How to Improve your Communication, Connection and Confidence, with Rheumatologist Dr. Ortiz

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Summary:

On episode 158* of The Arthritis Life Podcast, Cheryl sits down with rheumatologist Dr. Elizabeth Ortiz of Connected Rheumatology to share empowering insights for those navigating a new RA diagnosis. With over 15 years of experience, Dr. Ortiz offers practical advice on how to build a strong, communicative relationship with your rheumatologist—so you can feel heard, understood, and supported.

Together, Cheryl and Dr. Ortiz debunk common myths about RA and tackle important topics like medication hesitancy, lifestyle interventions, and the balance between the two. Dr. Ortiz reassures listeners that while factors like nutrition, sleep, exercise, and stress management can help, “just because lifestyle can help doesn’t mean lifestyle caused it.”

They also discuss how to make the most of your doctor’s appointments—because being prepared can help you feel more confident and in control. Plus, they dive into the emotional side of living with a chronic illness and the uncertainty that comes with it. Dr. Ortiz shares strategies doctors can use to provide reassurance, even when the path forward isn’t always clear.

Finally, they explore concierge medicine and why Dr. Ortiz transitioned to this model of care. And as a reminder to anyone feeling overwhelmed, Cheryl and Dr. Ortiz leave listeners with this thought: “Everyone’s got something.” RA may be part of your story, but it doesn’t define you—you can still build a life that feels full and thriving. 

Trigger warning: this episode contains a discussion about disordered eating and orthorexia (an eating disorder characterized by an unhealthy obsession with eating only healthy or “clean” foods).

Episode at a glance:

• Why Dr Ortiz Became a Rheumatologist: The importance of building a long term relationship with your patients and searching for answers in the gray areas of medicine.
• Tips for patients and doctors to communicate and connect better: Dr Ortiz shares practical tips for improving your connection with your doctor.
• Medication Hesitancy and Lifestyle: Dr. Ortiz and Cheryl reflect on the importance of understanding medication efficacy, and how some evidence-based lifestyle interventions can be an important adjunct in your care.
• Busting myths about rheumatoid arthritis: Dr. Ortiz and Cheryl address common misconceptions Dr. Ortiz has found in her Connected Rheumatology YouTube channel and Cheryl has found on her Arthritis Life social channels
• Empowering Mindset for a New Diagnosis: Your diagnosis is not your fault, but you do have control over how you respond.
• Shifting perspective: “Everyone’s got something” – you’re not alone in this journey.
• Living a Full Life with RA: Thriving means building a life beyond your condition.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dr Elizabeth ORtiz 

Dr. Elizabeth Ortiz is a double board certified Rheumatologist based in Dallas, TX. She has over 15 years experience practicing rheumatology and has worked in a variety of environments, including academia, public county hospitals, concierge private practice and digital health. A teacher and advocate at heart, she uses The Connected Rheumatology youtube channel to bridge the widening gap between doctors and patients, by providing trusted and up to date information in a practical, easy to understand format.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

• Links to things mentioned in episode or additional listening
  • Episode 100 of The Arthritis Life Podcast with Cheryl’s parents
  • ACR Integrative 2022 guidelines for RA
  • Rheum for Dialogue: Conversation between Cheryl and Dr. Ortiz on Abbvie’s channel
• Speaker links
  • Youtube
  • Instagram 
  • Connected Rheumatology Website 
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Cheryl on BlueSky
• Arthritis Life Facebook Page
• Cheryl on “X” Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

[00:00:00] Cheryl: 

I’m so excited today to have Dr. Liz Ortiz on The Arthritis Life podcast. Welcome! 

[00:00:06] Dr. Liz:

Hi, I’m glad to be here. 

[00:00:09] Cheryl:

This is so exciting ’cause I rarely have someone on the podcast that I’ve already met in person. Usually it’s people I know online, but you and I have met in a series of videos we did about partnering between the patient and the rheumatologist. But before we get to that, can you let the audience know where do you live and what is your relationship to arthritis?

