads to suicide can often be alleviated with psychological therapies and better support systems. I think it’s possible to be pro-euthanasia and anti-suicide – to recognise that there is no dignity in dying a slow, painful death, while simultaneously acknowledging that we can do more to support people for whom an early death really would be a tragedy.

What concerns me is that the current public debates seem to suggest that you can only support one or the other. Euthanasia and suicide have both had a lot of coverage in the Australian media lately. The suicide prevention campaigners have set an ambitious goal of reducing suicide rates by 50% in the next 10 years and programs like RUOK Day and Mates in Construction are helping to normalise conversations about suicide. This is a good thing. At the same time, Philip Nitschke and other euthanasia campaigners are continuing to push for laws that will allow doctors to openly support euthanasia for patients who are terminally ill. This is also a good thing. Yet neither side seems willing to acknowledge the overlap in their work. Not every suicide is a preventable tragedy and not every act of euthanasia occurs when all other options have been exhausted. Some suicides might be better described as euthanasia and some acts of euthanasia as suicide.

So what can we do? To be clear, these are merely my reflections, from where I sit right now, this very minute, informed by the experiences that have brought me here. And as such, they are no more or less valid than anyone else’s. I’m also incredibly mindful that this debate takes on new complexity in the context of dementia, where issues of capacity and consent are complicated by cognitive impairment (see here, here, here, here, and here for more on this). But I would like to encourage a public discourse that acknowledges that death – like most things in life – exists on a spectrum. Some deaths are bad, some deaths are good, most lie somewhere in between. If our ultimate goal is a good death, suicide prevention campaigners need to acknowledge that until euthanasia is legalised, they will never be able to prevent all suicides. And euthanasia campaigners need to work harder to develop safeguards and referral pathways for people who could be better supported in other ways.

To Wong Foo, Thanks For Everything, Julie Newmar

/ Siobhan O'Dwyer

I woke up at 4am this morning full of dread. My colleagues and I had recently conducted a study of homicidal ideation in family carers and it was about to hit the press. I was terrified that dodgy journalists and click-hungry editors would twist the story, shaming carers and making it even harder for them to ask for or receive the support they need. I was worried that the carers who trusted me with their stories would think I’d sold them out and that the advocacy organisations I work with would regret ever having supported the research.

It’s now almost 8pm and I’ve barely been off the phone. I’m exhausted, I’m hungry, I’m pretty sure I smell, and I am completely overwhelmed by the positive response. From the first story in the Sydney Morning Herald, to an interview with The World Today that I did in my dressing gown, every journalist I’ve spoken to has been respectful, cautious, and genuinely concerned about the wellbeing of carers. Even the outlets that are not normally known for their tact have been incredibly compassionate. 2GB’s Chris Smith, for example, sent a fruit basket to one carer who called in, because he felt so helpless in the face of her despair. And the fact that this was the Most Read story on The Age website today is testament to just how important these issues are!

It’s been a privilege to spend my day talking about carers and the amazing work that they do, raising awareness of the dark times, and encouraging a public discussion about how our society thinks about care. I’ve spoken to journalists from Tamworth to Toorak and I want to send a heartfelt thanks to every one of them for helping us raise the profile of carers and being brave enough to have these difficult conversations without resorting to nasty headlines and cheap clickbait. I especially want to thank those who gave carers the opportunity to call in and share their stories on air – it was compelling, heartbreaking, and a thousand times more powerful than anything I said.

But now my mascara is sliding down my face, my throat is sore, and it’s time for bed. Tomorrow I will get up and keep fighting the good fight. Because carers are worth it!

It’s Complicated

/ Siobhan O'Dwyer / 3 Comments

While conducting research on suicide risk in family carers of people with dementia, my colleagues and I received a note from a participant that said You asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I’m caring for. Naturally this raised a lot of questions and concerns and we decided to embark on a study of homicidal ideation in family carers. The findings from that study were published this week and I thought I’d take the opportunity to share them here and discuss the implications.

