How CBT Harmed Me: The Interview That the New York Times Erased

How CBT Harmed Me: The Interview That the New York Times Erased

Alana Saltz

 

In August, I was contacted by a reporter writing an article for the New York Times on cognitive behavioral therapy (CBT) as a treatment for chronic pain. They had seen a Twitter thread I wrote that criticized CBT, calling out the harm it can do to chronically ill and disabled people like me, especially when it’s used to treat chronic pain and trauma.

I told the reporter that I would only participate if the article wasn’t going to perpetuate any ableist ideas or attitudes. I was aware that the New York Times has a history of publishing problematic content around chronic illness and disability. The reporter assured me that they would be respectful of the patient perspectives the article was including and that they wanted to get it right. So I agreed to do the interview, hoping my story might bring awareness to how harmful CBT can be as a treatment for chronic pain.

The day before the article was scheduled to be published, the reporter emailed me. They said the piece had been rewritten by their editors with all of the patient perspectives removed. It was released as a pro-CBT article called “How Psychologists Can Help Treat Chronic Pain,” featuring interviews with mental health professionals who profit off of CBT and pain psychology. Even after the reporter went out of their way to include and advocate for disabled patients to be part of the conversation, the opportunity was thrown away, along with our experiences and perspectives. The article reads as self-congratulatory, biased, and anti-opioid, going so far as to say that therapists are providing a “powerful salve for suffering” despite later admitting that most research only shows one-third of participants experience significant improvement. They removed the quotes they had from actual patients who received CBT and found it unhelpful or harmful.

Coverage that erases lived experience does a disservice to the public’s understanding of chronic pain. When discussing treatment options, patient perspectives should be centered in the conversation. I don’t know what exactly motivated them to remove the interviews they did with patients. It would have brought important nuance and awareness to what it’s actually like to receive treatments like CBT. More and more organizations are realizing the harm that modalities like CBT and graded exercise are doing, removing them from recommendations and guidelines. After reading the entire chronic pain series released on November 9th, it’s apparent to me that their goal was to perpetuate outdated, victim-blaming treatment models like CBT, graded exercise, and toxic positivity to discourage the use of pain medication, once again intentionally neglecting to include relevant research, activism, and disabled people’s lived experiences.

This is the full interview I did with the reporter via email, the interview that the New York Times didn’t want people to see. 

Not here for the NYT’s series on chronic pain but I *am* here for CPPs roasting the absolute fuck out of it 🔥

— Anna Hamilton (@annaham360) November 10, 2021

 

Summarize your experiences with chronic pain and chronic pain treatment experience.

I’ve been experiencing chronic pain since childhood, and it’s gotten significantly worse over the years. I started seeing doctors for chronic headaches, stomachaches, and fatigue around the age of six. I was missing a lot of school due to the pain. My symptoms were quickly dismissed and I was told to just take Advil or Pepto Bismol. Doctors didn’t refer me to specialists or do testing. I started seeing a therapist and was diagnosed with anxiety disorder. I’ve since learned this is a very common experience for people with chronic illness and pain.

It was incredibly difficult for me to function day-to-day due to the pain and fatigue. It felt like no one understood what I was going through, including the therapists I saw who told me I was just anxious or overreacting. I was told that my pain wasn’t real, would pass if I stopped paying attention to it, or was being exaggerated. I received the same message from many others in my life. They told me I was faking to get out of school or being melodramatic for attention. None of that was true. So on top of being in chronic pain that just got worse, showing up more often and in more areas of my body, I felt dismissed, judged, and alone.

Most of my chronic pain treatment, aside from over the counter meds and the occasional prescription for symptoms like heartburn or migraines, was therapy and psychiatric medication. Doctors continued to dismiss my pain and gave mental health diagnoses instead of investigating my physical symptoms. The underlying physical issues causing my pain were overlooked and misattributed to being psychosomatic. Psych meds never helped my chronic pain. I tried almost all of them, yet that didn’t signal anything to my psychiatrists except that I was a “difficult case.” They didn’t consider that there really was something physical going on [and many people do have co-occurring physical and psychological conditions].

Finally, after almost 30 years, I’m starting to receive physical diagnoses that explain my symptoms, including the chronic pain. That’s only because of my continued efforts to do research, connect with others in the chronic illness community, and advocate for specialists who know about complex conditions and are not dismissive and biased. Unfortunately, even with my recent diagnoses, the conditions I have are under-researched and don’t always have clear treatment paths. The medical establishment has intentionally neglected researching and treating them. Most doctors don’t know much about the conditions or falsely believe they’re too rare to need to know about, so I’m basically back to square one. I’m still not being provided treatment that actually helps my chronic pain. Even with a growing list of medical diagnoses, therapy and psych meds are still routinely recommended to me, sometimes as the only treatment option.

 

Who recommended CBT for you? Did you want to try it, and did it help you?

