Category Archives: Stories

September 19, 2018

Over-dramatizing chronic pain isn’t helping much

The most recent MMWR report on the prevalence of chronic pain from the US Centers for Disease Control (CDC)  continues today’s unfortunate trend of over-dramatizing chronic pain and feeding the frenzy that sends the message “this is horrible; medical science has gotta DO something for these poor people!”   There are simply NOT 20 million people in the USA suffering constant agony from debilitating chronic pain.  There ARE a lot of people with chronic aches and pains, and most of them are coping with it just fine, thank you.

The two crude questions that the survey asked people to answer -– and the way their answers were interpreted, especially the way they defined “high impact pain” -– makes pain look like a bigger impediment to a good life than it actually is -– for most people.  And, more importantly, I believe the list of questions failed to identify the group that most desperately needs better help.

Information about pain was collected through responses to these two questions:

  1. “In the past six months, how often did you have pain? Would you say never, some days, most days, or every day?”
  2. “Over the past six months, how often did pain limit your life or work activities? Would you say never, some days, most days, or every day?”

Chronic pain was defined as pain on most days or every day in the past 6 months. High-impact chronic pain was defined as chronic pain that limited life or work activities on most days or every day during the past 6 months

Aches and pains, both short-lived and long-lasting are an unavoidable part of everyday life. Acute pains are the result of being out and about, being active, and using the body like it is designed to be used — exercising muscles harder than usual, dropping something on your toe, tripping over a curb, or getting a sore throat or a tension headache. Chronic pains are usually the residual of various kinds of accidents, illnesses, traumatic events and other untoward events in life — including the progress of aging.

To me, that means PAIN as well as LOSS — and adapting to them — are “natural” consequences of being alive. How many people who have lived a full and eventful life have no “scars” or “tricky joints” of any kind to show for it? How many old people have you met who DON’T have any aches and pains? The question is: how do we view our pain, how do we manage it, and how have we adapted to it?

I, for example, am old. And I meet the CDC’s criteria for chronic pain, and even for “high impact” chronic pain. I have some pain in the joints of my hands and feet due to age-related osteoarthritis — with maybe some extra wear and tear on my feet due to several years on tiptoe and in toe shoes as a dancer more 50 years ago!  My fingers and toes ache virtually every day, especially when I move them a certain way or use them a lot — or I part my hair on the wrong side 🙂

The range of motion in some of my fingers and toes is limited. Sometimes a nerve gets caught on something inside my foot — which suddenly creates a searing stabbing pain – which hurts like stink. My stiff, increasingly deformed, and chronically achy finger joints have certainly affected my ability to use my hands for forceful pinching and gripping. I have also had to adjust the kind of shoes I buy, and sometimes I have to avoid walking long distances — on those days when my feet really hurt. Sometimes, the numb, burning sensation in my forefoot forces me to limp. When it gets too bad, I have to stop walking and attempt to “readjust” the position of the structures inside my foot. A successful adjustment is accompanied by a clicking sensation and a sharp searing needle-like pain, and then complete and sudden relief.

However, I don’t believe I’ve ever taken an aspirin or tylenol because of my chronic joint pain. I have not gone to a doctor about it because my discomfort is quite tolerable, the extreme pain is very occasional, and I have no need to do a lot of physically-demanding walking or gripping. And I am certainly not interested in surgery – I see little point in allowing someone to muck around in the complex structures of an old arthritic foot that is going to continue to get MORE arthritic due to natural processes.

In short, I am quite able to work around my chronic pain. I have adapted to it, and quietly and without (much) whining made adjustments in what I do and how I live. Perhaps others would not approve of my personal adaptation strategy — I’m awfully sedentary — but it is working for me. My pain is NOT dominating my life, is NOT the main focus of my attention, and is NOT sucking the joy out of my existence. In fact, I am really enjoying my life as it is.

The people whose pain IS dominating their lives, IS the main focus of their attention, and IS sucking the joy out of their existence are the ones who most desperately need help. And maybe what they need most is a re-orientation – to make LIFE the point of their life and learn techniques for how to control their own symptoms and put pain on the back burner of their brain — instead of keeping it on the front burner as a blinking red bad and pressing problem that must be solved.

So, personally, I think we should stop talking about pain and loss as though they are terrible things that shouldn’t BE — and instead make it clear that the job in front of us is to learn how to (1) adapt to and cope successfully with the unavoidable and unpleasant things that happen while we are alive, AND (2) find ways to minimize their impact on our everyday experience by focusing our energies on creating a good life anyway.

