How is counselling useful for chronic fatigue syndrome?

CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a chronic neurological condition which affects 250,000 people in the UK. It’s believed that a significant proportion of those diagnosed with long covid may actually have ME/CFS, so this number may be substantially higher.

CFS/ME is a physical illness - not a mental health condition, so what role does counselling have in helping people who have it?

How can counselling help? 

For many people diagnosed with ME/CFS, the onset of their condition can mean feelings related to loss. We often associate loss and bereavement with losing a loved one, but we actually experience the same feelings and thoughts with other types of loss. The onset of ME/CFS can bring on multiple losses at once: of health, of the ability to do things that are important to the person, and sometimes of independence. Being unable to do things that the person with ME/CFS previously enjoyed or took for granted can be particularly difficult. As a person comes to terms with their ME/CFS they may realise that their hopes for the future may not be possible with their condition, and this can exacerbate feelings of loss.

These feelings often continue to occur repeatedly throughout years of living with ME/CFS as the person continues to be confronted with things they can no longer do. This can particularly affect younger people with the condition who experience their peers achieving milestones of growing up and having new experiences, that they can’t. Counselling can be a space to explore these feelings of grief and loss.

Sometimes living with ME/CFS can bring up feelings of anger, resentment and envy, particularly when peers are doing things the person with ME/CFS wishes they could do. These emotions can be hard to express with family and friends, especially as some of these emotions are seen as less ‘acceptable’ societally, so an impartial person like a counsellor can help. All emotions are welcome in therapy.

ME/CFS is an invisible condition, where most of the symptoms are not obvious to others. Often people with ME/CFS are confronted with “but you don’t look sick” and variations on this. This can feel incredibly invalidating and, if experienced repeatedly over time, can build up to be detrimental to the person’s wellbeing. It’s not uncommon for people with ME/CFS to have their symptoms dismissed or minimalised by medical professionals too, which can be traumatic. Counselling can be helpful as a space to explore the feelings relating to these experiences and look at means of responding to those who minimalise the condition.

Often people’s sense of identity in western society can be based on what they do - for example, their job, their hobbies, their achievements. Often these activities are lost in the onset of ME/CFS, and with that can come a loss of identity. In our culture we tend to value productivity, so to be forced into a lack of productivity can affect a person’s self-esteem. A person’s role in relation to others may change dramatically when they have ME/CFS, particularly if they had previously been very independent and are now reliant on the care of others, and this can affect identity and self-worth. In counselling, this loss and change of identity can be explored, and a new identity and sense of self can be formed.

Some counsellors have training and understanding of pacing and energy-management techniques. These counsellors can use more coaching-oriented techniques to support a person with ME/CFS with the practical elements of managing their condition. This can include education about energy management, and the implementation of lifestyle changes and goals to support living well with ME/CFS.

Occasionally, people with ME/CFS develop thought processes as a response to their condition that contributes to behaviours that exacerbate ME/CFS symptoms. Although these thoughts are not the cause of the ME/CFS symptoms, identifying the links between emotions, thoughts and behaviour can help make sure this isn’t a factor exacerbating symptoms. 

For some people, trauma and mental health issues are underlying factors in the development of their ME/CFS and, on the flip side, the onset of ME/CFS is associated with developing depression and anxiety. The mind and body are inextricably linked, and so mental health and physical health profoundly affect each other. Paying attention to mental health and addressing any depression and anxiety can sometimes reduce ME/CFS symptoms, especially where symptoms cross over (e.g. depression can cause a loss of energy).

Although counselling cannot make ME/CFS go away, it can help with coming to terms with all the complexities of living with a chronic condition. Everyone’s experience of ME/CFS is different, so how people may benefit from counselling regarding their ME/CFS will vary too. It can be hugely helpful to have support to navigate the complex emotions and changes that come with ME/CFS.