The survey question for those who have had counselling was:
How true do you find the following statements about your counsellor?
1 = not true at all 7 = very true
The survey question for those who want counselling the question was:
How important would it be to get the following from your counsellor?
1 = not important 7 = very important
This question is not only about showing sympathy but working empathically - striving to see things from the client’s position and taking the client’s problems seriously – ‘caring’. Mearns and Thorne (2001 pp.15-16) remark on empathic understanding:
When this is present the counsellor demonstrates a capacity to track and sense accurately the feelings and personal meanings of the client; she is able to learn what it feels like to be in the clients skin and to perceive the world as the client perceives it. ... To be understood in this way is for many clients a rare or even an unique experience. It indicates to them a preparedness on the part of the counsellor to offer attention and a level of caring which undeniably endows them with value.
and explain why this can be so valuable in counselling (Mearns and Thorne 2001 p.16)
Furthermore when a person is deeply understood in this way it is difficult to maintain for long a stance of alienation and separation. Empathic understanding restores to the lonely and alienated individual a sense of belonging to the human race.
This aspect of the counsellor’s qualities connects with some of the other counsellor qualities used in the survey. It implies understanding the client’s problems, accepting their illness and not judging. If a client with a chronic illness feels that their counsellor cares about their suffering then they may feel invited to express and describe their suffering.
Many respondents rated this item high yet 24% of the M.E. group and 16% of the MS group rated this 3 or less. Respondents with M.E. wrote:
>My counsellor couldn't understand that I was suffering emotionally as a direct result of having ME & the consequences this had on my life, because apparently I looked very cheerful in the waiting room and appeared to be a happy, well-adjusted person. I am a well-adjusted person, but why would I go to counselling if I was as happy as larry?!
>The therapist offered minimum support, provided much negativism about me (plus her hypotheses made up from no personal or factual basis), minimized my life experience of pain/suffering and complained about her back problems on a regular basis.
There appears to be a lack of empathy here, the counsellors do not seem to have engaged with the client’s experience. Two respondents seem to have experienced a lack of caring within a basic aspect of the working alliance - agreeing appointment times:
>I have had problems getting appointments at times I can manage and if I tell them I then can't manage that time they just say I am avoiding therapy, whereas the time factor is a major issue for me. I can't not do early morning or evening. I think the time of the appointment is an important issue for CFS suffers. They just don't understand that I suffer for days afterwards, they really don't understand the debility.
>There was an issue about appointment time. I was not as bad then as I am now. I said I did not get up early as I did not sleep and was fatigued in the morning. She felt in that case I should definately come for a 9am appointment as it would get me back into a more "normal" routine. She did not understand that I could not physically do things, I felt she did not believe me.
The BACP (2003) Ethical Framework includes under, ‘Values of counselling and psychotherapy’; ‘Striving for the fair and adequate provision of counselling and psychotherapy services’. It seems reasonable to assume that this means making counselling available with consideration for a client’s physical limitations. Disability could prevent some people with M.E. from receiving counselling. Respondents with M.E. who would like counselling wrote:
>I think that I would have problems at this point with even telephone counseling because it takes so much energy to think and that drains me. I do think that counseling would be helpful if I could do it.
>I am a completely different person now. I was physically active, outgoing, full of emotion. I don't think I'd find the words to explain my illness, my feelings. My brain too often feels like it's full of wool and therapy is based on talking. Talking exhausts me now.
>I had difficulty with this survey, realizing that just thinking about 'doing' therapy made me very tired. It would have to be an experience that would not add to my stress and fatigue. I can't imagine therapy being like that.
>I have not had counselling as M>E> keeps me mostly homebound
No definitive cause has been identified for M.E., and in spite of substantial scientific and medical evidence of physical abnormalities – as well as the experiences of those who have the disease – some doctors still doubt its existence or claim that it is a psychiatric disorder. People with M.E. have often suffered a great deal as a result of the contested existence and causation of the disease. They may have been told that there is nothing wrong with them and sometimes wait for months or years to be diagnosed. A respondent with M.E. who does not want counselling remarked:
My gp keeps telling me the condition doesn’t exist it’s all in my head, so counselling would just confirm his opinion.
A respondent with M.E. who received counselling commented:
my first MD did not believe in CFS and sent me to a psychiatrist who did not believe in CFS and said I was depressed.
