by Susan Dion

As with so many of the insidious physical symptoms of long-term sickness, the seemingly mysterious emotional responses may also jolt the patient. Not only do strange and atypical reactions surprise (and possibly stun) dear friends and family, they also shock the ill person who is feeling and expressing them.

For example, knee-jerk emotions may creep into a normally placid person's demeanour. An individual who rarely suffers from the "blues" may feel continually weepy, sad and easily hurt by others. A routinely optimistic and cheerful woman or man may experience enormous amounts of anger and frustration - unlike anything in his or her life before sickness. An easy-going agreeable and gentle person may now be quick to criticise with stinging words, while also acting unfairly intolerant of others' minor faults. Folks who thought themselves as adaptable, wise, generous and mature may be dragged into a whirlpool of opposites - prone to behaviours which are childish and petty, self-centred and selfish, myopic and rigid.

In many ways the debilitating pain, crushing symptoms, oppressive limits and severe losses resulting from long-term sickness contribute to a changed personality for at least some period of time. Unfortunately, difficult and lengthy sickness may bring out the worst in a person. Many lousy traits and turbulent emotions are to be expected as one copes with the roller-coaster of major crises associated with adaptation to disabling illness. Gradually, however, the intrepid spirit of the ill person resurfaces and, often enough, is changed, strengthened and polished in positive ways. This is true even though the journey may be brutally complex and horrendously frustrating. In some ways, the journey never ends.

One confusing, emotional road along that journey is marred with deep potholes filled with a strange, sickness-induced form of jealousy or envy. Alas, no road signs offer adequate warning of the treacherous dangers posed by falling into envy's potholes.

Envy Rears Its Ugly Head
Having slowly worked through many changes in the process of learning to live in the bizarre landscape of chronic and life-altering daily flu, I'm more than a little embarrassed about some of my unanticipated reactions in the early years. Among the many unexpected and chaotic emotions, I was especially taken aback by strong feelings of envy or jealousy. In normal healthy times I had not included this emotion in my repertoire. Simply put, I was not a jealous person. Indeed, prior to my long bout with illness, I considered jealousy in an adult a sign of immaturity and pettiness. It often appeared to be linked to a lack of self-respect. My observations were, of course, not necessarily accurate. I was neither a trained counsellor nor a brilliant psychiatrist. Regardless, jealousy or envy was not an integral part of my personality. And I most certainly did not include it on my list of admirable characteristic traits. Thus, jealousy was neither a welcome nor a well-known feeling for me.

I first experienced strong feelings of sickness-induced envy toward the end of the first awful year. Intense flu symptoms had eradicated any semblance of normalcy. I not only longed for my return to professional life, I also wanted to walk just a few steps without feeling so much pain and flu. I grieved for all my previously taken-for-granted domestic abilities. These included devoted parenting of my two children and satisfying partnership with my dear husband. Given the many losses and the crushing levels of pain and flu, perhaps it's not surprising I began to envy healthy people. I envied the briskness of their walk and the fullness of their days. I envied the many mundane actions of daily life readily performed by a healthy person: preparing a family meal; bending over to tie a shoe; doing the laundry; going out to a movie; sitting up and chatting with good friends; cuddling with a partner; thinking or reading with an alert mind. I envied people for being strong, energetic and healthy. I envied their wellness. I was jealous of their absence of sickness.

I also envied my own previously healthy self and life. Starting about the seventh month of sickness I experienced a type of flashback in which I'd vividly see myself in healthy roles of the past: bouncing up the stairs; teaching college classes; driving kids to school activities; administering complicated program budgets; sustaining hours of quiet research, writing or course preparation; taking long, slow walks with my husband while talking about dozens of different topics; blissfully relaxing with music or a good book; shovelling snow; and doing a myriad of common household tasks.

These flashbacks surrounded me whether awake or asleep. And, although they were happy memories of a feisty, strong, dedicated woman engaged in the challenges and joys of daily life, they can only be described as nightmares of sickness-induced envy They made me thirst for health. I longed for release from oppressive, debilitating daily flu. I was full of envy for my pre-ill body and life. These dreams of flashbacks of the former, healthy me contributed to a deep, aching sadness. Yes, the dreams were probably part of the necessary grieving as I mourned the loss of my healthy self - a self which existed less than a year before the flashbacks started; a self which had been suddenly stricken with a bad March flu from which there was no recovery. The nightmares of flashbacks were probably also linked to a depression which attacked in the seventh month of that miserable flu - then lingered. (Both the flashbacks and the depression were a first in my life). I hated those flashbacks of envy; they were too painful to bear on top of the cruel symptoms of fever, weakness, pain, flu, malaise, night sweats, hair loss and more. I yearned for a return to health and activity. I was overwhelmed.

With lots of support from family, friends and doctors, I slowly made peace with these dreams and eventually with the flu itself. I continually drew on my own inner resources to combat this detested, surreal form of jealousy. In addition I leaned on professional counselling support. I saw a psychiatrist for several months of twice-monthly visits starting about the eighth month of my sickness. I'd delayed for several weeks after the depression and flashbacks jumped on me, although my primary-care doctor had kindly (and correctly!) urged this extra care. The psychiatrist was superb. She had a special interest in working with people who were coping with tough health crises. However, from the outset she informed me that our time was limited as she was relocating the following summer. Later, an outstanding psychologist continued to offer warm, thoughtful, supportive counselling and excellent guidance on a somewhat staggered schedule to accommodate my limits and needs. She, too, focused a part of her practice on aiding patients coping with sickness. I developed strategies to stop the onslaught of flashbacks and bad dreams. I eventually accepted I had to live in the present, even though the present was full of sickness and constraints. Nightmares or flashbacks of envy are no longer a part of my experience with illness. Neither is the dreary, defeating, dangerous darkness of depression.


