For this week’s episode, Rebecca sat down with Kate Nicholson, a dear friend and colleague and a policy advocate who’s been leading the charge when it comes to fighting on behalf of people who live with chronic pain. Today she serves as the founder and executive director of the National Pain Advocacy Center. They talk about what it’s like to live with chronic pain; Kate’s path to founding NPAC; the double-edged sword of crackdowns on access to opioids in recent years; how the COVID pandemic has expanded the chronic pain community; why Kate’s work has focused so heavily on storytelling; how spiritual care is core to her self-care; why it’s time to update the archetype of lawyer in the midst of a global paradigm shift; and lots more.
Links from this episode:
- Follow Kate on Twitter @speakingabtpain; follow NPAC at @national_pain; learn more about NPAC’s work; and subscribe to their newsletter
- September is Pain Awareness Month—join the conversation and share your story using #RealPainStories
- Nominate the changemakers you most want to hear from by emailing us at [email protected]
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, a podcast about the fight for economic liberation and what it will take to set us all free, powered by The Century Foundation. I’m Rebecca Vallas, and every week I go behind the music with visionary leaders and lightworkers working to reshape America’s off-kilter economy into one where everyone can thrive and access the shared abundance we all deserve. I think of it kind of like a weekly trip to the Marvel Universe, except the superheroes I get to talk with every week work with law and policy.
And for this week’s episode, I am so, so, so incredibly excited to sit back down with a really dear friend and a colleague who has been leading the charge when it comes to fighting on behalf of people who live with chronic pain. And that’s Kate Nicholson. She’s the founder and executive director of an organization called the National Pain Advocacy Center. And I had the pleasure of getting to meet her several years ago and always enjoy our conversations off the air, so I’m really excited to have her back on Off-Kilter for the first time in several years. You can find lots more about her work and the National Pain Advocacy Center’s work in our show notes. But Kate, welcome back to Off-Kilter!
KATE NICHOLSON: Thank you. It’s such a pleasure to be here talking to you.
VALLAS: It’s so fun to get to see you. And I know we’re gonna get to talk a little more off the air, too. We have a lot to catch up about. But you have been busy! I am so excited to talk about so much of your amazing work and how NPAC has grown. But before we get into all of that, I wanna give you the chance, as I always do with guests on Off-Kilter, to reintroduce yourself to our listeners and to share a little bit about how you come to social justice work, and in particular how you come to disability rights and justice work.
NICHOLSON: Sure. So, I basically always wanted to be a civil rights attorney. I grew up in small and often poverty-ridden sort of cow towns and saw a lot of injustice and how random and unfair it was that so many of my friends were treated unequally, whether it was based on race or income and things like that, at a fairly impressionable age. So, that inspired me to wanna make some changes. So, I went to law school, and when I graduated, my top-choice job was to work for the Civil Rights Division at DOJ. And so, I applied and was accepted there. And that’s something you apply to the whole division, but the ADA had recently become newly effective, which had just been passed. And so, I graduated from law school in 1992 and clerked for a federal judge in 1993, but the regulations were just going into effect. I had experienced pain by that point, I have a brother with mental illness, so I’ve always been interested in disability from a personal perspective. I also, during law school worked for Chai Feldblum, who was one of the ADA’s authors, in one of the summers when she was at the ACLU. And so, I asked to be placed in the office to then enforce the Americans with Disabilities Act. And fortunately, I was. Which ended up being really fortuitous for me, not just in terms of what I cared about advocating for, but also because I pretty quickly became significantly disabled myself. I had a surgical injury to the nerve plexus leading into my spinal cord and was unable to, largely unable to, sit, stand, or walk for about 20 years. And so, I was also in probably one of the only places in the country that would accommodate me and allow me to continue to work and function in those circumstances. So, that was really fortunate for me.
VALLAS: It’s an amazing community to get to have that be your entry point to actually start your career getting to enforce the newly passed ADA. I mean, what an extraordinary thing. I have so much love for Chai. She’s been on this show several times. I love her so much, and I don’t think I knew that piece that you got to work directly with her. That’s extraordinary.
Kate, we’re gonna dig into so many different threads of your work, but you’ve worn a lot of hats over the years. And I mentioned up top today the main hat that you’re wearing in this work is running an organization that you started several years ago, but which is still actually kind of in its first chapter. It’s still a relatively new organization. It’s called the National Pain Advocacy Center. And if I’m remembering correctly, although, you know in COVID era, what is time anymore? It’s a flat circle, right? I think the last time we talked, I was—I mean for the podcast, anyway. We talk plenty off the air—was when I was still at the Center for American Progress and was doing the show there. And this was right around the time where the national conversation around opioids and what is often called the “opioid epidemic” was really getting kind of into full swing. And you, and this is really how I met you was, you were one of the first advocates and really one of the first people to sound the alarm as I think of it then about the perspective of people who live with chronic pain, right? It was a very one-sided conversation for some time where it was like, “Oh my God. The opioid epidemic. What do we do?” And yes, a big piece of that conversation is and rightly should be about substance misuse, and what do we do about people getting hooked on opioids without meaning to. But there are also a lot of folks with chronic pain for whom opioids are really, really critical to their quality of life. And you just alluded to some of your own personal experience with this. That’s some of what we’re gonna get into as well.
So, I’m gonna assume that folks who are listening are probably very familiar with one side of the opioid conversation, that side about it as an epidemic and something to do with addiction. But I would love to, as we start this conversation and lay a little bit of the foundation from where NPAC came from and some of the work that you have really led over the years, I would love to give you the chance to talk a little bit about what you have sometimes called, and what you certainly were calling back in the 2010s, “the other side of the opioid epidemic.” And so, where do you wanna get started with that?
