“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted, uncared for and deserted by everybody” Mother Theresa
I am always early for my doctors appointment. I cannot imagine how anyone could be late for a doctors appointment, even though I know that lots of doctors, including mine, often run late. I hate to waste his time. I often worry that I am wasting his time though. It’s not a nice feeling. Sometimes, like when I’m feeling really down, I worry about it a lot. Quite often I say, “you don’t think I’m wasting your time do you?” and I always apologise, even though he’s always very nice and says I’m not, but you can tell sometimes, like when he’s looking stressed and tired, and you know there are patients still waiting and he’s running late, and he says I mustn’t ever worry about wasting his time, and I think, well what else could he say? And maybe he can’t tell me what he really thinks … and actually he’s thinking, “oh no, not her again!” I said that as well, the last few times I came in, actually, quite often it’s the first thing I say, in case that’s what he’s thinking, “Oh no, not her again!” I usually make a list of things so that he knows I’m not wasting his time. Sometimes I write the list when I’m waiting because I get quite forgetful these days. I think it helps. Once I couldn’t find my list and I just sat there not knowing what to say, and he said, “How can I help you today?” and I said I couldn’t remember and I was afraid … afraid that it would be over and I’d have to go and make another appointment and it might be another two weeks or more and it would all be over, but he looked at the computer and checked my blood pressure and my weight and while he did this we talked … I remember he said his little boys were playing a lot with each-other and were riding bikes … I don’t remember what I told him, I hardly ever do … Even so, I don’t think there’s anybody in the world who knows me like my doctor. Not any more. I remember one time I came in and one of the things on my list was a lump on my breast and it was quite a way down the list and I hoped that we wouldn’t get that far because I was so scared. There are some doctors you know, who only let you discuss one problem at a time. I don’t know how I would cope with that … I don’t even know how doctors cope with that … When I showed him my list with ‘breast lump’ at the bottom he asked where I wanted to start and I said I didn’t know, and he said we should start with the lump. I don’t really like getting undressed, even in the doctor’s. I think part of it is that when you’re undressed you cannot hide what you’re feeling, you feel vulnerable when you’re behind the curtains and he’s examining you – it is a bit like that, an examination, and you just blurt something out without thinking because you’re so nervous. It seems odd when you come to think of it, because he knows me and I trust him, more than anyone in the world, but I don’t want him to know everything about me. That’s just how I am, I don’t think anyone really knows you but yourself, and it’s not really anyone’s business but your own. I don’t like to bother other people, around here they’ve got enough problems of their own. That’s why I don’t like to bother my doctor – I bet he spends all day listening to people’s problems, far worse than mine. The lump though, it wasn’t cancer. He sent me to the hospital, just to be on the safe side he said. I was terrified, they had to do a biopsy and I couldn’t sleep for weeks and I wished I had never mentioned it in the first place. Nowadays I try to remember the list before I go in so I don’t have to show it to him.
