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New York Times, Do Better — Chronic Pain Patients Are Begging You

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My chronic pain is literally in my head. It’s the reason I don’t currently have children. It’s also why I sobbed while folding a pair of leggings last night and vomited after a seemingly timid 8-minute drive to my parents’ house. I didn’t dream this life up for myself — medical trauma is a bitch.

So you can take an educated guess at how I felt when I saw “The Pain Brain,” the new six-part editorial series on chronic pain recently published by the New York Times. I first heard about it on Twitter, where a lot of chronic pain advocates were raging about its tone and approach. Then I took a look for myself. That was a mistake.

For what it’s worth, here are my top three takeaways:

Stop pairing the opioid epidemic with chronic pain patients. Full stop.

It’s already extremely difficult for us to access medications that are moderately effective for relief. Is addiction a valid struggle? Of course! There are definitely situations and certain health conditions where opioids do more harm than good. But constantly aligning the two is dangerous rhetoric. They are not a package deal. Contrary to what you wrote, it is very possible to talk about pain without mentioning opioids. Now is a great time to start.

Stop blaming patients for their own pain.

When you preach the teachings of medical professionals like Dr. John Sarno, who believes “nearly all chronic pain is simply repressed emotions” (from Juno DeMelo’s piece), you are blaming patients for their own pain. That’s like saying my house accidentally caught on fire because I’m depressed. It puts chronic pain and mental health in the wrong room. Hell, it puts them on the wrong planet. Pass.

Our chronic pain experiences and how we describe them are valid.

Yes, language matters. But “taking care with metaphors” (from Cameron Walker’s piece) is not a magic wand to erase pain. Whatever creative language a patient uses is valid because it’s what they’re experiencing. To use one of your examples, cancer is cancer. It can be called a “weedy garden” or a “twisting fairground ride” all you want, but it doesn’t diminish its very painful presence in the lives of very real people.

When articles like these are published, it sets the entire chronic pain community back. Me, screaming into the void: We were already behind! Patients like me are already drowning in the jet-black abyss that is the health care system. We’re belittled by strangers who can’t see our pain and dismissed by medical professionals who do not take our symptoms seriously because they can’t see it on a scan.

Here’s what you could’ve done instead: crowdsource the chronic pain community to find out which helpful topics we want to read about — don’t assume you know best as someone who’s able-bodied. Try hiring more reporters (and editors) who have lived experience with chronic pain. Instead of primarily consulting with medical professionals and outdated texts, lean on patients (or at the very least, patient advocates) to tell their own stories. You did this with Kari Cobham’s contribution about self-advocacy. It was excellent. More of that, please.

I’m begging you to do better for the millions of people who wake up each day in a body that feels like a minefield. We want to be seen, but not like this. We deserve so much more.

Getty image by Peter Schreiber Media.

Originally published: November 14, 2021
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