Interview: What we learned the hard way about healthcare
Natasha Burrell and Mia Armstrong-López, the editors of Doing Well, discuss their own relationships to health, and the community they hope to build around health literacy.
The World Health Organization defines health as “a state of complete physical, mental and social well-being”—it’s not just about the absence of illness or disease. This is a general definition, sure, but it starts to paint a picture of all the parts of our lives involved in health: our environments, our access to resources and information, our communities. Our experiences with health are both distinctly individual and deeply connected.
We’ve been dreaming up Doing Well—a news outlet that will help you understand and improve your health—for nearly a year. Our goal is to provide you with actionable and interesting interviews, tips, and resources, while creating a community of people who can seek better health together.
For our first newsletter, the Doing Well team—including Natasha Burrell, program manager for health literacy at ASU Learning Enterprise and a registered dietitian nutritionist, and Mia Armstrong-López, managing editor at ASU Media Enterprise and a journalist who covers health—is bringing you behind the scenes with a conversation about our personal and professional experiences with healthcare, what we’ve learned, and the community we hope to create.
Our discussion has been edited for length and clarity.
Jump ahead:
Natasha shares her experience navigating eczema as a child—and what it taught her about teaching health advocacy at young ages.
Mia discusses how a challenging experience with mental healthcare changed the way she approaches doctor’s visits.
Natasha explains what a registered dietitian nutritionist does—and what her time as a RDN made her wish everyone knew about their health
Natasha defines health literacy
Mia shares the skills she’s picked up as a journalist that have helped her as a patient.
Mia Armstrong-Lopez: Do you remember your earliest experience with the healthcare system?
Natasha Burrell: When I was about 5, my sister had to spend her first birthday in the ER because she had an asthma attack. I remember feeling very scared and overwhelmed. What was supposed to be a happy day turned chaotic quickly, and I wasn't sure what was going on, but I knew something was wrong.
I think that really shaped my initial impressions and interactions with the healthcare system, which were based in fear and feeling scared and overwhelmed.
MAL: When we're kids, a lot of folks’ first memory of the healthcare system is something traumatic. If you were to think back to that moment, is there something that would have made the younger you feel less afraid and more comfortable?
NB: Yeah—I developed eczema when I was around 7 or 8. I started to go to the doctor a lot more, and I remember some of the doctors would crouch down to my level and speak in a softer voice. To have this scary doctor get down and speak to me at my eye level was really impactful, and helped me have more trust in medical providers.
MAL: It can be hard, because providers have so much to juggle. But I feel similarly—the best experiences I've had are when I've been able to have a relationship with a provider, as a person rather than just as a patient.
NB: What do you remember about your earliest experience with the healthcare system?
MAL: I remember a couple traumatic moments, like splitting open my head and having to go to the ER, but those still feel a little blurry. The moment that stuck with me was when I was in middle school, and my mom took me to the county health center to get a vaccination for HPV. I remember having this conversation with my mom, who told me, “This is not something that was available when I was your age.”
HPV is an incredibly common sexually transmitted infection. It's also an infection that can lead to cancer, especially cervical cancer. The power of vaccination was fascinating to me—by preventing infection, it can also prevent 90 percent of cancers caused by HPV. There was this small thing that we could do that would give some sort of control over our health in a very tangible way. That was the first time I remember connecting with preventive healthcare.
MAL: Beyond your first experience with the healthcare system, is there a time that you felt like you didn't get the healthcare or health information that you needed?
NB: Yeah—when I was first navigating eczema, it was a really painful condition. I had eczema head to toe, and my parents did not want to explore topical steroids, which is typically the treatment. When asked about other treatments, the medical providers didn't have anything. I remember my parents felt really frustrated, and I felt frustrated because I just wanted this itching to stop. My parents turned to the Internet, and health misinformation has been around for a long time—we tried a lot of different remedies, from eating a clove of garlic every night to drinking cold tomato juice. To this day, I still can't stand the smell of cold tomato juice. But the doctors didn't give us options, and my parents didn't quite know how to advocate. I didn't know how to advocate for myself either. For years I felt really confused about whether this was ever going to end.
MAL: That sounds so hard to navigate—you're in very real physical discomfort, and then there's also a psychological discomfort of not knowing where to turn to and feeling like there aren't options for you.
