Beyond Loss to a New Life
By Bruce Campbell
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.
Responses to Loss
The experience of grief often involves several emotions, including denial, worry, frustration, guilt and sadness. These reactions are often discussed in terms of a series of stages. 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.
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.
Strategies for Moving Through Grief
What can help you move through grief? Developing and using a self-management plan can play an important role. For example, pacing increases control, thereby replacing frustration, helplessness and uncertainty with stability and predictability. Here are eight additional strategies.
1) Structure
Having daily and weekly routines provides a sense of stability and familiarity, counteracting the feelings of disorientation and uncertainty brought by loss. Routine also offers a distraction from loss.
2) Problem Solving
Respond to the emotions of chronic illness by problem solving. By adopting self-management strategies, you remedy the circumstances that triggered the emotions.
3) Stress Avoidance
Having to adjust to the many changes brought by illness is traumatic. In a situation in which you are already overloaded emotionally, it's best to avoid people and situations that add more stress.
4) Support
Seek support from family, friends and others. Other people with ME/CFS and FM can provide understanding and models of successful coping. Professional help can give you perspective on your life and help you accept the changes brought by illness.
5) Acknowledging Grief Triggers
Grief reactions are often triggered by particular circumstances, such as anniversaries, or by particular people. If your emotions intensify around the anniversary of your becoming ill or on other special dates, plan something positive for those times. If certain people or situations make you feel anxious and uncomfortable, consider limiting your exposure to them.
6) Acknowledging Loss
Some people report they found it useful to make a public declaration of loss. One person in our program wrote a Christmas letter to friends to explain why they hadn't heard from him.
He wrote, "I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before." He reports writing the letter helped him accept his limits and, paradoxically, increased his resolve to improve.
7) Recognizing Grief as Cyclic and Long-Term
You may experience grief repeatedly as you move through the stages of life. For example, you may experience grief if you remain single while friends get married, you remain childless while others become parents, you are not able to be the parent you hoped to be or you can't have the career you trained for.
8) Addressing Self-Pity
Almost everyone with chronic illness occasionally feels sorry for themselves. It's not surprising that we would sometimes feel overwhelmed by emotions, given the losses and stresses we experience. Here are four ways to respond.
1. Recognize Self-Pity is a Part of Serious Illness: Just as symptoms wax and wane, so do emotions. Acknowledging that self-pity is happening can take some of its power away. You might say something like "Oh, there's self-pity again" or "I see that I'm feeling sorry for myself today." (One person told me she says this out loud.)
Also, it can help to say consoling things like "I've felt this way before and it's always blown over, so probably it won't last this time either."
2. Rest: Strong emotions are sometimes triggered by fatigue and other symptoms. In those instances, rest may both alleviate physical symptoms and reduce emotions.
3. Connect with Others: Reach out via phone, email or in-person. Sometimes just being in touch can change a mood. At other times it helps to have your mood acknowledged.
4. Help Others: Shift your attention off yourself onto what you can do for your family, friends or others in your life.
Acceptance with a Fighting Spirit
The approach we’ve found helpful combines two apparently conflicting parts: acceptance and belief that improvement is possible. Acceptance means acknowledging that life has changed.
People with this attitude do not live as if they were well or search a miracle cure to restore them to health. Rather, they accept that their lives are different and in some ways more limited than before, and that it is necessary for them to live differently, for now and perhaps for the long run.
At the same time, however, they have a fierce determination to improve and a confidence that they can find ways to make their lives better. This attitude was summarized by Dean Anderson, a recovered person with ME/CFS, who says in an article in the Success Stories section of this site that a certain kind of acceptance was the key to his improvement.
He described it not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." To him, acceptance also meant finding ways "to be productive and [to] find fulfillment under unfamiliar and difficult circumstances."
Linda’s Experience and Others’
Another person who exemplifies this approach is Linda Borell, whose experience is described in the article Coming to Terms with Loss. She says “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.”
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….I was so desperate and I thought life was just so unfair. I couldn't see anything but the desperate situation I was in.”
But one day she realized:
"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."
And change followed. "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 know that my change of thinking, my change of attitude made all the difference.”
Another example of improvement is Gail, a woman in our first self-help group. At that point, she functioned at about 15% of normal. She had many challenges. She lived on disability, spent many days in bed and had little family support.
But she also had a fierce determination that outweighed all the other factors. When I last saw her, two years ago, she was at about 45% of normal. We spent our time together doing a two-hour hike.
A third example is Rose, who was bedbound for almost a decade due to a combination of health problems, including severe ME/CFS. For the first several years she was with us, she rated herself at 10% of normal, but late last year she wrote to say that she was doing much better and rated herself at 35%. Not back to full health, but a dramatic improvement that she attributes to pacing.
Easing Mental Suffering
In addition to reducing symptoms and discomfort, achieving greater stability and increasing functional level, there is another kind of healing that people with ME/CFS and FM experience, a change in perspective.
One part is adjusting goals to abilities. You can find an example in Patti Schmidt's article Coming to Terms with a Life I Didn't Plan, which describes how she reoriented her life after coming down with ME/CFS. She writes that, after acknowledging that her illness had changed her life irrevocably, she was left with the question: Now what?
She made some changes in thinking to accept that there were some things that had been important that she would have to let go of, but she also recognized that she still had what was important to her: her family and the ability to contribute something to others. She decided to focus on those things she could do, rather than on those she couldn't, adjusting her goals to her abilities.
Some people say they prefer the person they are today to the one before their illness. For example, one wrote, "Even though I grieve the loss of self, the new me is a kinder, gentler and more caring person." Another commented, "I actually like the new me better than the old me. I'm much more pleasant to be around and generally more content with life.
Others see their illness as a challenge and find a sense of purpose in trying to understand their illness and to expand their area of control. Still others have found meaning in helping others. They may do it through participating in a support group or by offering help informally. One person in our program, who was housebound for some time by ME/CFS, said that she found meaning in giving her family the gift of listening.
Some people with ME/CFS or FM find it helpful to look at their illness through the lens of gratitude. Joan Buchman writes that she learned "to treasure what I have right now." For her, gratitude does not mean that she always looks at the bright side or denies pain and suffering.
Rather, for her, gratitude is "appreciating what you have and making the most from it. It's about finding out that you have more power over your life than you previously imagined."
All would echo the sentiment expressed by Toni Bernhard in her book How to be Sick that the challenge is to learn "how to live a life of equanimity and joy despite physical and energetic limitations."
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