Coming to Terms with Loss: A Personal Perspective  

By Bruce Campbell and Linda Borell

Note: Linda Borell, a CFIDS and fibromyalgia patient, is a graduate of our introductory self-help course and participates in our discussion groups and advanced classes.

One challenge of chronic illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss. And chronic illness brings with it many serious losses. We may feel we have lost control over our bodies. We may be forced to give up our job. We may lose friends and feel abandoned by family. And we may lose the future we had envisioned for ourselves. In sum, we experience the death of the person we used to be.

How can you respond positively to a situation of pervasive loss? We recently asked members of our discussion groups to share their experience on this subject, requesting that they describe what has helped them come to terms with the losses created by their illness.

A member of the group, who I’ll call Jane, responded by expressing frustration. She wrote: "I resent the loss of my lifestyle. The thing I resent most is that I can't spend the time doing what I really love doing...I haven't come to terms with [loss] and I doubt that I ever will. To me ‘coming to terms’ means giving up and I'm not going to do that!"

The Process of Grief

The frustration that Jane expressed is a common reaction to loss. The experience of grief often involves several emotions, including denial, frustration, guilt and sadness. These reactions are often discussed in terms of the stages of death described by Elizabeth Kubler-Ross in her book On Death and Dying. For most people, however, there is not a neat, orderly progression. Rather grief is a more individual process in which a person may experience some but not necessarily all of the emotions just mentioned. Also, a person may experience some emotions more than once, or may feel two or more at the same time.

While grief can be a turbulent and lengthy process, it has a positive end in acceptance. Acceptance is a complex response with two apparently conflicting parts. First, it involves recognizing that life has changed, perhaps permanently and certainly for an extended period of time. Acceptance means letting go of your past life and also of the future as you had envisioned it before becoming ill. But at the same time, acceptance is forward looking, involving the willingness and even eagerness to build a new life. Acceptance is not the same as resignation. Rather it means acknowledging that life has changed and working to live as well as possible under the circumstances. We call this combination acceptance with a fighting spirit or acceptance and hope.

“I Lost So Much …. My Change of Attitude Made All the Difference”

Linda Borell, another group member, responded to Jane by describing her own experience, a good example of the transcendence of grief that can come through a change in attitude.

"I want you to know how much I understand your feelings. It is so hard to lose so much of the person you once were. I lost so much when I was hit with this illness too and, at first, I was too sick to even think about what I had lost. It took me a year to realize what this illness would mean for my life. I could no longer work at a job I absolutely loved. I couldn't travel or do so many of the things I had wanted to do in my older years. It was deeply saddening to me, but I did want to continue to do as much as I could and improve as much as I could. I just had to change my choices and am really still in that process."

"I want to share something that I learned when in my thirties. It was a time during which I lost a baby, went through a divorce, was left penniless and with a six year old to raise without any support from his father. I was so desperate and I thought life was just so unfair. I couldn't see anything but the desperate situation I was in. It took a while for me to come to terms with my feeling about how unfair life was, my anger and my isolation. (My family did nothing to help me much less offer me even emotional support.) I felt so overwhelmed."

"One day, I realized that if I stayed where I was in my thinking and continued with the same response to the situation, I would never be able to move ahead. I realized that the real problem I had was my own inner struggle against the unfairness of it all. That day I changed my approach. I decided to stop ‘harping’ on my losses and to start building on what I had going for me and that I had to believe that I could accomplish something worthwhile in my life, despite the terrible lack of finances."

"By the end of my 40's, I had completed the necessary education to become a principal and had put my son through college as well. I did not have a lot of money and had to borrow, but I felt that I had accomplished a lot and felt good about my efforts. I know that my change of thinking, my change of attitude made all the difference. It wasn't that I had a windfall of money, but I did believe that I had the ability to work out anything that I needed to do and I had the belief that education was essential for both my son and myself. My change of thinking is what made everything I accomplished possible."

"Things Are Possible Even When Everything Seems Hopeless"

"I don't mean to sound ‘preachy’, but I wanted to share this part of my life so that you might be able to see that there are things that are possible, even when everything seems so hopeless. I don't know how old you are, but I just turned 62 and became ill when I was 57. I am again trying to find what is possible for me at this point in my life. I may have to curtail the travel I had always wanted to do at this age. I may  never be able to teach at the college level as I had wanted to do when I retired, but  I have found and continue to find activities that keep me involved socially, that is on days I am able, and other activities that feed my brain."

"I also just finished two months of physical therapy in a pool to help me bring my much deconditioned body back to some semblance of strength. I know I have to continue this activity if I want to improve and to maintain the strength and muscle that I need to stay as healthy as possible. I often have to give up other activities on therapy days, but it is worth it.”

“I hope that you will be able to find a greater sense of acceptance and feel good about finding those things that can bring you happiness, even with all you have to deal with with this illness."

May you, too, find your way through loss to acceptance.