As someone who’s had chronic pain for more than eleven years, I was deeply troubled by a recent episode of the Invisibilia podcast. It was published a few weeks ago and I’m not linking to it because I don’t want to help spread damaging material. It follows a teenage girl’s treatment for Amplified Musculoskeletal Pain Syndrome (AMPS) at a medical facility that believes the best way to treat her particular chronic pain disorder is to put its patients in more pain. For five to six hours a day. For weeks at a time.
They force these teenagers to endure physical activities that cause them so much pain that they vomit, have asthma attacks, and get bloody noses. They even keep vomit bags in the gym so they can flush the barf down the toilet instead of smelling it in the trash all day (as one physical therapist complains about). It’s like a twisted version of The Biggest Loser for pain patients. Their parents aren’t allowed near them, presumably because they would stop the torture. The patients are also forbidden from taking any medication that might help ease their symptoms, so at one point a girl having an asthma attack is told to just push through as she starts to asphyxiate.
This show made me feel like I’d watched that episode of The Knick where they treat a woman with postpartum depression by pulling all her teeth out. A lot of things are problematic, namely:
- A treatment that tortures its patients and relies on self-reporting to measure its effectiveness is inherently compromised.
- Relevant scientific information about the anterior cingulate cortex (ACC) and the nature of neuroplasticity isn’t mentioned.
- A whole bunch of other stuff about our culture’s twisted relationship with pain and gender was overlooked.
- There was overreach in the podcast’s description and its depiction of the cause of the opioid epidemic.
- Teenagers typically haven’t learned to be their own advocates yet, so they might not be able to properly consent to this treatment.
A treatment that involves torture and self-reporting is inherently compromised
The most disturbing thing about this treatment is that it contains a HUGE logical problem that the journalist covering it didn’t seem to notice:
- The treatment of chronic pain relies on self-reporting. (There is no test or scan that can objectively tell you how much pain someone is in.)
- Torture is not a reliable interrogation technique because people will tell you what you want to hear to end the torture.
- A treatment that tortures its patients inherently compromises the reliability of their self-reporting.
- Thus, this treatment creates patients who will tell you they’re better, even when they’re not.
Sadly, an allegation on Reddit by someone that claims to have been a patient in this program supports this theory:
It was excruciating. It was terrible. It did not make me better…I ended up leaving the program, like many of the others in my cohort, by lying about being in less pain. Facebook was a thing and we had all friended each other. Finally someone who’d left before me said “you have to lie,” and several others confirmed this.
I can’t confirm if the person who posted this comment actually attended the program, and I can’t confirm if her statements about what other people said are true. I am prone to believe her because I can’t think of a good reason to lie about it, whereas I can think of a good reason why someone would lie to stop getting tortured. It was sad to read this person claim that the treatment had made her mistrust doctors and robbed her of her love of her favorite activities like swimming and jumping on a trampoline.
If all of that is true, it’s morally reprehensible for NPR to promote a podcast claiming the treatment works when it’s actually harming young girls. At the very least, the podcast should be taken down until more follow-up reporting can be done and the comments of the Reddit user can be investigated. It would also be helpful to interview people who are 5 or 10 years out of this program to gauge how it’s affected their lives.
I’m not sure why the reporter didn’t notice this problem, but I suspect it’s because the torture these girls were experiencing was not labeled as torture. It was a “medical treatment,” much in the same way the Bush administration called waterboarding “enhanced interrogation.” These phrases don’t have the negative connotations the word “torture” does. The wording purposely shifts the way an observer interprets what they see, making it more palatable. Even though the reporter in question watched these girls being tortured and says she felt extreme distress watching the torture, she was unable to label it as torture because it was all done under the halo of medical supervision.
The anterior cingulate cortex (ACC) and neuroplasticity weren’t mentioned
Though this episode purports to “highlight the complicated relationship between attention and pain,” it fails to mention the anterior cingulate cortex (ACC), the portion of the brain that regulates what you pay attention to and thus modulates how much you focus on your pain. If you Google “anterior cingulate cortex pain” a lot of interesting stuff comes up. The fact that the ACC wasn’t mentioned in this episode is a huge oversight.