CBT [cognitive behavioral therapy] is a common modality that therapists have used with me. I started therapy at a young age and didn’t know what was going on or what it was supposed to be. I remember starting to learn more about therapy modalities in my teen years and my therapist at the time telling me that’s what she was using. I was open to it because I felt I had no choice but to trust practitioners and believe they knew what they were doing. I remember pushing back when therapists told me my pain was exaggerated, “all in my head,” or that I was focusing too much on it and making it worse. Therapists told me my pain was psychosomatic. I wasn’t given the space or encouragement to process or discuss my grief, fear, or trauma around living in chronic pain and having it untreated and dismissed. Trying to ignore the pain didn’t stop it. I always knew there was something medical going on. I told them that I was suffering. It didn’t matter. They still thought they could convince me my pain wasn’t real, or that I was choosing to suffer from it even if it was real. That didn’t help, and they were wrong.

CBT as a modality is based around gaslighting. It’s all about telling a patient that the world is safe, bad feelings are temporary, and that pain (emotional or physical) is a “faulty or unhelpful” distortion of thinking. That’s literally in CBT’s definition on the APA website. But how do they determine that someone’s thinking is “faulty or unhelpful”? From the first session, therapists told me my way of thinking was the problem, not the medical conditions I couldn’t control or things like systemic injustices, financial struggles, trauma, and discrimination. And that’s a big problem with CBT. When therapists look at patients through the lens of patients’ thinking being faulty or distorted, not the larger issues impacting their lives, therapists miss those larger issues and the patient is invalidated and harmed even further.

[Maybe some people find CBT helpful] but what happens in CBT when your thinking is not actually distorted? When you’re someone who has chronic pain, chronic illness, and disability? Someone dealing with systemic and societal issues that are very real and harmful? Someone dealing with trauma, PTSD, or currently being abused? Someone living in a global pandemic that’s disabling and killing millions of people? I believe CBT is built to be dismissive and invalidating. And that’s what was done to me for so long that even I wondered at times if maybe I was causing my own pain, that if I “fixed” my thinking and could stop being anxious, my pain would get better. But two decades of therapy only made me feel more lost and confused, and the pain only got worse. I lost so much time focusing on therapy that I could have been seeing the right specialists and doing preventative treatments that might have stopped my illnesses from progressing the way they have.

 

Emotions and pain can be connected. Did any other type of therapy help? 

Chronic pain can cause depression, anxiety, grief, and trauma. That’s been studied and proven. It’s terrifying to be in pain that limits you, impacts your life and relationships, that you don’t understand and have no control over, and that the world and medical establishment routinely dismiss, misdiagnose, and don’t treat properly. Chronic pain can also make it much more difficult to work and survive. Contrary to popular belief, our disability benefits system is deeply ableist, punishing, intentionally hard to access and receive, [and enforces poverty].

Even some of the better-seeming doctors promote modalities like CBT, mindfulness, meditation, and biofeedback as first-line treatments. Those things have never helped my chronic pain. My guess is because it’s physical and structural, so at best those things could calm me down temporarily, but all those feelings come right back because the pain never stops, I’m being continually traumatized and mistreated, and I live in survival mode all the time.

It’s been a long time since I found any mode of therapy helpful. ACT [acceptance and commitment therapy] had its moments because it was about coping, finding whatever power and agency I could in any given moment or situation, but I still found that limiting because truly accepting chronic pain doesn’t feel possible to me. The anger, fear, grief, and depression always come back because the pain, the source of those feelings, never stops. Sometimes it can just be nice to talk to someone, but I’ve also had problematic and traumatic therapy experiences even with therapists who say they specialize in chronic illness. Sometimes they can still be ableist, tell me I’m “catastrophizing,” and make the same mistakes. Many of them also practice CBT and seem to fall back into it with me when they feel stuck or overwhelmed by my situation. 

I’ve been unable to successfully do trauma work because therapists tell me we can’t work on past traumas while I’m living in trauma. The chronic pain ensures I’m always in some kind of trauma or survival situation, so I don’t know if or when real trauma work will be possible. My trust in therapy is very limited at this point. I believe much of it has been harmful and I’m not sure there’s a current modality that is truly helpful or validating for people experiencing chronic pain, disability, oppression, and/or active trauma.

 

On Twitter, you wrote that CBT can be like toxic positivity. Say more. Is it ever helpful for patients?

CBT is based on the premise that any patient coming into therapy is experiencing distorted, “faulty,” “catastrophizing” thinking. CBT therapists are trained to convince patients that they’re overreacting and that they’ll feel better when they realize they’re overreacting. They believe patients will realize that the world is actually safe (or at least safer than they think it is) and that emotions are based on unjustified fears and misinterpretations. Except that isn’t true. I can’t say I know anyone that’s true for. And it very much blames the victim, the patient. It tells them the problem is their way of processing pain and trauma, not whatever is actually causing it. With chronic pain, the problem can be physical, worsened by the neglect of the medical system. I can’t wish that away. I can’t convince myself I’m not in pain that exists and is being neglected. It’s not true. And it’s harmful to tell me that’s how I’ll get better when it’s not.