NICHOLSON: Sure. It’s a big question, but I would say that there isn’t, it isn’t really even an either/or in terms of I’ve become a big harm reduction activist as well. And my view is that pretty much everyone is worse off today based on our policy choices. As we’ve cut the medical supply of opioids, overdoses have escalated exponentially, driven by a dangerous street market. So, we’re really not protecting people who are most vulnerable to overdose, who either have addiction or are just using drugs, experimenting or whatever. They’re much less worse off today. And people with pain, we now have, you know, when I first started talking about it, people said, “Oh, this isn’t really happening. You’re a story of one.” And I’ll tell you in just a second a bit about my story. But we now have about dozens of studies showing that taking people who’ve been stable on opioids off of them actually increases their risk of overdose and suicide by three to five times. It usually results in a need for emergency medical care and hospitalization. It destabilizes people’s health, mental health, and lives. It breaks down healthcare relationships. And we’ve now gotten to a point where more than half of the primary care clinics in America will refuse to treat someone, take on a patient who has been prescribed opioids to manage pain. So, there have been a lot of reactive policy choices, and the idea was if we took everybody off of their opioids, they’d be safer. But that has not proven true.
And so, and some people, you know, there are many people with pain whose pain can be managed without opioids. But there are certainly some who absolutely require them and use them appropriately and safely. That doesn’t mean that they won’t become dependent, physically dependent on a medication, which is part of the problem with ripping people off of them. But there are also people with substance use disorder who use opioids appropriately. It’s called medication for opioid use disorder, and it’s people use buprenorphine, which is an opioid, to manage an addiction. And that is not addiction either, right? That is, they may become dependent on it, but, so there are appropriate uses and important uses for these medications.
VALLAS: So, let’s back up a little bit and talk a little bit about what does it mean to live with chronic pain? And this is something you have some substantial lived experience with, you also have substantial professional and policy experience with. You’ve really become one of the nation’s leading experts on this subject and what it means to bring a chronic pain perspective into healthcare decisions, pharmaceutical decisions, policy decisions of all stripes. You started to allude to a few of them. But why don’t we back up a little bit, and let’s ground this conversation in what does it mean to live with chronic pain, and who are the people we’re talking about, and how does your own experience factor in?
NICHOLSON: Sure. So, a lot of people don’t understand that there’s a difference between acute pain that everyone experiences, like if you break a leg or if you have surgery, and that that function of pain is actually really important. It’s adaptive. It helps us know to get medical care or rest, right? And people who actually have a rare genetic condition that makes them unable to experience pain often don’t live very long. So, it is true that pain is a normal bodily function. The problem is when pain becomes chronic, it begins to function more like a disease, and it actually damages every body system if it isn’t well managed. And it significantly impairs people’s lives, and so the quality of their lives. I mean it is, there are lots of definitions of disability. It is considered in the public health sphere the single largest cause of adult disability, both globally and in the U.S., and that’s long-term disability. So, it can significantly impair someone’s ability to engage in basic life activities, to hold their children, to cook dinner, or to work. And so, those are things that I don’t think a lot of people really understand. I mean, chronic pain is a big category. It’s a huge sort of envelope. And so, there are people who have more mild versions of chronic pain. That means they’re still in pain all the time, which is challenging. But there are also a fair number of people, about 20 million, who have severe chronic pain, pain that regularly impedes their ability to do these basic life activities and function. And so, people are basically shut out of their ability to live a full life.
VALLAS: Do you feel comfortable talking a little bit about your own experience with chronic pain and some of how that informed this becoming really a big part of your life’s work?
NICHOLSON: Absolutely. So, I had sort of sudden onset chronic pain that was eventually diagnosed, as I mentioned earlier, as related to a surgical injury I’d had. And it absolutely, it changed my life. I mean, I was running in the mountains, literally running up mountain trails the morning the pain began. And by the afternoon, I had to go into the office to finish a brief that was due to court. My back started to burn really badly. It felt like acid was eating away at my spine. And then an invisible corset wrapped around my waist, and I couldn’t breathe. And pretty quickly, electrical sensations sort of shot into my legs, and my muscles seized in response. And so, I ended up sort of convulsing and falling onto the floor. And after that, I really was largely unable to sit, stand, or walk. And so, because I couldn’t sit, I couldn’t benefit from use of a wheelchair. I often had to be carried from place to place. Sometimes I could walk a few feet with a mobility aid. But it really changed my life very profoundly.
Luckily, as I said, I was in a place that accommodated my ability to work while lying down and sort of modified my job so that I was arguing in federal court from a folding reclining lawn chair near D.C. because I couldn’t travel, and so I was still able to work. But it certainly changed my ability to go through the world and eventually my ability to be in my marriage, my ability to have children. Lots of things sort of went by the way in the course of that long struggle with pain. And part of the reason I came into the opioid conversation is because I did use opioids to manage my pain and continue to work. And we tried everything else for several years. Once they figured out what was wrong, they did a surgery and tried to repair it, but that didn’t work. And at that point they basically said, “I don’t have anything else to offer you. You need to consider taking opioids.” And I did. And they helped me continue to work and function.
And then many years later, I had what ended up having to be a series of surgeries that restored my mobility. But after the first surgery, which was kind of a repeat of what had happened in the early ‘90s, but surgical techniques had improved, and they were actually able to really help me. I had moved to Colorado to focus on rehabilitation ‘cause you need to do a lot of that if you’ve been basically reclined for two decades. And I went into the doctor’s office one day, this was in 2015, and my doctor said, “I’m gonna stop prescribing opioids to all my patients effective immediately.” And I was already going down on the medication and doing better ‘cause I’d had the surgery. And I knew that stopping abruptly was dangerous. And it was scary to me because it was the first time in all these years I’d worked to get better I was afraid it would really derail my progress. But luckily for me, I had a prior treatment team in D.C. that gave me an appropriate tapering plan, and as I said, I was already going down on the medication anyway, so nothing really happened to me.
But then I started, in 2016 after the Centers for Disease Control and Prevention issued a guideline for prescribing opioids that was widely misapplied by policymakers, I started hearing through the disability community of a lot of people experiencing the same problem: being dropped in care, being suddenly tapered. And so, I had just gotten back from the second surgery that I needed because after I was up and around for a couple of years, because my spine, because of the erosion in my spine from all the inflammation, it collapsed. So, I had to have it rebuilt and with artificial parts, which I was able to have done. But right after that surgery, I decided to get up and start talking about this. So, I gave a TEDx Talk. I still had a full body brace under my dress, but nobody saw it. And then just started advocating, writing op eds and speaking about it. And I think that’s probably around when we spoke. And then over the years working on different policy initiatives and changes, I started to meet a lot of other people who were working in this area and decided that if we’re really gonna shift the conversation not just about opioids but about pain, that I needed to start an organization.
