Issues that might arise from being ill with M.E/MS

The survey question for those who have had counselling was:

If you explored any of the following issues in counselling, please indicate how useful you feel it was. 1 = not useful at all   7 = very useful.

The survey question for those who want counselling the question was:

If you could explore any of the following issues in counselling, please indicate how useful you think it would be. 1 = not useful at all   7 = very useful

Pain and fatigue caused by M.E./MS

These are two significant symptoms that many people with M.E. and MS experience. Some people with M.E. consider ‘fatigue’ an inappropriate word as it does not accurately describe the symptom (MESA 2004) or its severity as some experience it. For some, pain of different types is a major symptom.

Pain and fatigue caused by M.E./MS

75% of M.E. client respondents rated this item to show that they had explored these symptoms in counselling.   Many found little or no value in exploring pain and fatigue, while 51% who want counselling think exploring these would be very useful. Some clients with M.E. will be continuously affected by these symptoms – experiencing them in the ‘here and now’ of the counselling session.

In this sample many respondents rated this item very low, though 16% of respondents with M.E. and 29% of respondents with MS who received counselling rated this item 5 or higher. One M.E. respondent who rated this item 7 wrote:

with the counsellor's empathy, belief, listening and acceptance she helped me devise a way to feel physically better by learnin to listen to my body

Another respondent explained how they found counselling helped their fatigue:

Ultimately, the counselling helped to increase my energy by releasing emotional stress

Donoghue and Siegel (2000, p.225) explain how chronic illness can lead to ‘pervasive chronic stress’.   In their research Findley et al.  (1998) explored ‘self-efficacy’:

With regard to chronic disease specifically, self-efficacy refers to “one’s confidence or belief that he or she can achieve a specific behavior or cognitive state” despite, or in relation to, his or her illness (Lorig and Gonzales 1992).

 and proposed a possible benefit for people with CFS (Findley et al. 1998):

One pathway through which self-efficacy may moderate symptom severity in chronic disease is through decreased physiological and emotional arousal.

For the respondent above it seems that emotional stress was limiting energy and by releasing stress (i.e., decreasing physiological and emotional arousal) energy was increased.   Some other respondents with M.E. found that their counsellors did not seem to understand the physical impact of the illness: 

>My therapist (who I was seeing for other reasons) did not completely understand the sense of helplessness and the inability to function physically and he blaimed the illness on stress, which was seriously detrimental to me.

>the first counsellor asked me when role playing to get up and walk into the room. i can barely walk.

>I was told that she thought that I had never had any self-esteem and my statements of the devastation that the illnesses had impacted upon my life was met with "Well, you are not in a wheelchair!"

>She did not understand that I could not physically do things, I felt she did not believe me.   It did me no good what so ever, by the end of treatment I was physically worse. 

Goodheart and Lansing (2000, pp 96-97) point out:

Out of life history and experience, therapists develop attitudes toward their own bodies and toward others’ bodies. They carry attitudes toward sickness, body functions, and disfigurement…

If therapists are not able to bring these universal, primitive, affective core sets to consciousness and integrate them, there is a substantial risk of becoming alienated from or overidentifying with the patient.

This suggests that counsellors could have difficulty working with physically ill clients if the counsellor has not integrated their own attitudes to body image.

A respondent with M.E. remarked on a benefit of counselling:

Though I felt MUCH better emotionally, I realised that the physical aspects were, in fact worse than I had identified, and was able to see the picture more clearly.

Helping a client to get a clear picture of their physical abilities and limitations may be valuable for some clients and could help them to pace their activities. There is an M.E. management strategy called ‘Pacing’.   The Chief Medical Officer’s Working Group Report on CFS/M.E. includes (Department of Health 2002, p.60): Pacing
‘Pacing’ is an energy management strategy in which patients are encouraged to achieve an appropriate balance between rest and activity. This usually involves living within physical and mental limitations imposed by the illness, and avoiding activities to a degree that exacerbates symptoms or interspersing activity with periods of rest.

Another respondent observed:

I consider it irresponsible if anyone promises a CFS/ME-sufferer he/she will improve due to a psychological treatment.

This respondent raises an important point. The British Association of Counsellors and Psychotherapists, Ethical Framework for Good Practice in Counselling and Psychotherapy (BACP 2004) states:

All information about services should be honest, accurate, avoid unjustifiable claims…

Considering the limits of present knowledge about M.E., it may breach BACP guidelines if a counsellor makes any unqualified claims about the efficacy of ‘pacing’ or any other management strategy in relation to a client’s physical illness. However, it may be useful for counsellors to be aware that people with M.E. can experience negative consequences from overexertion.   Exploration of what constitutes overexertion, what causes it and its consequences could be valuable work for some clients.   It may also breech BACP guidelines if a counsellor makes any unqualified statements regarding a client’s physical capabilities. A respondent with M.E. wrote:

"My" counselor told me point blank that the reason I could not easily walk up the stairs is that I did not want to, that there was nothing physically wrong with me, that CFS does not exist except in the mind. She made me feel worthless and incompetant, as she usually made me feel. The next afternoon I collapsed and was taken by an ambulance, needing three pints of blood for severe anemia , one of a number of complications I have had during my CFS years. This was the final straw after a number of counterproductive sessions. Obviously, this counselor was worthless.

