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Salon
Salon
Science
Mary Elizabeth Williams

The untold story of chronic pain

Conceptual, man in pain, mental and physical Getty Images/solarseven

"One evening in the middle of a bench press, I heard a loud click in my back," author and physician Haider Warraich recalls in his new book "The Song of Our Scars: The Untold Story of Pain." And this, he writes, "was the day that pain became part of my life."

Warraich's experience should be familiar to millions. The CDC estimates that one in five American adults is living with chronic pain. Many more of us will experience it at some point in our lives. Chronic pain is an exceedingly common experience, and one that is perhaps under-discussed in media and literature despite its prevalence.

As with many others, chronic pain reconfigured Warraich's entire world. It changed him personally and professionally. And it made him understand that, as he puts it, the ways in which doctors are generally trained to understand pain are not the same ways that many of us experience it.

His new book, "The Song of Our Scars," is an intimate account of Warraich's chronic pain, but it's also an exploration of the nature of pain itself. In it, Warraich unpacks the politics and privileges of pain and its management, the stigmas of suffering — and the brutal toll of the opioid epidemic. Yet this is also an unquestionably hopeful work as well, one that offers insight into promising new research on what does work for the millions of us living every day with pain.

Warraich spoke to Salon recently via Zoom about what we need to know about the power of pain, and why easing our minds is a crucial component of healing our bodies. 

This conversation has been edited and condensed for clarity.


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Before we can even get into how we treat it, we need to understand what pain is, what types of pain there are, and the difference between acute and chronic pain. Asking as a layperson, what is pain?

If you take the formal definition of pain — and the reason pain needs a formal definition just goes to show how complex it is — that definition is, an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage. This is a definition that was initially first devised in the 1970's and was just revised in 2020. Even in those words, you can start to see that there's a sensory component, but there's also an emotional component. It can be associated with actual tissue damage, but it doesn't have to be. What I tried to do in the book is actually open it up even more.

"What we've seen during the pandemic is that not only has the pandemic caused a lot of stress on our minds, but that has led to more people experiencing pain and in new and unpredictable ways than they ever had before."

Medicine has tried to constrain pain, has tried to narrow its definition, to serve its own tools, which are procedures and prescriptions, rather than embrace the complexity of pain as not just something that you feel in your body, but is affected by forces like politics, like racism, like sexism, like imperialism. They all come and inform what you feel when you hit your head in that glass door or get that needle pinching your shoulder. From a biological perspective, pain spans so many different phenomena. It is as much an emotion as it is a physical sensation. It is as much a memory that's ricocheting in our head, especially when it becomes chronic pain, as it is something that is happening in that moment.

Pain is complex, for sure. If we are going to help people in pain, we have to embrace the complexity, we have to embrace the nuance. We can't run away from it. We can't oversimplify pain because we already tried that, and it didn't work.

I wish so much that more people understood that pain is physical and emotional.

The people who understand it best are people who live with pain. They understand how you feel in your mind and what your mood is with what your body experiences as well. Certainly, what we've seen during the pandemic is that not only has the pandemic caused a lot of stress on our minds, but that has led to more people experiencing pain and in new and unpredictable ways than they ever had before. I can certainly say for myself that my pain was under pretty good control for a long time. I take care of my back. It takes work and it needs me to be extremely cautious, but I had felt like I had a routine. Then during the pandemic, ironically, while I was writing this book, all sorts of aches and pains came back that didn't really have any type of classical, biological, unifying mechanism.

RELATED: The pain gap: Women (still) aren't taken seriously by doctors — and it's killing us

I had shingles, which is a very painful condition, and one of the biggest triggers for shingles is actually stress. People don't understand that or don't want to make that link too obvious is because they worry that then, people in pain are going to face the same type of stigma that people with mental health conditions do. They worry that medicine just doesn't care enough about subjective symptoms, that in some ways in medicine, "subjective" has become a dirty word. What that implies is that somehow, that sensation, that subjectivity, doesn't have the same type of legitimacy as something objective does. That definition is based on the limits of our tools. If something fits our tools or something can be detected using our current technologies, then it's instantly objective. It says nothing about what you feel. It says more about what our instruments are and how we choose to see, or how we can see and study people when they come to seek medical care.

This is personal for you. You talk about how invisible wellness is, how invisible your back was until it wasn't. We don't as a culture, think about pain because we don't want to think about it. 

