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Join neurologist Juliet Morgan and internal medicine physician Meghan Jobson as they discuss their book, Long Illness: A Practical Guide to Surviving, Healing, and Thriving. From autoimmune diseases to chronic pain, they share their expertise on navigating the challenges of long-term illnesses. Discover valuable insights on symptoms, working with your medical team, accessible healing techniques, mental health management, and long-term solutions. Get empowered to build your recovery toolkit and receive the care you deserve. Tune in to this transformative podcast episode on long-term illness.

Juliet Morgan is a neurologist. Meghan Jobson is an internal medicine physician.

They discuss their book, Long Illness: A Practical Guide to Surviving, Healing, and Thriving.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Get CME for this episode by clicking on the CME link in the show notes. Today, we welcome Juliet Morgan and Meghan. Juliet is a neurologist and psychiatrist. Meghan is an internal medicine physician. Together, they are authors of the book Long Illness: A Practical Guide to Surviving, Healing, and Thriving. Juliet and Meghan, welcome to the show.

Juliet Morgan: Thanks for having us.

Kevin Pho: So I’m going to ask each of you just to briefly share your stories and journeys to where you are today, and then we’ll talk about your book. Meghan, why don’t you go?

Meghan Jobson: Yeah, I’m from North Carolina. I went to college in North Carolina. I went to graduate school at the University of Utah, where I got a PhD in neuroscience. I came back to Duke and did a postdoc in epigenetics, and then decided that I wanted to work on the clinical side. I’d been a Pilates teacher and done a lot of movement therapies with physical therapists, and I really just enjoyed patient stories and working with people more directly on the ground.

And so I went to medical school at Chapel Hill, where I also did a research fellowship in glomerulonephritis and vasculitis. I worked a lot with people with different vasculitides and glomerulonephritides. Big, hard word for everyone. And then I went on to do my internal medicine residency at the University of California, San Francisco, where I also did a fellowship in palliative medicine and a fellowship in integrative medicine, which is where Juliet and I overlapped in training and came up with the idea for this book.

Kevin Pho: Excellent. Juliet, please share your story and journey to where you are.

Juliet Morgan: Yeah. So I went to medical school always wanting to do integrative medicine. I wanted to be a family medicine doc. And then I did a neuroanatomy class, and I was just sold on doing something brain-related. I went to neurology residency and got really into the hardware of the brain, but I realized that a big, big part of healing was going to be learning about the software, and that psychological change was going to be such an important part of caring for the population that I love.

So yeah, I went to med school at Baylor College of Medicine, and then did neurology residency, psychiatry residency, and an integrative medicine fellowship at UCSF. That’s where I met Meghan. Deep in the pandemic, actually, Meghan was like, “Let’s use this integrative medicine toolkit. Let’s work with these long COVID patients.” We didn’t even really have a name for these patients quite yet. They were just kind of patients who weren’t getting better. And then from there, we started to pull together resources, and then we started to put together something that looked a little bit like a workbook, and here we are now. We’ve expanded it to people beyond just long COVID.

Kevin Pho: All right. So let’s talk about your book. It’s titled Long Illness: A Practical Guide to Surviving, Healing, and Thriving. So, Meghan, tell us, how did this book come together?

Meghan Jobson: Yeah, so, like Juliet just kind of went over, at the beginning of COVID, we were in different stages of training, and what we noticed is that a few months after COVID started, we had these patients who were coming to us who had had COVID and had a lot of different complaints: “My toe was blue. I feel different. I feel tired. My doctors are telling me nothing’s wrong, and I’m just depressed because it’s the pandemic.” We’ve all heard this story, right?

And for us, it really resonated, as people who have gone through the trainings that we have gone through, and also for myself as someone who has a chronic illness. This is something that we’ve heard so many times before from patients, and we’ve heard it as ourselves. I think everyone has experienced being dismissed at some level in medicine. It doesn’t matter. Some groups definitely experience more, but at some point something’s been said to us. It just happens, because it’s a speedy game when you go to the doctor, and people are people, and we say the wrong thing.