I had caught sight of Joan as I carried a pile of paperwork, prescriptions and a cup of tepid coffee into my consulting room. My afternoon surgery wasn’t due to start for another half an hour and as usual she was early. I wondered why she didn’t bring a book or some knitting or something else to keep her occupied. Not long ago, for for the first time, to my embarrassment, I’d tested her eyesight and checked she could read – I’m constantly surprised by how many of my patients cannot read, but she had no problems. I even asked her why she didn’t bring a book or have a look at our practice newsletter. “I didn’t know you had a practice newsletter,” she said in a surprised tone. I wondered how it was she hadn’t noticed them when they were so clearly on display. As I walked through the waiting room she stood up to help me with the door, asking as she did so how I was, “You’re very busy as usual doctor,” I smiled back, heartfelt appreciation that my stress had been noticed. I wondered briefly before forcing some coffee down and looking at the first hospital letter in my pile why she always came so early to her appointments. Today she was my first appointment of the afternoon. Because I felt guilty about how long I usually kept her waiting, I booked her in first. I knew Joan so well I didn’t have to read her records before I called her in. She was anxious and a little depressed, worried about her declining physical health and forgetful with her medications. I was fond of her. We had been through a lot together, from her diagnosis with diabetes to her breast-cancer scare. She was kind and sensitive, gently curious about my own life and I didn’t mind sharing occasional details with her. In some ways I think of her as one of my favourite patients. All doctors have our favourites although we rarely admit it in public. We are, of course supposed to be professionally removed from having any actual feelings about our patients, as if professionalism can do such a thing. I wonder to myself if I ought to treat her differently, consciously avoid any special friendliness, concentrate more on her diabetes, cut the small-talk, refer her (again) to the specialist diabetic nurse … arrange a follow up appointment in six months time instead of leaving it up to her to fix the next appointment as she invariably does every three or four weeks. It can take two or three weeks for my patients to get a routine appointment with me so I phone several patients every day who need to speak to me sooner and I am always squeezing in extra patients before and after every surgery so that my working day seems to get ever longer. I worry that I’m depriving more patients with more pressing needs of appointments by seeing Joan so frequently. Her appointments, almost double the average six per patient per year, feel like an indulgence. What else do favourite patients get from me? Barely a handful email me from time to time, appropriately, about their health, but it’s not a service I feel I can offer to everyone as there’s no extra time to read emails and I’m rarely at work for less than thirteen hours at a stretch. Perhaps in the interest of fairness, access to my email address should be for everyone or no one? I worry that it’s privileged access given to busy, articulate patients rather than the chronically anxious, IT illiterate, elderly whose health needs are more serious or complex. What else do my favourite patients get? Nothing that I can think of other than a more relaxed manner, and an occasional insight into my own life. I also worry about missing something important when Joan comes in. It seems, in spite or perhaps because of our easy familiarity that we’re not achieving much. The NHS is increasingly scrutinised for productivity and efficiency, and as a practice our income is increasingly dependent on how well we control our patients diabetes or stop them smoking, both things I’ve failed to achieve with Joan. I wonder how I would justify the time I spend with her to an investigating health economist … would he suggest, as health economists always seem to do, that a nurse, a receptionist or a call centre operative could do the same job? Should I spending more of my time with those for whom ‘things can be done’?
I remind myself about her breast lump. Perhaps this is the nature of General Practice; we deal in the seemingly mundane, building up relationships of mutual trust, waiting for something life-changing to come along. But it’s more than that. We are constantly sifting through conversations, lists, symptoms and signs looking for something significant; a diagnosis perhaps, but also an event from their past, a deeply held belief, or a relationship, something perhaps from their subconscious. GPs are judged according to how many times we see a patient with symptoms suggestive of cancer before making a diagnosis – typically two or three, but what if the thing we are searching for is an explanation not for a breast lump or unexpected weight loss, but an explanation for something far more nebulous like frequent consultations …
He calls me in, it’s exactly two thirty, he looks stressed even though he’s on time. His hair is standing up – I know it’s his bicycle helmet that does that because I’ve seen him riding to work. Sometimes it stands up in three peaks all day. He should pay more attention to how he looks because on a good day he looks lovely. I’ve bought him a present today, it’s a bottle of wine. I think it’s quite good, but I don’t really know anything about wine. It’s difficult to know what to give your doctor as a present. The first time I gave him a bottle of wine I suddenly got really nervous because I thought that maybe he didn’t drink alcohol and I apologised in case he was offended, but he laughed, in a nice way, and I usually give him wine now if I can afford it, which is only sometimes. I think there must be some rules about doctors not accepting presents because he always says that I shouldn’t give him anything and he’s not really allowed to accept presents from patients. Once I asked the receptionists to give it to him, so that he couldn’t say no, but that’s not the same. I’ve never done that again. One time he said that if I wanted to say thank you a card would be better. I thought that was a bit unfair, for one thing I’m not really any good with words and for another, it should be up to me what I do. How are you supposed to show your appreciation if you’re not allowed to give them anything? It’s not fair. I’ll keep it hidden this time and give it to him just as I’m leaving so he hasn’t got time to say no.
I called Joan in from the waiting room. She stood up with greater ease and more obvious sprightliness than most of my elderly patients, prompting the questions, “Why is she here again? What’s going on? Am I missing something?”
