The changes and losses experienced by many people with M.E./MS may precipitate a grieving process that can be painful and cause distress and anger. Discussing the grieving process Bowlby (2000 p.53) observes:
If, however, the urges to recover and scold are automatic responses built into the organism, it follows that they will come into action in response to any and every loss and without discriminating between those that are really retrievable and those, statistically rare, that are not.
40% of respondents in the M.E. group and 42% in the MS group who received counselling rated this item 5 or higher indicating that exploring these issues in counselling was useful. The majority of those who want counselling rated this item 5 or higher. Working through the diverse causes of grief can pose a challenge for client and counsellor. A respondent with M.E. remarked:
Although she helped me, I had the feeling that she thought it was easy to put those feelings about my disease "in the past". She didn't quite grasp the intensity.
A respondent with M.E. remarked on feel guilty:
I was also berating myself and feeling guilty about all the things I could no longer do routinely — cook, clean up, enjoy hobbies or sports or fun outings.
Campling (1997) remarks:
Some years ago, I lost someone I cared about very much, a woman I knew better than anyone in the world. For a couple of years the grief was intense and I mourned intensely ... the woman I mourned for was myself, the person I used to be before I got ME.
Becoming chronically ill is very much like a bereavement. The losses are much the same and the emotions involved are very similar. Having to give up a job that I loved meant that I lost income, status, companionship and an acknowledged role, the same kind of things I would have lost if I had been widowed.
The Mayo Clinic (2004) remarks on the affect of the many losses sometimes caused by chronic pain:
These are difficult losses. You may feel as if nearly everything precious to you has vanished. Your natural response is to grieve. Grieving can trigger various feelings. Even within a single day you may experience several different emotions.
Many people respond to chronic pain with the same feelings that typically accompany the loss of a loved one:
A respondent who does not want counselling observed:
In my opinion the only possible reason I would need counseling would be to cope with the loss of being able to lead my former life.
A respondent with M.E. had therapy at an MS centre and wrote:
I attended at an MS therapy centre, and was amazed to discover that the grief process, self doubt and sense of loss was identical for all...regardless of the chronic illness suffered.
M.E. respondents who want counselling remarked:
>I would like to receive counselling now. It would help me to understand myself and help me to grieve properly for the loss of my old healthy life.
>i mainly want to go to counselling to help deal with the grief of seeing my previous life and who i am/was, with all its options die out in front of me while everyone else around me still continues, saying goodbye to myself (the place i use to live)....if/when i get better will i be able to be that person i left behind again, because i really want to.
The last respondent mentions an aspect of M.E. that can have very mixed implications, getting better and recovering from the illness. Some people with M.E. make a full or partial recovery. For some people with M.E. their hope might be that many problems caused by M.E. could be eradicated with one event, recovery. Such hope might encourage perseverance, yet this could include perpetually seeking relief or a cure, and might also prevent engagement in the grieving process. Donoghue and Siegel (2000 p.76) remark on ‘seeking answers and seeking cures’:
Our mind, attitudes, and beliefs lead us to positive, life-affirming, peaceful ways of being that let us live at peace with ourselves and our world. But when that responsibility demands that we be accountable for our illness and for curing it, we become tyrants to ourselves.
Goodheart and Lansing (2000, p.40) discuss, ‘Acknowledgment of Helplessness: I Cannot Change What Is Wrong’:
When patients relinquish a fruitless strategy, there is usually room in their internal worlds to face the losses of the past and the fears about the future.
M.E. might pose completely new kinds of challenges for which there is no learned response from past experience and may only be met with instinctive responses. Bowlby (2000 p.51) remarks:
Anger, it is not always realized, is an immediate, common, and perhaps invariable response to loss. Instead of anger indicating that mourning is running a pathological course – a view suggested by Freud and rather commonly held – evidence makes it clear that anger, including anger with the person lost, is an integral part of the grief reaction.
And also (p.52):
Only after every effort has been made to recover the person lost, it seems, is the individual in a mood to admit defeat [isn’t this a victory?] and to orient himself afresh to a world from which the loved person is accepted as irretrievably missing. Protest, including an angry demand for the person’s return and reproach against him or her for deserting, is as much a part of an adult’s response to loss, especially a sudden loss, as of a young child’s.
(square brackets as published)
A respondent with M.E. wrote in the CFIDS Chronicle:
I’m at the just-realized-this-isn’t-going-away stage. Before this, I was at the I’ll-be-back-to-work-in-no-time phase. I think I’m headed into the Godamighty-I’m-mad phase, to be followed (I hope) by the guess-I’ll-live-with-it-after-all phase. This follows Elizabeth Kubler-Ross’ four-stage process of grieving quite nicely — denial, bargaining, anger, acceptance.
And we do each have to go through a grieving process for what we’ve lost because of CFIDS: our jobs, our healthy selves, our dreams of what we thought our lives would be. We have to mourn our losses before we can fully accept the limitations CFIDS places on us.
Another M.E. respondent appears to have been discouraged from exploring losses:
Her advice in terms of dealing with the ME was to "accept the limitations placed on you by the illness and focus on what you can do, rather than what you can't".
Both of these strategies I can figure out for myself, and indeed had already done so prior to counselling.
I gave up!
The counsellor’s attitude may appear positive but is an approach to counselling chronic illness that could deprive a client of the opportunity to engage fully in a grieving process. For people with M.E. and MS who have suffered losses due to their illness it may be important to actually focus on the losses and the emotions evoked – however inappropriate they may seem to a counsellor who wants the client to move on. Campling (1997 p.174) states:
Part of the process of adapting to my present circumstances has involved analyzing exactly what I most miss from my past.
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