Here’s a brief summary:

  • We interviewed 21 Australians providing care for a family member with dementia.
  • Two reported actively contemplating homicide while caring and four expressed a passive desire for the care recipient’s death.
  • When asked about homicide, four carers talked about euthanasia.
  • Thought of homicide and passive death wishes were the result of physical and psychological fatigue, an unwillingness to place the person with dementia into residential care, self-defence, isolation, and a sense of being trapped in the caring role.
  • Thoughts of euthanasia were framed in terms of compassion, quality of life, dignity and respect for the person with dementia.
  • None of the carers who had contemplated homicide or had passive death wishes had ever acted on their thoughts.
  • Those who spoke of euthanasia were frustrated at the lack of legal options, but adamant that they wouldn’t take matters into their own hands.
  • All the carers who reported homicidal thoughts or passive death wishes were women.
  • None of the carers who had contemplated homicide or had passive death wishes had ever shared their thoughts with anyone.

To our knowledge there has been no previous research on homicidal ideation in family carers. What previous research has shown, however, is that up to 40% of completed spousal homicide-suicides among older adults are perpetrated by someone caring for a partner with a long-term illness or disability. By asking carers about homicidal thoughts while they are caring, the current research allows us to better understand the factors that place people at risk and identify ways to prevent these sort of deaths in the future.

Although thoughts of homicide do not necessarily lead to homicidal behaviour, the fact that some carers are contemplating homicide is a cause for concern and reflects the high level of distress that many carers experience on a daily basis. Unfortunately, some people will be quick to use this work to shame carers who contemplate homicide. Although I don’t condone violence or abuse, I also don’t want to see carers vilified. The vast majority of carers are amazing people, doing an incredibly difficult job, with very little support. So let’s use this research to help them see that they’re not alone and help them find the support they need. Those on the frontline – GPs, social workers, nurses, pharmacists, aged care providers, and advocacy organisations – all have a part to play in identifying and supporting carers who are struggling. These are not easy conversations, but they are important ones.

I think it’s also important to recognise that these findings are indicative of a bigger social problem. It’s easy to think of dementia and caring as personal issues, but they are social, political, and economic issues. In Australia alone there are more than 300,000 people caring for family members with dementia and if they all stopped tomorrow, it would cost the government more than $30 billion a year to replace the care they provide. Carers make a significant social contribution, but much of the stress they experience stems directly from a lack of social, political, and economic support — delays in the dementia diagnosis, a lack of access to quality respite care, a lack of understanding from employers, and the challenges of navigating the aged care system, just to name a few. So while we must work to identify and support individual carers who are contemplating homicide, we must also take action at a higher level, advocating and agitating for a social, political, and economic framework that makes caring a less stressful and more sustainable experience.

The overlap between homicide and euthanasia in this study also highlights the need for a serious public conversation about the right to die with dignity.

As this research gets disseminated – particularly via the media – the findings may be taken out of context, oversimplified, or hijacked. But homicidal ideation in family carers is a complex phenomenon – it cannot be reduced to soundbites, it must not be used for political gain, and there is so much about it we still don’t understand. Ultimately I hope that this research will start important conversations about caring and its role in our society. I also hope it will lead to further research on homicidal ideation in carers (including quantitative studies, comparisons across countries, and research on people caring for family members with other illnesses and disabilities) and help to facilitate the social, political, and economic changes that are needed to better support people with dementia and their families.

If you’d like to read the full paper and have institutional access, please go to the journal website. If you don’t have access, please contact me for a copy.

If you or someone you know is contemplating homicide or suicide, or needs urgent support, please contact Lifeline on 13 11 14, The Suicide Call Back Service on 1300 659 467, or the crisis line in your area.

Caring ‘Til It Hurts

/ Siobhan O'Dwyer / 4 Comments

This piece, written by me, was originally published in the Australian Journal of Dementia Care (Volume 3, Issue 6, December 2014/January 2015, p33-34) under the title Caring ‘Til It Hurts: Suicide Risk in Family Carers. It was designed to introduce aged care staff, health professionals, and service providers to the issue of suicide risk in family carers and is reproduced here with permission. For ease of reading I have removed the references, but I am happy to provide them on request. 

