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1
Knowing the enemy
1.1 The scale of the problem
In Western countries, up to a third of us have a long-term physical health condition: something like diabetes, arthritis, asthma or any of a range of chronic illnesses that affect daily life.1 By the time we reach 60, that has risen to more than half of us, and more still if we count high blood pressure. And many of us will have more than one of them.
This is a huge problem, in lots of ways.
For society as a whole, that means a large portion of the workforce is either less able to work productively or completely unable to. Itās also a lot of skills and effort being lost to services and industry, and a huge amount of financial support required to meet even the basic needs of those who canāt work any longer. Not to mention huge costs for the healthcare system; up to 70 per cent of the UKās NHS spending is on long-term conditions (LTCs).2
More importantly for the individual, thatās a lot of physical suffering. Depending on which LTC weāre talking about, it could be pain, fatigue, breathing difficulties, problems moving or balancing, losing consciousness, restrictions on eating, loss of vision, insomnia or any of dozens of other specific symptoms.
With the physical symptoms may come restrictions on the ability to work, to care for family members or for yourself, or to pursue pleasures either because youāre physically unable to or you canāt afford the cost anymore.
And thereās another area of life where LTCs can have a huge effect: the impact on emotions, on thoughts and actions. In everyday speech, we might talk about these as the āstressā of illness, or more precisely the psychological effects. And these can be just as damaging to a personās quality of life as the physical or practical effects of the illness.
On the surface, Billās doing well in life. At 43, he has a wife and two daughters whom he loves, he has a responsible job in management that he enjoys, and while heās far from rich, the family is financially stable.
Ten years ago, Bill was diagnosed with multiple sclerosis (MS). Heād had one previous episode of pain behind the eyes and blurring of vision, but that had cleared up by itself. When it came back, this time accompanied by dizziness and weakness, his doctors put him through a series of investigations, and finally diagnosed MS. With treatment, that attack passed, though heās been left with some permanent effects. He can have days when his balance isnāt great, and he has quite a lot of stiffness in his muscles ā particularly his legs. Heās normally OK around the office or home, but has to use a walking stick if heās going any distance outside. He also runs out of energy more quickly than he used to, especially on hot days. There was a āflare-upā of his condition a couple of years ago, where all his symptoms got worse and the eyesight problems came back, but again drug treatment brought that to an end fairly quickly, and he was soon back to the same long-term symptoms as before, though maybe a little bit worse.
Everyone around Bill tells him he copes brilliantly; the restrictions donāt stop him from being an effective employee and a good husband and father.
Yet others donāt see him at 2.00 a.m., wide awake, worrying about the future ā what if he has another flare-up, and the symptoms get even worse? What if he ends up in a wheelchair? Becomes incontinent or impotent? What if he becomes a burden to his wife and family? What if he loses his job and the family have no income? Billās nights are full of these worries, and itās only by keeping busy all day long that he quietens them.
What we see in Billās story is someone who has adjusted practically to his LTC, but for whom the psychological effect (worry in his case) is bringing more misery than the symptoms themselves.
And thatās what this book is about: why we get stressed in this way, and what to do about it.
Unfortunately, the answer is not to get rid of the LTC or its symptoms because, by their very nature, the conditions cannot be cured by any surgery or drug that has been invented so far (if they could, they wouldnāt be LTCs). And, equally, most of them will produce symptoms that cannot be managed simply and without side-effects; again, if they could, then these conditions wouldnāt create problems of the scale discussed above.
So the challenge will be to find a way to live life as best we can even with those conditions and their symptoms as part of our lives.
1.2 The nature of long-term conditions
Itās worth being clear about what I mean by LTCs ā or, to be even more precise, long-term physical health conditions. The World Health Organization defined LTCs as those requiring āongoing management over a period of years or decadesā.3 Other definitions emphasise that these are conditions that cannot (at present) be cured. They could be ones that may directly or indirectly be fatal at some point, but the term isnāt usually used for diseases that have a very short life-expectancy right from the point they first appear.
Many people are probably more familiar with the term āchronic illnessā (hence my using it in the subtitle of this book), and we are talking about pretty much the same thing. However, some LTCs ā for example, long-term pain after losing a limb ā canāt really be called illnesses or diseases; thatās why healthcare services now far more commonly talk about LTCs than āchronic illnessā.
You may also notice I mentioned earlier that I would be talking more specifically about long-term physical health conditions. It is certainly true that there are long-term mental health conditions such as bipolar disorder, psychotic conditions (e.g. schizophrenia), severe long-term depression or life-long obsessive-compulsive problems. Sadly, in some cases these cannot be cured, nor do they always disappear by themselves. And these problems can be just as devastating as a physical health problem.
Now, many of these types of problem have been shown to benefit to some degree at least from the techniques Iāll be discussing in this book. However, Iām not going to focus on them, partly because itās much harder to say when weāre genuinely āstuck withā components of these (e.g. mood swings, panic attacks); whether through treatment or by spontaneous improvement, such problems sometimes recede in a way that weāre unlikely to see in conditions like MS. And thatās different to dealing with MS like Billās, or many of the other long-term physical health problems that people can suffer, where the underlying causes of the problem are not going to go away.