Jason et al. (2004) observe:
Individuals with chronic fatigue syndrome (CFS) have frequently reported negative experiences when under the care of medical personnel. For example, Anderson and Ferrans (1997) found that 77% of individuals with CFS reported past negative experiences with physicians…
57% of M.E. and 64% of MS respondents rated ‘my counsellor accepted my illness’ 5 or higher, however, 32% of the M.E. group rated this item 3 or lower, indicating degrees of doubt that their counsellor accepted their illness. It is strange that in the MS group less than half rated ‘my counsellor accepted my illness’ as ‘7’. This disease has been medically recognised and diagnosed for several decades. Respondents with MS remarked:
>I did go and see a separate counsellor but never went back. I felt as if my childhood was being blamed for MS.weird!! We never got off that issue.
>I saw this person only once. He wrote on a piece of paper 'Get well and return to work'. Good grief!!! It took a long time for me to get over that visit.
Another respondent observed:
Many of the problems that I experienced were to do with feeling validated and believed, by society, medical professionals, and especially the Benefits' Agency...but most of all by myself. Personally, I would not have considered entering into counselling if prescribed, and certainly not within a psychiatric setting. It's too difficult to imagine forming a relationship of trust and respect, when you suspect that the therapist believes that the illness has a completely psychological aetiology.
This respondent mentions a concern that is common to many who suffer with chronic illness –self doubt. Donoghue and Siegel (2000, p.29) remark on this:
Anyone who begins each day awakened by pain is convinced that something is wrong with his body. But when he attempts to describe the pain to his physician or to a family member and is met with bafflement or suspicion, he can easily begin to question, “is it really that bad? Am I imagining it?…”
People with M.E. who want their symptoms to be acknowledged may feel they are taking the risk of being dismissed as weak or complaining. It can be seen in the comments included here that some respondents have been hurt by a counsellor’s perceptions and judgements about the client’s illness. The reluctance of a client to describe their physical sensations and perhaps engage with their emotions around their experience could represent a defence. Trust in the counsellor may be a necessary condition for a client to relinquish the protection they have built against the hurtful effect of their illness and suffering being dismissed. It seems that some counsellors might dismiss or diminish their client’s suffering as their own unconscious defence.
A client with M.E. or MS may be suffering with an illness that has drastically changed their life as they knew it and make every day – and every counselling session – a struggle with pain and fatigue. If this basic state of how things are is not accepted it is difficult to see how the relationship can work.
Some clients may not want to work with the ‘M.E. issues’ described here or other problems associated with having M.E. as they may have different goals for their counselling work. Others might avoid exploring these issues to save themselves from the actual or feared lack of understanding as experienced by some of the respondents.
Many people with M.E. – especially those who have been ill for some years may have already encountered a lack of understanding and disbelief from others, one respondent wrote:
The sense of betrayal from disbelief on the part of relatives and friends can come out of nowhere. You feel that people understand, then you find out otherwise. It causes general distrust. Has "the CFS myth" adversely affected a counselor's view of you? You don't know. Counselors don't understand the incredible impact of this stigmatizing process. The general bad feeling about one's self, being sick and stimatized, leads to the fear that talking about interpersonal problems will only encourage more disrespect and create another problem. Keep a tough outer exterior or you have no sense of dignity at all.
Clients with M.E. might quite reasonably be sensitive about being misunderstood, and when it happens in counselling the consequences can be painful for the client:
I very rarely quit anything, but I had to quit both therapists for my own sanity! In therapy, I was becoming more anxious and depressed primarily because overall they just could not understand how terrible these illnesses are and minimized the negative issues that are overwhelmingly subjected upon us. Being misunderstood by friends, family, etc. is what a lot of us experience and I did not expect this from therapists.
Donoghue and Siegel (2000 p.4) observe:
Patients come to psychotherapy with self-doubts and fears that they will not be understood…
Providing a client with the experience of being understood is important in many approaches to counselling. The fear of being misunderstood could prevent engagement in the relationship and hamper the therapeutic work. Overcoming such fear may be essential to allow a client to express their true feelings. In his book on phenomenological research methods Moustakas (1994 p.12) cites van Kaam who described ‘really feeling understood’ based on his research:
The experience of “really feeling understood” is a perceptual-emotional Gestalt: A subject, perceiving that a person co-experiences what things mean to the subject and accepts him, feel, initially, relief from experiential loneliness, and, gradually, safe experiential communion with that person and with that which the subject perceives this person to represent.