 

The first thing I noticed about Ken* was his arms. Thick and tanned, they were the kind of arms that could carry you out of a burning building without breaking a sweat. Arms made strong by years of physical labour, first on the farm and then on the battlefield. Arms that now spent their days lifting. Lifting her in and out of the car, on and off the toilet, in and out of the bed they no longer shared. Always lifting.

As Ken and I spoke, I watched the arms. At first they were crossed firmly over his chest – the body trying to stop the man from giving away too many secrets. After a while the shoulders dropped and the arms uncrossed, but the hands remained firmly clasped – the body only prepared to meet the man halfway. But after two hours, the arms gave up. The man cried, the body shook, and the secrets were revealed.

****

More than 200,000 Australians currently identify themselves as the primary carer for a family member with dementia and one in four of them provide in excess of 40 hours care per week. As a result of the cognitive impairment and behavioural problems, caring for a person with dementia is acknowledged to be more demanding than caring for someone with a physical disability and this intense work can lead to physical and mental health problems. Rates of anxiety, depression, and hopelessness are all higher than average in family carers and pain, fatigue, and chronic health conditions are also common.

Although depression, anxiety, hopelessness, pain, and chronic disease all have been linked to suicide in the general population, until recently there had been no research on suicidal ideation or suicide risk in family carers.

This article provides an overview of research my team and I have recently conducted on suicide risk in family carers and provides practical suggestions to help staff in clinical and community practice identify and support carers at risk.

Why suicide? Why now?
Although academic research on the physical and emotional experiences of carers only dates back to the 1950s, Harriet Beecher Stowe and Louisa May Alcott were writing about the tribulations of caring in the 1800s and archeologists have found the remains of Neolithic adults who could not have survived childhood without dedicated family care. Caring is clearly not a new phenomenon and my colleagues and I were intrigued that suicide had not been the focus of more research.

In our careful searches of the academic literature we were able to find only one previous study of suicidal ideation in family carers of any sort (not just dementia). In 1997, Cynthia Rosengard and Susan Folkman reported that more than 50 per cent of gay men caring for a spouse with AIDS had contemplated suicide. Interestingly, experiences of suicidal ideation were unrelated to the carer’s own HIV status. The only other evidence we could find came from studies of homicide-suicides committed by older adults. Although homicide-suicides are rare, in those studies up to 50 per cent of homicide-suicides were committed by spousal carers, with approximately 20 per cent of those caring for a spouse with dementia.

What did we do? And what did we find?
We started our research by interviewing a small group of just nine carers (four men, five women). We wanted to get a sense of how many carers had contemplated suicide and the factors that might be associated with suicidal ideation, before we embarked on a larger project.

Four of the nine participants had contemplated suicide while caring for a person with dementia and Ken (referred to at the beginning of this article) was one of those four. For the other carers, suicide was a way to escape the relentless demands and overwhelming fatigue of caring (or, as one participant described it, “to get off the merry-go-round”). For Ken, it was about ensuring that his wife would always be well cared for. He said: “A couple of times there I thought about how I could get away with bumping myself off…because my insurance and all my stuff would’ve set my wife up forever.” Although none of the nine carers had attempted suicide, two had made preparations.

Our next study included 120 family carers who completed an anonymous survey about their health and well-being. When we analysed the data we found that one in four had contemplated suicide more than once in the previous 12 months. Of those who had contemplated suicide, only half had ever told someone and one-third said they were likely to attempt suicide in the future. When we compared those rates to population averages, we found that family carers were contemplating suicide at more than eight times the rate of the general population.

Which carers are at risk?
In our first study, there were three factors that appeared to put carers at risk of suicide: mental health problems prior to becoming a carer; physical health problems while caring; and intense conflict with family or professional care staff.

For the carers with pre-existing mental health problems, the long hours, demanding physical labour, and isolation of caring exacerbated their symptoms and made it difficult for them to cope with the challenges of caring or to seek help.

