Elizabeth Turp is an integrative counsellor working in NHS primary care and private practice in the UK. In 2005 she became ill with CFS/ME.
Here she answers a few questions about her new book, Chronic Fatigue Syndrome/ME, which provides families and friends with an accessible introduction to the condition, and explains what can be done to support those who have it.
What is CFS/ME, and what is your personal experience of it?
Chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) is a complex, variable and disabling illness in which the sufferer experiences extreme fatigue, flu-like malaise, sleep problems, and a range of other possible symptoms (including pain, cognitive problems, palpitations, bowel problems and dizziness) that are made worse by exertion. These are experienced across a wide range:
- People with ‘mild’ CFS/ME are able to work and may appear to be ok, but often struggle and are unable to do much outside of work;
- ‘Moderate’ CFS/ME brings greatly reduced mobility and participation in everyday life, an inability to work, and increased pain and cognitive symptoms;
- ‘Severe’ CFS/ME will often mean being confined to bed and finding even eating and talking difficult.
The book includes case studies and advice from people who have CFS/ME at all these levels to help readers understand its complexity and changeable nature.
I became ill gradually in 2004 and was lucky to get diagnosed quite quickly in 2005. My family and friends mostly struggled to understand CFS/ME, but then so did I, and so do doctors. Some people found it so difficult that they ignored or dismissed it, which hurt, but others were unbelievably supportive, patient and loving. To put it bluntly, my relationships either adapted to my changing needs and symptoms, or were badly damaged. At my worst I was unable to work, and I couldn’t read, walk, speak on the phone for more than a few minutes or drive without pain. As is usual with CFS/ME, not many people saw the real ‘rock bottom’ times, I tended to not tell my family how bad I felt. As I began to get better my relationships with others continued to evolve, not least because I had to put myself first in order to make the changes that my body needed to recover. Some of these baffled other people because I didn’t ‘look ill’ but I was lucky enough to have enough people around me who accepted what I was doing and made the effort to understand and support me. Just as my expectations of myself have had to radically change, so have my loved ones expectations of me. All my relationships are very different now, mostly for the better!
What are the hardest aspects to deal with for family and friends of people with CFS/ME?
As you will see from the huge variety of topics covered in the book, there are many difficulties that CFS/ME brings for those close to a sufferer. Seeing your loved one suffering and in pain, struggling and facing potentially losing everything and not being able to make it better is probably the worst. The changes in role that someone with CFS/ME is forced into, no longer being able to do everyday practical and social activities, can have a huge impact on family members and friends, both emotionally and by increasing the pressure on them. For friends, I think the hardest thing is being able to find ways to keep communication going. The more understanding friends can get about CFS/ME the easier this is to do because it is often necessary to find new ways to keep in touch that fit in with the sufferer’s symptoms.
What are the most helpful things caregivers can do for their loved one with CFS/ME?
The final chapter of the book ‘Top ten tips on how you can help’ discusses the most important things friends and family can do to help their loved one but also themselves. The most important of these is to listen to your loved ones actual experience and needs, being careful not to assume you know what they are going through or that it is always the same. This can also help them to cope with the emotional impact of the illness, which can often bring isolation and fear. Ask them what helps them or what they would like you to do. Physically there are many specific things that can help that are discussed at length in the book, but it is hard to generalise here as each person’s experience of CFS/ME can be so different.
What is the most important thing caregivers can do to help themselves?
This question is central to the book because it is intended first and foremost to help the friend and family member cope with what can be a very upsetting, confusing and difficult situation. Looking after themselves by eating, sleeping well and making time to relax is important, and also being honest about their own limitations – this is the key to negotiating levels of support and contact that suit both the sufferer and the friend or family member.
What else would you like readers to know about CFS/ME?
Although I have made a good recovery from CFS/ME and currently have few symptoms, I have to live a much reduced lifestyle to stay well – good sleep routines, minimizing stress, not saying yes to every request and seeking a lot more support than I used to, especially when I get over-tired. I only work part time now, which gives me the flexibility and time to focus on rest, relaxation and maintaining my physical wellbeing. Recovery from CFS/ME is the ultimate lesson in balance, and you can have a relapse. The danger for people whose CFS/ME symptoms have improved is that others see them looking well and doing things again (and writing books!) and think this means they are fine, when the reality is far more complicated!
Copyright © Jessica Kingsley Publishers 2010.