Adapting to life with M.E./MS

Many people with M.E. have previously led healthy and active lives and are unprepared for the limitations of living with a chronic illness. Clark and James (2003) found:

Typically, the disease began suddenly and without warning: it was experienced as a profound shock. Often people were catapulted from a period of excessive busyness to a period of complete immobility. From being active in the world, they changed to being house and bed-bound. Their worlds were dramatically constricted.

Graph/ Adapting to life with M.E./MS

The responses to this item are varied yet it is clear that for many respondents who want counselling this item is important, while 49% of M.E. respondents who received counselling rated this 3 or less showing that they explored this item in counselling but did not find it useful. Adapting can pose many challenges and raise many issues. It may mean facing up to a very harsh reality and at the same time accepting the loss of how things were and how things might have been. Adapting may require accepting the limitations imposed by the illness and could seem like ‘giving in’ and being controlled. Clark and James (2003) observe:

Much of the discussion of ill health in the modern world is couched in militaristic metaphors of attack, invasion and defense ( [Clarke (2000a]). "Disease is treated like a foreign enemy, something that must be vigilantly avoided, contained and eradicated if necessary" ( [Duff (1993]).

Donoghue and Siegel (2000 p.xi) discuss the guilt that people can feel for being chronically ill:

Popular books preach a type of control by strong mind and positive attitude, which motivates some to a better life but crushes others. The chronically ill can berate themselves for not being well.   If I had a better attitude, if I were stronger spiritually, if I ate better, played more, prayed more, laughed more, I wouldn’t be sick. The seductive message of having control over their illness can doom the chronically ill to a constant quest for a cure with the right diet and exercise, the right answers.   Hopelessness and more guilt is often the sad conclusion to such a search.

If a counsellor is able to accept a client with their illness and limitations with unconditional positive regard, while remaining congruent and empathic about feelings of guilt, anger, grief and despair, it may help the client to address their own feelings about their illness and facilitate a step in adjusting.

For many chronically ill people life loses much of its spontaneity and the freedom to choose activities previously enjoyed. Life might seem restricted and managing the illness can mean changing a whole way of life for an indefinite time. Respondents with M.E. remarked:

>I no longer have that horrible, profound fatigue. I tire easily, but I'm good at pacing and I have a good life, though limited compared to healthy people.

>Although I've come a long way in accepting my new lifestyle and adjusting to life with a chronic illness, I still need to deal with emotional issues related to my illness.

>I am generally opposed to counseling unless an individual is truly having trouble with adjusting to the illness.

>I want to live again, learn new things, get back into running and weights, and read and hear God`s   word with comprehension. The kind of counseling, for me, would help me deal with those issues.

Donoghue and Siegel remark on the difficulty of coping with the ‘Exacerbation-Remission Phenomenon’ (Donoghue and Siegel 2000 p.66):

Sickness can prompt, even demand, growth. Constant adjustment to states of health then illness, independence then dependence, confidence then doubt, strength then vulnerability, caregiver then patient tends to sap reserves of emotional well-being. There is no real point of resolution.

Clark and James (2003) remark on a stage of coming to terms with CFS:

For many another stage in the processes involved in coming to terms with CFS was the acceptance of the newly constructed self. Having been confronted with loss of the former self, of body functioning, of friends and even of a legitimate place in society, people with CFS tended to develop a new sense of the normal

Coming to terms with M.E. and adjusting to a newly constructed self may require the sacrifice of the old self through a grieving process which will be explored below.   Chetwynd (1993 p.158) remarks on sacrifice:

…yielding to life’s demands, submitting to life-as-it-is, rather than insisting on personal satisfaction.

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