“You’ve been cycling again doctor,” she said cheerily as she walked past me and I tried to flatten my hair. I was making a mental note not to be distracted by her list of minor complaints again today, but to try to find out what was behind them, to get to the bottom of these frequent appointments. Doctors are afraid of dependent patients. We are afraid that we create dependency or become magnets for so-called, dependent patients. Dependency is a dirty word in medicine. I like to think I am above that. I’ve spent time with many patients going through such awful experiences that they had no choice but to be dependent until they were able to take back control of their lives again. I’ve been meaning to write a blog about the importance and value of dependency for some time. My father-in-law, a retired vicar, was going to help me. But the zeitgeist is independence. Inter-dependence is making a bit of a comeback, but trying to mount a defence of dependence is to invite ridicule and scorn – it smacks of medical paternalism and worse. When I think of Joan, I imagine my critics and I struggle to defend myself. I start to blame myself for her frequent appointments, in all ten last year and already six this year and it’s barely even May. Why am I colluding with her lists? There is always a list, just enough potentially serious or important clinical issues to fill the appointment so we never have time to get to the bottom of what’s really going on, and then when it’s nearly over she asks about my children or gives me a bottle of wine and it doesn’t seem fair and there isn’t time to ask an awkward question or get stuck into a difficult conversation. So we arrange another appointment and I think next time, I’ll shoot through the list and get to the bottom of whatever it is. Am I avoiding difficult conversations because, if we carry on as we are, she is a friendly, familiar face and an ‘easy consultation?’ Am I afraid of opening a can of worms, raising some awful event from her past that was buried there that I’m completely unable to do anything about? Often, when my surgeries are running late, I’m relieved to see Joan, because she’s usually a quick appointment, but whose fault is that, aren’t we both sticking to superficial issues to avoid mutual discomfort? Perhaps there is no hidden agenda, and I’m just using it to justify all these appointments? If so, shouldn’t I tell her to see the nurse instead or arrange for her to phone me instead of booking an appointment? I start worrying that I am wasting my time and hers, both of us a drain on the vanishing NHS resources, achieving nothing.
He looks sad. I wonder why. He’s usually pleased to see me. I try to cheer him up, “I bet you’re thinking, Oh no, not her again!”, but he barely smiles. I’m afraid. Maybe it’s true, that is what he’s thinking and he doesn’t want to see me any more. I wouldn’t blame him. I’m only half joking after all, there are very few people I talk to these days. I haven’t got anything left to say, I even get fed up with my own company these days. It’s his job I know, but I don’t want him to put up with me just because it’s his job. That’s why I try to cheer him up, I think of all the other people he must listen to moaning all day. I don’t want to be like them. I want him to like me. “I’m sorry, doctor, I won’t take much of your time … it’s only a short list …” He interrupts, and asks if he can have a look, I try to find it but I can’t, I’m beginning to panic a bit now. “It’s just my medication and, if you don’t mind, could you have a quick look in my ear”. I don’t know why I said that, it just came out. “of course” he says, and quick as anything he’s looked in my ears and done something with his computer and there’s a prescription on the desk and he’s looking at me, really seriously but gently, like he’s going to tell me I’ve got cancer …
She looks really worried. I start to regret my brusqueness. What am I doing, taking out my frustrations on this poor woman? She has no idea what’s been going through my head, this is a problem of my own making. Actually … and now I can feel my blood boil, this is neither her fault nor mine; it’s the absurd reductionism of general practice, this stupid belief that a doctor-patient interaction is little more than making a diagnosis, prescribing a treatment or referring on to a specialist. The obsession with efficiency and productivity. No wonder they’re trying to replace us with smartphones and call-centres. What do politicians, policy wonks, management consultants or journalists know of trust or continuity or the relationships between doctors and patients? I curse my obsession with monitoring the health-policy chatter on twitter and in the media – a constant stream that denigrates and mis-represents the job I love, but I still struggle to understand it myself, even after a dozen years of full-time practice. How dare they assume to know?
I snap out of my dark thoughts and recompose,
“Joan … who do you have in your life?”
