Tag Archives: chronic disease

Living loss

I got to know Joseph * over a number of months. He was first admitted to hospital in April, when his bed overlooked the garden with trees in bud. As Spring turned to Summer he was readmitted, and when Autumn came he watched the leaves change colour and fall. Each time he was admitted he spent more time in hospital and less time at home, and we worried more about whether this admission might be his last.


Joseph had been diagnosed with Idiopathic Pulmonary Fibrosis, an incurable condition in which the lungs become progressively scarred, leading to breathlessness and functional decline. Like many patients with a chronic disease, he had opted for a coping strategy that focused on living, and trying to forget there was anything wrong. This meant that despite having symptoms for a number of years he had seldom seen a doctor, knew little about his disease or its’ likely trajectory, and had shared very little with his family. When we first met he resolutely refused to talk about deterioration, or dying. Our team respected this wish, focused on the here and now, and got him home. But we all had anxieties about how he and his family would cope as he declined, and about the difficulties of putting in place the help he was likely to need if he would not talk about the future. Over the coming months, with each admission he came to trust our team a little more, enough to have these conversations and to share his fears for himself and his family. We were privileged that he let us into his very private interior world, and we were able to help him adapt to some degree to his limitations, allowing him to focus a little more on the the things that gave his life hope and meaning.

What was apparent when talking to Joseph was that he was grieving. Grieving for the life he would not have and the things he would not do and see. Grieving for the loss of independence that he valued so highly. Grieving for the self he knew and recognised that was being replaced by an unfamiliar ill person. My Consultant used the term “living bereavement” to describe this response, which felt so right. It seemed to capture the denial, anger, bargaining, depression and finally acceptance that I witnessed in Joseph as he moved through a number of emotional responses to his illness.


Living bereavement, living loss, or chronic sorrow, was originally described in relation to parents of children with severe disabilities. It describes a state and process through which an individual suffers repeated losses due a disparity between actual reality and an anticipated or desired reality. The term has now been used in reference to adults with a number of chronic diseases including diabetes, HIV, cancer, multiple sclerosis and parkinson’s disease. No studies have focused on patients with respiratory diseases, but the principles seem highly applicable. Losses are repeated, and can be physical, emotional or social. Common examples are: loss of bodily function; loss of relationships; loss of autonomous life; loss of identity; and loss of the life imagined.

Kelly (2008) explored the concept of living loss more deeply in patients with AIDS-associated dementia, particularly the way in which people live not only through, but ‘in’ loss. She described living loss as being a “social and constituted part of liminality.” Liminality was an unfamiliar word to me, but means ‘pertaining to a threshold’ and has been applied to rites of passage such as birth, marriage, and death, as well as so called ‘marginal identities’ related to race, gender or sexuality. In this context, people experiencing chronic sorrow are said to be in a liminal space between life and death, where there is the potential for transformative experiences as well as grief.

If we are to support patients to the best of our abilities, we must engage with their individual, personal experience of illness. Ahlstrom (2007) suggests that it is important to understand and acknowledge patients’ chronic sorrow in order to support adaptive coping strategies, and to inspire hope and courage. But perhaps even more than this, we need to engage with our own, personal responses to the losses we see and feel each day. The concept of living bereavement has been explored in healthcare workers themselves, in particular in carers of older adults in a continuing care setting. Holman (2008) described how staff “articulated a trajectory of loss which they witnessed and experienced as part of their everyday work… They called this living bereavement.” Areas of particular importance were: working with shocked residents; working with grieving relatives; working with anxious residents and relatives; working with residents’ degenerating bodies and minds; and working with dying residents.


Living loss feels like a useful concept through which patients’ reactions to chronic illness can be understood. In addition, it provides a framework through which staff can understand their own emotions when watching their patients deteriorate and die. It has certainly helped me to reflect on my own reaction to Joseph and his family, to consider the emotional burden of this work, and to acknowledge the limitations of my influence on his grieving process.

Joseph died last month. He had the death that I think he wanted; in a place where he felt safe, with people he knew. His grieving has now ended, just as his family’s has begun.


If you are able to please consider supporting Breathing Matters, a charity specifically set up to fund research into IPF, and support patients and families living with the disease today.

