² Centre for Mental Health and Well-being Research, School of Psychology, Deakin University, Geelong, Victoria, Australia
³ AHP Research, Hornchurch, Essex, UK
⁴ Department of Neurobehavioural Sciences, Behavioural Medicine Centre, School of Medicine, University of Virginia, Charlottesville, Virginia, USA

The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination.

Don Williams Jr. (1957–)

Introduction

The experience of living with diabetes is, inevitably, different for everyone who lives with the condition: a unique journey shaped by many factors, including type of diabetes, age at diagnosis, treatment regimen, prior health status, personality, emotional reaction, and social circumstance. The analogy of living with diabetes as a journey helps health professionals understand the distinctive quality of that experience. There will be times when the person feels well and copes positively and other times that are more challenging, when resilience can be tested. There is no single successful route health professionals can recommend for all people with diabetes—there will be detours, delays, potholes and speed bumps along the way based on the personal and clinical circumstances of each person.

Along the journey, the person can be assisted and supported by others who help read the map. Alternatively, the individual can be harassed by ‘backseat drivers’ who offer conflicting, erroneous or unwanted suggestions. Thus, family, friends, and health professionals can be a source of support or conflict. In this chapter, we do not attempt to map out the ‘typical’ journey: instead, we provide insights into how the journey might be experienced by some people with diabetes and, importantly, point out signposts that could help you to recognise when support is needed and how to provide it.

From a biomedical perspective, diabetes is a chronic disease—it has a pathology, various aspects of which can be investigated in the laboratory. However, in this chapter (indeed in the book) you will not read much about diabetes the disease. Instead, we are interested in the human experience of diabetes: how individuals perceive diabetes, cope with it, live with it and what health professionals can learn from each individual’s experience to support other people living with diabetes.

Although understanding the pathology is necessary, it is not sufficient to ensure successful clinical and patient-reported outcomes. Understandably, health professionals are likely to guide diabetes management from a biomedical perspective, yet the persons’ self-care decisions and behaviours are likely to be influenced by their own experiences, beliefs, responsibilities, and preferences (Adams et al. 1997). Thus, understanding people’s experience of living with diabetes is fundamental to effectively supporting people along their journey (Telford et al. 2006).

Numerous studies present snapshots of the impact of diabetes on people’s physical and psychological circumstances at certain life stages or life transitions. However, there is a dearth of research about how people experience their journey with diabetes, for example from diagnosis to when they feel in control of their diabetes or, in other cases, entirely overpowered by it. A few qualitative studies have highlighted the complex personal experiences and insights that a person gains on their journey with diabetes. In a study of 13 people with a recent diagnosis of diabetes, Kneck et al. (2011) identified four common themes:

Being ‘taken over by a new reality’, e.g. concrete changes are necessary as a result of diabetes.
‘The body plays a new role in life’, e.g. the body has new demands and the blood glucose metre becomes a valuable tool to better understand these requirements.
‘Different ways of learning’, e.g. experience and reflection become useful learning tools.
‘The healthcare services as a necessary partner’, e.g. health professionals are perceived as a source of reliable information.

Even this brief summary highlights the reality of the issues people face as they begin their journey with diabetes. People gain an understanding of diabetes through their own experiences and self-reflection, and they grapple with a new reality that involves changing perceptions of their own body, lifestyle and the future. Thus, it is evident that psychological, social and behavioural factors play a vital role in the person’s journey with diabetes.

Psychological factors: the role of beliefs and attitudes

When an individual develops an acute condition, there is usually a sudden onset of symptoms, a short period of treatment and, hopefully, a relatively speedy recovery. While definitions of ‘chronicity’ vary in terms of the extent of disability, pain and intensity of the care required, the common human experience of diabetes is that its course is unclear and unrelenting. The onset can be different depending on the type of diabetes. It can be sudden, as is most frequently the case in type 1 diabetes (T1DM) and gestational diabetes (GDM) or silent and insidious as is often the case with type 2 diabetes (T2DM). Diabetes can be detected when symptoms develop, the severity and type of the symptoms, when a complication develops, or come ‘out of the blue’ on routine screening. The following quotations from people with diabetes illustrate how the impact of the diagnosis can be influenced by personal experience and how attitudes begin to take shape:

‘When I was first diagnosed it was very dramatic, it was really frightening, the fear of the unknown really.’
‘I don’t think it’s all that devastating. There are far worse incurable sorts of things.’
‘It was easy for me because my son had it, so I had the experience of it, I knew what it was already.’