In this survey 38% of M.E. respondents and 24% of MS respondents rated this item 3 or less. They have not felt their problems were understood by their counsellor. A respondent to the survey for people with M.E. who do not want counselling remarked:
It is bad enough to be in the presence of an ill-informed, uneducated, biased physician. I shudder to think what an incompetent (misinformed, unknowledgeable, biased) counselor would make of ME/CFIDS related issues.
Other respondents commented on how they did not feel understood:
>I went feeling low and vulnerable, needing support and the tools to deal with this situation with courage and dignity.
I stopped the sessions because I felt misunderstood, confused and starting to self doubt. I even went through a period of thinking I was imaging all of this. I pushed myself harder and my health deteriorated to the point of being hospitalised!
>whilst I understood that the process of counselling would bring up some angry feelings I feel they were judgmental, pathologising and did not understand the nature and impact of ME at all
>A lot of the therapy time (as with the CBT), seemed to be spent in my justifiying my condition and what I could and could not do. I spend enough time doing that in everyday life and did not want to do it in therapy as well. I despair of finding anyone who understands. Each time I see a professional who does not, it makes me feel worse about myself.
An M.E. respondent who gives support to two friends with M.E. remarked:
My two friends both say that the most wonderful thing about talking to me is that I always understand and that I never disbelieve them.
M.E. can be a difficult illness to understand, even for those who are affected. Developing a trusting counselling relationship with a client who has already experienced being misunderstood by some whom they expected to help them could require time and patience.
Clients may be deprived of the possible benefits of exploring their physical symptoms if they do not feel accepted and understood by the counsellor:
I did not feel she understood my symptoms so I tried to hide them and understate them so she believed me.
This respondent felt the need to understate her own suffering in favour of being believable to her counsellor. It appears that the counsellor was perceived to have made a judgment about the client’s physical symptoms.
For those with M.E wanting counselling it is clearly important to the vast majority to believe that their counsellor will not judge them. For many who received counselling this wish was not or only partly met. Donoghue and Siegel (2000 p.189) remark on how making judgements can affect the therapist:
When the therapist is only vaguely aware of his needs and feelings, or completely unaware of them, he tends to form judgments of the patient. ... Once a person has judged, it is difficult for him to reflect honestly on his own feelings. He focuses on his judgment, not on his feelings.
Not only can the client be hurt by a perceived judgement but it seems that competence could be affected through misdirected focus if a counsellor makes judgments. Respondents with M.E. wrote:
>But at the least she has developed a respect for me, and no longer judges me. I can't say that the relationship is helpful, though.
>I have put that I did felt she judged me because by not acepting what I said about being too ill to come at that time, she was making a judgement about me and saying to me that she did not believe in my illness,
>Ridicule and humiliation are not part of the counselling process. It truly is a matter of feeling safe, comfortable and connected, and accepted without being judged. If it doesn't feel right, get out of there!
Åsbring and Närvänen (2003) researched, ‘physicians perspectives on patients with chronic fatigue syndrome…’, and observed:
The results suggest that there is a discrepancy between the ideal role of the physician and reality in the everyday work in interaction with these patients. This may lead to the professional role being questioned. Different strategies are developed to handle the encounters with these patients. The results also illuminate the physician's interpretations of patients in moralising terms.
Some respondents to this research appear to have experienced moralizing - judgements - by their counsellors, which could be a counsellor’s response to helplessness or feelings of inadequacy. If such judgments impact with a client’s sensitivity, perhaps due to ‘delegitemization’ of their illness, then the consequences for the relationship could be disastrous.
How the respondent rated this quality might be seen as an indication of perception of the counsellor’s congruence. A counsellor’s congruence is a vital aspect of the person to person relationship. It means that the client is in relationship with another person who is being real, not assuming a role or working with a hidden agenda.
Of the M.E. group who received counselling 25% rated this item 3 or less suggesting that they have doubts about their counsellor’s honesty with them.
When a counsellor is being congruent their statements have more weight, they are being honest and genuine and their words are in concord with their body language and expression. Through congruence a counsellor can show trust and accept vulnerability and limitations. Mearns and Thorne (2001 p.97) remark on one way that congruence can be important through:
the counsellor’s willingness to be open about weaknesses. She is open to being confused, powerless, mistaken, and apologetic, when these are parts of her congruent response to her client. This openness about apparent weaknesses can introduce whole new possibilities for self-acceptance in the client who spends his life in fear of weaknesses in himself.