VALLAS: Thank you for sharing all of that and for sharing the personal side of this, because I feel like, at least as I understand your incredible work, your own experience is somewhat inseparable from what has made you one of the nation’s foremost leaders and experts on this subject. And it’s an amazing team you’ve pulled together. We actually recently had Dawn Gibson on this show, who’s on your board, right? So, I’m a huge fan of the amazing folks you’ve been pulling together.
But take us to present day a little bit. Tell a story about how you ended up actually starting the National Pain Advocacy Center, and that’ll allow us, I think, to talk a little bit more about some of the work that you’ve been doing.
NICHOLSON: Sure. So, I just pretty much decided that I’d worked on, there was a policy in Oregon where they were gonna force taper about 100,000 people off their medication with no safety protocols at all, so I worked on that. And there were several things that would come up. It was sort of like Whac-A-Mole in there’s days where one bad policy came after another. And I started to work with scientists and clinicians and other sort of engaged professionals who were seeing this problem, as well as with individuals’ lived experience of pain, and just decided that it made sense at a certain point to try and get some funding and start an organization. So, we launched fully in 2021, so it is still a pretty new organization. And we have a board that’s made primarily, made up primarily of people with lived experience of pain and a diverse group. And we have two councils. One is our Science and Policy Advisory Council that’s made up of scientists and clinicians and public health experts and policy experts and some people, some of whom have lived experience with pain too. So, it’s not a binary. Many of us [laughs] have disabilities as well as being professionals in this area. And then we have a large what we call our Community Leadership Council, which is our diverse group of people with lived experience of pain, variety of conditions, as well as people in recovery from addiction. Because again, because we sort of started through the lens of the opioid crisis, we really felt like it was important to have people with experience on both sides of this issue.
VALLAS: So, I love your sort of sharing the different components of the organization and how you’ve set it up and also just making that really important point, right? It’s not like you’ve got the people with disabilities and chronic pain over here and then the quote-unquote “experts” over here, right? The twain meet quite a lot, right?
VALLAS: And there’s lots of people who are in the middle of that Venn diagram, right? And you’ve been very intentional about how you’ve set this organization up that way. How is NPAC working to address the problem of chronic pain, and most importantly—maybe not most importantly, but a big part of that is—our policy responses to this, right? I mean, you’ve referenced a couple of times now that there’ve been chapters of Whac-A-Mole, right, bad policymaking that is, “Let’s just cut everyone off of access to opioids overnight. That should do it!” right? And it’s like, oops! Have you thought about the long-term consequences of this? Talk a little bit about how NPAC is approaching chronic pain. And obviously, opioids is part of that and that was maybe some of what instigated your coming onto the scene and realizing the need for this organization. But how is NPAC working to address chronic pain? How do you approach the way that you approach policy?
NICHOLSON: Yeah. So, we’re working on a lot of different levels in policy, and certainly some of the policies are opioid specific. I mean, I was on the CDC’s opioid work group to revise their guidelines. We just had a law passed in Colorado protecting people’s access to medication and care that was just signed by the governor. So, we still do work in the policy arena on the opioid question in particular, but we also take a broader approach. We just had three of our members appointed to the NIH committee that oversees all pain research, for example, and appointed because of their expertise in equity. So, I was appointed based on my disability background, Tamara Baker was appointed based on her background in race and pain, and Monica Mallampalli was appointed based on her background in sex, gender, gender identity, and pain. Because there are significant equity issues when it comes to pain, because it’s an invisible condition and not well understood and highly stigmatized condition.
All of the sort of social and structural barriers that exist in society come out in the experience of pain, because people’s testimony about what’s happening in their body has to be believed by providers. So, there are a lot of studies that show that providers will often rate the pain of people of color as being less severe than that of their white counterparts, and that’s just a history of race medicine. There’s a big, ugly history there. And that also, that the same people are less likely to receive medication even for acute care, even after surgery, even in cancer pain at the end of life, right? Or to receive a lower dose of medication. There’s a history of hysteria, believing that women are not testifying accurately about what’s going on in their bodies. And so, there’s a lot of gender bias and gender identity bias as falling, unfortunately, in the same category. And of course, we know there’s a lot of disability bias and misunderstanding of the quality of life that people with disabilities have and lots of barriers to access to care. And of course, at the intersection of these identities, those problems compound. And so, we’re working to also sort of change things in terms of pain research. So, a lot of, pain is our largest chronic health condition. It’s the most expensive chronic health condition. It’s the fastest growing chronic health condition. And part of that is related to COVID. So, but it’s sort of everywhere and nowhere at the same time, you know? Everyone seems to, it seems to be very prevalent and impactful, and yet medicine has been slow to really prioritize it and pay attention to it. It’s a little like a lot of mental illnesses have been historically, or depression. But so, being on this committee is good.
I also work, we’re working with the, Congress funded something called the HEAL Initiative® to deal with pain and addiction. And we’re working on helping translate some of the research that’s coming out of that to make it culturally competent. And we’re working on getting people on advisory councils with lived experience. I just worked on a big project with NIH and the European Union, the European Federation, actually. So, it includes countries including Russia, lots of countries. But there were basically no, for research, no common even domains for how, for every study. Like, if you’re looking at pain and you want to alleviate it, what are the important things you should look at? And there weren’t even those sorts of things. And so, I just worked with them on a project to come up with core domains for research, for acute, chronic, acute to chronic translation, and episodic pain, in which we got a very diverse group of people with lived experience involved whose votes on what mattered were weighted equally to those of scientists and clinicians. And so, it really is about trying to change the culture, the medical culture, as well as the narrative. And it has to do with sort of, I guess we call it a positive pain agenda. Like, one of the reasons we got into trouble with opioids to begin with was a one-size-fits-all idea that we needed to give them to everyone with chronic pain. And then we had the one-size-fits-all solution that we needed to take it away from everyone with chronic pain. And neither of those are really correct. So, our failure to focus in a positive way on investing in pain caused some of these problems.