But I think what we really saw was that this was a lot like other long illnesses, particularly the rheumatological diseases, the post-infectious diseases, and a lot of people who don’t have diagnoses yet. There was just that confusion and that anger, and it was causing a big rift, really, between the people who are experiencing these symptoms and health care providers. One, because the system was so overwhelmed at that point, even if we wanted to do everything for these people. I mean, we all can remember how chaotic it was.

And so we really wanted to use our tools to help give people information, based on what we know from treating people with difficult-to-treat symptoms, from my palliative care background to the different psychological aspects from Juliet’s background, and then just all of our training together, about how we can offer you information that you can put together that can maybe help you on your journey and empower you to know what to say, who to say it to, and when to say it. We have to remember as doctors that when you’re sick, coming into a system that you know nothing about is so overwhelming. We wanted to give people something that they could read and go through and say, “That’s me,” and show it to a doctor so they understand, or a care practitioner, so that they felt empowered and felt like they were being seen and heard, because that’s super important.

Kevin Pho: And Juliet, one of the things that Meghan said was that patients with these long-term, unexplained symptoms are often dismissed by the health care system for a variety of reasons. So tell us a story or case study from your experience about how some of these patients are dismissed. What’s that like for them?

Juliet Morgan: Yeah, so even now I’ll see patients who come to my practice with long COVID who just get chronically dismissed and bounced around, and don’t feel like they have a home base, don’t feel like they have an understanding of what their diagnosis is, how it’s treated, even the unknowns, the uncertainties. I have plenty of patients, too, who come to see me who are told, “It’s all in your head.” One of my mentors, Andy Josephson, the chairman of neurology at UCSF, says, “Yeah, it is all in your head, right? It’s in your brain. It’s in your body. So let’s take this really seriously.” But these are people who haven’t yet had someone who said, “OK, let’s go a little deeper. Let’s think expansively. Let’s think outside of just biomedical options. Let’s create a team.” And medicine is at its best, I think, when it’s played as a team sport. These are people who just feel so abandoned and so lost, and who are suffering.

Kevin Pho: And Juliet, just to follow up on that, from a clinician standpoint, why do you think that so many clinicians dismiss these patients?

Juliet Morgan: I mean, I’ve been a really busy physician before, and I think that we encounter this frustration inside of us when we can’t fix or change something immediately for someone. There can be feelings of self-doubt: Am I a good doctor? Do I understand this? Or even just frustration that then gets projected onto the patient when they have something that isn’t getting better right away, where we don’t have one clear option for treatment. And I think it’s easy for that to happen.

And we also hope that practitioners will use our book, because we go through some common symptoms and how these are treated, what referrals the patient can ask for, and what referrals a clinician could think about. Even for headaches, there’s kind of an algorithm: You start with this, these little lifestyle things that you can do; these are low-risk natural products that have nice data around them. And then when do you refer to a neurologist? But even then, when do you get to a headache specialist? When is Botox a necessity? What about an infusion? What about a novel antibody treatment? That way, people can begin to have a resource, and practitioners can have a resource that they can use to take care of patients where, I think, that biomedical approach falls short, both for patients and for clinicians.

Kevin Pho: So, Meghan, take us into the exam room. There are a lot of tools that you have in the book. So can you paint a picture of how these tools are in action in the exam room? What are they like? Give us an example.

Meghan Jobson: First, if it’s OK, Kevin, I wanted to add on to Juliet’s answer to that last question. I think it’s a huge task to be a practitioner in a moment with a patient. You’re taking on so much, not just the patient there, but the experience of their community, the experience of their ancestors, and all of the issues with society at large. And no one person, no one group of people, should be responsible for all of that. And I think because of the way our health care system is structured, often a lot of this is put on the health care practitioner: Why couldn’t they do this? Why couldn’t they understand this? Why couldn’t they see this? And so I think we need to remember that and be compassionate towards ourselves. This is a lot to deal with, and when people come to us, they’re coming with all of that as well.

