Drawing on clinical and personal experience, as well as recent research, this book gives an expert and personal insight into living with and managing an invisible illness; whether you have an invisible condition yourself, have a family or friend who is affected, or just want to know more about the subject. It contains a clear description of each condition and covers a wide-range of topics, including symptoms, diagnosis, relationships, home and work life, sleep problems, depression, anxiety, treatments and self-management techniques.
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Plus, helpfulsuggestions for communicating with and explaining the condition to others - who are often unaware exactly how a person is affected.
With its practical tips and tools this book aims to help give people more confidence and reduce the isolation and anxieties associated with these conditions and the impact they have on a person’s day-to-day life. As well as practical methods for managing the condition, it also gives information on how to get and where to go for additional information and support from others who share your experience. Once you’ve read this book, you will no doubt find yourself returning to it again and again to dip into specific chapters as part of the management of your condition. A helpful and useful resource for all. Both of us are academics - health psychologists - who have worked in universities and carried out research into chronic physical illnesses.
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We have researched many different conditions, including irritable bowel syndrome (IBS), inflammatory bowel disease, myalgic encephalomyelitis (ME), known as chronic fatigue syndrome (CFS), and mal de débarquement syndrome (MdDS). The illnesses we have focused on during our careers have tended to be invisible (ones where other people cannot tell you are ill unless you tell them). They also tend to be ones that are contested or misunderstood by health professionals and the general public, such as IBS. Researching these illnesses and finding out how they affect day-to-day lives is important for the person who has the illness and important for health professionals and other people who come into contact with those who are ill.
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When we first began research into IBS in 1991, there was no national IBS organization and no self-help groups. The few research studies carried out into IBS tended to focus on the causes of IBS. This is important of course , but this type of research wasn’t read by nurses and the general public, and so most people had no knowledge of IBS, and someone with IBS was unlikely to know anyone else with IBS.
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Thus a person with IBS at that time was likely to feel alone and isolated and to have little knowledge of the condition. We know this because we carried out research into the views and feelings of the patients themselves. Until this research, no one had published papers based on the views of people with IBS. Things are different now - there are lots of studies, many based on accounts given by people with the condition. So this book is based on research that we have carried out and on research from other people.
But we don’t want you to think that we are stuffy academics who have no personal knowledge of these conditions. Unfortunately, we have.