A Better Deal?
Oddly enough, another type of sickness-induced envy I experienced related to other sick and disabled people. I was envious of persons who had been blinded or lost a limb, for example. It seemed to me they had a better deal. Although they'd suffered a major loss, I assumed that they could thrive with fairly normal lives if they had good health. I'm ashamed to admit this form of envy. It seems mean-spirited, almost cruel - and not a part of my normal character. I knew better. My rational self helped me recognise the ineffectiveness of such thoughts. It did not do me much good to romanticise (often inaccurately) other disabling illnesses or injuries. Identifying "better deals" did not change what I had to cope with each day. I had no choice in selecting my sickness; I couldn't stand in line with a request for a special malady. As with so many other people, I did not invite my illness. Regrettably, my envy was often accompanied by self-pity. It typically included whiny sub-texts: "Why me?" - "If only..." - "Why not that person?" - "Why not that disability or disease?" Incrementally, with much work and assistance, I fought through and overcame the barriers erected by thinking and feeling this downward spiral of sad, self-pitying envy. Yes, a part of this process again required necessary grieving and adjustment. While recognising that, I successfully sought release from these peculiar forms of envy and self-pity.

Lastly, my envy included other people diagnosed with similar post-viral syndromes or CFIDS. Specifically, I was jealous of those who had milder cases. Such people discussed their periods of partial and total remission, or their symptom-free days. Others seemed to enjoy semi-normal lives with gainful employment, long hikes or shopping excursions and a plethora of fun activities. Some patients did not experience neurocognitive impairments, muscle and joint pain, drenching night sweats, spasms, swollen and tender lymph nodes or fevers. I envied such seemingly lighter sentences with this sickness. As time progressed I was particularly jealous of those who reported a recovery after a mere 18 months or two years.

Simply put, I was envious of people stricken with the same illness but less sick. I not only envied their modified symptoms, of course, but their concurrent higher levels of functioning. I was jealous of the patients able to manage and tolerate a couple of hours at the computer, or mile-long walks, or several weekly errands, or two to three hours (!) at the wheel of a car. I recall occasionally sharing some anecdotes about such patients with my physicians or my counsellors - all who were deeply committed to help me live with this illness. I typically prefaced my comments with "I don't mean to whine but Mrs XYZ can do a, b, c and w.." or "I've never been a wimp and I constantly try, but even on my very best days a few minutes driving the car triggers the heaviest, immobilising flu symptoms and bone-crushing joint and muscle pain," etc. (I do refrain from whining most of the time and I do keep trying varied actions and activities.). My primary doctor patiently explained (more than once!) that many illnesses strike people differently. There is generally a continuum from mild to severe with the impact of symptoms - whether the illness is multiple sclerosis, the common cold or a poorly-understood syndrome. Her words were echoed by my other physicians. The doctors and varied health professionals offered consistent encouragement and crucial words of hope as I coped with my symptoms. Similarly, the counsellors offered insightful and wise support as I gradually untangled the envy and learned how to better live with my illness.

Breaking the Grip
Again, I slowly recognised that I had to deal with my sickness levels and the concomitant constraints. Envying (possibly misinterpreting) someone else's lighter pain did not help me or my family. As I incrementally adapted, my envy of other patients eventually evaporated. Occasionally I'm still astonished to hear or read about someone with the same illness working a 20-hour per week schedule or playing softball or having no apparent loss of mobility. But my reaction is one of surprise and maybe a little puzzlement. If there is a twinge of envy it is not a gut feeling. It no longer has the power to overwhelm my spirit or bring me down. Remaining ever-hopeful of a physical recovery, I have made tremendous progress in my approach and attitude to life and illness. There is a sense of coexistence with the strangeness of daily sickness. There also is an understanding with my "sickness peers" - an acceptance or a recognition that, although many individuals share a diagnosis, they each may cope with a different constellation of symptoms and quite different levels of sickness, pain and debilitation. Certainly, no-one has an easy path with illness. Each individual not only copes with the illness symptoms, but with the many losses sustained. The emotional pain in the early months and years can be extraordinarily tough.

Sickness-induced envy may be normal in coming to terms with long-term debilitating illness, but most certainly one needs to overcome jealousy's harsh and harmful grip. No-one wants to wallow in the wastelands of envy and jealousy for very long. That is simply too humiliating and spirit-dampening to bear. Patients are urged to seek assistance in confronting their difficult emotions and reactions. Don't hesitate to lean on a psychiatrist or psychologist. In addition, patients should be persistent in drawing from their own inner resources. A person's overall sense of well-being is much improved once they get beyond the mystifying maze of sickness-induced jealousy, grief, self-pity and depression. The improvement in overall well-being marks a major step in living, even though the life-altering sickness continues.

About the author: Susan Dion has been ill since March 1989 when she was 35. She wishes to express her admiration of and appreciation to Drs Meg Hessen, Bea Lazaroff and Joan Enoch.

Susan Dion has participated in CFIDS research studies conducted at the National Institute of Health in Bethesda, MD. She thanks Dr Stephen Straus and the NIH CFIDS team for their kindness, concern and thoughtful help. She especially thanks Eileen Benson-Grigg for her significant advice and support in 1994.


Originally from the CFIDS Chronicle, Spring 1995, Magazine of the CFIDS Association of America)

Reprinted from Emerge, Winter 1999