The ways we demand sufferers "work" to be better.

I've often talked about the ways people who suffer from pain are often told they are Doing It Wrong; that their ways of coping and being in the world are incorrect. 

Hayden Shelby, over at Slate, discusses the ways in which the current "cultural moment" of CBT (cognitive-behavioral therapy) has had unintended consequences, delaying and hampering her own health and well-being because of the unexamined assumptions her therapists and doctors have made about the 'universal' effectiveness of CBT. 

What Shelby describes is so familiar to so many of us - the repeated dismissal of the lived experience of the sufferer in favor of the new, shiny approach. She writes:

A couple of months prior, desperate and unable to eat or sleep, I had gone to a psychiatric hospital. I knew from experience that it was time to make a significant medication change, and I expressed this to the nurse practitioner handling my case. She came back with the recommendation of a three-week course of intensive outpatient CBT. I pleaded to talk to the attending psychiatrist, who thankfully agreed with my own assessment and got me on the track to recovery.

This whole course of events had been kicked off much earlier at an appointment with my then-psychiatrist—I had gone to him certain that the medicine I was on was “pooping out,” a well-documented but little understood phenomenon I typically experience every few years, in which a previously reliable medication just stops doing the trick. I’ve always solved this problem by rotating to another drug. But this time my doctor resisted. He had been reading up on CBT and was convinced that if I worked hard to change patterns in my thoughts, I could learn to control the problematic feedback loop between my brain and body. He insisted I try CBT before switching meds. I elected to find a new psychiatrist, a process that took weeks—long enough for me to spiral down into a hole I’m just now climbing out of.

What strikes me as the most pernicious part of this is the eagerness of health professionals to frame CBT as a be-all-and-end-all for everyone, without further consideration of lived experience. It CAN BE a strong and effective treatment but it's not completely benign if there's a fluffy-bunny undercurrent of "you're not getting better, it's your fault for not trying".  Again, Shelby sums it up succinctly:

In fact, the latest movement in CBT even removes the therapist altogether. This “self-help” CBT assists patients through online guides and apps. And self-help accurately describes the way CBT is frequently packaged—with pure positivity and a can-do ethic. The “work” of getting better is up to the patient, who is responsible for her own success.

This characterization sets up a scary flip side. When medications don’t work, the fault is that of the pill. When traditional talk therapy doesn’t work, you can blame a “poor fit” or a lack of chemistry. But in CBT, failure redounds to the individual. The cumulative message I’ve gotten about CBT amounts to: It’s effective, so it should work, and if it doesn’t work, it’s because you didn’t try hard enough.


I don't know how we can begin to address this systemic and damaging bootstrap mentality, but it's important that we do so. Moralizing care does nothing to help people who suffer.This is but one more example of the way our particular society (American) is obsessed with the appearance of "healthy" while we ignore or demonize treatments that may actually get a particular person to "healthy". 

We prefer people be some arbitrary value of "good" - and suffer - than to have them avail themselves of a treatment we disapprove of and heal.

Shelby's article can be found here:


One Account of Navigating the Minefield of Pain Medicine

At Jezebel, Amiee Lutkin writes of the experience of her mother, and how her chronic pain - and its treatment - became life-threatening until the correct treatment was prescribed. Her mother's complex medical history and development of an ulcer after the over-use of a common pain medication made Fentanyl the best choice to manage her pain.

Ms. Lutkin offers a sympathetic and nuanced look at the difficulties of pain management in our current social, medical, and political environments. She speaks with doctors and patients and is certain to not ignore context. The whole thing is worth a read, but an excerpt I found salient:

It’s easy to be casual about other people’s pain, and that’s the beginning of the disconnect between people who are suffering and the systems meant to help them. Dr. Hansen believes that many of his patients are worn down and disenfranchised by years of not only physical difficulties, but the mental exhaustion of being told to “suck it up.”


I’ve now watched my mother take fentanyl for over a decade. I’ve answered more phone calls to her crying than I can count, because another doctor was threatening to stop prescribing the only drug that has ever relieved her pain and still allowed her to be herself. Because the pharmacist messed up the paperwork, or closed early, and she was facing a long weekend without relief. Because she’d been humiliated by a nurse or physician’s assistant who saw a woman racked with anxiety and dismissed her as an addict. Every ten days she finds out if she can continue to live without debilitating pain for another ten days.

With all these hurdles, of course, she wishes she didn’t need fentanyl, but in her state, detoxing is a very challenging option. She says, “My body is so used to it, I have no idea. I know a few times when I didn’t have enough, or sometimes when I wake up in the morning, I just scream when I’ll put my feet on the floor. So I’d have to figure out how to live with that.”

And because of withdrawal coupled with her MS, Pam says she could have seizures or die. “It’s not like I was just abusing drugs, I’d have to find a way to deal with the pain also. And then to be sick on top of it, even if I get a cold now, it makes my body very week for weeks afterwards. So I can’t imagine doing a detox. I also have problems with swallowing and that’s about breathing, so vomiting with detox doesn’t sound very safe…

“I think it’s a good clean drug,” she considers. “I try not to read any of the bad stuff about it. I haven’t been able to drink champagne. That’s the only thing I miss. It’s tough being sick.”

She laughs.