I think also we’re trained, in this society, in this framework, that there’s this myth of virility and wellness in our culture. There’s this myth of the able-bodied person that honestly serves no one. And it’s one of the last big isms that really persists. Even people like myself who have disabilities really struggle with this. I think all health care practitioners need to think about their own internalized ableism, because at some point everyone listening to this is going to get sick. Everyone’s going to deal with a complex illness or disability. And we have a lot of things in our culture that have made us look at people who have disabilities and illness as less than, even though we serve these people. We need to address that deep-seated feeling in ourselves and the way that our society paints people who have disabilities and illness.

And I think when we look into that, and when we look into our own practice, one of the things that I’ve seen a lot through my training is people I really respect will kind of have these healthism views of, “Well, if this person wants a liver transplant, they should just stop drinking,” or, “Well, if this person really doesn’t want to be depressed, they should just get out of bed.” These are things that we know aren’t true, based on tons of research. And so I would just say that a lot of this does take practice and being involved in thinking about these issues. When we talk about these things and deconstruct them, it actually makes our jobs a lot easier and makes things easier for us. It reduces our stress and helps us understand that there are things we can do to feel better about these interactions that sometimes can be really burdensome.

And then also, to talk about some of the tools that we can use in the exam room to address these issues, I think the biggest tool is going to be initially validating a person. We often say, “Tell me what’s going on.” And people will pull out their lists, and we’ll be like, “Oh, Lord.” And so, I think, we might only have 5 minutes. We might only have 15 minutes. I went into the areas I practice because I can get an hour or 2 hours with a person. But I think the first thing to say is, “Thank you for coming here. Sometimes our visits are going to be short. I want you to know that I am here for you, and I want to establish a relationship with you over time to help you address the things that are bothering you. And I will work to help advocate for you and be here for you.” I think everyone needs to say that, because just saying that to someone is a huge gift that you can give somebody. Whether or not you’re going to 100 percent fulfill whatever that means to them, just letting them know that you’re present with them right now, in this moment, is a great gift.

And then I think just really listening to people’s stories. Of course, everyone’s going to say, “Well, I don’t have time,” that kind of stuff. I think letting people share with you as much as they can, those kinds of things, letting them walk through the frustrations of different symptoms, can be helpful, because I think most people who come to you who have really bad nausea have probably tried everything and are probably desperate and very vulnerable. And so, while yes, it might be true that they just need to take their Zofran in a different way, you need to let them let it all out first.

But I think, in terms of tools, aside from just having a really good dialogue and listening to someone, there are a lot of important physical exams that we can do and different tests that we can offer people, and in our book, we go through some examples of those. But I think, like we learn in training, the history and letting people talk will give you so much information. And unfortunately, our system doesn’t allow for that as much as it should. It doesn’t allow doctors to write good notes anymore to include this. They’re like, “Allergies, Zyrtec.” Like, “Tell me no more.” So absolutely, we want to create a space. Sometimes that’s not available.

Juliet Morgan: Well, of course, we want that to be available to patients. So let’s talk about a kind of broadly applicable toolkit. We have things like mindfulness practices. Mindfulness is potent medicine. It’s anti-inflammatory. It’s helpful for so many myriad conditions. So we go through many different ways of incorporating mindfulness and mindfulness exercises in many of our chapters. There are journaling prompts, as well as an entire chapter on narrative medicine. Narrative medicine can be so important for people with a long illness, and it can help people to really integrate a sense of what this means for them and understand their experience as a whole.

We go through natural products: how to pick one, what’s safe, how to think about all these different stamps on bottles. “Well, how do I pick something? How do I incorporate a natural product into my life, into my care?” And for practitioners, so many practitioners I know are texting me, saying, “How do I pick out a supplement? What is ConsumerLab? What is GMP certification? How do I begin to pick something that’s safe? What’s going to be adulterated? I don’t know, what are the standards that are applied to supplements?”

Then we go through all these different diets. This is really big: how to nourish your body, but what’s the data, and what do I need in different conditions? In my area, when I have a patient who has brain fog and cognitive complaints, I’m counseling them on the MIND diet, because I have really great data to support it, that it slows aging and that cognitive outcomes are better.