Over the last several years, I have been following the science of pain treatment and collecting tools and resources that can help people learn how to achieve a victory over their chronic pain.  Among many other techniques, acceptance and commitment therapy (or ACT) seems to be a very promising technique in this regard.  So are several other techniques that help people who are stuck living with pain give up on being angry at it or trying to “get rid” of it.  That’s because our brains are arranged so that what we pay attention to stays on the front burner.  What we resist persists.

The American Chronic Pain Association’s website has a wide array of free and low cost resources for people living with chronic pain and who want to move “from patient to person” again.   Among my favorites are the ACPA’s Ten Steps From Patient to Person and the ACPA Resource Guide to Chronic Pain Management which begins with self-directed therapies.  The ACPA also has a network of chronic pain support groups in local areas.

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January 5, 2018

More empathy for suffering improves patient experience

I just ran across the story of Rana Awdish and her sudden, near-fatal medical catastrophe — which put her in the critical care unit and resulted in the death of her near-term unborn baby.  She is a physician and was in specialty training for critical care medicine at the time.  The experience taught her a lot about the nature of suffering.  It also showed her that human caring and empathy is too often missing in hospital care today.  The story appeared on the NPR website yesterday, entitled Brush With Death Leads Doctor to Focus on Patient Perspective. She’s just published a book about the experience and what it taught her.  The title is In Shock.

I found an essay of hers published in the New England Journal of Medicine a year ago entitled “A View from the Edge – Creating a Culture of Caring”. In it, she provides more facts about what happened, especially the way the hospital medical staff and other employees treated her while she was in the hospital.  She clearly had intense emotional suffering at the same time her body systems were failing and she was near death.  Sadly, it is also clear that the people taking care of her did a much better job of attending to her medical problems than her human ones.

In her recounting of the facts, she highlighted specific careless and hurtful remarks that she had overheard or that her physician colleagues had said to her face.  She also highlighted some examples of tender caring others had demonstrated during her hospital stay.  In her new position as Medical Director for Care Experience at the hospital, she has used those specific examples to improve the training for all employees, from physicians to housekeeping staff.

Reading the three paragraphs below transformed the essay for me; it went from worthwhile to sublime.

“Through the training that was developed, participants learn to articulate their purpose as distinct from their job. Transporters hear how meaningful it was to me when one of their own — having seen me break down when questioned by someone in radiology — took it upon himself to warn the technicians performing various tests not to ask about the baby whose small pink wristband was still in my chart. He asked his colleagues to do the same. In an 800-bed hospital, the transporters had united to form a protective enclosure around one patient.

“Similarly, radiology technicians learn what a kindness it was that they stopped trying to awaken my exhausted husband to move him from my bedside for my portable x-ray, instead throwing a lead cover over him and letting him sleep. The power of these stories shows new employees that they have a purpose and that they are valued.

“In addition, new employees are taught to recognize different forms of suffering: avoidable and unavoidable. Our goal is to find ways to mitigate suffering by responding to the unavoidable kind with empathy and by improving our processes and procedures to avoid inflicting the avoidable kind whenever possible.”

I bet every single employee can find a way to share in a purpose like that.  From top to bottom on the hospital’s / corporation’s / our society’s pecking order of life, we have our humanity in common. We all have hearts and the innate ability to attune ourselves to notice another’s need or distress, and then to find a way to express caring for them.

There is an irony in the essay.  Most of the examples of uncaring comments came from highly trained healthcare professionals.  Most of the examples of compassionate behavior came from employees with more humble backgrounds and jobs.

Here’s another example of that, a YouTube video about Carolyn Collins, the janitor at Tucker High School.  The narrator says Carolyn has found her “true calling” — a purpose she finds deeply meaningful.  She maintains an extra “janitor’s closet” full of necessities for the 20 to 30 homeless students who attend that school.  She came up with the idea herself.  And she spends her own time and money to make sure that closet is fully stocked so those homeless kids always have access to free clothes, school supplies, snacks, and emergency food.

Notice again that this big-hearted person is a janitor.  As you listen to her talk on the video, imagine her own background, her educational level, and the size of her paycheck.  The narrator says Carolyn’s young son was killed in a home invasion.  I think Carolyn believes the person who killed her son was a desperate person.  As soon as she realized there were homeless kids attending Tucker High School, she was inspired to act.  She wants them to have what they need so they can go to school, and don’t need to steal or get in trouble — or kill someone.

I find the goodness of people heart-piercingly beautiful. And I’m the one who feels humble right now.

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