Clark (2004, p. 29)

At the beginning of any journey, especially if it is long and complicated, we need a map or at least some decent directions to put us on the right road. At the beginning of their journeys, people with diabetes need clear directions from their health professionals about the diagnosis, as well as an explanation of the condition and its management. Giving the right information, the right amount of information, at the right time, and in the right way is crucial to ensure the individual ‘begins the journey on the right track’.

Qualitative studies indicate health professionals need to inform people with diabetes that diabetes care is a process and clearly explain what the care process will look like so the person has a ‘map’ to help them on their journey. Indeed, the way diabetes is diagnosed and the information given at that critical teachable moment influences the way people perceive their condition for many years to come. Clarity, timing and the authority with which the diagnosis is made are highly salient for people with newly diagnosed type 2 diabetes (Parry et al. 2004).

Delays confirming the diagnosis, referring the individual to specialists, and creating management plans all contribute to the individual being unclear about the diagnosis and the need for lifestyle changes. Some people felt they were ‘in limbo’ waiting for the formal diagnosis after the initial clinical tests, particularly people with no symptoms or obvious signs of diabetes. Many people interpret the lack of symptoms as evidence they do not have diabetes or that it is so ‘mild’ it does not warrant urgent attention. Furthermore, a large UK quantitative study demonstrated that 46% of people with newly diagnosed T2DM did not believe diabetes was ‘a serious threat to their health’ (Khunti et al. 2008).

In addition, people who indicated they understood their condition were more likely to report that it was long term and they could influence its course (Khunti et al. 2008). Thus, the period around the time diabetes is diagnosed represents an excellent opportunity for health professionals to intervene and equip the individual with adequate and clear information about what they need to know and do to make a confident start on their journey and learn to adapt appropriately to having diabetes.

Health beliefs are the foundations of motivation and differentiate between people who do and do not perform healthy behaviours (Cerkoney and Hart 1980; Gillibrand and Stevenson 2006). Systematic reviews indicate that ‘adherence’ to oral medications ranges from 36% to 93% in people with T2DM (Cramer 2004; DART Memo). Mann et al. (2009) investigated medication-taking behaviours, beliefs about diabetes and beliefs about medicines among 151 US adults with T2DM. One in four participants did not take their medications as recommended.

The following beliefs predicted the likelihood people would not take medicines as recommended:

‘Believing you have diabetes only when your sugar is high’
‘believing there was no need to take medicine when the glucose was normal,’ ‘worrying about side-effects of diabetes medicines’
‘lack of self-confidence to control diabetes’
‘feeling medicines are hard to take’.

Mann et al. (2009)

A meta-analysis indicated that people who are more likely to take their medications as recommended have a higher level of confidence in their ability to follow their health professionals’ advice, expect more meaningful and positive consequences of their medication-taking behaviour, and view the relationship with their health professionals more positively (Gherman et al. 2011).

Furthermore, two other literature reviews demonstrated the way people think about their diabetes influences their outcomes. Hagger and Orbell’s (2003) review of illness perceptions about diabetes and other chronic conditions found stronger beliefs that a condition is controllable were associated with greater psychological well-being, vitality and social functioning and were negatively associated with psychological distress and objective measures of illness status.

More recently, McSharry et al. (2011) conducted a meta-analysis and systematic review regarding glycaemic control (HbA_1c) and illness perceptions in T1 and T2DM. They demonstrated that various illness perceptions were significantly related to HbA_1c. For example,

Identity (i.e. symptoms attributed to diabetes),
Consequences (i.e. beliefs about the effects of having diabetes),
Timeline cyclical (i.e. course and duration of diabetes), and
Emotional representation domains (i.e. affective responses to diabetes).

were all significantly and positively related to HbA_1c; in addition, a negative association between greater personal control and HbA_1c emerged. Thus, evidence is cumulating that indicates personal beliefs about diabetes influence both psychological and biomedical outcomes.

‘Psychological insulin resistance’ (PIR) is characterised by a general reluctance among people with T2DM to initiate insulin therapy (Polonsky 2004; Brod et al. 2009) and can pose a significant threat to overall diabetes management. Polonsky (2004), who first coined the term ‘psychological insulin resistance’, suggested PIR is caused by several factors:

Perceived loss of control—61% believe ‘once I start insulin, I can never stop’, 50% believe insulin will restrict their lives.
Poor self-efficacy—up to 50% did not believe they could handle the demands of insulin.
Perceived personal failure—up to 50% believe ‘if I have to take insulin, it means that I have messed up, that I haven’t done a good enough job taking care of my diabetes’.
Perceived disease severity—many people believe requiring insulin means their diabetes is suddenly much more serious or has got worse or, indeed, that it will get worse because of insulin. Polonsky cited a large ethnic split on this issue; around 70% of Hispanics believed diabetes became more serious versus 8% of non-Hispanics.
Injection-related anxiety—approximately 50% are scared of injections, although the proportion seems to be overstated. Very few people actually have needle phobia. Being scared is more likely to be due to lack of awareness about the relative painlessness of insulin injections.
Perceived lack of positive gain—less than 10% believe insulin will have benefits for energy and blood glucose levels.