And we have lots and lots of psychological tools. In our book, we have exercises from cognitive behavioral therapy, dialectical behavioral therapy, and acceptance and commitment therapy. We have psychodynamic themes. We have so many different ways that you can engage and see what resonates for you, so that you can maybe explore more. We do internal family systems work. If you’re someone who’s experiencing trauma or a trauma response, you can see, “Oh my gosh, I like this. Maybe I’ll try and find a practitioner of IFS so that I can move towards that.” We think about this almost like a buffet meal. People can take bites of different dishes and then decide that they actually want to explore that further. And we go through how to build a medical team and how to get more of what’s going to be increasing your vitality.

Kevin Pho: So, Juliet, just as an example, you mentioned brain fog that’s associated with long COVID. From your book, what’s some specific advice that you could give to clinicians on how to address that?

Juliet Morgan: Yeah, absolutely. For clinicians, I would say this is a really hard complaint to tackle. It’s one that comes up in my clinic all the time, and there are so many contributions to brain fog. In our book, we go through a whole rainbow of hormonal contributions. Is this actually ADHD, depression, anxiety, inflammation, sleep? Oh gosh, sleep. So there are so many. Hydration: The brain is so sensitive to changes in hydration and blood pressure. So really think about all the different things that could contribute to brain fog, and make sure that you’ve done an adequate evaluation.

And then we actually have a nice excerpt that’s published on Psychology Today, in case people want to delve a little deeper into the tools that they can recommend. I recommend the MIND diet, an easy, simple intervention, except for the dark leafy greens every day.

Kevin Pho: Yeah, what is the MIND diet, for those who aren’t familiar?

Juliet Morgan: Yeah. So the MIND diet is a modified Mediterranean diet. On the whole, it’s kind of just a good, healthy diet, but in a head-to-head trial looking at the Mediterranean diet versus the MIND diet, the MIND diet was more protective against progression. So the big change is that there are two things that are different from the Mediterranean diet. One is dark leafy greens every day, which I find really hard as somebody who’s trying to follow the MIND diet myself. I find it to be really hard. And then also berries two to three days a week. But otherwise, it’s things like cooking with olive oil, not with butter, not with saturated fats, reduced sugar, reduced fried foods, red meat only maybe once a week, fish at least two days a week, and then veggies and whole grains daily.

It’s not the right diet for everyone, but specifically around brain fog, I try and go for that neuroprotective piece, and that’s why that’s the diet I’m typically recommending. Then there are other medications that we’ll sometimes use in patients who have dysautonomia and brain fog, or MCAS and dysautonomia, but that’s a whole other conversation. Yeah, I would say that rather than getting frustrated by it, get really curious about it, and then pick a few interventions to try, and always think about sleep. That’s probably my number one: optimizing sleep.

Kevin Pho: We’re talking to Juliet Morgan and Meghan Jobson. They are the authors of the book Long Illness: A Practical Guide to Surviving, Healing, and Thriving. Now I’m going to ask each of you for your take-home messages to the KevinMD audience. So, Meghan, why don’t you go?

Meghan Jobson: Yeah, my takeaway message is: Listen to your patients, let them tell their stories, and also be compassionate with yourself. It’s really hard to practice in the nature of medicine that we have. And remind patients that they’re not alone, and that there are tools out there to help them build a better life.

Kevin Pho: And Juliet, your take-home messages to the KevinMD audience.

Juliet Morgan: Oh gosh, I just want to echo everything Meghan said, but also that integrative medicine is medicine. And two, we don’t get enough training about how to move beyond biomedicine, how to think about complementary and alternative medicine, how to understand whether it’s safe or not, and how to begin to recommend that to patients in a way that feels right for you. But this is something that our patients want, and there are kind of these simple ways to begin to expand your toolkit, if that’s something that’s interesting to you.

And yeah, it’s not easy being a physician, I think, right now in 2023. We stand with you. We take care of what I think other people would consider some of the more challenging patients in medicine. And so, yeah, we appreciate you listening, and we hope you’ll check out the book.

Kevin Pho: Well, thank you both for joining me and sharing your time and insight.

Meghan Jobson: Thank you for having us.

Juliet Morgan: Thank you.