For those with physical health problems, suicidal thoughts cropped up when the condition was aggravated by the caring role, there was ongoing pain, and time for self-care was limited. For the carers with physical health problems, an inability to seek help (due to exhaustion) went hand-in-hand with an unwillingness to seek help for fear of being seen as incompetent. Finally, for those carers who faced intense interpersonal conflict, it was the resulting isolation, helplessness, and vulnerability that led to thoughts of suicide.

In our larger study, carers who had contemplated suicide reported more behavioural and psychological symptoms in the person with dementia and, for their part, stronger negative reactions to these symptoms. They were also less confident in their ability to access support services, less optimistic, and less satisfied with the social support they received. They had higher levels of burden, hopelessness, anxiety, and depression, and made greater use of dysfunctional coping strategies (like alcohol or drug use). When we put all these factors into a statistical model, depression was the only significant predictor of suicidal ideation.

What about resilience?
Our research revealed that one in four carers had contemplated suicide and this is certainly a finding that warrants serious concern. On the flipside though, three out of four carers had not contemplated suicide and by studying these carers we can identify the factors that promote resilience and develop targeted interventions to support carers at risk.

In our first study, the factors that fostered resilience were: the use of practical coping strategies; personal characteristics like determination and flexibility; social support; and faith.

Coping strategies such as seeking out information and support, maintaining hobbies, connecting with other carers, and using respite services all allowed carers to recharge their batteries and ameliorated the impact of caring on their physical and mental health.

Carers who could draw on internal reserves of compassion, determination, and flexibility were more able to accept the challenges of caring and responded more proactively to specific stressors.

Social support from family and service providers gave carers time to engage in self-care and the most resilient carers were those who could communicate assertively about the sort of support they needed.

Finally, faith provided carers with a framework for reflecting on their experiences, seeing the ‘bigger picture’, and recognising that the caring role had a purpose, was finite, and would eventually pass.

In our second study, the low rates of optimism, self-efficacy, and satisfaction among carers who had contemplated suicide suggest that these factors may also play a role in resilience.

What can you do?
Although our research is continuing, we now know that carers are indeed at risk of suicide and, as a community, we need to work to address this issue. Clinicians, allied health professionals, care workers, and service providers are ideally placed to identify and support carers at risk, but many are, understandably, apprehensive.

To ensure that clinical, community, and residential care staff can provide the best possible support, they need to know how to ask about suicide and where to refer carers at risk.

  • Living Works offers Applied Suicide Intervention and Skills Training (ASIST) courses all around the country and these two-day courses provide an excellent introduction to suicide and suicide prevention, including role-playing the difficult conversations. More information is available at: livingworks.com.au/Training-Programs.html
  • Carers in crisis should be referred to Lifeline or the Suicide Call Back Service. Lifeline (13 11 14) is a telephone support service that provides 24-hour, confidential, crisis counselling. The Suicide Call Back Service (1300 659 467) also provides 24-hour telephone counselling and offers six free follow-up sessions with the same counsellor, at any time that suits the caller.
  • Carers experiencing mental health problems should also be encouraged to talk to their GP, who may be able to provide a referral for subsidised sessions with a psychologist or psychiatrist.
  • Finally, health professionals, care workers, and service providers can also help to prevent carers ever reaching crisis point. As Ken’s case illustrates, a cup of tea and a listening ear can go a long way to making a carer feel valued and supported. Providing quality respite care, helping carers connect with services, and fostering a community of carers can also help to ease the load.

****

As Ken showed me to the door, I looked again at the arms. They were swinging gently by his sides, unburdened now of the story they had carried for so long.

*Not his real name.

Lifting & Leaning

/ Siobhan O'Dwyer

This piece, written by me, was originally published in the Australian Ageing Agenda, under the title ‘Promoting Good Mental Health for Carers’. It appeared as part of AAA’s focus on Mental Health Week and is reproduced with permission.

