Feeling hurt by people's misunderstanding of M.E. / MS

People with M.E. may feel hurt and misunderstood by family, doctors, employers, counsellors and others. Some people with this illness have had to struggle for years to get a diagnosis and sometimes feel they are not taken seriously.

Feeling hurt by people’s misunderstanding of M.E. / MS

46% of those who received counselling rated this item 3 or less and 30% rated it 5 or higher.   Those wanting counselling mostly thought this item would be useful to explore. 64% of respondents with MS had explored this in counselling and some found this useful. Many people with M.E. or MS do not look ill – even though they may be severely affected by their illness. Misperceptions can lead to labelling such as ‘yuppie flu’ or ‘malingerer’.   A respondent with M.E. wrote:

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.

Other M.E. respondents observed:

>From my experience, I understand the majority of patients - myself included in the past - feel victimised, misunderstood and blamed for their symptoms being "all in the mind" by the majority of people around them. When severely ill, family scoffing at symptoms thought to be self-inflicted, mental, a sign of not coping with life,seen as simply "needing to pull ourselves together and get a life", this can be cruel. (snip) Most people with M.E. will avoid counsellors like the plague - to go would be an admission of defeat, final proof to others they were right and it was mental. We therefore lack the support we need to cope with not only a disabling illness that our G.P.s doubt but one which others look down on us for.

>I recieved terrible treatment from all but one of the counselors that I have seen. All at first blamed me for somehow causing my illness, and spent a great deal of time trying to convince me that I was somehow the cause of it. I managed to convince all but the abusive one that they were wrong to jumpt to such inappropriate conclusions.

Åsbring and Närvänen (2002) researched ‘Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyalgia’, and remarked:

A person with a stigma can be either discredited, which means that he or she is “different” in a way that is visible or known to others, or discreditable, which entails having a deviancy that is not manifest (Goffman 1972). When an illness is disclosed, the risk of being discredited arises. However, a stigma begins with the acceptance of a stigmatized identity caused by the reaction of family, friends, and caregivers to one’s condition (Kleinman 1988). Caregivers sometimes assign ill people a discredited identity that differs substantially from their earlier self-image (Coyle 1999). For example, when the patient does not display any external signs of illness and tests do not show abnormal results, a caregiver, for example, a doctor, may regard the patient as someone who is simulating illness or is mentally ill (Charmaz 1983).

Åsbring and Närvänen (2002) then discuss the ‘stigmatizing aspects’ in their research findings and state:

The pattern in the interview responses indicates that, above all, two aspects were stigmatizing: The women experienced their moral characters called into question in interaction with others. They also experienced distress from being psychologized by others, doctors in particular.

Whether counselling is addressing thoughts, feelings or behaviour the work is often of a psychological nature. Due to the nature of this work it is possible that a client who has experienced stigma could suffer hurt at some point in the counselling due to perceived or actual psychologizing of their experience. Also because of the nature of the work, the counsellor’s genuineness and spontaneity may be vital aspects of the relationship, yet this could be hampered if the counsellor is constantly afraid of inadvertently saying something that will demolish the client’s trust. Such problems might be circumvented by addressing this important issue openly with a client. Problems of being misunderstood and stigmatised may not be an issue for some people with M.E. and this aspect may change in time. In their research into attitudes, Jason et al. (2001) found:

…some of the findings presented herein are optimistic in that they indicate that medical professionals in training are significantly less likely than undergraduates to consider CFS patients to be malingering, and are significantly more willing to view individuals with the illness as having a poorer quality of life and a worse prognosis for recovery.

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