You may notice only one of these factors; injection-related anxiety is an emotional reaction and even that is likely to have its basis in mistaken beliefs. The other factors are all beliefs and attitudes. In other words, the way people think about diabetes affects how they are willing to manage it. Consider the following personal account (Box 2.1):

My mother had diabetes, and it was no big deal to her for over 20 years. She rarely saw a doctor and never paid much attention to it, and it never really bothered her. But then her doctor finally convinced her to start insulin and—bam! Over the next year, she started having serious problems with her eyes, and then there were terrible pains in her legs. In fact, she eventually lost most of her left leg. No doubt about it, insulin was the culprit. And now you want me to start insulin? No way!

Polonsky (2004, p. 148)

Box 2.1 Personal accounts of the diagnosis of diabetes

Member of the teen-sensation musical band ‘Jonas Brothers’, Nick Jonas, has discussed the time around the diagnosis of his type 1 diabetes in 2005 when he was 12 years old (von Wartburg 2007). A few weeks before his diagnosis, he noticed he was losing a considerable amount of weight, was continually thirsty and generally having a bad attitude—‘it was just insane. I had a terrible attitude, which was totally odd for me because I’m actually a nice person. Especially being on the road around people all the time, you have to keep that positive energy going … and it was hard.’ His blood sugar was over 700 mg/DL (39 mmol/L) on diagnosis and he said, ‘to suddenly have the shock of diabetes was a bit overwhelming in itself, and then I had to learn all about it, learn all these things in such a short period of time. All of it was crazy. I also wondered if I could continue making music….’

Professional V8 Supercar racing driver, Jack Perkins, described his experience of being diagnosed with type 1 diabetes (www.sweettalkdiabetes.com). He said he was ‘living the dream’ as a professional racing driver when he was diagnosed with type 1 diabetes in 2006 and was told he ‘would never race again’. He said ‘I was shattered at first, thinking all my plans for the future were destroyed’.

Finally, Polonsky indicated health professionals’ attitudes and language are important in shaping the individual’s willingness to initiate insulin. All too often, health professionals use insulin as a threat by talking with the individual about their need to ‘improve your lifestyle or start insulin’. Many health professionals also refer to ‘failure’ of lifestyle changes or oral medications. While these phrases may seem harmless and even motivational messages, the individual interprets the underlying meaning as: ‘you have failed; your diabetes has got worse, now you have to pay the price’. Refer to Chapter 6 for more information about the importance of language when communicating with and about people with diabetes and Chapter 11 for more information about medicine-related beliefs and behaviours.

These studies highlight the various ‘teaching moments’ around the time of diagnosis that can be used constructively to help people with diabetes understand their condition better and the journey they are embarked on. Diabetes educators and other health professionals can use simple cognitive restructuring techniques to develop appropriate health beliefs among people with diabetes. For example, blood glucose ‘tests’, regardless of whether they are conducted at home or as part of routine clinic visits, e.g. HbA_1c, can lead to anxiety and feelings of self-blame especially if the individual learned to interpret high blood glucose as ‘failing a test’ or a ‘poor reading’ (Peel et al. 2004) and can lead to less frequent blood glucose self-monitoring (SMBG) and missed clinic appointments (Karter et al. 2004; Weinger et al. 2005).

Health professionals can help people with diabetes use SMBG as an opportunity to help them understand how their blood glucose levels respond to their medication, diet, physical activity, and how to use their SMBG readings to maintain or make changes to their self-care regimen and feel more empowered to influence the course of their condition (Peel et al. 2007). Aiming for consistently perfect blood glucose readings is unrealistic. The reading is not a ‘test’ of the individual’s performance: it is an opportunity to help the individual decide what to do next, e.g. ‘is it safe to drive?’, ‘how much insulin do I need?’, ‘do I need a snack to avoid a hypo?’

Beliefs about diabetes and its severity often arise from information about diabetes-related complications. Indeed, many health professionals use the threat of complications as a motivational tool, intentionally or otherwise. ‘Worrying about the future and the possibility of serious complications’ ranks as the number one concern of people with diabetes, regardless of diabetes type, and is consistent across cultures (Snoek et al. 2000). The threat of long-term complications emerged as a strong motivator to encourage children to engage in better self-care in a qualitative study involving 47 caregivers of children with type 1 diabetes (parents and others) that focused on acquiring information from health professional. One parent commented that it was the only tool they had to motivate children: ‘the hammer we have, and the only hammer, is long-term complications’ (Buckloh et al. 2008).