The show also didn’t mention the concept of neuroplasticity, which is the brain’s ability to change itself. Nor did it discuss how neuroplasticity works against people with chronic pain. Given the fact that the girls in the program are forced into painful situations for several hours a day, it’s odd that no one mentioned that this might be training their brains to be better at being in pain, thus making their conditions worse. That’s why the longer you’ve been in chronic pain, the less likely you are to be cured of it. (For more info on neuroplasticity, I recommend The Brain That Changes Itself by Norman Doidge.)
Why weren’t these concepts mentioned? If you do a bit of research about chronic pain, they’ll come up and they seem extremely relevant to the treatment in question. Scientific research backing the idea that pain is modulated by attention would have been far more convincing to me than the homespun story of one girl who likes to dance.
It’s particularly unfortunate because I don’t disagree with the idea that attention and pain are linked. I’ve written about the fact that the amount of attention I pay to my pain can modulate my suffering in some instances (though not always), but even then it never makes it go away entirely. And I do think there limits to how effective this method can be, particularly when your pain is INTENSE. However, the treatment described in this podcast has taken that concept and twisted it in horrific ways.
Lots of other overlooked info, particularly about gender and pain
I acknowledge that this episode is about one particular condition and treatment, not about all chronic pain. I understand that might be used as a reason for why the things I’m about to list weren’t mentioned, but I think the report would have been better if they had been.
The podcast failed to mention how women’s health complaints are frequently ignored or not taken seriously by the medical community and are often labeled as hysteria.
It failed to mention that for biological reasons women are more prone to pain disorders, and because women’s illnesses are not taken as seriously as men’s diseases there has been a lack of research into chronic pain disorders.
And in a particularly despicable moment, the journalist presents a theory that blames the patient’s pain on her inability to process her feelings, similar to how people with ulcers were once told their problem was caused by stress when it was later determined to be caused by the bacteria H. Pylori. They neglect to mention that ideology like this is why women’s pain complaints are often labeled as hysteria.
Overreach in the podcast’s description and its depiction of the opioid epidemic.
The description for this podcast is blatantly inaccurate. It says, “We look at how our culture’s massive effort to address pain has paradoxically increased it,” as if this is a proven fact for all people with chronic pain, when actually the episode is about one person with one specific disorder and no proof is provided to support this theory, even for the single case it follows. The journalist admits the treatment hasn’t been double-blind tested and they don’t show any evidence that the doctor’s theory for the cause of that patient’s pain is accurate.
The cause of the opioid epidemic is grossly oversimplified. It’s implied that the epidemic was caused by people feeling empowered to talk about their pain. They fail to mention that the pharmaceutical companies lied to doctors about the addictive nature of their product or that drug distributors knowingly sent millions of pills to towns far too small to require such a demand. Instead, they imply the blame lies with the victims of the crisis.
The podcast also doesn’t make it clear enough that this one girl’s experience is not indicative of how all chronic pain works. It would have only taken 15-20 seconds to add a few sentences that clarify that. As a result, some people will walk away from this episode thinking it’s a microcosm for how all chronic pain works and should be treated. They might also misinterpret this report as an endorsement of the treatment, particularly because no experts were interviewed who might question the validity of the treatment to provide balance.
Teenagers typically haven’t learned to be their own advocates yet
I am also concerned about a teenager’s ability to consent to the treatment program they described. To successfully navigate the medical system, you must learn to be your own advocate. You need to stand up for yourself. You need to make sure your doctor is hearing and understanding what you said. You need to ask questions about what you don’t understand. You need to realize you are the boss and you get to decide what happens.
Teenagers who become chronically ill typically haven’t realized this yet. You usually don’t learn it until you’ve been in the medical system for a few years. Here’s how it went for me:
Medical science can cure anything! I will see doctors who will fix me. I will do whatever they tell me to do and I’ll get better soon for sure!
Doctors are not God’s representatives on Earth. My doctor is my partner, not my boss. I can fire him/her if necessary. I get to make the decisions about my treatment.
I doubt most of the teenagers in this program realize they can fire their doctor. I’m not that familiar with parental consent laws, but there’s a possibility that the patients under 18 years of age might NOT be able to fire their doctor. And really, how many teenagers are brave enough to tell a doctor and their parents that they’re wrong about something? Even if they want to leave this program, they might not be able to or might not yet realize that they have the power to make that decision.
