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The Lemon of Illness and the Demand for Lemonade

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"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.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Mental Health   Inside Healthcare   Jessie Gruman   Find Good Health Care  


Comments on this post
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Benefits From Symptoms Of Heart Attack Woman says
April 13, 2011 at 6:48 PM

[...] Prepared Patient Forum: The Lemon of Illness and the Demand for … [...]

The Lemon of Illness and the Demand for Lemonade « CFAH PPF Blog « DetailsEtc says
April 13, 2011 at 10:38 PM

[...] The one good thing was that most people talked about their cancer – a chance to speak the words out loud of what must be running through their heads.  The important thing to remember if you go with someone for their chemo treatment is to just listen.  The comments and questions are not for answering.  This is no time to try to cheer them up with platitudes.  Some people may be able to find a gift in their cancer but many others will not.  It’s not a competition.  This link will take you to one woman’s story of her illness.   Prepared Patient Forum: The Lemon of Illness and the Demand for Lemonade « CFAH PPF Blog. [...]

ljones888 says
April 16, 2011 at 3:04 AM

You raise a true and generally overlooked point that people tend to glorify sickness as a teacher of some sort even though they are using the health care system to be Well (not remain a student of illness). I suppose this could be a sign of resilience...but should never be used as a measuring stick to condemn other patients who are burdened enough by their illness and don't need one more task on the "to do" list. Thanks for sharing!

mrmd555 says
April 20, 2011 at 3:05 PM

This is a sensitively and beautifully written piece on an important topic. As a physician and educator I have long supported people in exploring whether there is personal meaning or learning that is of value in adverse events including serious illness. Like many others in the field of mind/body medicine, I have often found that people do find (or create) value, even though, like the author, many would quickly trade that value for being left healthy again. Others, though, do find so much value they would not trade it in for a physical healing.

I think the key word here is "demand" - we need to not expect or demand this of people. The author is right - much is demanded by unsought illness and we should not add to this load by expecting any particular responses. At the same time, we should support people that are inclined to explore and look for meaning, and we can be gently and respectfully hold this option as one way to come to terms with the very difficult challenges that serious illness can bring.

Carolyn Thomas says
April 26, 2011 at 9:12 AM

Brilliant and provocative points here - thank you so much for putting into words what I've been feeling, too. I'm a heart attack survivor who has often muttered silently about this expectation that one's diagnosis will not only ennoble and strengthen our own character, but it will (and MUST) inspire and lead others, that it is, in actual fact, a GOOD THING we got sick.

I have compared this determination that we must seek and find meaning in illness to the reaction of family and friends to our appearance once we return home from hospital. They want - no, they NEED! - us to be like our old normal selves as soon as humanly possible. To look or sound sick would make others feel awkward and distressed. Hence their gushing relief when at last we don't seem as disabled or "different" as they may have feared. I wrote about this on my blog HEART SISTERS at: "You Look Great! And Other Things You Should Never Say to Heart Patients" at: http://myheartsisters.org/2009/06/01/you-look-great/

I suspect the same is true for expectations that we will take this catastrophic diagnosis and somehow successfully spin it tidily on its heels, transforming it into a life event that's actually WONDERFUL and POSITIVE!!!

Others need this fantasy to be real in case they too face a diagnosis like this one day themselves. As you wisely point out, however, despite writing, speaking and publicly advocating for other women with heart disease during the past three years, I'd trade my heart attack and subsequent life-altering complications in an instant if I only could.

Carolyn Thomas says
September 30, 2011 at 10:29 AM

PS Hello again - just a heads up that I've linked back to your post in my article called "Does Surviving A Heart Attack Make You a Better Person?" up today at HEART SISTERS - http://myheartsisters.org/2011/09/30/surviving-heart-attack-make-you-a-better-person/

Thanks again.
Cheers,
C.

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October 1, 2011 at 7:11 AM

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Leslie Schover says
June 5, 2013 at 1:19 PM

Amen, Jessie! Expecting people to find meaning in illness is another version of the idea that if you allow yourself to be depressed, your cancer (or other illness) will recur. I think a basic idea is that people are eager to believe they made themselves sick, since then they also should have the power to make themselves well. Accepting the lack of control over an illness is just too frightening. I am also not surprised that recent studies show that expressive writing is not an effective intervention for cancer patients. And people who cope by finding benefits will find more benefits when they experience a trauma, and then will appear less depressed and more cheerful (which they were a priori).