When I was first diagnosed with lupus, I did not really read many books on it. When I got really sick, however, I wanted to learn all about it. I wanted to learn why I was told “despite lupus, you can still live your life” — when I was bedridden, unable to walk or care for myself, for nearly over a year. What the hell happened?
There were many books but not many answers. Some books were too superficial, while some books were too technical. Many spoke in percentages which did not really resonate with me (i.e., X percent have organ involvement). The one book that I really enjoyed reading was “Sick and Tired of Feeling Sick and Tired” by Paul Donohue and Mary Siegel (W.W. Norton, 2000). Over time, I keep coming back to it again and again. It is mostly anecdotal, but all the stories have been well distilled into relatable subjects. The title really says it all. I DO feel so sick and tired of feeling sick and tired . . . all the time.
Here are some passages that helped me understand what I was going through:
- “This fatigue is relentless. Overexercise or overwork does not cause it and bed rest frequently fails to relive it. It appears regardless of activity or inactivity, happiness or sadness. It simply exists in and of itself, and no medication, probative thought, or rest can relieve it.” (p.7)
- “There are no social rituals surrounding ICI [invisible chronic illness]: no hospital visits with flowers and sympathy to bestow some degree of validity and importance on the illness and its victim. The individual is on her own to cope with an unending set of painful, bewildering symptoms and the often hurtful reactions of others. The combination of pain and lack of adequate comfort frequently results in depression. The the depression is blamed for the illness.” (p.53)
- “Chronic invisible illnesses are different. tHey do not follow the predictable path from warning sign to recovery. Rather, the sufferer lives with baseline of unwellness that is interrupted by periods of exacerbation and remission, relapse and remission.” (p.56)
- “As disappointing as it is to accept the limitations imposed by illness, arose still are the severe shame and embarrassment, as well as tension, that come in trying to communicate these limits to others.” (p. 61)
- “The patient lives in fear that the disease may seriously worsen, threatening not only his quality of life but even life itself. . . . Clients tell us that at times like this that they often wish to die. Living with pain or debilitating fatigue and the fear makes a final ‘simple’ answer of death seem appealing.” (p.63)
- ” . . . being depending is a humiliating experience to which adjustment is not at all easy. Having to be helped to the toilet, steadied as we walk, or spoon-fed can erase any sense of dignity.” (p.67)
- “First [the patient] is the victim of materialists who doubt the illness because it cannot be measured, and then he is subjected to the demands of spiritualists who claim that he is responsible for the illness and its cure by his attitude and spiritual courage.” (p. 76)
- “A friend’s simple question, ‘How are you?’ is not simple for the sufferer of invisible chronic illness, who may be preoccupied with her body and with pain. To respond ‘fine’ sets off feelings of resentment and loneliness; yet to talk again of pain or fatigue triggers fear of the other’s impatience or rejection.” (p. 94)
And so forth. . . . The book is about the experience of an invisible chronic illness as well as advice on how to cope with living with it. Whether you are patient, a caregiver or just a loved one wanting to understand, I highly recommend adding this book to your library.