Why is he asking me that, is there something he wants to tell me but won’t say because I’m on my own. “There’s nobody else but … me …” As the words come out I hear them for the first time … I’ve admitted it, I’m on my own. There are weeks when I don’t go out of my flat. Sometimes I can go for a month without speaking to anyone at all. Sometimes when I’m really low and there’s nothing left, I’ll just eat spaghetti from the tin and drink a bottle of wine and then I’ll feel awful the next day and I won’t even get out of bed. Before I came here today I hadn’t had a bath for nearly a week. I wouldn’t ever want him to see me like that. I wouldn’t ever want him to see my flat, I’d be too embarrassed. Suddenly I realise I’ve been speaking my thoughts aloud, and he knows.
“Are you lonely?” he asks
“No, no, of course not!”, but of course I am, desperately lonely, but there’s nothing in the world that he or anyone else can do about it, so why is he asking? Tears start rolling down my cheeks. I can’t tell if I feel betrayed or relieved. He hands me tissues. I tell him how awful I feel, how sorry I am for crying and wasting his time. He’s not trained all these years to listen to me crying about being on my own and feeling sorry for myself, there are sick people waiting to see him, babies some of them. That’s who he ought to be seeing, I’m wasting his time. As if he can read my mind he tells me that I’m not wasting his time at all and that he’s sorry he never asked before. But I didn’t want him to know! I don’t believe him. What if he thinks that’s why I’m here, because I’m lonely? What will happen then? He’ll stop me coming, tell me to find a friend, join a club, take up a hobby … does he think I haven’t thought of that? You can’t treat loneliness, there isn’t a pill for it, not yet anyway.
I’m trying to imagine what life is like to be so lonely that you don’t go outside or speak to people for weeks at a time, wondering at how someone like Joan could be so isolated in such a big city. Wondering how she keeps herself going and what she keeps herself going for. I realise that I’ve got nothing to offer, the local club for elderly people was closed down last year, the befriending service seems to have folded, with more cuts to come, what will be left? I wonder how many of my patients are lonely and how many come to see me because they are lonely. I was trained to look for medical diagnoses, to interpret the world through a diagnostic lens in which the unique story and experience of my patients is lost. And so we beat about the bush, making small talk about aches and pains, unexplained tiredness, trouble sleeping, but never get around to talking about loneliness. When I worked in Afghanistan in 2004, the clinic was always full of women. It was a buzz of socialising and chatter. Few of them were ill, but all insisted on leaving with a prescription, some vitamins or some paracetamol would suffice, they needed something to prove to their husbands that their trip to the clinic was not merely a social occasion. And for our part we would write down a diagnosis to fit the prescription and the deception was complete. I look through Joan’s medical record and see carefully and concisely documented medication adjustments, blood pressure checks, smoking cessation advice, diabetic foot checks and urine analyses. But no mention of what we were really up to. We’ve been colluding for years. Or have we? There is no way of knowing which consultation will reveal a symptom of serious disease or help her take control of her diabetes, or give up smoking. Consultations are too complex and dynamic, unpredictable and creative to be separated into those that are for comfort and company and those that are about so-called ‘serious matters’. Loneliness has been linked to heart disease, strokes and depression, doesn’t that make it serious? Perhaps our appointments are some form of ‘treatment’ for Joan’s loneliness, reducing the risks slightly. If she wasn’t seeing me perhaps she would go to A&E where, not knowing her, they would find some reason to admit her to hospital. I recall an essay about a lonely woman who repeatedly presented new symptoms to the hospital doctors, so they kept her in for weeks doing more and more tests, up to and through the Christmas period, all because she didn’t want to go home.
