Dr. Megan A. Arroll - Invisible Illness: Coping with misunderstood conditions

Megan Arroll (PhD, C.Psychol., C.Sci., FHEA, AFBPsS) is a research fellow at the University of East London. She has been conducting research into medically unexplained and misunderstood illnesses for over a decade, and has published numerous academic papers on the topic of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Megan is actively involved in a number of UK-based CFS/ME charities and patient organizations. She is the author of Chronic Fatigue Syndrome: What you need to know about CFS/ME , also published by Sheldon Press.

Christine P. Dancey (C.Psychol., C.Health Psychol., FHEA, FBPsS) is Emeritus Professor of Psychology at the University of East London. Christine has carried out research into chronic physical illness for over 25 years, and has written numerous publications in this field. She is a co-founder of the IBS Network, the only national IBS support group in the UK.

Megan and Christine have a close working relationship and are both members of the Chronic Illness Research Team based at the University of East London.

Overcoming Common Problems Series

Selected titles

A full list of titles is available from Sheldon Press,

36 Causton Street, London SW1P 4ST and on our website at

www.sheldonpress.co.uk

Breast Cancer: Your treatment choices

Dr Terry Priestman

Chronic Fatigue Syndrome: What you need to know about CFS/ME

Dr Megan A. Arroll

Cider Vinegar

Margaret Hills

Coping Successfully with Chronic Illness: Your healing plan

Neville Shone

Coping Successfully with Shyness

Margaret Oakes, Professor Robert Bor and Dr Carina Eriksen

Coping with Difficult Families

Dr Jane McGregor and TIm McGregor

Coping with Epilepsy

Dr Pamela Crawford and Fiona Marshall

Coping with Guilt

Dr Windy Dryden

Coping with Liver Disease

Mark Greener

Coping with Memory Problems

Dr Sallie Baxendale

Coping with Obsessive Compulsive Disorder

Professor Kevin Gournay, Rachel Piper and Professor Paul Rogers

Coping with Schizophrenia

Professor Kevin Gournay and Debbie Robson

Coping with Thyroid Disease

Mark Greener

Depressive Illness: The curse of the strong

Dr Tim Cantopher

The Diabetes Healing DIet

Mark Greener and Christine Craggs-Hinton

The Empathy Trap: Understanding antisocial personalities

Dr Jane McGregor and Tim McGregor

Epilepsy: Complementary and alternative treatments

Dr Sallie Baxendale

Fibromyalgia: Your treatment guide

Christine Craggs-Hinton

Hay Fever: How to beat it

Dr Paul Carson

The Heart Attack Survival Guide

Mark Greener

Helping Elderly Relatives

Jill Eckersley

The Holistic Health Handbook

Mark Greener

How to Eat Well When You Have Cancer

Jane Freeman

How to Stop Worrying

Dr Frank Tallis

The Irritable Bowel Diet Book

Rosemary Nicol

Living with Complicated Grief

Professor Craig A. White

Living with IBS

Nuno Ferreira and David T. Gillanders

Making Sense of Trauma: How to tell your story

Dr Nigel C. Hunt and Dr Sue McHale

Overcoming Fear: With mindfulness

Deborah Ward

Overcoming Loneliness

Alice Muir

Overcoming Stress

Professor Robert Bor, Dr Carina Eriksen and Dr Sara Chaudry

Overcoming Worry and Anxiety

Dr Jerry Kennard

Physical Intelligence: How to take charge of your weight

Dr Tom Smith

The Self-Esteem Journal

Alison Waines

Ten Steps to Positive Living

Dr Windy Dryden

Transforming Eight Deadly Emotions into Healthy Ones

Dr Windy Dryden

Treating Arthritis: The drug-free way

Margaret Hills and Christine Horner

Treating Arthritis: The supplements guide

Julia Davies

Understanding Yourself and Others: Practical ideas from the world of coaching

Bob Thomson

When Someone You Love Has Depression: A handbook for family and friends

Barbara Baker

First published in Great Britain in 2014

Sheldon Press

36 Causton Street

London SW1P 4ST

www.sheldonpress.co.uk

Copyright Dr Megan A. Arroll and Professor Christine P. Dancey 2014

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.

The author and publisher have made every effort to ensure that the external website and email addresses included in this book are correct and up to date at the time of going to press. The author and publisher are not responsible for the content, quality or continuing accessibility of the sites.

British Library Cataloguing-in-Publication Data

A catalogue record for this book is available from the British Library

ISBN 9781847093059

eBook ISBN 9781847093066

Typeset by Caroline Waldron, Wirral, Cheshire

eBook by Graphicraft Limited, Hong Kong

Contents

Megan would like to dedicate this book to everyone with an invisible illness. Both Christine and I know how tough it is when you look fine but are crippled with pain, fatigue, vertigo and a plethora of symptoms all at once. Your courage in the face of such debilitating symptoms is admirable. And of course thanks is given to my Ma, as always.

Christine would like to dedicate this book to Elisabeth Bond, who is one of the nicest and kindest people I have ever had the pleasure to know.

This is an accessible and easy to read book for anyone affected by, or with an interest in, invisible illnesses. With no outward symptoms, invisible illnesses are often complex and misunderstood. They affect a great number of people and, for those who live with one of these conditions, they can be extremely debilitating and distressing; especially if their condition is not recognised or accepted.

At the Mnires Society, we speak to people daily who have an invisible illness, I look fine on the outside, so how do I explain to someone that Im not? They want to know how to cope with their condition, to feel they are living a normal life and know that they are not alone in their experience. These questions and anxieties are common to all invisible conditions and are addressed herein. As well as Mnires disease, this book covers irritable bowel syndrome (IBS), migraine, fibromyalgia syndrome (FMS), chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) and mal de dbarquement syndrome (MdDS).

Dr Megan Arroll and Professor Christine Danceys experience of invisible conditions comes from both an academic and personal background. They are both part of the University of East Londons Chronic Illness Research Team, which has 20 years experience studying various invisible illnesses, and have published widely on this topic. In addition, Christine and Megan have first-hand experience and understanding of invisible illnesses, including CFS/ME, interstitial cystitis, IBS and endo-metriosis. They know exactly how these conditions affect people, having been through them themselves. Here they share their knowledge and experience, along with the personal stories of others, to offer a valuable insight for the benefit of everyone affected by an invisible illness.

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. Plus, helpful suggestions for communicating with and explaining the condition to others who are often unaware exactly how a person is affected.