Further reading:

*names changed to maintain patient confidentiality

Life in my shoes

On a recent set of on call shifts I met James,* who my team treated for pulmonary emboli. He was a lovely man; visits to check he was on enough oxygen to maintain his saturations and to assess his haemodynamic status were a joy, due to his easy manner and good humour.

Pulse Oximeter, for monitoring oxygen saturations

One one occasion I was with my Consultant, who had known James for a while prior to this admission. At the end of the consultation he asked a very powerful question “is there anything else on your mind?” At this point I was closing the notes folder and putting my pen in my pocket, expecting to move on to the next patient. But James  did have something on his mind.

What I have not mentioned is that James is HIV positive. He has been living with HIV for many years and facing the challenges associated with this with resolve and good humour. His current problem was not directly related to his HIV status, but as is the usual practice whilst he was in hospital he was cared for by both the general medical team, and the “immune deficiency team” who were able to advise on potential interactions with his ARVs and give other specialist input.

One afternoon James was sat in his hospital bed, chatting to a visitor who was unaware of his HIV status. One of the immune deficiency team doctors had just been to see him and was writing up notes at a nearby desk. Another doctor called across the ward “hey, are you the HIV doctor?”

This question was clearly asked thoughtlessly, with a complete lack of awareness of the potential to breach a patient’s confidentiality. James told us that thankfully his visitor had not heard, but he was concerned that this situation could happen again to someone else. He offered to talk to the doctor involved, to explain the impact of a HIV diagnosis, and the significant anxieties felt by those affected, in particular around potential breaches of confidentiality and  discrimination within healthcare settings.

This conversation made me think about my own views on HIV, and I realised that I am incredibly naive. To me HIV is just another chronic disease; requiring early recognition, lifelong support, timely treatment, and awareness of associated morbidity and mortality. In my mind, it does not differ greatly from diabetes or COPD. Of course I am aware of the additional moral judgements that go along with sexually transmitted infections in general, and that the fear of contagion from ill-informed people coupled with value-judgements on lifestyle choices make living with HIV significantly different to living with diabetes, but I have not witnessed this myself. I watch films like Philadelphia and Angels in America, and listen to anecdotes from older Consultants, and feel completely disconnected from them: the AIDS epidemic of the 80s feels like a distant bygone age. Hasn’t society moved on? Isn’t my generation more liberal?

Giant leaps have been made in the last few decades in diagnosis, treatment and life expectancy, and my professional perception of HIV as “just another chronic disease” is in many ways a sign of success in overcoming the associated stigma. But meeting James provided a stark reminder that people living with HIV still face significant prejudice. As a throwaway comment he said “the curtains around the bedside aren’t exactly soundproof, and the visitors of the patient next door didn’t look particularly pleased when they overheard someone say ‘HIV’. I’d rather not have to deal with that while I’m struggling to breathe!

HIV and AIDS gets less attention from the media in the UK than it did during the early years of the UK AIDS epidemic, but it’s far from an issue of the past. In fact, the epidemic has expanded, with the annual number of new HIV diagnoses nearly tripling between 1996 and 2005. Annual diagnoses have slightly declined since then with 6,150 people diagnosed HIV-positive in 2011. But despite rising numbers of people infected through sexual transmission, public knowledge of HIV and AIDS appears to have declined. Worryingly the UK HIV and AIDS statistics show that of the 91,500 people living with HIV in the UK at the end of 2010, approximately 24 percent were unaware of their infection. This is the result of multiple factors including a lack of physician awareness of indicator conditions, physician reluctance to test and patient fears and reluctance to get tested, in part due to myths, and negative societal attitudes.

AIDS 2012, an International AIDS Conference is being held in Washington this weekend. Part of the extensive programme includes the screening of a film made in Hackney, London by the charity Body and Soul, whose message is optimistic and inspirational:

We refuse to let HIV decide who we are.”

We believe in people not victims; brilliant individuals, not scary statistics.

HIV can exert a powerful impact on the lives of people living with and closely affected by the virus. However…with the right interventions at the right time, resilience and hope can be developed.

The film Life in my Shoes celebrates difference by seeing life from other people’s perspectives. This wider message of the need to empathise with other people’s perspectives is powerful, beyond the context of this campaign, and I hope it receives a wide audience.

“There is one thing we all share, we are all different.”

* Name changed to maintain confidentiality. Story shared with consent.