So now he knows. He keeps telling me not to worry, that it’s ok, that lots of his patients are lonely, afraid to go out, isolated. I know he means it, because it’s true. I’ve been mugged, lots of us older people have. I won’t even come to the doctors after dark. But I don’t know what to say. It’s easier to talk about being depressed or feeling tired, or your aches and pains, anything really apart from the fact that you’ve got nobody and you’re on your own. I want to leave now. I get up to go, I say sorry for wasting his time, and then I feel silly saying it again, and I’m embarrassed so I leave. When I get into the waiting room there is a queue for the receptionists so I think I won’t wait to make another appointment, I just want to go home. Just then I realise I’ve still got the bottle of wine I meant to give him. For a moment I think I might go home and drink it, and then he comes out to call his next patient and so quickly I go up and give it to him, I say, “I forgot to give you this, to say thank you,” and I’m thinking, “Please don’t say you can’t take it, not this time …”
Key facts about loneliness and isolation:
Lonely people are almost twice as likely to visit their GP as patients who are not lonely (LPIGP) and are more likely to visit A&E departments (LTSWI)
A number of research studies conducted at different times in different parts of the UK, suggest that 5–16 per cent of the older population is lonely. Using these studies, it is possible to estimate that overall about 10 per cent of the general population aged over 65 in the UK is lonely all or most of the time. This equates to over 900,000 older people (LTSWI)
There is a steep rise in reported loneliness among the oldest old (80+), where roughly half the respondents report feeling a lack of companionship. (Age UK)
Twelve per cent of older people say that they feel trapped in their own home and 9 per cent they feel cut off from society. Six per cent report that they leave their house once a week or less. (LTSWI)
Women, responders in lower social class groups, those who rented their homes, those who lived in more deprived neighbourhoods, those with no car access, those with poorer self-assessed health, those who lived alone, and those who felt more unhappy about their current marital/partner status, reported higher levels of loneliness. Mean HADS (anxiety and depression) scores and number of symptoms were also significantly higher among responders who reported feeling lonely more frequently. (Someone to talk to? the role of loneliness as a factor in the frequency of GP consultations)
Certain groups are disproportionately affected by loneliness: the poor, the widowed, the physically isolated, people who have recently stopped driving, those with sensory impairment and the very old. (AgeUK)
Older people are more likely to be lonely if they live in a deprived urban area or an area in which crime is an issue. (LTSWI)
Levels of loneliness among ethnic minority elders are generally higher than for the rest of the population – 15 per cent reporting that they always or often feel lonely. 55 per cent of ethnic minority respondents say that they have someone who gives them love and affection, while the figure is 88 per cent for the general population. (LTSWI)
People who have enjoyed friendship and companionship are more likely to be lonely than those who have never had close ties. (Age UK)
The loss of a service which has had success at alleviating loneliness is worse than never having had the service at all. This also applies to patchy and unreliable services. (Age UK)
A report by the NSPCC published in March 2010 found that in 2008/09 almost ten thousand children were counselled by ChildLine about loneliness. Half this number telephoned about loneliness as their main problem, and this has tripled in five years, from 1,852 to 5,525. Children cited reasons for their increased feelings of loneliness, the most common being family relationship problems, issues linked to school, and bullying. (TLS)
Loneliness, social isolation and ill health.
Loneliness can affect our mental health, with 42% of us saying that we have felt depressed because we felt alone. Despite this, a relatively small percentage of us have sought help for loneliness (11%), which might reflect the apparent stigma attached to loneliness – almost a quarter of us (23%) would be embarrassed to admit to feeling lonely. (TLS)
Data across 308,849 individuals, followed for an average of 7.5 years, indicate that individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships. The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity). (Holt-Lunstad J, Smith TB et al. (2010) Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Med 7(7): e1000316
Lonely people are more likely to seek comfort in unhealthy food, avoid exercise, drink excessively and sleep badly all of which increase the risk of serious illnesses (The Lonely Society)
In 2006 a study of almost 3,000 nurses with breast cancer found that women without close friends were four times more likely to die than women with 10 or more friends. (The Lonely Society)
Loneliness is more easily felt than defined. It has been described as “a debilitating psychological condition characterised by a deep sense of emptiness, worthlessness, lack of control and personal threat”. But definitions fail to capture the intensely subjective experience of loneliness. My personal sense of loneliness which stems from a sense that my hopes and fears are too marginal or esoteric to be of interest to others, is of little relevance to someone else whose loneliness in old age crept up gradually after his wife and brother died and his hearing and eyesight gradually failed. The science of loneliness will perhaps always fall short of the art of loneliness in descriptive powers, much like the art and science of other kinds of suffering. Loneliness is not as simple as being isolated or alone and nor is it cured by being with others. In one study, among those who reported feeling lonely ‘mostly or often’, it was those who lived with other people who had significantly more consultations with their GP. Attempts to define loneliness have proposed social and emotional loneliness. Social loneliness happens when you are no longer part of a group, for example after disabling illness stops you going out or a day centre you attended is closed down due to local authority cuts. Emotional loneliness is when you are separated from someone significant, for example after bereavement or divorce. Situational loneliness is when circumstances, such as illness or stigma, stop you feeling connected to others. Chronic loneliness has been described as occurring when feelings of loneliness “become uncoupled from the situations that aroused them”. There is a vicious cycle of loneliness in which the lonely feel ashamed, blame themselves, and project negative feelings on social relationships, further alienating themselves from others.
