Fibromyalgia and Caregiving Strain

” It is possible to move through the drama of our lives without believing so earnestly in the character that we play”, Pema Chodron

What is it that prevents many of us from changing our thoughts, emotions, and ways of being in the world even when we know that what we do, think or act upon is deleterious to our health? I have been a caregiver for most of my life and it has taken a toll on me in many ways. How do I learn to set boundaries and stick to them? What makes me think that I can mother the world? Isn’t that arrogance and self sacrificing? These are my thoughts on this humid summer day as I reflect upon what new crisis I will face with my parents in the coming days, particularly with an emotionally abusive father.

In the past I have supervised several  graduate students who did research with adults who were caregivers for older parents. Their stories were filled with issues of guilt, burn-out, worry, fatigue, anger, hopelessness, often love, but sometimes even intense dislike of the parent. Generally they were women who were the caregivers and because they had busy lives of their own usually they were overwhelmed with responsibilities. I would teach these courses in Gerontology, never really thinking that it would someday become my own dilemma… how to cope with the demands of 92+ year old parents, particularly when one is and always has been an exceptionally difficult parent who is afflicted with Borderline Personality Disorder (Emotional Regulation Disorder as it is sometimes called). Everywhere he goes drama and  crises follow him, initiated by his behaviour.  While dealing with my own pain and fatigue of fibromyalgia, I must also care for him and my anxious mother.

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In his book The Making of an Elder Culture, Theodore Roszak writes : “For it is women-daughters or daughters-in-law-far more than men who are suffering the pressure of home-based caregiving. While caregivers come in many shapes and sizes, their gender is all but uniform” (p.99-100). It is also true that the majority of people who suffer from fibromyalgia are women. Combining these two (caregiving and fibromyalgia) often results in a situation which is painful and brings about social, physical and psychological crises for the caregiver as well as the recipient of care.

I don’t want to paint a picture of caregiving as that which is only done by women. I know of many men who are the providers of care and suffer from caregiving strain. It has been noted that the kinds of care that women and men give to those who rely on them differ rather dramatically. Practical support seems to be the most common kind of caregiving among men, while emotional work as well as the practical, appears to be more common among women. Again, this kind of generalization can be challenged, nonetheless those of us with fibromyalgia know how difficult it is to have others rely on us when we are overwhelmed with our own pain and fatigue.

Caring for a parent, spouse or a child with disabilities carries with it different kinds of emotions. In addition there are quite different expectations that require both physical and psychological demands dependent upon the nature of the care. A person may love(or not) a parent or spouse, but generally caring for a disabled child must be among the most difficult emotionally. We cannot equate the different types of care required in situations that are not alike. For me the problems are those of elderly parents and the strain on my emotions as I try to appease, organize, placate and give support within relationships that are fraught with difficulties. The cost of my tendency of over-caring is a lesson which I am having a great deal of difficulty learning…how to set boundaries and provide self care.

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Many have written to me of the difficulties of living with fibromyalgia and the responsibilities of caring for a family member. In particular, most of this correspondence has been from mothers caring for disabled children. I often think of those who suggest kindly that support groups would help. However, they often fail to take into consideration that this is a time commitment that many can ill afford. I am lucky in the sense that I am not required to do actual physical care for my parents, nonetheless it is all relative and the time commitment of the invisible, subtle and the actual overt care is not helpful for my fibromyalgia. Women’s lives are often shaped by their commitments to others, and sometimes unwanted responsibilities, often to the detriment of our own needs. Self care and self compassion are paramount.

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