This worries me a lot.
The importance of a sensitivity reader
I wasn’t the only one upset by this podcast. A post at Cripple Magazine by Elizabeth Mintz pointed out a lot of these issues. And the Twitter responses to the original tweet of the episode contain a lot of similar sentiments about all the ways this episode is spreading harmful myths about chronic pain and will undoubtedly cause ripple effects that will hurt other people. The public editor at NPR did look into this episode of the podcast and acknowledged a few flaws in the reporting, but most of the stuff I mentioned above was not addressed.
The producers say they did have a few people listen to the episode before posting it, but they never say they played it for someone with chronic pain. The use of a “sensitivity reader” has become a popular concept in the publishing community. It’s when you have someone in a certain group mentioned in a book read it to make sure there isn’t anything problematic or incorrect in it. It’s strange that I haven’t seen the producers of this podcast mention playing the episode for someone with chronic pain before publishing it. If they didn’t do that, it’s something they should certainly start doing. It could have prevented a lot of the blowback on this.
The long-term damage of this episode
What distresses me most about this podcast is thinking about all the damage it will do to people who already suffering.
Someone who listens to this podcast will someday tell someone who is in pain, “Hey, I heard on a podcast that if you stop talking about your pain, it will go away. So, shut up already!”
Someone who listens to this podcast will someday tell someone who is in pain, “I heard on a podcast that chronic pain happens because you can’t process your feelings, so stop complaining and go see a therapist. Your disease isn’t real.”
Someone who listens to this podcast will someday tell someone who is in pain, “I heard the best way to get rid of chronic pain is to put yourself in more pain. So, just shut up and power through it.”
Someone who listens to this podcast will someday tell someone who is in pain, “A doctor on this podcast I listened to once said suffering is inevitable in life, so stop whining.”
Someone who listens to this podcast who is in chronic pain will think, “No one will ever take my pain seriously. They think it’s all in my head. I am totally and utterly alone.”
My heart hurts thinking about all these people. It’s sad that a podcast about the invisible things in our lives has made its listeners feel invisible. Hopefully one of them will find this blog post and realize those assumptions aren’t the truth.
Your pain is real. You deserve to be seen. You deserve to be heard.
Don’t let anyone tell you otherwise.
Photo by Xu-Gong / CC BY-ND 2.0
You and your words make the world a better place
Jennette Fulda says
@Cynthia – This is one of the nicest things anyone’s ever said to me. Thank you 🙂
@undefined – Hope you are doing okay.
“Your pain is real. You deserve to be seen. You deserve to be heard.”
Perfectly summed up and a brilliantly argued post. Sounds like a totally irresponsible way to tell that story.
Alex Guest says
First, thank you. From the decade+ long struggle with my wife’s Fibromyalgia I’ve taken a further lesson on advocacy. I see Doctors – and Medicine as a whole – as employees, not partners. I recognize that not listening to them lessens their ability to contribute but people who would recommend more pain can’t have that much to add (I may have to be wrong about that someday, but it’ll be a day after a LOT more demonstrative medical work has been done supporting this idea).
And then, authorities didn’t show up and take everyone away at the end of the podcast – PBS included. I can’t even tell myself that sort of nonsense isn’t going on in my neck of the woods, can I. The stories we’re telling ourselves about pain these days ARE frightening. I look at the Nascan the state of California requires that I keep at the ready to help my wife if … I look at it and wonder how anyone would ever know they- we- I will do more harm than good.
I am reminded that Larry Nassar called his sexual abuse of gymnasts medical treatment too. I wonder at someone who could witness the torture you describe and not also think about the dozens of girls he ‘treated’, their parents were kept away as well.
Belinda Fagan says
I just found your site. I have lived with chronic daily headaches and frequent migraines for 12 years after fertility treatment, where I was given a drug for endometriosis called Lupron (Lucrin here in Australia). I really do sympathise with your situation as chronic daily pain has stolen my ability to work, many friends and my relationships with family members have suffered enormously. I too feel as though I have not been believed. It is a terribly isolating experience. I do so hope that one day you will find a solution to your pain.