Pain is really growing with the pandemic. It’s one of the chief symptoms of long COVID. So, we have these colliding crises, and what NPAC has tried to do is work with the media. We do a lot of speaking at provider conferences and things like that, work with NIH and research, work on Capitol Hill, work in the states to kind of address bad policies, but also promote positive policies and positive change. Because the bad policies are the Whac-A-Mole situation! It’s just they keep coming up! I mean, you can knock them down, and they’re important to address. But we’re trying to also have a bigger picture approach.
VALLAS: And I so appreciate you bringing in that, yes, it’s policy. There’s also culture, right?
VALLAS: And there’s also narrative. And we’re gonna get into, I think, both of those pieces, too. But just to stay with policy for a moment as we kind of finish this out, ‘cause I wanna give you a chance to, or I should say finish out just this portion of the conversation. We have a lot more we’re gonna talk about. But I wanna make sure that you get the chance to talk a little bit about what makes a good policy on this and what makes a bad policy. And you’ve highlighted a couple of consequences that can flow from bad policymaking. But when you go to conferences, and you’re talking to folks who have any level of say when it comes to the policy decisions that we’re making in this space, and a lot of them are actually at the state level, right? It’s not just like it’s, everyone always thinks about Congress. And yes, that’s some of it. But also, what we saw in the wake of awareness around opioids in the 2010s was actually just a wave of states starting to act as well.
VALLAS: So, would you maybe talk a little bit about what makes a bad policy, and in your opinion, what makes a good policy in this space?
NICHOLSON: Well, I think that part of what happened in this space, particularly related to opioids, is—and it’s intimately tied to the narrative, which I know we’ll get to in the next segment—but is that policymaking tends to happen in cycles. Policymakers don’t do anything for a long time, and suddenly there are enough stories that accumulate, and political pressure rises, and they react. And oftentimes, those reactions are quick and simplistic. And that’s really, again, what happened on sort of both sides of this pendulum swing. There was an awareness in the ‘90s that pain was a major public health issue. And so, the solution was, well, let’s just open this up and start prescribing opioids to everyone without enough of an evidence basis for doing it so broadly.
Now, again, most of the people who become addicted, there are flaws in the narrative that are important because people believe that everyone who became addicted was prescribed an opioid by a doctor. And that’s just not what the evidence shows. Some people did, and that’s important. But part of the problem is that the policies were based on a narrative in which pretty much everyone who was most at risk fell out. And so, the policies are really leaving out those most at risk pretty much across the board.
So, some of the policies that we’re still doing are just trying to correct bad things that are happening. The law in Colorado we just got passed is very simple. It’s just addressing a misapplication of dose guidance that came out of the CDC’s 2016 guideline and has led to clinics refusing to see people or fill prescriptions for people, particularly those using higher doses. And there is evidence that increasing dose can increase risks, but it’s just much more nuanced than that. And as I mentioned, there’s a lot of evidence that ripping people off is even, or even very slowly, is really risky as well. So, we addressed clinics, we addressed forced tapering, we addressed—which is taking people off in a nonconsensual way—we addressed people not being able to get their prescriptions filled at the pharmacy. So, that was a pretty short, a short law just kind of ticking off the big hits, right? So, sometimes that’s what you need if it’s a corrective policy or law. But generally speaking, I think what makes a good policy is nuance, is attention to nuance, right? And not seizing on these few concrete thresholds, which is what happened with the CDC’s guideline. There were numbers a few places, and everybody went and passed laws adopting the numbers just because that was simple and clear, and it seemed like an effective, quick solution. But it actually has probably caused more harm than good.
VALLAS: Some of the principles I feel like are flowing from some of what you’re saying, right? One size fits all? Bad. [laughs]
VALLAS: Right? Reactive policymaking bad.
VALLAS: And the counter examples being nuance and being thoughtful and proactive, right, as opposed to, “Oh my God, we’ve got bad press! We have to do something,” right? And I think those are, frankly, principles that could apply to any policymaking and not even just in the disability space. But I felt like that was worth sort of underscoring.
You started to go there, Kate, and so I wanna go there more fully because it’s sort of hard to talk about all of this without talking very specifically about narrative, which is also very connected to culture.
VALLAS: But a really big part of the work that you have done—and it’s been coming through as you’ve been talking about NPAC’s work—but a really big part of the work that you have done over the years on these issues has really been about telling stories. It’s been about telling your own story. It’s also been about telling other people’s stories and creating platforms for other people to tell their own stories and to have their stories heard so that the perspectives and experiences of people who live with chronic pain are actually brought to the fore as opposed to left out or not even really just left out, but like, this is one of those subjects where I think a lot of folks might not even know that that’s a missing piece of this larger conversation, which almost entirely is usually focused on the misuse piece and addiction. Why have you focused so much on storytelling? Why are narratives so important? And in your experience working on these issues, what do you see as the keys to effective storytelling when it comes to trying to shift a narrative that is maybe not untrue, but which is missing a whole set of perspectives that would make it much more nuanced and complete?
NICHOLSON: Yeah. So, that’s a big question. And the one thing I wanna start with before getting into it is the other piece that I meant to mention about policy, because it’s related to this. And that is policies need to have stakeholder engagement with the people most deeply affected, right? It’s the nothing about us without us thing from the disability community. But that is absolutely critical to creating good policy because then you know that people are not being left out. Then you are getting the diverse points of view. Then you’re hearing from people who are most deeply affected. But that’s also the reason that stories matter, right?
So, I would, when I first came into doing disability rights work, I started working really at the end of the height of the HIV and AIDS crisis. And one of my big cases was Abbott versus Bragdon, which was a, Bragdon versus Abbott, actually. I started as Abbott versus Bragdon, but at the Supreme Court level, it was Bragdon versus Abbott. But it was basically, we had to win the right to routine healthcare all the way to the Supreme Court for people with HIV and AIDS. And this was in the context of dental care, and that just came out of some bad media reporting and sensationalized storytelling. So, in the day, there were a number of reports of people who had gotten HIV from a dentist, from receiving dental care. And I don’t know if people are old enough, but Kimberly Bergalis was the person who was really sort of the individual who was focused on the most. And basically, it turned out that all of these people had gotten HIV from the same dentist. So, it’s not like it was happening all over the country people went in for routine dental care and were getting HIV. But it got a lot of media attention, of course, because these were sort of innocent people who had become infected with HIV just by wanting to get medical care.