I read an article earlier this year in which Joe Hockey was described as having the toughest job in the country. After spraying a mouthful of coffee over my newspaper, I wondered what the country’s carers would think of that. Caring is a tough gig, but few and far between are the carers who fly business class, smoke cigars, or can expect to retire with a pension in excess of $100,000 per year.

Instead, carers spend their days lifting, showering, dressing, toileting, feeding, medicating and managing; often at the expense of their own physical and mental health. Carers experience higher than average rates of depression, anxiety and hopelessness, and my own research has found that family carers of people with dementia contemplate suicide at eight times the rate of the general population. In Mental Health Week, it is important we take time to acknowledge family carers – the people who really have the toughest job in the country – and explore how we might better support them in their role.

While systemic change takes time, there are four things we can do right now, this week, to promote good mental health for carers:

  1. Value their contribution: Feeling valued is an important part of good mental health and we can all do something to show carers we value the contribution they make to our community. If you are a neighbor, drop off a home-cooked meal. If you are a service provider, make time for a cup of tea and a chat. If you are a politician, arrange a consultation with the carers in your electorate.
  2. Encourage self-care: Self-care is the key to good mental health, but few carers can find the time. If you know a carer, offer to relieve them for a few hours this week so they can see a movie, get a massage, or go for a swim.
  3. Recognise carers as experts: Carers have a wealth of knowledge and experience, but they are often ignored or relegated to the waiting room. Health professionals, service providers, and other frontline staff should make a commitment this week to see carers as partners in care. This will empower carers and ensure the best possible outcome for the care recipient.
  4. Tackle stigma: The stigma that exists around suicide and mental illness can be a real barrier to help seeking. Many carers also encounter stigma associated with the disability, dementia, or other condition that affects their care recipient. This week, support the journalists, artists and film-makers who are committed to raising awareness, and take a stand against the media outlets that foster ignorance and fear.

In his Federal Budget speech this year, Joe Hockey told us it was time we all became “lifters, not leaners”. Carers are some of the best lifters I know, but in Mental Health Week, let’s lean in and give them a hand.

Carers who are contemplating suicide are encouraged to call Lifeline on 13 11 14 or the Suicide Call Back Service on 1300 659 467. Carers who are experiencing depression or anxiety are encouraged talk to their GP about subsidized sessions with psychologist.

On Voyeurism and Tragedy

/ Siobhan O'Dwyer / 2 Comments

On a cool Friday night in downtown Brisbane, people gathered to hear a famous author speak. Predominantly middle-aged and middle class, the stylishly attired crowd talked amongst themselves about their favourite books and rushed forward when the doors opened, eager to sit near the front. They listened closely as the author spoke – laughing, sighing, gasping in shock. And when she finished, they queued and asked her to sign the inside cover of her latest work.

This was my first time at a Writers Festival and the whole thing made me deeply uncomfortable. Why? Because the author was Helen Garner and the book was This House of Grief, the true story of a man convicted of killing his three children by driving his car into a dam.

To be clear, I admire Garner. As a writer she has an amazing ability to capture the complexities and discomfort of life’s darkest moments.  But there was something voyeuristic about the crowd that came to hear her speak. This was their Friday night entertainment. They had dinner reservations afterwards. They wanted an autographed copy of the book!

As I caught the train home, I wondered what it was about homicides, suicides, and other tragic events that brought out the voyeur in people. What makes people trawl newspapers and websites looking for the ‘exclusive interview’ with the grieving widow? What makes them watch the ‘dramatic reenactment’ on prime time television? How are they able to set aside the fact that these are real people and put a bookmark in when it’s time to pick the kids up?

But perhaps I judge too harshly. Perhaps it isn’t voyeurism, but simply a desire to understand the darker parts of human nature. Perhaps, because we are often shielded from the darkness, people struggle to know how to express their interest or concern appropriately. Perhaps a Writers Festival is a safe space to discuss the issues with like-minded people. And yet, the autographs…

For my part, I was interested in Garner’s experience as a researcher and writer, and was hoping to find a connection with someone who’d been where I was. I had recently finished analysing data for a study of homicidal ideation, a follow-up to earlier research on suicide risk in family carers. When I’d listened to the recordings of the research interviews, I’d had to wash dishes, knit, or draw. The repetitive, physical tasks kept my body occupied while my mind swam in the tragedy. Without them, the flight-or-fight response would have kicked in and I’d have turned off the tapes. Unlike the voyeurs at the Writers Festival, I would have given anything to look away from the car crash.