And describe another important benefit (p.97):
Congruence is significant because it enhances the quality of the response which the counsellor gives to the client. In being consistently congruent the counsellor is offering to the client a reflection of the effects which the client’s behaviour has on another human being whose integrity can be trusted.
An M.E. respondent who received counselling remarked:
She was clear what she believed about the mind affecting the body in general, but was open to the possibility that this may not be true for me. So she was honest about her beliefs and I sensed her non-judging, openness.
Clarkson (2002 p.17) includes this observation:
According to Malcolm (1981) honesty and spontaneity can correct the patient’s transference misperceptions, making the psychotherapist’s responses unpredictable and therefore less likely to be manipulated by the patient. The patient’s distrust may be relieved when the psychotherapist provides a model of authentic being with which he can identify.
A counsellor’s honesty might be important if it means that the counsellor’s responses are less likely to be manipulated. People with M.E. have sometimes lost control of many areas of their lives, as (Donoghue and Seigel 2000 p. 74) remark:
The person with ICI suffers from a horrible sense of no control. He cannot control his illness – it has a course of its own. Exacerbations will come and go. He cannot control his fatigue or his pain. He cannot control his future by planning carefully.
If the counselling relationship happened to become or represent an aspect of an M.E. sufferers life over which they struggle for control, or conversely, expect to control them, the relationship could suffer.
This aspect of a counsellor’s qualities receives scant mention in many counselling text books and research.
A substantial percentage of respondents who received counselling rated this item 5 or higher indicating that they found their counsellor to be patient or fairly patient. 21% of M.E. respondents who received counselling rated this item 3 or less indicating that they did not find their counsellor always patient.
Misch (2000) remarks:
To come to a true and deep understanding of another person does not happen immediately or easily; it takes time and patience, effort, trial-and-error and hypothesis testing, an open and inquisitive mind.
A respondent with MS wrote:
I felt that she was in a rush to get through the sessions and for me to move on to a resolution quickly - I felt that she was out of her depth, and decided not to go back.
Mearns and Thorne (2001 p.111) point out:
Pacing is important at the outset. An unhurried pace indicates that there is space to breathe, a certain freedom in the air.
If a counsellor appears impatient it could suggest that the client is not doing something right or quickly enough, they may not be changing, learning, exploring, speaking or shutting-up when the counsellor wants them to. The client, quite simply, is not being good enough, and this could harm the relationship.
Some people with M.E. and MS have cognitive difficulties. They can forget simple information, struggle to find words, forget what they were talking about and some find speech difficult. Cognitive problems may not always be readily apparent yet affect many people with M.E. A study on ‘the quality of life in persons with chronic fatigue syndrome’ (Swenson 2000), found that 50% of patients with CFS named cognitive dysfunction as their most disruptive symptom.
Michiels and Cluydts (2001) reviewed neuropsychological functioning in chronic fatigue syndrome and include in their conclusions:
The current research shows that slowed processing speed, impaired working memory and poor learning of information are the most prominent features of cognitive dysfunctioning in patients with CFS.
Many aspects of working with a client who has M.E. might test a counsellor’s patience. If the client has been used to achieving their goals quickly, is highly motivated or has unrealistic expectations of themselves or the counselling process, then actually exploring patience could be a valuable task for the work. Respondents with M.E. remarked:
>Also helpful has been learning about my work beliefs, having always pushed myself hard... too hard!
>We went on from there to look at what has driven me to push myself so much, this was an area I wanted to explore as I think that unless I can understand how I got to here, when I get well I could easily repeat the process & that does not appeal!
For most respondents with M.E. who want counselling being able to trust their counsellor is clearly a criteria that they want met, yet 20% of M.E. respondents who received counselling rated this item ‘1’. The MS group gave varied values with 30% of values in the more neutral - yet not entirely encouraging range of 3 to 5. A respondent with M.E. who developed trust in a new counsellor after previously having counselling where trust appeared to be lacking, explained how trust developed and helped:
As I trusted her I could admit more and her method of working with an open mind, non judging and really trying to understand where I was coming from built this trust. Any attempt I ever picked up of the other trying to convince me about mind/body connections, as with the other therapist, instantly broke my trust and rendered me back feeling victimised and on the defensive.