But interestingly, there wasn’t, the investigations into it as to why it happened were inconclusive. Some people thought it was intentional to raise awareness about HIV. Who knows? I mean, it was, the CDC investigated and never really came to any conclusions. But basically, the science said there was not a risk with universal precautions of transmission. Nevertheless, all of these people started being dropped in care by their providers who were afraid that they would become infected. So, these are scientists, right? These are not people who don’t understand the science, who didn’t know this. But still, the power of that narrative was enough to have people engage in this self-protective behavior. And so, I’m just saying that. I know that was sort of a long story to lead into this, but it got my attention. It made me see what happens in public health crises, that the stories we tell inform the choices and often end up stigmatizing people who are at the center of these crises and leading to what they likely need most, which is access to healthcare itself.
And that really has been repeated in the opioid part of the chronic pain journey. So again, very simplistic story that has a lot of elements of truth. But we had a story with innocent victims and what an evil actor the Sacklers, and they are. You know, they’re scumbags. I’m not gonna say that they’re not. But the story was this bad pharmaceutical company duped all of these doctors who prescribed opiates to their patients, and they all became addicted and died. And that sort of is the main narrative that was told so many times that it became kind of conventional wisdom. And that is, you know….
There’s a journalist named Maia Szalavitz who writes about addiction for The New York Times, and she wrote this great article in 2018 called What the Media Gets Wrong About Opioids. And in it, she talks, she begins with these people who had had this whole bank of stories of people who had become addicted. But the only story that journalists were interested in was someone who became addicted if they were prescribed an opioid by a doctor, basically a teenager usually, white usually, and a high school cheerleader or a football player. That was kind of the story that people were interested in telling. And it wasn’t for a bad reason. It’s because we had moralized addiction for so many years. They wanted to find this innocent victim, sort of like these stories in HIV transmission, right? And because that would make people care. We should care about people becoming addicted regardless, right? But that was their motivation. But the problem is that is not most of who became addicted. I mean, the biggest problem with a really liberal prescribing was that there was a bigger supply of unused medication that then sort of fell into the hands of people who wanted to misuse it. So, it’s a much more complicated story than that.
And so, I think I became very interested in storytelling mostly as a counter-narrative because I saw what was going wrong with this narrative. And again, that everyone was being harmed, not helped by it. And then, but I also think as a lawyer—we’re gonna talk a little bit about lawyering later, too—you sort of learn to change things by telling stories. And I also just think people are not, people are moved by stories. People want to engage and engage empathy and compassion and understand and see something that they don’t see in their own lives ‘cause we all are limited to our experiences. And that that is the best way to open people’s minds, in my view. So, I mean, I just did a bunch of storytelling at the World Health Organization recently about why there’s this whole coding system for diagnosis for chronic pain. And I told personal stories about why the new codes were important. So, it’s not just, you know, it’s something that I use a lot and encourage people to tell their own stories where they’re comfortable, obviously, doing so. Because I think we saw with COVID people don’t really listen to statistics. That’s not, you know, and any op ed you ever read or any media story begins with a compelling story and then goes into the larger issues. So, I just think it’s the, one, it’s the way to effectively make change. Two, it can change people’s minds. And three, I’m a big believer in first-person narratives and in teaching people, to empowering people to tell their own story, teaching people how to get them published. Because I think people need to hear from the individuals most impacted themselves.
VALLAS: And that’s a big part of what you do behind the scenes as well, right, is actually to help teach other people how to tell stories because of the power, as you’ve been describing it. I feel like it gets attributed to a lot of different people, but the quote that was coming through as you were saying that is that humans are story beings.
VALLAS: It’s how we make sense of the world. Some people would say it’s what sets humans apart from the animals, right? It’s that we’re able to tell stories. And it gives us a way to understand and provide meaning to what’s going on. So, I love how you, I love that you told a story in answering the question about why stories matter! Because it actually made, I think, your point even more powerful, and you made the point by showing and telling at the same time. So, I love how you wove that in. And some of what was coming into my mind as you were telling the story of the importance of counter-narratives is, I mean, actually, it was a set of sort of I’m not gonna say that they weren’t true stories, but again, similar to yours, it was like this one story that becomes the story as opposed to that was one person’s experience, and now it becomes everyone’s understanding of it. It was one of those types of scenarios that actually got me to transition from becoming, from being a lawyer to being a person who does policy and comms and narrative and various and organizing other things in Washington. Because the Supplemental Security Income Program, SSI, was the subject of a whole media brouhaha. It has been many times over the years. But there was one in particular around 2010 where it was a very similar situation to what you said. And of course, then all of a sudden, policymakers, like folks in Congress are going, “We have to do something! Look at these media stories!” And it’s like, hey, folks. We need to think a little more than just, oh, let’s be reactive because of a narrative that’s going around. So, I really appreciate how you told that story in answering that question.
And just to stay with storytelling for just a minute. Kate, you’re actually in the process of writing a book about your own experience, but also about pain and everything in between. What has that process been like for you? You and I actually talked a little while back about the complexity of actually revisiting some of this terrain, which is what writing a book necessitates, right, is literally walking down memory lane. So, I’m genuinely curious to hear how has that been going, and how have you been taking care of yourself while you go through that process as well?
NICHOLSON: That’s a good question. So, unfortunately, I still don’t have as much time as I would like to be writing. And this is, it’s very tied into the self-care thing because I do work pretty much seven days a week doing this. It just keeps expanding, NPAC does, and some of the policy work, and I’m on the road a lot. So, I’m not spending as much time writing as I would like to be. So, that would be a self-care thing that I would like to make happen. But what that usually turns into is getting up at 4:30 in the morning [laughs] and writing for two hours before I start my day! So, that’s complicated.