Also, CBT practitioners seem to work off an assumption that patients will feel better if they refocus their attention to distractions. I can’t tell you how many therapists told me to just go out, make new friends, join a club, even giving me worksheets to schedule and report those kinds of activities. None of that helped me. First of all, it was hard to go out and make friends when I was living in chronic pain. It also felt so dismissive to be told the solution was just to distract myself and pretend everything was fine when I had real, physical pain and trauma going on that wasn’t being properly addressed.

I believe the way CBT is  prescribed and enacted for people in chronic pain is certainly harmful and inappropriate. [It has been useless to me and many other chronic pain patients.]

 

Is there anything that’s worked for you when it comes to dealing with your chronic pain? 

I find it helpful to connect with people in the chronic illness and disability community, which is the only place I truly feel seen or understood. I believe that proper medical care and medication would greatly improve my quality of life. I feel I’ve been denied appropriate care and still to this day have no idea how to access it or if it even exists. If practitioners started listening to disabled and chronically ill people, stopped falling back on harmful and outdated modalities, and actually researched these so-called “rare” and complex conditions that so many of us are dealing with, maybe things could start to change. Therapists could be an asset to the process, a resource for coping with the depression, anxiety, grief, and trauma caused by living with chronic pain and in this society as a person with chronic pain. But with the current modalities being taught and promoted, many therapists are doing more harm than good. I want there to be more awareness and research around new modalities that have the ability to acknowledge pain and oppression without making someone feel invalidated. I think therapy might have really helped me if it had been more validating and supportive instead of gaslighting and dismissive.

And it’s important to note that my experience is far from unique. Most of my chronically ill friends have experienced similar things from the medical system and with therapy. That’s one of the most helpful things that came out of me connecting with the chronic illness community. Realizing I wasn’t doing anything wrong. It’s a systemic issue, not a personal failure to find the right doctors or express my symptoms correctly. 

 

Have you ever worked with a pain coach?

I’ve never heard of a pain coach, but from what I’m seeing via Google it looks a lot like CBT to me, except with even less training or oversight. I’m seeing phrases like “creating harmony,” “triumph over pain,” and “focusing on strengths” on coach websites. It looks like a form of life/wellness coaching? The websites seem scammy and ableist. Maybe there are good pain coaches out there, but I can’t tell that from what I’m seeing, and I’ve never seen anyone in the disability community recommend them. So, I can’t speak to it formally, but my guess would be that this is not a non-harmful or trauma/disability-informed method of treatment, at least not overall. I would caution against recommending something like that in lieu of CBT, and certainly not without the input of folks with lived experience of disability who have done it.

What I will personally recommend are patient advocates and organizations for specific conditions [like Suffering the Silence and Hyp-Access]. I’ve also found chronic illness support groups to be invaluable. The better organizations have doctor recommendations or lists. You can also often find patient advocates who offer care consults. They can point you to resources, doctors, treatment ideas, etc. They can also provide much-needed empathy and support on a personal level, especially if they have the conditions too. I’m working with one right now, and I’m also in a couple of virtual chronic illness support groups.

 

If you’re comfortable sharing, what are your diagnoses?

I’m still trying to get a full diagnostic picture. A headache specialist recently told me that I’ve had chronic migraine since childhood (which was misdiagnosed and untreated), and that explains a lot of my symptoms back then. A larger underlying issue causing a lot of my symptoms is hypermobile Ehlers-Danlos Syndrome (hEDS). It’s a hereditary connective tissue disorder that can cause severe chronic pain and many comorbidities. I finally got diagnosed with it this year. It’s likely the underlying cause of my chronic pain, fatigue, and dysautonomia.

Very few doctors treat these conditions despite the fact that they’re not actually that rare and often turn out to be underlying causes of many of us who are chronically ill. There are some treatment options but no cures, and more research and specialists are desperately needed. [And people should also know not having a diagnosis does not mean the pain or chronic illness is any less valid. Having a diagnosis is a privilege that gatekeeps access to care and legitimacy in the eyes of the medical industrial complex.]

I asked the reporter to tell their editors that what they did with this piece is unethical and unacceptable. I also told them that the disability community will continue to fight to have our perspectives featured in these conversations. Our lived experience matters, and it makes no sense not to include us in discussions and evaluations about the care and treatments we receive. Erasing us is an intentional act of harm and neglect that won’t go unchallenged.

 

*The interview questions have been paraphrased. Brackets are around content added later for clarity.

 

ABOUT

 

Alana Saltz is a disabled writer and activist. She’s the editor-in-chief of Blanket Sea, a magazine and small press showcasing work by chronically ill, neurodivergent, and disabled creators. Her essays have appeared in The Washington Post, The LA Times, HuffPost, Bustle, and more. She’s the author of three poetry chapbooks. Visit her website at alanasaltz.com and follow her on social media @alanasaltz.

 

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