Issues around trust and understanding may be implicated in the most common theme in the comments submitted with the surveys – receiving counselling from a person who either has the same illness as the client or has a good understanding of it. Murgatroyd remarks on client and counsellor matching (Murgatroyd 1996 p.37)
Gender and culture matching between the helper and the person in need are desirable because the person in need seeks to relate at as many levels as possible to the person who is helping them.
Clients may find it easier to trust and relate in counselling with someone who has the same illness or who can demonstrate sound understanding. Being able to relate without the fear of being misjudged or misunderstood could enable a trusting relationship to develop more quickly. Respondents from every survey group commented suggesting they want counsellors who have first-hand or immediate experience of their illness or specific training or sound understanding, i.e.:
>ME is an illness that raises great scepticisms in those who do not have it. I could have no faith in any counsellor who does not have the illness
>The counsellor should have ME or be recovered from it…
>I was very fortunate to find a psychologist who specialized in people with chronic illness and who had first-hand experience dealing with CFIDS
>My current counselor, (…), is the best of the bunch so far, but sadly she also fails to be as supporting as she could be if she had a better understanding of M.E.
>I really think that those counseling people with chronic illness, either be sufferers themselves, or have special intensive training in the area,
>Unfortunately there seems to be very few good quaility counsellers who truly understand the symptoms, suffering and problems associated with Neurogenic ME and subsequently dish out totally inappropriate and dangerous advice.
>I think counselling is a valuable resource for patients but you need to have/find one that understands ME. Counselling can do more harm for the patient if your counsellor does not understand ME.
>I would recommend that counselors who have had CFS, or have a close relative/friend with it are best qualified to treat CFS patients. There is just no way to really understand the devastating effect of this illness if you don't live with it day to day.
>I think that anyone with ME wanting counselling should make sure they see someone with experience in treating chronic illness.
>This disease is so utterly desvastating, I would not care to counsel with a professional who did not have an intimate knowledge of this disease and how it destroys your life. By that, I mean: being a patient yourself, living with a loved one everyday and caring for someone who has it.
>It is important that you find a councillor that you can relate too. He/she must be understanding & have a good knowledge of MS and what you are going through.
>i think the counselling would have been better if it had come from a person who had M.S. themselves
For these respondents it is important that their counsellor should have first hand experience or really understand the illness. A respondent with M.E. wrote:
My counselor is wonderful. (He sees 4 others with CFS/ME/FMS.) He has helped me tremendously with my pain management, my depression,bi-polar, and even my self-esteem. We're still working on anger...but I've come a long way. In my opinion, everyone with these problems would highly benefit from counselling, as long as they see someone that has a good working knowledge about CFS/ME/FMS.
The above graph shows the ratings submitted for certain counsellor qualities. Overall the item ‘my counsellor understood my problems’ was rated lowest while ‘my counsellor was patient with me’ was rated highest. The overall average rating for all the items follow similar trends. The following graph is of a similar type showing how respondents rated different measures used as efficacy indicators.
Other than ‘physical health improved’ the lowest overall rating with these efficacy indicators was for ‘counselling helped’ and the highest for ‘I recommend counselling’. As with the counsellor graph the ratings follow similar trends. With some of these items combined and averaged it is possible to see how individual respondents rated their counsellor qualities and efficacy2.
It can be seen from the above graph that a respondent’s averaged rating of counsellor’s qualities is related to averaged rating of efficacy2 items, though the correlation is quite variable. Respondents who rated the counsellor items higher (5,6,7) rated efficacy items variably, though mostly 5 or higher. Respondents who rated counsellor items low (1,2,3) also gave low ratings for the efficacy items. If the perceived and rated counsellor qualities are accepted as some indication of the counselling relationship, then this tendency matches current thinking about counselling that assigns importance to the relationship. Clarkson (2002 p.5) observes:
Research has also shown that one of the most overriding and influential factors in the outcome of psychotherapy is the relationship between psychotherapist and client (Frank 1979; Hynen 1981)
The relationship is consistently being shown in research investigations as more significant than theoretical orientation.
The counsellor criteria rated by respondents
in this research is a subjective assessment of some
of the counsellor’s qualities, and might not necessarily
describe the quality of the relationship. It can be
seen in the above graph that some respondents rated
counsellor qualities highly but did not rate the therapeutic
work as very helpful, possible reasons for this will
be explored below.
Back to 10/ How counselling works - HOME - Next, 12/ Client learning