But yeah, I mean, it’s interesting because writing a full book, the whole story, and weaving in some of these things we’re talking about, which is the reason for telling the story, I don’t think people will really sympathize with or understand chronic pain until they really see people’s experiences and feel it and see how limiting it is in every second of every day and in every aspect of life. And so, that’s my motivation for telling it. But also, it’s important to weave in and teach all of these things about the crises, because I do believe that we are at a point of colliding public health crises in which, as I mentioned, everyone most vulnerable seems to continually fall through the cracks. And so, I think it’s so important to address the bigger policy issues, too. But those are the easy parts.
It’s still very hard to tell a story, I think, a vulnerable one, for me. And it’s hard not to have it, I guess, retrigger, for lack of a better term, grief and all kinds of things. And it’s important to experience the grief, too. But I have told my story in short form many times. And of course, it was difficult the first time I told it, but I’m pretty used to it. But really digging in to the challenges, it’s hard. And I appreciate people who tell their story so beautifully, like Alice Wong does. I mean, I just read the most recent piece Alice did for Teen Vogue. It’s so good! And I really appreciate people who are powerful testifiers to their own experience. And I have had to be very conscientious about taking care of myself and tapping into my body as I’m writing and thinking about these things. Because the thing about trauma is that it, as we know, lodges in the body, right? The body keeps the score, and so it can be reawakened. But that’s also a beautiful part of the writing process, because even though some of these things come up in meditation and other practices, writing can bring them up as well. And a big part of one’s job, I think, is listening to those things and not trying to either disappear them or make them seem better than they are, but actually really engage with them.
VALLAS: Or push them back down, right?
NICHOLSON: Right, or push them back down for them to relodge. Yep! [laughs] Yeah.
VALLAS: I’ve heard, “Oh, don’t wanna see that again!” right?
VALLAS: It’s like that sort of choice, right? Well, I don’t love hearing that you’re getting up at 3:00 in the morning to write.
NICHOLSON: 4:30. 4:30! [laughs]
VALLAS: But I do like that you’re writing the book, so I have complicated feelings about what you just shared! But I feel like that actually takes us to the self-care place, so let’s go there. This is a commitment I’ve made, is to keep this as a permanent fixture of this show, even though we are no longer in the middle of our Self-Care Is Political Warfare series that we did earlier this year. We got so many notes from people saying like, “This is really important. Like, this is stuff that we need to hear from people,” that I decided to keep it in, in every episode. So, I do wanna make a little bit of space for it. You and I have had more conversations than I think I can count off the air about self-care, and as part of that, managing workaholic tendencies that you and I both relate to. And I just wanna say, as I have said to you in other spaces, but I will say it here too, I am so grateful, and I will be for the rest of this life for all of the support that you have provided to me on a human level and at a soul level on my own self-care journey. You know about, you know what I’m referring to on many different levels, and you’ve really, you’ve been there at a lot of different critical moments. And so, it’s actually very meaningful for me to get the opportunity to ask you in the context of this podcast how self-care shows up for you and what that journey has been like for you with the backdrop of everything that you’ve shared. And I’m hopeful that some of where this is gonna go, knowing some of the conversations we’ve had not recording, is how spiritual wellness actually fits into how you approach self-care.
NICHOLSON: Sure. And I also want to thank you because you have been a huge guide for me in personal self-care, but also the spiritual journey. So, I think that’s been really important for both of us. So, I approach self-care on a very, in some ways, on a very basic level. Like right now, and it changes over time, I do feel like my work is partly connected to my spiritual being and self-care in a way. I am a very purpose- and passion-motivated person, and I feel like I’m doing what I’m supposed to be doing. And I get a lot from that, so I don’t feel horrible about overworking, but I do take work too much. So, right now, just this year, at this moment, I have non-negotiables. And right now, my non-negotiables are exercise, getting enough sleep, and practicing meditate. Everything else unfortunately, that means my social life is suffering, and other things suffer because you can’t fit it all in, I think! But I think it shifts at different times.
I mean, one of the best things that has happened for me this year has been that for some reason I’ve been able to really start building some physical strength. In the past, I tried and then had setbacks, and there’ve been a lot of issues with that. But for some reason, things are going well. And so, I have really made that a priority ‘cause it is super important. Again, being bedridden that many years, there’s a lot of muscle loss and things. So, I’m really grateful for that, and I absolutely prioritize it and do rest. And meditation is just essential to my overall well-being, my spiritual practice, and my overall health. So, those are kind of the non-negotiables at the moment. But I also have kind of learned not to… Everybody has to find their own way to be balanced and to engage in self-care. And I feel like there are a lot of people I know who are just chill and Zen and balanced, and that’s their way all the time. And I so admire that, and I will never, ever be that! [laughs] It’s just not who I am. So, I kind of think of it as, I think of myself as like a grasshopper, right? I rest and I leap, and I rest and I leap. [laughs] And I find balances between the extremes. And that’s just, that’s just how it works for me.
VALLAS: I was hoping you were gonna bring in the grasshopper.
VALLAS: If you weren’t gonna do it, I was gonna do that.
NICHOLSON: [belly laughs]
VALLAS: I was gonna ask you about it. So, I am so glad that you brought that in. Staying just a little bit with the spirituality component, and obviously, I’m not talking about organized religion here, but spirituality much more broadly.
VALLAS: How does that fit into—if you feel comfortable talking about this, ‘cause we talk a lot off the air about this. So, I kind of wanna bring it in if you’re comfortable—how does spirituality as it shows up for you fit into your worldview, and how do you understand your work fitting in? You alluded to how you see them as very related.
