The Role of Acceptance

What we mean by ‘acceptance’?

Difficulty accepting the limitations that ME/CFS bring into their lives is one of the most common struggles we come across when we work with people who have fatigue.

Sometimes, when we talk about ‘acceptance’, our patients can have a perception as if we are asking them to ‘just get on with’ their condition. This perception probably stems from the years and years of disregard they may have experienced from healthcare professionals. However, when we try to cultivate acceptance in our therapies, we do not mean ‘giving up’, and doing nothing to help yourselves. In fact, we think the opposite… We think that a genuine acceptance that you are living with ME/CFS would help enhance your willingness and ability to help yourself, improve your repertoire of useful coping strategies. Once you accept fatigue – or a difficult emotion or thought – then it becomes possible to really get to know it well, understand it, and change it. Acceptance does not mean you should like your fatigue, or should drift away from wanting to improve your quality of life.

Our approach as a service is to work with you to reduce the space ME/CFS is taking up in your lives, thus reducing its felt experience, even if we cannot entirely ‘shrink’ ME/CFS. We aim to help make this possible by helping you refocus on your ‘values’  – what really matters to you in life, therefore making your life ‘bigger’. Please take a look at the following video where we illustrate this approach.

We also think that this ‘sailing boat’ metaphor from David Gillanders nicely describes our understanding of ‘acceptance’: Imagine life is like sailing a small boat. Growing up you learn that when waves splash into your boat you can use a tool called a bailer to try to get rid of the water. One day the water starts to get very choppy and you notice water is building up in the bottom of your boat. What do you do? You use the bailer to try to get rid of some water. However, whilst you are bailing lots more water is splashing into your boat. What do you do now? Perhaps you try to bail faster, more frantically throwing water over the boat. You become exhausted but keep trying to bail more and with more speed… Whist you are busy bailing water what is happening to the direction and progress of your boat? Perhaps you would be more able to sail in your preferred direction if you could strike a balance between bailing out water and sailing? It could be helpful to reflect on your experience of managing ME/CFS, and think whether you have been bailing more than sailing… Could you start working on getting your boat moving, even if your feet are wet, by turning to your values and what is meaningful to you in life?

  • What can a lack of acceptance cause?

    So far, you may have tried lots of different treatments to help recover from ME/CFS. It is likely that you have spent a great deal of your time, energy, and money for treatments that may not have worked. It is understandable that you would aim to go back to your previous level of functioning. You may be able to improve your quality of life to a certain extent with your efforts; however, where it is not possible to make any further improvements (what is called the ‘reality gap’ in Acceptance and Commitment Therapy), acceptance will help you. A lack of acceptance at this point, and continuing putting in more effort, would have more costs than benefits. It may lead to you overdoing things and exhausting yourself, and it may also distract you from the things you love in life, the meaningful activities that contribute to your sense of fulfillment. Another cost of continuing to struggle to get rid of fatigue may be that it would lead to you feeling more helpless if it does not work.

    We explained the ‘reality gap’ in the video below.

    https://www.youtube.com/watch?v=PDCaZ-yVN-A

    The experience of ME/CFS symptoms is already unpleasant, and dwelling on these feelings can leave you feeling down and/or anxious, which may make your symptoms worse. Therefore, the response to the initial pain of struggling with ME/CFS (primary suffering) would then cause additional suffering (secondary suffering).

  • How to cultivate acceptance?

    Mindfulness practice can help you cultivate your acceptance of a whole range of thoughts, emotions, and physical feelings. Mindfulness helps us have a non-judgmental, curious stance, and allow all thoughts, feelings and sensations ‘just be’ in the present moment, as they are..

    Being understood by others and ourselves… Peer support can also be a valuable tool to cultivate acceptance. You may find that talking to people who have been through similar experiences with you, or sharing your experiences in a safe space where you feel understood would lead to accepting yourself. This safe space could be with a healthcare professional such as a therapist, or with a friend or a family member who listens to you non-judgmentally. Truly understanding yourself and your predicament would also help accepting what you are going through as it is in a given moment.

    Practicing self-compassion can help us be less self-critical, and show more kindness and care for ourselves when we are suffering, rather than beating ourselves up.].

    Reflecting and refocusing on your values and what is meaningful to you, and ‘moving towards’ them with your actions would also help you accept the things that may not be going so well in life.

The Royal Free Hospital

Pond Street
London
NW3 2QG

Patient and GP enquiries
020 7317 7529

Email
rfh-tr.fatigueservice@nhs.net