References and further reading:
Interview with John Cacioppo, Professor of Loneliness https://www.theguardian.com/science/2016/feb/28/loneliness-is-like-an-iceberg-john-cacioppo-social-neuroscience-interview
Lonely Britain: 10% of population does not have a close friend. Independent August 12th 2014
Loneliness is not a bug with a technological solution. Helping elderly people to use the internet is a good idea. But let’s not mistake broadband connections for social ones. Guardian May 28th 2014
Loneliness can be deadly for elders. NY Times Jan 4th 2017
Loneliness, beating the curse of old age. BBC May 22nd 2014 Excellent feature.
Britain’s elderly, lonelier than ever, where do they all belong? Independent May 3rd 2013
The Lonely Society. Report from The Mental Health Foundation.
Loneliness Is Deadly: Social isolation kills more people than obesity does—and it’s just as stigmatized. Slate August 23rd 2013
Loneliness, conflation and ideology Loneliness encompasses ideology and the relationship between individualism and society.
Britian’s loneliness epidemic. Guardian. Jan 2013
Toll of loneliness: isolation increases risk of death, study finds Telegraph March 2013
Loneliness ‘time bomb’ warning fuelled by baby-boomer divorces. Telegraph April 2013
The High Price of Loneliness NYTimes
The Grim Impact of Loneliness and Living Alone Forbes 18/06/2012
Shaking off Loneliness. NYTimes May 2013 Feeling lonely was associated with a 64% increased risk of dementia.
Doctors and Lonely Patients:
GPs attitudes to lonely patients. ComRes poll for the Campaign to End Loneliness. Nov. 2013
GPs experience with lonely patients Australian Family Phyisican 2008
Lonely patients in general practice: a call for revealing GPs’ emotions? A qualitative study Fam Pract. 2009 Dec;26(6)
Someone to talk to? The role of loneliness as a factor in the frequency of GP consultations British Journal of General Practice 1999
An epidemic of loneliness. Lancet. A Lonely, elderly woman doesn’t want to leave hospital before Christmas and fools medical staff into believing she is too sick to be discharged. Extraordinary, prize-winning essay.
The Old Duffers Club. One GPs solution for lonely patients
The Lonely Patient. Book by Dr Michael Stein
Lonely, isolated doctors:
Loneliness, Isolation and ill health:
Loneliness in Older Persons: A Predictor of Functional Decline and Death Archives of Internal medicine 2012
Loneliness A scientific study Cacioppo J, Hawkley L, 2002.
How people and animals in isolation die sooner. The Atlantic
How to cope and what can be done
Preventing loneliness and social isolation: interventions and outcomes 2011 Social Care Institute for Excellence October 2010
How to cope with loneliness. Excellent advice from MIND the mental health charity
In a Lonely Place. Thoughtful, helpful piece from Mark Brown: One In Four Magazine
Friendship. Stamford Encyclopedia of Philosophy
Patients, Friends and Relationship Boundaries. Canadian Family Physician Vol. 39 December 1993 Excellent analysis of the issues from a rural practice perspective.
Should doctors and patients be friends? Can this lead to an ethical dilemma? Journal of Pakistan Medical Association
The friendship model of physician/patient relationship and patient autonomy. Illingworth Bioethics 1998
Re-thinking the physician-patient relationship: A Physician’s Philosophical Perspective. Paul Qualtere Burcher Dissertation 2011