"Life gives you lemons and you make lemonade - your response to all those cancer diagnoses is so positive, such a contribution!" "Your work demonstrates that illness is a great teacher." "Your illness has been a blessing in disguise."
Well-meaning, thoughtful people have said things like this to me since I started writing about the experience of being seriously ill and describing what I had to do to make my health care work for me. I generally hear in such comments polite appreciation of my efforts, which is nice because I know that people often struggle to know just what to say when confronted by others' hardships.
But beneath that appreciation I detect a common belief about the nature of suffering from illness in particular, that in its inaccuracy can inadvertently hurt sick people and those who love them.
The belief is that sickness ennobles us; that there is good to be found in the experience of illness; while diseases are bad, they teach life lessons that are good.
The damage comes from the expectation mine, my family's, my work colleagues, those of society at large -- that I will seek and find meaning in my illness; that I will, as a consequence of my illness, become a wiser, better person. If I do not find spiritual or philosophical benefit, I fall short: Either I haven't tried hard enough or I'm not smart enough to do so.
It is tough when I am sick to accept the fragility of my own body. The chores of illness are unpleasant, and together with the fatigue, pain and other symptoms, they absorb most of my energy. I am already doing the best I can to get better.' To add to these challenges the expectation that the experience of illness will re-order my priorities and make me wiser (or gentler or kinder or more generous) burdens me further. Not only has my body failed, I might now also fail as a person.
The inaccuracy is that illness is no different from any other life event: sometimes we learn from experience, sometimes not.' Of course we can learn from bad times, just as we do from good ones. A car accident can result in a piercing insight about what is truly valuable in life; the death of a parent can spark life-altering reflections about time and the future.
Sweet are the uses of adversity
Which like the toad, ugly and venomous,
Wears yet a jewel in his crown.
And this, our life, exempt from public haunts,
Finds tongues in trees, books in running brooks,
Sermons in stone, and good in every thing.
In Shakespeare's As You Like It, Duke Senior makes this comment about the very human urge to make sense of nature and our penchant to find benefit in adversity. Psychologists and anthropologists have long studied our tendency to construct explanations and find meaning in random events. Indeed, the growing fields of narrative medicine and expressive writing recognize the value to patients of writing and telling and physicians listening to our explanations of the ebbs and flows in our health.
But none of these approaches holds illness separate as an experience that uniquely confers benefit, as though meaning and wisdom are the bright side of the bad penny of illness, and that finding that bright side is the responsibility of the person who is sick.
Recent research purports to show that those who report finding a benefit from their illness do better are less depressed, heal faster or live longer. These studies presumably will lead to interventions to urge or teach those of us who are sick to search our souls for the spiritual and interpersonal benefits our suffering has brought us. Should we be reluctant or unable to do so means we have failed ourselves or our loved ones: We haven't been able to take this action that, even if it doesn't succeed in ameliorating our pain or extending our lives, might at least make us easier to live with while we are sick.
I write about what it takes to find and make good use of health care because I have spent so much time figuring out how to do it. I hope that my reflections can help others avoid some of my mistakes.' I also write about the experience of illness to challenge the vision of the patients' designated roles as energetic advocates for ourselves and for health system change as envisioned by media, government and health policy experts. We have experienced a dramatic increase in the complex demands placed on us by a health care system that is uncoordinated and chaotic. If I with my education, experience and privilege struggle to meet these demands in order to benefit from the procedures, drugs, devices and services available to me when I am ill, what happens to people who know and have less than I?
One could argue that in the adversity of four cancer-related diagnoses, a dangerous heart condition and all of the treatments they entail, I have found the calling and the commitment to speak out on behalf of people who are ill.' Maybe.' But this is neither a sign of my virtue nor of my will. I would trade that commitment in one hot second to not have been sick in the first place.
My writing about illness may be a jewel in the crown of a toad. But all that illness? Not lemonade. Not a lesson. Not a blessing.
Just a toad.