When I bought my copy of This House of Grief, the bookseller made a point of telling me how traumatising I would find it; as if being traumatised was a badge of honour. When I told her I did trauma for a living, she clicked her tongue and moved on to the next customer. It was as if she’d invited me to an S&M club and when I told her I was the warden of a detention centre, I was the one who’d crossed the line.  I wondered if what the voyeurs want is just enough tragedy to be titillated. Just enough to get a whiff of the humanity, but not so much that they have to get their hands dirty. They want grief and trauma, but only if it doesn’t pull them too far out of their comfort zone. And perhaps this is why Garner’s books sell – because she’s already done the hard work.

But here’s the thing – I didn’t find This House of Grief traumatic. I just found it depressingly familiar. For those of us who work in this space – researchers, doctors, lawyers, journalists, social workers – the darkest moments are all too common. We see them daily. They aren’t titillating anecdotes to tell at the next dinner party, they are big issues that we will spend our careers trying to address. And when the voyeurs have moved on to the next book, the next Writers Festival, the next ‘award-winning two part series’, we will still be here. Not watching from a safe distance, with cocktail in hand, or reading on the couch with a cup of tea and a Kit Kat, but working in the trenches to support people and shine a light on the darkness.

Sitting with the discomfort (in research & in life)

/ Siobhan O'Dwyer / 1 Comment

Nothing kills a dinner party quite like telling people what I do for a living. Dementia, carers, and suicide are not exactly the stuff of light-hearted conversations over cocktails. They are difficult, messy, emotional, and often controversial.

My job as a researcher is to make sense of the emotions, to bring order to the messiness, and offer insight into the controversy. As a researcher I’m trained to analyse, categorise, and classify, and to write concise narratives that show a logical, linear progression of ideas and experiences. But life isn’t logical. Or linear. Or easy to categorise. Life is confusing, organic, and determined to defy categorisation.

So I (and my dinner party companions) must learn to ‘sit with the discomfort’. I first heard this nifty little phrase in a presentation by Susan Beaton at a conference on suicide prevention. Beaton was talking about how clinicians use risk assessment tools to avoid actually engaging with people who are feeling suicidal. Because real engagement – really listening, really connecting with someone else’s pain – is exceedingly uncomfortable. Her thesis was that if clinicians were able to sit with their own discomfort, they might actually be able to do meaningful suicide prevention.

As a researcher who was, at that time, wading through hours of interview recordings in which dementia family carers talked about thoughts of suicide, this was a revelation. I realised that in order to do justice to these stories in my work, I first had to learn to sit with my own discomfort.  More recently I’ve been able to extend this concept to my writing – learning to sit with the discomfort that comes from not writing a nice linear journal article with clear conclusions, but instead writing an article that reflects the reality of my participants’ lives and is okay with a conclusion that effectively says “I don’t know what this means”.

But sitting with the discomfort isn’t just about suicide research and prevention. It can be useful in so many other research contexts and in daily life. Sitting with the discomfort is at the core of the contemporary mindfulness movement (including Acceptance & Commitment Therapy) and vipassana meditation; Toni Bernhard has written beautifully about its importance for people with chronic conditions & their carers; and much of Brene Brown’s great work also embraces this approach.

So the next time you encounter mess, pain, or controversy in your research (or your life), ask yourself: Why is this making me uncomfortable? Can I sit with it for just a little bit longer? Can I observe it without trying to fix it or run away from it? Can I find a way to talk or write about this that honours the messiness and confusion? And, as with all things, remember moderation is the key. Because sometimes not sitting with the discomfort is okay too.