NB: Absolutely. I think we have a huge opportunity to teach health advocacy at young ages. I wish I would have known that I could ask questions. I didn't know how to advocate for myself at all, or even really how to communicate with a doctor. Those were skills I got later in life. But had I been taught that at a young age, we might have been able to arrive at treatment sooner.
One thing that I would encourage, especially when dealing with something that's chronic, is to keep a log—I wish I would have done that when I was younger. It's one thing to say, “I've been dealing with this for a while.” But when you are able to pull out a log and say, “Look, for the past five months, I've documented every time my eczema was itchy; I've documented when I was awoken or couldn't sleep”—that tells a much more powerful story, and it gives you a launchpad for advocating for yourself.
NB: How about you? Can you remember a time when you felt like you didn't get the care or the health information that you needed?
MAL: Yeah. When I was a college student, I was struggling with some mental health issues, with feeling anxious in a way that was preventing me from sleeping and going to class and being able to do my work. And so I went to a general practitioner, and I was diagnosed with anxiety and prescribed a therapy regimen and medication. I was told that I could take this medication in the way that you might take a Tylenol—if you're anticipating anxiety, or if you're feeling anxious, you can take it. There are all sorts of different types of medications to treat anxiety, but the particular medication I was prescribed was one that you would have had to take every day for a certain period of time in order for it to have an effect. But I took the medication in the way that my doctor had instructed me to for about a year, until I eventually went to a psychiatrist, who told me, “You're actually not taking this medication in the way that you would need to for it to have its prescribed effect.”
That was really tricky for me, because I knew that the medication wasn't helping me in the way that I had hoped it would, but I felt a bit ashamed about discussing my challenges with anxiety. Luckily, in the past few years there's been a much broader conversation about destigmatizing mental health. There's an estimate from the National Alliance on Mental Illness that 19 percent of U.S. adults have an anxiety disorder. So I certainly wasn't alone.
But I really wish that my doctor, when I was diagnosed and first prescribed medication, had sat down with me and explained how the medication worked, walked through any concerns I had, and encouraged me to follow up in a month or two to see how I was doing, and to adjust things if necessary. I got my diagnosis and prescription for treatment in this period of maybe 20 minutes, and that was a really big thing in my life that then wasn't followed up on. I was later able to get the information and the healthcare that I needed, but that was a tricky introduction into mental health.
NB: Does that experience influence how you interact with healthcare providers now, especially in the mental health space?
MAL: Yeah, I think so. I also don't want to put all the blame on the doctor who originally prescribed this medication, because I know she was really busy; she had a high caseload. Something that I've thought a lot about is, it was a very emotional moment for me to get that diagnosis. Getting any sort of diagnosis, and in particular a mental health diagnosis, can feel emotionally heavy. So I don't know that I was in the best place in that original appointment to really digest the information and to know what questions to ask.
As I've gone on, I’ve tried to apply listening skills, such as taking notes and asking myself actively, “What questions do I have about this? What doesn’t make sense to me?” I ask if I can record things so that I can listen afterwards, in some cases I bring with me someone that I trust, like a friend or my spouse, who can help me listen and ask the questions that I might not be able to ask in that moment.
MAL: We've been talking about the personal aspects of healthcare. But you also have a professional relationship with healthcare as a registered dietitian nutritionist, and you’ve worked with patients on the clinical side throughout Phoenix. Walk me through what a registered dietitian nutritionist does.
NB: A registered dietitian is a credentialed healthcare professional who applies evidence-based information about food and nutrition. In my role as a dietitian I performed medical nutrition therapy. We assess a patient, and this takes into account all the different elements that impact their health, from what's available in their kitchen, to what their biochemical labs look like—their cholesterol or their blood pressure, their weight—to if they have transportation. We really assess the patient holistically, and then we talk through health education and personalized interventions to improve their health, based on everything that they've told us. It was such a rewarding job.
MAL: These days, you're working as the health literacy program manager at ASU Learning Enterprise. Health literacy may seem like a buzzword—tell us what it means.
NB: Health literacy is the ability to find, understand and use health information to make well informed health decisions for you and your family. Essentially: Do you have the knowledge and the skills to find health information that's applicable to you and makes sense? And then: Do you have the tools to actually implement this health information in your life?
