We look at chronic illness and the ‘Empathy Gene’. Next month we will look at the relevance of the ‘Empathy Gene’ to the pharma industry; ‘the Empathy Gene and the Rx Factor’.
Jon Chandler 
Elodie Le Roux 
15 Apr, 2008
Chronic Illness, the Empathy Gene and the Rx Factor
Part 1
Empathy: 'The capacity to know emotionally what another is experiencing from within
the frame of reference of that other person, the capacity to sample the feelings
of another or to put oneself in another’s shoes' D. M. Berger1
In this month’s Third Tuesday feature we will look at chronic illness and the ‘Empathy Gene’. In next month’s Third Tuesday we will look at the relevance of the ‘Empathy Gene’ to the pharma industry; ‘the Empathy Gene and the Rx Factor’.
In 2005 BHI conducted its own original research project with a range of patients suffering various chronic illnesses. A ‘video diary’ methodology was employed in which participants recorded themselves daily on video, talking in response to some very broad cues and prompts.
One week of such daily recordings typically generated between one and two hours of video material from each participant. After extensive review of this material a wide variety of observations were made. One key observation provides the start point for this paper:
- Sooner or later every one of these participants would talk about various ways in which, because of their illness, they felt isolated and separated from others, they felt isolated and separated from the world around them and ultimately disconnected from the personal sense of their own humanity.
Two things were particularly striking here:
- The intensity of the feelings was remarkably strong, it appeared almost as if the emotional angst attached to chronic illness was as much of an issue as the illness itself.
- These feelings appeared regardless of the nature of the problem; whether we were hearing from someone with chronic back pain, with multiple sclerosis, undergoing chemotherapy in breast cancer, experiencing chronic depression or a mother caring for a child with special needs.
What is particularly important here is the intensity of peoples’ sense of existential pain and loss. The key insight of this work is that chronically ill patients often experience deep alienation. Much of what they talk about is not their illness itself but how it impacts and disturbs their lives and their sense of being. We see this alienation at a number of levels:
Physical Alienation
The experience of illness and particularly chronic illness can be extremely
unsettling and disorienting. It often involves the patient feeling stranger
within their own body:
“Last evening before I went to bed I was just making myself a drink … I saw my reflection in my kitchen window and I just sort of looked at myself … and I felt a bit scared because I thought 'my Lord, what's happening to me' ... Here I am, you know, 6 weeks down the line … before nothing was happening to me and now I am on chemotherapy and I've just looked at reflection and I thought 'Oh dear, what has happened, how have I got to this stage of my life'”
“It has taken an awful lot of time to adjust everything going on with the body”
Domestic alienation
For many people immediate family are an important anchor for everyday life.
Chronic illness often challenges this, the chronically ill often experience
a sense of separation and distance from their own family:
“My wife decided to go bowling with my son Charlie and because of the way I am at the moment and the fact I am not capable of doing things most Dads are capable of doing … you know, bowling with the kids, playing football, going swimming with them … I am excluded from it and I must admit that makes me feel very lonely. … But I can’t play the game and if I go and watch, then I just feel frustrated so it is best not to go. Because I don’t want to take this out on my son, it is not fair. So they’ve gone and they probably won’t be back until about 2 or 3”
Often this sense of separation is about space as well as people, we often hear about a sense of restriction in the domestic environment:
“I find the restrictions that I have got in my family life such as the inability to drive long distances anymore because of the discomfort you get when you are driving. My son wanted his bedroom painted…I have always looked after my own house, but for the last two years … forget it … if I am up and down on ladders, I get so uncomfortable that I have to pull back and say, this is as much as I can do for the time being.”
Social alienation
Listening to chronically ill patients we are reminded that man is a profoundly
social being. What Anthropology and Evolutionary Psychology tell us is that
being social is fundamental to our being. Time and again we hear how chronic
illness creates feelings of no longer being a part of things, outside and
separate. When we hear the real emotional pain of those who feel this isolation
we realise that being human involves a profound need to feel involved and
engaged with others and to feel that others are engaged and involved with
us:
“After two years of going through the legal problems my condition has gone worse whereby I can only walk very very short distances with the aid of a stick ... What effect does this have on me? … Low self-esteem … because I haven’t got my career anymore, friends that I used to have don’t seem to keep in touch or very few of them, apart from those who were very very special to me. So it means that I have to make a special effort to keep in touch which because of my condition I find it difficult to do.”
“I was dropped off by my wife outside … I can drive myself but I can’t walk hardly any distance … and after I had been dropped off I had to call over to some passers by to help pull me up over the edge of the pavement because I couldn’t get up the curb … I was very grateful to the people that helped me … some people don’t care about people with problems, or they look at you and think your drunk … So, you learn a lot like this, you observe a lot when you are not well but you do feel cut off.”
“There is no special care, no one phones you up and supports you. No one comes to see how you are getting on, no one sees if you are okay with the medication. There isn’t any support so you are left on to yourselves. You are left and you just think it would be nice if someone just phoned up and said “Hi, I am just phoning up because you have been in hospital. How is your daughter?” But they don’t.”
“People really and truly don’t have any understanding. If you see somebody in a wheelchair or on walking sticks you can straightaway think they’ve got a problem, they’ve got a physical disability let’s give them a bit of space … but they don’t they just you just think you are normal … And you are normal but walking in your own right is a problem, accessing some shop steps is so difficult … but at the end of the day, these people just don’t give you space.”
“Being disabled, people don’t want to employ you. Why should they? But I’ve got a brain that is been educated and I can help people. I taught maths after I lost my job for a couple of years for adult students and I got quite a bit of self esteem from that although unfortunately I found taking the books and having to teach in the evening very difficult.”
All of this is interesting in itself as a glimpse inside the experience of chronic illness. It is important for companies working on new ways of approaching chronic illness because it provides an important insight; that chronic illness attacks a patient’s sense of their own humanity as much as it attacks them physiologically.
Reflecting on these findings over time a question arises … what is it about the make up of people that brings them to respond in this way? Our answer is that this is the product of something that lies in our very nature as human beings. What we have chosen to call ‘the Empathy Gene’.
The ‘Empathy Gene’ is a metaphor for a set of needs and responses
that are a part of the core of our nature as human beings. We are programmed
with a need to belong, with a need to feel that we are bonded with and engaged
with other human beings. This ‘tribal heritage’ is ontologically
encoded in the way that we are. What we have observed in these people suffering
from chronic illness is a profound need for empathy and a profound experience
of anguish when that need is frustrated or denied.
It is not difficult to theorise around this proposition:
- Human beings are empathic beings: It is widely recognised that man’s social nature is one thing that keenly differentiates the human species from the rest of the animal kingdom. It is in our very nature to interact and interconnect with one another. Interaction and interconnection [sociability] is one of the fundamental building blocks of our species ‘success’. Empathy is a central part of humanity.
Empathy is built in. Evolutionary psychology now gives us a picture of
the human brain as having evolved to its complexity in order to be able
to manage the complexity of relationships demanded by human societies.
Empathy is built in to the way we work because it is built in to the way
our brains work.- Socialization and learning through empathy. The behaviours, morals, values and so on of any group or society are acquired through processes involving relationships with others and through empathic bonds with others; mothers/parents, siblings, peers, kinship and friendship networks, colleagues and so on. Empathy is the key lubricant of individual development.
At a practical level this challenges us to question what ramifications the empathy gene has:
- For how we conduct research
- For how we rep HCP’s
- For how brands communicate with HCPs
- For how medicine deals with patients.
1 Berger, D. M. (1987). Clinical empathy. Northvale: Jason Aronson, Inc.
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