NICHOLSON: Yeah. So again, it came, it starts with personal experience, I think. So, I’ve had a sort of spiritual awakening coming out of pain. So, my body, I don’t see the body and the spirit and the work as being separate or distinct things. I see them all as part of the same piece. But I didn’t just sort of sit down and start meditating. I was in really serious pain, and for some reason, it just, I finally found a way to get still. ‘Cause when you’re in that much pain, I mean, it’s almost like your skin, you’re like in, a carapace is wrapping around you that your skin is almost tight. It’s very hard to relax. And I found a way to find some openness in my body and some stillness, and so I would just sort of dwell there a lot. And I kept doing that as a practice, which was very much body centered. And through that experience, had what I would later learn were things described in traditional Buddhist literature as a third eye opening and a crown chakra opening and things that were very classically described. I didn’t know at the time that that’s what those things were but did learn later. And so, I’ve continued to cultivate that practice and my spirituality because I feel like it was part of the lesson that I needed to learn. It was my pain was sort of a wake-up call for me to see things in this larger view. And I absolutely see it as, you know, I do feel like I’m on my mission and my path, and I see it as very much consonant with my work. But I also really—and we’ve talked about this with respect to the Social Security work and poverty work that you’ve done, too—I think it’s very hard for people to find their life’s purpose and have that bigger view if they don’t have basic needs met, right? If you can’t eat, and if you can’t, if you’re in so much pain that you can’t function, you’re not likely to get to those sort of larger points in life and not likely to sort of actualize your purpose, your being, and all of those things. And so, to me—
VALLAS: Maslow’s hierarchy, right?
NICHOLSON: Absolutely. 100 percent.
VALLAS: You don’t get to the top of the pyramid, which people might remember learning in school, if you don’t have that core foundation that lets you get to the next level, that maybe positions you to be able to get to the next level, right? Yeah. So, just keep going, but just to give the visual. Yeah.
NICHOLSON: Yeah. No, that’s actually, that’s 100 percent what it is. And so, I think I see it as trying to get people sort of relief from chronic pain as being a way of allowing people to grow and have full lives physically, spiritually, emotionally, sort of across the board. And again, I don’t see those as separate categories. To me, they’re all very intimately connected.
VALLAS: Well, and I just wanna give a huge affirmation to sis, you are on your path. You are doing your life’s work! And that much is very, very clear to me at least. But knowing that we’re gonna run shorter on time than I would like, I’m gonna do a quick lightning round so that we can get through a few questions that I wanna make sure we get time for before we wrap. And then I think I’m gonna need to have you back on the show to have the whole conversation about the role of lawyers in this moment, because I know we’re not gonna get a chance to do a ton of that. So, that means we need to do that in full. But just quick lightning round, and maybe we will get to scratch the surface of that just really quickly. So, question number one, what is—’cause you were just speaking about mission and kind of what you’re here to do—what is your personal mission statement in maybe 30 seconds or so? And how do you wanna articulate that?
NICHOLSON: Well, it’s good that you ask that, because I’ve never actually formulated a clear personal mission statement. I probably should. I have for the organization, but not for myself! I do think I’ve heard people say that they’re—it’s too binary—but that there are two kinds of people when you have an experience of your own personal hardship. You either want everyone else to have to work to suffer the things that you did, or you wanna make sure that you remove every single barrier so nobody else has to go through what you went through! And I’m definitely, I think, in the latter category with the pain work that I’m doing. I’ve always wanted to work for greater fairness and inclusivity and justice and equity in this world. And I have, part of the reason that I’m doing the work I’m doing is that even though I had this difficult experience, I was super privileged on so many levels: educationally privileged, so my providers believed me, had good insurance through the government, had a job that accommodated me, have racial privilege, lots and lots of things also went right for me. And in this particular area, so many things go wrong for so many people, and it is very much intensified by equity issues. And so, that, I sort of feel like I was sort of a good person at the right time because people might listen because of the, largely because of the privileges that I have. And also, because I took opioids, I managed my job, and that I no longer need them, so I’m in a good position to talk about them, sadly. It shouldn’t be that way, but that’s often the case. So, I don’t know. That’s more than 30 seconds probably. [laughs]
VALLAS: No, if I were your editor on the book, I would say we should distill that down a little bit.
VALLAS: But there’s a lot. It’s really good that’s there, and it all tracks, knowing you. I’m gonna ask you two more questions in quick succession. One is, and these are some of the questions I’ve been having so much fun asking people this season for Off-Kilter. I mentioned that everyone I have on this podcast, in my opinion, is a superhero in the nerdy Marvel Universe I choose to go to, which is, of course, the superheroes in law and policy. If you accept my premise that you are a superhero, what do you view as your superpowers?
NICHOLSON: Well, I think most everyone has superpowers. So, without accepting the exceptionalism in that statement, I will say that I think the things that work well for me are my optimism. I joke that I have “Be positive” blood type, but I am sort of eternally positive by nature, and that has served me very well. Compassion, I think, and passion are two things that are essential. Curiosity, especially about what I’m not seeing and don’t see and don’t know. Community weaving, to some degree, drawing like-minded people to me, helping change people’s minds. I often think I get far through living on the currency of goodwill. And then I think probably boldness and a certain unrelenting determination, which has its negative aspects, too! But I would say those are the main ones. Yeah.
VALLAS: I love that. I would add so many more, but I love all of those for you. And I’m gonna make an executive host decision here, and I’m gonna piss off my producer, Troy. And I’m gonna give us an extension, which is gonna mean we’re gonna have a short version and a longer version of this episode. So, sorry, Troy, but I think folks are gonna wanna hear the other piece of this conversation. So, I’m gonna go ahead and bring it in and give us a little bit longer. So, and I haven’t done that yet this season, so I get, I think I get like one time to piss him off, right? I think I get one. So, it’s for a good cause. So, I’m gonna ask you one more lightning round question, and then we’re gonna have a little bit of that talk about the role of lawyers right now, ‘cause I really wanna start to get into that with you, even if we’re gonna come back to it.
So, the last lightning round question I’m gonna ask you that we’ve also been asking every guest this season, and Kings Floyd, our fabulous, one of our fabulous producers is going to be making a playlist of all of the songs that folks pick for this. But we’ve been asking folks to pick something that resonates as like, what is your hype song? What is your walk-up song? But in talking a little bit in preparation for this episode, you were sharing some of kind of how music shows up in your life. And so, it might not be a hype song, but what song do you wanna pick for something that brings you into the right mood to do this work and to feel heart centered and to feel kind of empowered in the way that you wanna show up as a leader in this work?
