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Chronic Pain

NPR's 'Invisibilia' Podcast Highlights Treatment Strategy Involving Treating Chronic Pain With More Pain

Paige Wyant
 • 
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On March 8, the NPR podcast “Invisibilia” released the first episode of its fifth season, called “The Fifth Vital Sign.” The show, co-hosted by journalists Alix Spiegel and Hanna Rosin, centers around “the invisible forces that shape human nature” and aims to combine human stories with psychology and brain science.

In this episode, Spiegel and Rosin follow the story of a teenager with amplified pain syndrome who undergoes a type of controversial treatment that involves being put in even more pain.

Devyn was 14 years old when she began experiencing excruciating pain in her hips. “I went to bed as I normally would, and then all of a sudden … my hips… they just hurt unimaginably!” she said. “I started crying, and I started shaking.”

She and her mother, Sheila, began going to doctors and surgeons to search for the cause of the problem. They assessed Devyn’s pain based on a 1-10 pain scale, ordered tests and prescribed her pain medication, but all came to the same conclusion: She appeared to be perfectly healthy.

Devyn said the pain started spreading down her legs and arms. “Pain just took over,” she said. “Sometimes I couldn’t wear pants, I couldn’t wear socks, I couldn’t have the covers on my leg. Sometimes I’d have to turn the fan off, because the fan being on would hurt my leg.”

Because doctors could not find a root cause of Devyn’s pain, they believed she was dealing with an overly sensitized nervous system as a result of an injury she had experienced years earlier. This hyper-sensitization was causing her brain to “overreact” and perceive regular stimuli as painful — something that may sound familiar to others with various pain conditions, such as complex regional pain syndrome.

However, some of Devyn’s doctors questioned whether some of her pain was psychosomatic and believed her brain just “couldn’t stop paying attention to the signals it was receiving.” And after seeing her daughter’s life change drastically due to pain, Sheila was so concerned about Devyn’s identity going from “dancer to performer to sick girl” that she wanted to focus on getting Devyn’s focus off her pain.

That’s when Sheila found Dr. David Sherry, a pediatric rheumatologist at the Children’s Hospital of Philadelphia, who takes an unconventional (and controversial) approach to treating children’s pain. According to Sherry, the more attention you pay to something, the greater it becomes, and the more it gets reinforced in your brain. He believes that people nowadays are trying to treat and rid themselves of pain too aggressively, which only leads to increased pain — so his treatment strategy for children with amplified pain is to “put them in pain to get them better.”

Dr. Sherry published a study in 1999 in which 49 children with complex regional pain syndrome were treated with an intensive exercise therapy program and followed for more than two years. The study began with 103 children but less than half participated the full two years. According to the results of the study, 43 of the 49 children remained symptom-free for two years. However, NPR writes, “His approach hasn’t been validated by larger, controlled trials, and in fact, a portion of patients don’t do well; they drop out or don’t benefit in any way.”

Devyn ultimately attended a program run by one of Sherry’s former rheumatology students, Dr. Cara Hoffart, at Children’s Mercy Hospital in Kansas City, Missouri. Devyn was to be put in as much pain as possible through physical workouts that lasted five to six hours a day. Talking about pain was forbidden; instead, Devyn was supposed to describe whether the exercises were “easy, medium or hard.”

Devyn was also forbidden from taking any medications or doing anything that might help her feel better. At one point during her exercise, she had an asthma attack, but was not allowed to use her inhaler since it was considered medicine. Instead, she was told to take a walk and calm herself down. Later, Devyn got a nosebleed, but was instructed to keep going with her activities and not let herself get distracted by any pain or physical issues.

When she graduated the program after three weeks, Devyn said her pain level was at a “six,” but about a month later she said it had gone down to practically zero — allowing her to dance again.

Although the episode seems to end on a positive note, many of those in the chronic pain community were quick to respond in outrage to the treatment methods described — including several of Sherry’s former patients — and the podcast’s failure to highlight dangers of the treatment.

Many believe the treatment methods used by Sherry, Hoffart and others are physically and emotionally abusive (especially when directed against children). Though it might have been difficult to determine the reality of the program based on one (anonymous) family’s account, others have already spoken out about Sherry, both via social media as well as patient reviews on various medical rating websites, in which many cite cases of abuse and trauma.

This treatment approach has also been criticized for being a major step backwards in how people think about pain. Damaging stigmas and misconceptions about chronic pain have existed for years, many of which are tied directly to harmful misconceptions about women. For instance, it’s long been thought that women are “overly sensitive,” “emotional,” “dramatic” and “hysterical” — so oftentimes complaints of pain are chalked up to the woman being “too sensitive,” “too dramatic” or “weak.” This may be especially amplified when the girl is a child.

Others have claimed journalistic irresponsibility by the podcast’s creators, as Sherry’s study is 20 years old, focuses on a small sample size and cannot be confirmed by any other longer, controlled trials. Though chronic pain may be a relevant topic, as it affects more than 50 million Americans, some have questioned why this treatment method — grounded only in a single, out-of-date study — was highlighted.

Some have called for the episode and accompanying article to be retracted, while others are calling for a follow-up show that corrects misinformation and elevates the voices of those who were mistreated by the doctors mentioned.

Update: NPR responded to the criticism against the episode, saying it regrets some of the language used and apologizes that some chronic pain patients felt triggered or harmed by the story. “Our intention was not to dismiss your suffering, but to highlight the complicated relationship between attention and pain and how our culture’s attitude towards pain has shifted over the past fifty years,” the “Invisibilia” hosts write. The response includes comments from Dr. Cara Hoffart, addressing several of the specific questions raised in response to the episode.

What’s your take?

Tell us what you think in the comments below.

Photo by Alexis Brown on Unsplash

Paige Wyant
 • 

Paige is passionate about helping people with chronic health issues share their stories and connect with one another.

paigewyant
Originally published: April 14, 2023
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