The second reason for not focusing on long-term mental health problems is this: one of the reasons they can be so debilitating is that the very processes weāre going to be using to cope better (thinking, choosing what to pay attention to, planning ahead) are the very things that are most affected by those mental health conditions. Again, Iād want to point out that these same techniques can still be used for people with those problems ā itās just that in some cases we need to go about it in a slightly different way. And thatās also why weāll be excluding LTCs like dementia or significant brain injury.
Which isnāt to say that our purely āphysicalā LTCs donāt bring major psychological problems along with them.
Desmond doesnāt feel like the man he used to be. For someone who worked in heavy industry, enjoyed gardening and socialising, aging was bound to be a difficult thing to adjust to.
But in the last few years, everything seems to have gone wrong for him. Not only did he lose his wife to cancer five years ago, but his health has deteriorated sharply. He has a serious lung disease ā chronic obstructive pulmonary disease or COPD -which means he gets breathless very easily doing even the simplest tasks, or walking the shortest distances. Thatās put an end to his gardening, to standing pitchside watching football in the park, and even walking to the social club. On top of this, he has diabetes, no doubt made worse by the amount of weight he has put on since becoming less active. Heās been told that he risks all sorts of complications, including blindness and possibly ending up having a limb amputated, if he doesnāt take better care of his diet. But somehow he just canāt be bothered. Mostly, he just stays in his flat, half-watching TV, eating and drinking the wrong things and feeling like lifeās just miserable.
Sadly, Desmondās not alone; one study found that half of people with COPD had clinically significant levels of anxiety or depression.4 And part of the reason, especially in Desmondās case, is not so much the physical symptoms themselves (difficult though they may be), but what they take away from the personās life. Heād already lost his working life, then his wife, but then the illnesses took away his ability to enjoy gardening, watching sport, going out for a drink, and (if he were to follow dietary advice) his favourite foods and beer too. Because, like many older people, Desmond has more than one LTC, the effects of one can complicate dealing with the other; because his COPD leaves him less able to get out and be active, he stays still and comfort eats, worsening his diabetes. Itās not surprising that heās unhappy with his life at the moment.
But how can things get better?
For Desmond, things getting better canāt mean the COPD or diabetes vanishing (because they wonāt), and unfortunately, even with the best support and rehab, heās unlikely to be able to dig his allotment or stand on a freezing touchline on a December Sunday morning. And a diet of lager and microwave curry isnāt suddenly going to become health food for him.
In his case, the challenge is going to be finding a life worth living that doesnāt involve the things that his illnesses have taken away from him permanently. Iāll be talking at length about that before the end of this book.
So we see from Desmondās experience that the physical aspects of LTCs are interwoven with the psychological.
Both these aspects of health are also intimately connected to the setting they take place in, whether thatās a physical setting (e.g. living in a cold, damp place), a practical one (e.g. not having enough money to heat your home properly) or a social one (e.g. being isolated and having no one to help out when youāre ill). For many people, it may be the case that any one of the problems they face might be manageable, but itās the combination of physical and psychological problems and their situation that causes the difficulty.
Caroline finds it hard to get past the thought that āIt wasnāt meant to be like thisā. At 61years old, with husband Geoff four years her senior, this was when theyād planned to be enjoying a carefree retirement ā she from part-time teaching, he from his accountancy job at a large corporation. But events havenāt worked out that way.
Much of her spare time has been dedicated to her family ā especially caring for her frail elderly mother and providing childcare to allow her grown-up daughters to work.
Then 18 months ago, Geoff was involved in a bad car accident and sustained a serious head injury. It wasnāt clear heād survive, so everyone is pleased that his physical recovery has been as strong as it has. Unfortunately, other areas of recovery havenāt been so complete ā his concentration and memory remain very poor, he cannot plan or organise himself at all, and he has become much more short-tempered, and is sometimes rude and aggressive to those around him, especially Caroline. Now she finds she is having to take responsibility for all areas of their lives and care for Geoff, as well as support her mother and her daughters.
No wonder, then, that her irritable bowel syndrome (IBS) is getting worse; when under stress, she has bad stomach pain, her appetite goes and she often has to dash to the toilet; all of which makes it even harder to keep up with her responsibilities.
It really wasnāt meant to be like this.
So for Caroline, just like Desmond and Bill whom weāve already met, the LTC has physical problems; it has an impact on her ability to function within the world she lives in and causes significant psychological suffering, which itself makes the other problems worse.
1.3 The approach weāll take in this book
Given that our lives are affected by health problems in all these different ways, and how closely they are connected, it may seem odd that this book focuses almost totally on coping with the psychological aspects of these LTCs.
There are, however, several reasons why this makes sense.
ā¢ The physical effects of diffe...