Initially, I wanted to speak to athletes, specifically marathon runners, because if you're running a marathon, you are experiencing a lot of pain. I wanted to see what can we learn from athletes, and use that to help people in pain. I realized that we have very little to learn from athletes, because they're always in control of their pain. They can always stop running. They always know why they're in pain, because they're running and they're using their body. Their pain has meaning, and it has an endpoint.

"Chronic pain is where nuance goes to die in medicine."

None of those things exist for many people in chronic pain. They're not in control of their symptoms. They can't just make it go away. They can't see a time horizon or an off-ramp in the future. Many times, their illnesses are invisible and can always be questioned or contested, not just by their peers, their family members, or their friends, but also by the clinicians that they go to for help. That's why I dedicated so much time to help people understand the experience of someone with chronic pain, because, unfortunately, the people who care most about chronic pain, many of the researchers are actually people who've lived with it themselves.

I don't think that's a sustainable way of expanding how much empathy we can have for people, because we should not have an expectation that the only time that you should be able to understand something is by living through it yourself. This is why it's my most personal book. I've never really written about myself. I wanted folks to get to know me and get to live in that hurting body, but also that of many of the other folks I talked to. The first thing is we need more empathy, we need more understanding. From what I see, the reason we fail to treat chronic pain and patient with chronic pain well is really because of a failure of empathy.

You describe pain as sort of modern day leprosy. People don't have a lot of patience, because it's "inconvenient" to others in a sustained way. Tell me what you discovered about the evolution of how we manage pain and where we are now.

Chronic pain is where nuance goes to die in medicine. Just take the example of something like labor pain. Treating the pain of labor was a criminal offense in Europe for most of history. Then, we had these movements in which women were over-medicated with dangerous medications, which had dangerous consequences. Then, the pendulum swung back again when we went towards the home-birth movement, which is good for other reasons, but many women experience a lot of pain during that process. You can see the same story play out with opioids and making the same mistakes that we made in the 1990's, by over-medicating people, not doing the proper studies, not thinking about harms.

When the harms became unignorable, when one in 200 Americans became addicted to opioids, we shut everything down. Then, you went to a state where you could have metastatic cancer in the hospital, suffering uncontrollably, and no one would bat an eye because we had shut the door on a therapy that does work for many patients, especially people who are at end of life, especially who are in acute pain. The whole story starts again in the 1990s with OxyContin coming in. Blame it on our short memory. That's another reason why studying history and medical history is so important is because we forget the lessons that we should have learned from previous mistakes. I hope that that's not something we're going to do in the future. I hope that now that again we are in that phase where many people realize that opioids are not just dangerous, but for most people, they're actually fairly ineffective for chronic pain as well.

Most studies suggest that with chronic use, opioids provide no benefit. If anything, the best studies show that people have more pain after they've been on opioids. What we've seen is that many patients who are on opioids are being asked to stop them immediately, oftentimes without physician sitting down with them, talking to them, talking through the harms, talking about, "What happens if the pain gets worse? What happens if I have withdrawal? What happens if I need help? What are other alternatives I might have to help me live with my pain?" even if we want to reduce the amount of opioids we have. That's really where I think the need to be kind, be empathetic, but also be innovative and use all the tools that we do know work for patients with chronic pain, rather than just cutting people off of opioids and just telling them to deal with it.

This is the frustration a lot of us in the patient world have felt, where it's either, "Here's a giant jar of opioids," or "Don't do anything." This idea of living with management, and having that conversation, we're not doing. So what can we do? What are some of the promising things for people who live with chronic pain?

The one thing that I've learned and that people I've spoken to, who are experts in the field as well, say is that there's no magic bullet for pain. There's never going to be this one thing that will help everyone the same way. What really everyone needs access to is interdisciplinary pain management. Pain management started with the idea that if you are a person in pain, you will go to a center where you'll not just be seen by an anesthesiologist, or a surgeon, or an exercise therapist, or a psychotherapist, or acupuncturist, or a hypnotist, you'll basically have a team approach, or that your case is going to be presented to all these experts.

Then, you'll have a tailored approach to the interventions that you might benefit from. Among the most promising interventions, one is exercise. The reason exercise can be tough for many patients in chronic pain, and I've lived through this, is that when you first exercise, it really hurts. Immediately, you worry, "Am I making things worse? Is this exercise really helping or is it hurting more?" There's very obvious reticence that many patients with chronic pain have towards exercise.With chronic pain, once you have pain, you have this fear of movement.

So, you limit your movement. Your life becomes narrow, and your body also starts to get deconditioned. You're not even as strong as you used to be. Not only are you in pain, but you're also weaker and in pain. When you do try and exercise, not only does it hurt more, but you are not able to do much either. Early exercise is really important, but we have created a health system where getting a prescription is faster and doing a procedure pays physicians more. And exercise can be expensive and time consuming, and at times, not covered by insurance.