The last time we did a nationwide assessment of health literacy was in 2003, and it found that only 12 percent of adults had proficient health literacy. So that’s a lot of people who need help navigating the healthcare system and finding health information that is understandable.
MAL: It's not just having access to information, it's can you apply it to your life? I think all of us have ways that we can improve health literacy.
NB: Yeah, health literacy transcends all of our differences. It applies to everyone, regardless of your race, your socioeconomic status, what neighborhood you live in—all of us, at some point in our lives, need health information that is reliable. In an increasingly digital world, health misinformation is rampant, and there's so much health information out there, but it's hard to wade through it all to find what's most useful for yourself and your family.
The healthcare system is increasingly needing patients to manage their conditions on their own, as we deal with healthcare shortages nationwide. I saw that firsthand, I sometimes only got to spend 15 minutes with a patient who had multiple chronic conditions, and that just isn't enough—but they can't get on my schedule again for weeks or sometimes months. I came to ASU because ASU has all the tools and the experts in order to make a real difference in how we present health information, how we deliver health education, and how we can help change the healthcare system to be more easily navigated and user-centered.
MAL: As someone with such deep expertise as a health professional, are there things that you've learned that you think everyone should know about their health or health systems?
NB: I want everyone to know that you are able to determine what you want out of your healthcare. That might look like asking a provider to spend a few extra minutes with you. It might look like asking for a different provider, or maybe asking for someone to speak to you in your native tongue. I hope that we can give people the tools and the skills that they need to take care of their health when they're not with their healthcare provider, and then, when they are with their healthcare provider, to be able to advocate and communicate, so they walk away from the appointment feeling confident.
NB: You're not a healthcare professional, but you are a journalist, and as a journalist you've covered health pretty extensively. What are some of the health stories that have really drawn you in?
MAL: Shortly after I graduated college, I went on a New York Times program to Guatemala and Paraguay, where we were covering global health. I was with the columnist Nick Kristof, and one of the things that we were reporting on was breastfeeding in low-resource places, and how breastfeeding is for many people an accessible way to feed their children. But breastfeeding can also be hard, and there's also misinformation about how one should breastfeed, what is a problem, and how one might be able to solve that. So that was one of my introductions into health reporting, looking at how we can give people better information to help them make a change in their life, if that's something that they want to do and they're able to do.
Then, a lot of my coverage morphed into covering the mental health system. For a couple of years I helped edit a news vertical called State of Mind, which was a partnership between Slate magazine and Arizona State University that covered mental health. We were publishing essays largely from people with personal experiences in the mental healthcare system, either navigating it as a patient or a family member or a provider. Mental health affects us all, and the way to understand mental health systems is through personal storytelling.
On a personal level, a lot of the coverage that I've done is related to women's health and reproductive and sexual health, and specifically on contraception. Contraception is something that 99 percent of women in the U.S. who have been sexually active have used at some point in their lives. But it's something that we don't talk about—it's hard to imagine something so ubiquitous, and yet it deals with this stigma. I think it's important for people to fully understand the contraceptives that they have available to them in order to feel served by those contraceptives—or if they're not served by what is available, in order to demand something different.
NB: Are there skills that you've picked up as a journalist that have helped you navigate health systems as a patient?
MAL: As a journalist, one of the skills that you learn is to ask people questions even when you feel uncomfortable doing so. That's a skill that I've tried to bring into my interactions with the health system, to ask questions even when it feels uncomfortable. I think also, when someone is sharing a health experience, listening with empathy, and not assuming that I know their experience, letting them tell it to me in their own words. That's some of what we're trying to do with this newsletter: We're trying to create spaces for people to share their own stories, to share their own expertise, and to develop skills to navigate health systems with more confidence and information.
NB: Definitely. We tend to have a very narrow view of health. Many of our first experiences with the healthcare system is when we're sick. But in reality, health is so much more than that. It is mental health and the food that we eat; it's in the air that we breathe. We're trying to give people the skills and the knowledge to navigate health in whatever setting they're in.
Do you have a question or topic you’d like us to tackle or an expert we should interview? Reach out at any time—we’d love to hear from you.