Working with pain and fatigue

Working with a client’s pain and fatigue might require little more than simply acknowledging and accepting these as part of a client’s experience. Clark and James (2003) remark

Indeed, [Ware (1992] found that some of the suffering experienced by the people in her sample of about 150 with CFS was due to "delegitimization" or the experience of having one's perception and definition of illness systematically disconfirmed

Some respondents appear to have experienced ‘delegitimization’ of their illness and suffering in counselling. Wanting improved health for a client might seem like a natural wish for a compassionate counsellor, yet it could set-up the counselling relationship and the client for failure. Expecting changes in these physical symptoms may be unrealistic and could have an impact on the relationship. Such expectations could also represent a counsellor’s denial and defence against helplessness. Goodheart and Lansing (1997, p.99) observe:

Most therapists who treat patients suffering from long-term illness discover a sense of helplessness that underlies the work. ... Helplessness is painful, and both therapist and patient struggle to find a sense of control…

Therapists may not use total denial very often, but many deny either a partial reality or the severity of illness. The denial serves as a defense against helplessness. Therapists are quite capable of constructing a wall of denial, which is evident when they ignore information about the disease and assume a psychosomatic origin, which they believe they can cure.

Some clients with M.E. could have experienced the failure of prior relationships that they might have hoped or expected to help them. Negative transference and projective identification can occur which could feel undermining to the counsellor. Klien (1989, pp. 283) explains how projective identification can affect a therapist:

The distorted perception of reality which leads to active participation in these projective mechanisms is not easily corrected, as it invokes basic and virtually universal questions about our professional identity as well as our personal self-identity (such as whether the therapist has the ability to help a patient, or if someone else might be far more qualified or able to do so).

Goodheart and Lansing (2000, p.98) remark on another aspect of projective identification affecting counselling with chronically ill clients:

Anger may also be a marker of frustration with patients who do not improve, who have no energy, or who do not fight pain well. In the messy domain of projection and projective identification, the therapist’s anger may reflect the patient’s anger, which he or she cannot express overtly or feel directly.

A counsellor’s honesty and acceptance of vulnerability could help to avoid or overcome the complications of projective identification of counsellor and client. A counsellor’s unrealistic expectations of what they or their client can achieve, might make them susceptible to disappointment if the work is not achieving what they hope for. A respondent with M.E. wrote:

The counselling I received was not just caused me stress. The counsellor eventually said she thought my illnes was psychosomatic, and then I knew why it would never work with her. She was frustrated with me because what she did with me didn't work...she wanted me well in 8 weeks and I couldn't obligue!

My Physical Health Improved

Graph/ My physical health improved

This item is included here as it pertains to any improvements of physical wellness respondents gained from counselling.

A few respondents in both the M.E. and MS groups found some benefit to their physical health but the majority improved little or not at all. M.E. respondents who do not want counselling remarked:

>I think counseling would be counter-productive, given the purpose of counseling methodology and its irrevelance to physical illness.

>The pain/fatigue will not be erased by "talking it out".

>I only hope that I live long enough for the biological components of this illness to be identified and that those who have been instrumental in channeled research dollars towards a psychological basis (for this illness), are held accountable.

Others who received counselling wrote:

>I am a licensed psychologist. Some individuals can benefit from short term CBT because of the major life changes (losses) experienced by those with M.E.\CFS, i don't believe it will have any effect on the illness itself.

>I think counselling is helpful to deal with the illness and it can be useful in helping one be more assertive, reduce stress, and create a more fulfilling life. It did not help much with the physical symptoms

>Counselling did nothing to improve my physical health other than the indirect improvement   that anyone (whether ill or healthy) can get from feeling validated by another human being and from feeling better emotionally

>For all those with m.e. any form of psychological counselling is of no benefit in terms of a cure.

The results of this item in the survey suggest that for the vast majority of M.E. respondents who received counselling, if they or their counsellors hoped for or expected improvement in physical health then disappointment was likely to be experienced by one or both; and clients could have experienced such hopes – their own or their counsellor’s, as an introjected or projected ‘condition of worth’ (Mearns and Thorne 2001, p.8). Donoghue and Siegel (2000, p.76) observe:

The ICI [invisible chronic illness] sufferer may be buffeted from two directions.   First, he is the victim of skepticism [sic] and told that his illness is all in his mind. Then, when the illness is established, he may be victimized by theories that posit the mind as the all-powerful curative agent and challenge the patient to cure himself by good spirits.

A respondent with M.E. wrote:

I went through a long-term psychoanalysis, and for the analyst it was evident from the very beginning that this treatment will not help with my CFS. But, hope against hope, I preferred to deceive myself for a very long time and thought it might help with my disease anyway. It did not. Any improvement was a result of the natural development of the disease and of the removal of chronic infections I had, but not a result of the psychoanalytic treatment. Of course I learned to better cope with the enormous restrictions, my childhood conflicts, my present relationships, my self-esteem etc…

Giving an overall judgment I should say that this psychoanalysis was very valuable for me.

This respondent entered therapy with some hope of improving health while the analyst appears not to have shared, encouraged or been drawn into such hopes. The relationship appears to have worked well, the respondent coped with the disappointment and has named some valuable achievements.

Bacon (2004) remarks:

For in all times, in the opinion of the multitude, witches and old women and impostors, have had a competition with physicians.

(Francis Bacon (1561-1626), in The Advancement of Learning, 1605)

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