By JoWynn Johns
Reprinted by permission from the CFIDS/Fibromyalgia Self-Help Program: CFIDSselfhelp.org
Note: Before becoming disabled with CFIDS in 1993, JoWynn Johns had developed a management consulting business following 25 years as a corporate executive. She is a graduate of the CFIDS Self-Help course.
If recovery means returning to the way of life I had before CFS, I have not recovered. But in other and to me equally significant ways, I have recovered. I am very much better and much more functional than I was three years ago and for about five years before that. Even though I still have important limits, I have recovered control over my life that CFS had taken away. Also, I have regained physical comfort and freedom from constant, distressing symptoms.
And I can once again engage in meaningful work. Living as I do, I feel good almost every day. So, I apply the word “recovery” to myself because I have regained a satisfying life. It’s just not the life I had before CFS.
Breakdown and withdrawal
When I was breaking down with CFS ten years ago, without a clue as to what was wrong with me, I reluctantly acknowledged that the parts of my life I most enjoyed seemed to be making me sick. Doing the work I loved, having grandchildren stay with us, entertaining friends and family, eating in restaurants, going to the library —all made me feel terrible. How could this be, that what I liked doing was somehow connected with all the distressing symptoms and intolerable fatigue I was experiencing?
Until I had physically collapsed, unable to function at all, I refused to stop doing all these things. Unwilling to give up my satisfying life and not able to believe that it was indeed affecting me in this way, I made myself sicker and sicker. Finally, I was forced to stop working and everything else. Without a diagnosis or any medical help, I hoped that if I just withdrew from the world for a while and rested I would recover. I wanted to return to the life I had been living, and I thought I could do so by taking a break. I expected that a few months of rest and relaxation—since my doctors could find nothing wrong with me—would restore me to my active, busy life.
Instead, for several years I lived mostly in seclusion, constantly seeking to understand what was wrong with me, trying any remedies or treatments that seemed to offer hope of curing what ailed me, always hoping that I could return to a fully active, productive life. But gradually my objectives changed. After feeling miserable for such a long time, I decided my goal should be just to feel better. Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS.
Beginning to recover
I didn’t give up hope. I didn’t resign myself to a life of suffering. I believed that I could find a way to live happily and relatively comfortably, and that is what I redirected my efforts toward discovering. As I let go of the need to get well and the repeated attempts to get my old life back, I finally began to recover. Subsequently, I found a naturopathic treatment that has produced considerable improvement in my condition, but I am still not able to return to work as a management consultant or take my grandchildren on trips. However, from being able to function only at about 30% of my previous lifestyle for most of the past ten years, I am now functioning at about 70%.
This is a big improvement, and I may continue to improve, but recovery has come to have a different meaning for me.
Regaining a good life
Though I am living a limited life as compared with my pre-CFS life, CFS no longer controls me. I am controlling my CFS. I have recovered control over my life. In contrast to my years of isolation, I am now able to visit, shop, and engage in other activities selectively and moderately. I choose to live this way so that I can be free of debilitating symptoms and able to do meaningful work—creating needleart, for several hours every day. This is very important to me. While it is not the life I once had, I have recovered a satisfying life, a 100% enjoyable life. The word “recovery” means to regain or restore, and I have recovered a high quality of life.
As a diabetic must manage her diet and monitor her intake of certain foods in order to control blood sugar, I must manage my activities and monitor my energy level so as to limit the demands on my dysfunctional neurohormonal system. I have voluntarily given up the idea that a satisfying life must be the active life I once enjoyed and replaced it with an alternative way of life—simpler, slower, quieter—that is equally satisfying.
Realistic expectations make the difference
These changes have not come easily or quickly. Living with CFS is challenging. It is hard work! But I have found that it is possible to manage my life so that I feel good most of the time. By giving up the need to have what I used to have, by giving up the idea of recovery as return to a past way of living, I have created a good life. This is my recovery.
While some CFS patients experience full recovery, able to resume full-time work and to do all they were previously able to do, most do not. I believe that if the majority are able to adjust their expectations realistically and minimize their attachment to a particular goal —which means choosing a different way of life— they too may recover the quality of life that CFS steals from us.