The opportunity for innovation is very clear. There's a lot more internet-based online programs that can guide people through exercises while they're in the comfort of their home without having to leave or to go to rehab, which many people are still not comfortable doing. We're still in the middle of the pandemic. I think the need to incorporate exercise, and to innovate, and think about, "How can we make this easier? How can we make this more accessible for patients?" 

One of the most promising therapies is something called acceptance and commitment therapy, which is a form of cognitive therapy. As soon as you say that, a lot of people might feel taken aback because they're like, "My pain is a physical condition. Why are we thinking about a mental health intervention for pain?" One of the main messages of the book is that this idea that the mind and the body are these two separate things that don't affect each other, and that can function independently of each other is just not true at all. That is really something we have to push back against.

A lot of people feel that, "Does it just mean I have to accept my pain and live with it?" Many people think that the term "acceptance" means resignation. It really doesn't. Acceptance therapy tries to shift people's focus away from trying to control the pain at all time, to living their life as well as they can, despite the pain, even if it means that you might hurt a bit doing things.

When I was in pain, I still remember my friends were all going for to the beach. I had been stuck in my room for a long time. A lot of it was because just getting out just hurt so much. Nothing scared me more than a flight of stairs. Being stuck in a car for an hour just felt like torture. I decided to go, and it was extremely painful. Everyone else around me was young and perfect. They didn't know what it meant to live in so much pain, especially if you looked fine. But it was totally worth it, because it gave me so much hope that parts of my life that I really missed and loved were still there. I could access them even if they were not in the same way that I was able to do so before, even if the experience was, at times, agonizing. That memory and that experience, those are the things I had to do to begin healing and trying to reintegrate myself in the world.

The big thing we need to do is we need to remove trauma. We need to remove the stigma associated with seeking that care. We need to expand how physicians think about this. I talk about this with patients all the time. I talk to them about being referred to pain psychologists. I explain to them what are the things that they could offer and how they could help them live better despite their pain. I've seen a lot of openness, because when you have chronic pain, you just want to get better. Yes, you might be worried about stigma. You might be worried about people feeling like, "This pain is all in your head," et cetera, but in the end, what you just want is you want to get better.

I think that it is one of the best studied interventions we have out there for patients with chronic pain. One of my favorite studies that I cited was this trial in which they trained physical therapists in acceptance therapy. These people are not psychotherapists, but now they had learned these principles of acceptance that while they were working with their patients. They could say a few things or could incorporate that into the work that they were doing. The patients who work with these therapists who were also providing sort of acceptance therapy did so much better, and they actually needed less sessions to get to an even higher level of function.

I would say that those two are probably the therapies, exercise and acceptance therapy, that I feel like have the best evidence that are safest and that really can be incorporated into any patient who has chronic pain in life, because they have so much to offer.

And this perspective is coming from someone who's walked in those difficult shoes.

I think about, "Would I have been able to write this book if I didn't have pain?" It's unfortunate, but I don't think I would've been able to. Part of it is, when you have pain, one of the things that pain does is that it tells you that what you feel, only you feel, and that no one else feels what you are going through. It has this essentializing force that really centers you on yourself, and in some ways, detaches you from other people. I want to counter that message. I think one of the key features of pain is it lives to be communicated.

We have pain behaviors that are so consistent across species, because that's one of the key functions of pain. If you are a bear who gets stuck in a bear trap, the reason you'll start to thrash around and yell, and scream is so that the other bears know that, "There's a bear trap. Be careful," or "Come help me because I'm in so much pain." I wanted to write this as a way of reaching out to other folks so that they can feel seen in my story, but also in the stories of others that I talked to, and know that pain is in fact far from something that isolates us. It connects us because so many of us experience it, and live with it, and suffer from it, sometimes in ways that are unique to us, but often there's a common thread that runs through almost everyone as life who lives with pain.

I really wanted to counter that narrative. The only way I feel like I would be able to do that was the fact that I had gotten hurt myself. It's a hopeful arc because when I got hurt, I thought that that was the worst day of my life. It really, in many ways, was. But to be able to get something good out of it, this book, to be able to turn that experience into something that hopefully others can learn from, is it is one of the most hopeful things that I have ever done or shared. I hope that others will also take that away from this, because I didn't even think I would become a physician. I actually think I became a better physician because I became more empathetic, because I understood just how invisible illness and disability can be.

More on the science of pain: 

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