Working Therapeutically with Clients with CFS/ME: Some Dos and Don’ts

Below is adapted from a recent article I'm currently working on for Therapy Today

Many clients with Chronic Fatigue Syndrome/ME are often advised to seek therapy as a way of managing the thoughts and feelings the condition can bring up. While therapy can help clients come to terms with their diagnosis, Dr Charles Shepherd, Medical Adviser to the ME Association, warns against any therapeutic intervention the premise of which regards the condition as psychosomatic, and one that can be resolved through somehow reprogramming the mind. Rather, the focus of any psychotherapeutic intervention should be on helping clients accept and manage their condition.

From learning from the client to avoiding the 'blame trap,' below are a series of 'dos and don'ts' when it comes to working with clients with CFS/ME.

Do:

• Learn from the client, and be open about what you do/don’t know

CFS/ME garners its fair share of false assumptions, so allow yourself to be educated by the client, and be prepared to revise what you already know about the condition. In the spirit of being congruent, it’s ok to be honest about not knowing a lot about a client’s illness, but expressing a keenness to learn from them and conduct some further research communicates that you do not hold rigid, and perhaps incorrect, ideas about ME/CFS. For someone with the condition, this in itself can be a new and refreshing experience.

• Meet the client where they are

As per the previous point, not all clients may understand CFS/ME as biomedical, that is, a physical illness. They may have been told/choose to believe there is a psychosomatic element as a result of their lived experience, and that may form the basis of a recovery path for them. When working therapeutically with a client, it is important to be respectful of their perspective and not disavow how they conceptualise their condition; at the same time, be open about the limitations of therapy. Coming to terms with a bereavement, for instance, may relieve a lot of emotional stress for the client, but be careful not to collude with any notion that this will in some way ‘cure’ CFS/ME, just as you wouldn’t claim that therapy will help someone recover from flu, or heart disease.

• Contract with the client and aim to check in regularly

Clients with CFS/ME may come to therapy for all sorts of different reasons. They may need support with coming to terms with their illness, or they may want to use the sessions for more practical reasons, such as problem solving or prioritising tasks in line with energy levels. Be clear on what you as a therapist can offer, and signpost to alternative sources of support if necessary. Regular check-ins can be helpful, as it enables you and the client to revisit the aims of their therapy, and whether they are being met.

• Consider the environment

Many people with CFS/ME experience sensory processing difficulties, and are sometimes unable to tolerate environments that are too hot, cold or bright. It might be a good idea to ask the client about how they experience the therapy room, and indeed the waiting room, in the first session, and be led by them as to what adjustments you could reasonably make, if necessary. Clients may not always be able to attend sessions, as CFS/ME flare-ups can sometimes preclude speech and mental processing, as well as physical strength. It may be worth acknowledging that in the first session, and working out a system whereby the client feels they can alert you in good time as to whether they can’t attend a session. On the other hand, unless the client brings it up themselves, talking about DNAs could come across as reprimanding, and a client who may once have been very reliable may feel that they are now experienced as an unreliable person. Tailor your approach to the quality of relationship you feel you have with the client, and assure them that you understand that having to sometimes cancel and put self-care first is ok.

• Remember that pro-recovery may not be the best attitude

According to the ME Association, few people fully recover from CFS/ME, though it is important to note that few people get worse, although this can happen. Most people with the diagnosis tend to ‘manage’ by pacing themselves and taking on considerably less than they used to. Those in the CFS/ME community call for a therapeutic approach which helps a client accept the illness and come to terms with the loss of their former self. Many who have endured the illness for years find prompts about recovery – although intended as hopeful – abstract and unhelpful. The energy it takes to persuade close friends and family members that your accepting your illness is not just you being pessimistic is vast; try to walk alongside the client in their path to acceptance, as you would any grieving client, if that is where they lead you. On the other hand, if the client hopes to make a full recovery, be alongside them in that journey, too.

• Support a client to come up with metaphors

If a client reports that they struggle to describe the fatigue and/or pain they experience, you could work with them to come up with helpful comparisons. If the client lands on something that really encapsulates their illness, this can help them when it comes to explaining to close friends and family, especially those who try to compare their own feelings of ‘tiredness,’ which can be very frustrating for those with CFS/ME.
 
Don’t:

• Belittle fears about the condition worsening

CFS/ME can sometimes get worse, although according to the ME Association, this isn’t common. A client’s concerns about making their condition worse are absolutely valid. A desire to ‘rescue’ the client by talking down their fear and assuring them their condition won’t worsen can point to an unwillingness on the therapist’s part to fully accept the nuances of the illness, and risks the loss of the client’s trust.

• Blame the client

According to the charity Action for ME, the causes of CFS/ME are as yet unknown, though extreme stress and/or trauma can be implicated. Although some clients may find it helpful to reflect on what brought on their illness, unless they bring it up themselves, the therapist’s prompting an exploration of cause may be experienced as a means of somehow holding the client accountable for their illness. Stress can be a causative factor in many illnesses, from cancer to strokes; it is unlikely that a therapist would explore causation in these instances. While stress may be involved in the onset of the condition, destressing is certainly not the cure; try to avoid implying psychosomatic forces are keeping the condition going, unless the client wants to go there.