NICHOLSON: Yeah, that’s a nice way of saying it. Because I was like, I don’t have a song! [laughs] I’m an art person, kind of a literature person. So, but when I was compelled to think about it, a couple things came to mind, particularly as we were talking. I do often listen to Marvin Gaye and What’s Going On because I find honesty and storytelling really important, and that was a very heartfelt song describing some very difficult things that were going on. And so, and it’s just a beautiful, beautifully done song. And then if I need a hype song—I told you I’m old—[laughing] Don’t Stop Believing, Journey.
VALLAS: Which I am so in support of because we don’t have any Journey in the playlist yet. And I think I may qualify as old at this point too. We were talking on the podcast with somebody else recently about words that I’m apparently not allowed to say anymore because I’m too old! ‘Cause they’re what the cool kids say. So, I’m very much in support of having some Journey in this list. So, I love Don’t Stop Believing for you as well.
So, Kate, with that as sort of our lightning round, and this is gonna be the last question I’m gonna give us a chance to go to. But this is where I’d really love to close this out, and this is why I’m gonna go ahead and suffer the wrath of one of our producers and have a long version! Which I think is gonna be really worth it for this podcast version. You mentioned that part of your journey is that you’re a lawyer. You were a lawyer at DOJ. You were telling some of that story. In fact, a lawyer working on enforcing the ADA, right, when it was still hot off the presses. And something that I think a lot about, that I talk a lot about on the podcast, off the podcast is, in my personal opinion, it is way past time to update the archetype of lawyer as we understand it at this point to meet the moment that we find ourselves in as a society. We’re in the middle of a global paradigm shift. This is an era where— Something we’ve also been talking a lot about on this podcast is, and I’m gonna invoke some words that are a nod to Sonya Renee Taylor, who’s a poet and an activist and someone everyone should know and follow, author of The Body is Not an Apology, among many other things. Sonya Renee Taylor talks about this being a moment when the move is not to return to a normal that never was, apart from the parade of social ills that it normalized.
And having been a lawyer working to advocate for people within the broken systems that we’ve been talking about and also having been an advocate who’s been using your law degree to work to change those systems themselves, I think the question I would really love to give you a chance to speak to just a little bit is, what are your thoughts on the role of lawyers, and really the role of lawyering, in the context of a paradigm shift like we find ourselves in now? And I say that as someone who myself is a lawyer. I sometimes call myself a recovering lawyer because I feel like a lot of what we learn in law school is how to work within the systems that we already have and represent people within those systems. But you’re a lawyer who has moved into actually trying to change systems. And so, I’m curious your thoughts on do you agree with my premise that it’s time to update the archetype, and what do you think about the role of the lawyer in this moment?
NICHOLSON: I absolutely agree with that premise. I went to DOJ very consciously. The reason I wanted to do that job as a civil rights attorney is because I recognized that some people had power and some people didn’t. And the government, as a prosecutor, has power, and so that can be a dicey thing. And there’s prosecutorial discretion, and you have to be careful with it. But I liked the idea of being able to upend the power structure, to give the power to the people who didn’t have it in society. But that also speaks to the fact that law traditionally practiced is a super hierarchical system where there are winners and losers and sort of a zero-sum game. And that is deeply problematic.
And it’s also, I still use the law. I mean, we were involved in a Supreme, we won a big Supreme Court case last term that has helped shift policy. I still use the law as a tool where it’s necessary. But the problem with it, not just as a matter of principle or a moral principle, as you’re talking about, if we’re going to the level of archetype, it’s also incremental by nature. You’re already working in a stacked system, and it’s way too slow to have a powerful, I mean, it can have a powerful impact. To be able to change the law at the Supreme Court level is a great thing, but it’s just far too slow to have an impact on people who are suffering in real time. We need a bigger paradigm shift, which is why I have shifted more to the narrative and policy and things of that nature as a broader, so, it’s still the law in a sense. There’s still a lot of times laws and policies and mandates. And I do think we need laws still as a society. I mean, I think we need the civil rights laws. I don’t think necessarily people are gonna always do the right thing without having a bit of a stick. So, I’m not entirely willing to abandon that idea. But I do think that we’re in a new era, and that really significant social change requires more.
VALLAS: And I so appreciate you bringing in also just the zero-sum game piece, right? We get conditioned and taught, not just as lawyers, in other spaces, too, but certainly as lawyers that it’s there is a winner and there’s a loser, and it is adversarial, and it is this side and that side. There’s very little space created in that paradigm for what about I don’t win if you don’t also win? How can we figure out how to make things better for everybody, right, and transcend that I win/you lose frame. So, I love you bringing that in as well. That’s gonna be a conversation we’re gonna need to have as a longer format conversation for this podcast. I’m excited for it, and I wanna give you the chance to close out by saying what’s next for NPAC, the National Pain Advocacy Center? Is there anything you wanna plug or that you have coming up that you wanna give a quick tease to?
NICHOLSON: Well, we just issued our newsletter, which hopefully will be in the notes of what we’ve been doing in the last couple of months, which has been a real mix of things. I did mention that we’re going to, that I’m gonna speak, I think, in Europe about this bigger effort of many countries in the world to get together and bring people with lived experience into research. That’s something I’m very excited about. In terms of the law in Colorado, we just, I’m now meeting with the Colorado Medical Society to make sure it gets implemented because as you know, as a lawyer, a law on the books is one thing. A law implemented is something very different. And so, it’s really important to take care of every stage of that process. I mean, there are lots of different things that we are doing from sort of storytelling and narratives through policy and implementation, and it’s just sort of an ongoing thing.
VALLAS: I’m so excited for all of it. We will definitely have links in show notes, so go check out the show notes for more about Kate’s work and also to get involved with or to learn more about the National Pain Advocacy Center. Kate Nicholson is the founder and executive director of the National Pain Advocacy Center. And we’ll put in show notes how folks can find you on social media as well. But Kate, thank you, thank you, thank you for this conversation, for your friendship, for the work that you do, and for taking the time. This was really fun for me, and my only regret is that we don’t have like four more hours for this conversation! But I hope you enjoy family time coming up, and I’m looking forward to catching up with you on a human level soon. [theme music returns]
NICHOLSON: Same. Thank you so much. I really enjoyed it.
VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the phenomenal Kings Floyd, who keeps us all in line week to week. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week