However, people with diabetes typically overestimate their risk of complications (Asimakopoulou et al. 2008), which can have a counter-intuitive effect on motivation to prevent or delay the onset of complication. People become side-tracked into managing their emotional reactions such as anxiety and depression rather than actively managing their risk factors. Furthermore, people with diabetes tend to underestimate the value of lifestyle changes and taking medications as recommended to prevent the onset of complications. They typically rate ‘getting regular medical tests’ to screen for complications as a more important preventative strategy than self-care behaviours (Skinner 2004). Thus, is it clear that beliefs and attitudes formed before diabetes was diagnosed and those formed around the time of diagnosis, or later in the journey with diabetes, influence the way people manage their diabetes and, to a large extent, the path their diabetes will take.

Psychological factors: emotional reactions to diabetes

Diabetes has physical and psychological consequences. Most people battle with diabetes at some point in their lives: some are angry, others depressed, some are guilt-ridden, others in denial, some are frustrated, others frightened. Diabetes is not simply a matter of eating the ‘right’ things, avoiding the ‘wrong’ things and taking medications as recommended. It is an emotional journey. Indeed, overcoming emotional reactions is likely to be one of the most important steps a person can take to manage their diabetes successfully. Yet, it is singularly the most overlooked aspect of diabetes care. Time and money is spent on screening for retinopathy and other complications of diabetes, and yet, very little effort is put into screening for emotional distress.

Significantly the severity of depressed mood is associated with less healthy diet and fewer medication-taking behaviours as well as functional impairment and higher healthcare costs (Ciechanowski et al. 2000). Estimates vary, but systematic reviews suggest as many as 20% of the people with diabetes could have clinically significant levels of depression—up to four times higher than the general population (Ali et al. 2006; Barnard et al. 2006). Many more people, an estimated 40%, experience poor psychological well-being (Peyrot et al. 2005) including diabetes-related distress. Diabetes-related distress refers to emotional distress caused by or about the experience of diabetes and its management.

These facts mean that one in every five people with diabetes you see is likely to be depressed, and almost every other person could be experiencing severe diabetes-related distress. Can you identify these people in your clinic? Perhaps not; but you are not alone. Health professionals only identify and document one in four people with severe distress in routine consultations (Pouwer et al. 2006), which suggests detecting emotional distress is problematic unless routine, systematic monitoring is implemented using brief, standardised, valid measures.

Similarly, a cross-national study found 25% of people with diabetes reported symptoms indicating likely depression or diabetes-related distress (5% had both) and 80% of these were newly identified (Snoek et al. 2011). In the only study in which people experiencing high levels of psychological distress related to their diabetes were asked whether they wanted to talk with a health professional about their concerns, high concordance was noted between needing and wanting to talk (Davies et al. 2006).

So, along the journey with diabetes, it is almost certain that the individual will hit some hurdles—the reality of the diagnosis, changes in the treatment regimen, the onset of complications, as well as general life transitions and stresses such as becoming pregnant, moving house. All of these transitions can, and usually do, evoke emotional responses. Be aware that emotions are an inherent part of human experience and a natural response to the stresses of managing diabetes every day.

Recognising emotional problems can be difficult because people with diabetes do not always recognise their own complex feelings or may be too embarrassed to discuss their emotions with a health professional. Simple questioning techniques can be used to ensure the individual realises they are not abnormal because they feel the way they do. Some useful questions include:

‘Everyone struggles with their diabetes from time-to-time. What is that like for you?’
‘How can I help you get past some of the difficulties you are experiencing?’

See Box 2.2 for other question suggestions.

Health professionals face three main challenges when they address emotional issues during consultations: discomfort, feeling the need to solve the ‘problems’, and time. Often, health professionals avoid opening the emotional ‘can of worms’ because they fear they do not have the skills to deal with an emotional outburst (Mosely et al. 2010). Discussing emotional difficulties and ‘problem areas’ should be regarded as an opportunity for health professionals to learn about the individual’s journey.

Health professionals do not need to solve the problems or change the person’s emotions. Their role is to create an environment in which emotional reactions are valid and can be expressed freely. Frequently, the person just wants an opportunity to express their frustrations, guilt, or anger and have their feelings validated by their health professional. Furthermore, the time taken to listen to individual’s frustrations is well spent because it illuminates the human experience and can provide insights into why the person manages their diabetes the way they do.

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