[00:00:30] Dr. Liz: 

Yeah, no, yeah, no, it was a great meeting. It was like a whirlwind when we met. But when we did meet it, it felt like I had met someone I’d known forever. So, very happy to be here. So, I am a rheumatologist. So, that is my relationship to arthritis. I’ve been practicing rheumatology for over 15 years. So, you are just steeped in all kinds of different arthridities, which is a word I like to say. And I’m currently in Dallas, Texas. I’m born and raised here in Texas, but I actually spent most of my adult life out of Texas. After college, I went to med school in New York, and then I spent the first chunk of my career in Los Angeles. So, I came back to Dallas about five years ago to be closer to family. 

[00:01:18] Cheryl: 

Oh, that’s awesome. Yeah. And I always love to ask rheumatologists, what inspired you to pursue the field of rheumatology?

[00:01:29] Dr. Liz: 

Yeah, I’d be interested in what other people say. I was actually exposed to rheumatology really early, or early in my medical education. So, when you’re a third-year medical student, you start rotating in the hospital, and the students always get the interesting cases. And so, I got a vasculitis case, and it’s a rheumatic condition. And so, I immediately was hooked. I saw how rheumatology cases really mandated that you do a deep dive. So, not only on the conditions, because they can be pretty complex, but also on the individual, on the person. 

And one of the things I hated about surgery was like they barely spoke to their patients and I was always the one in the back of rounds trying to actually talk to the patient. So, the fact that rheumatology really required me to do that, I really liked. I also really liked how rheumatology was a field where you’re the doctor’s doctor. You are the person that everyone calls when they don’t know what’s going on. We tend to take a very holistic approach to patients, and I really liked that. And so, yeah, I got hooked really early on. 

And as I finished med school and went into training, I tried to keep an open mind when I was exposed to other fields. But if you ask any of my friends, they would tell you that I was a rheumatologist the minute I saw that first vasculitis patient because I just wouldn’t shut up about it. 

[00:02:57] Cheryl: 

That’s amazing. Well, now it’s, now my dots are connecting in my mind because it’s no surprise you named your business Connected Rheumatology, because you do love that connection to your patients, actually getting to know them. I think, to answer, you asked me what other rheumatologists have said. The one thing that comes up a lot is the, what one of them called ‘The diagnostic dilemmas’. Dr. Balderia called it that. He said he really liked the diagnostic dilemmas and the mysteries and really having to use your brain. I mean, every doctor uses their brain, but you are often — 

[00:03:34] Dr. Liz: 

You’re a detective, right? Like, you’re a problem solver. And again, I, when I was, when you’re a med student, you’re young and I didn’t really have that much experience. So, I don’t know if I would have described it that way, but now after all these years under my belt, I can definitely say that I enjoy the problem solving aspect of it. I enjoy the, honestly, I enjoy the gray area aspect of it. I am not one to follow an algorithm. I’m not one to follow, like, step one, step two, step three. I like to have some flexibility. And I like to work with the patient in that flexibility. 

I did, again, I didn’t know that was something I was going to like; I didn’t know that was a strength of mine until I really started getting into it. But now I really, I really do enjoy it and I can see how it’s very different in that aspect from a lot of other fields, you know, cardiology and GI and critical care, they’re like, if this is happening, you do this; if this is happening, you do this. And it’s, there’s still aspects of it where you can really apply the art of medicine, but it’s also very kind of algorithmic. Whereas rheumatology, there’s a little bit of algorithm and a lot of art. And that’s what I really like. 

[00:04:51] Cheryl: 

Well, okay. I have a great follow up for you because I’m going to already take us in a different direction than we planned for this part, which is so the word, I’m going to capitalize on the or focus on the word ‘uncertainty’ and ‘gray areas’ because that, to me, is the heart of what I would find, what I find as a patient so difficult having a rheumatic disease or rheumatological condition. And it’s what a lot of this, a lot of patients that I’ve worked with and people with arthritis also struggle with is this uncertainty, the lack of having, you know, like a smoking gun symptom of your diagnosis. 

Like, the example I always use for my journey is like when I got diagnosed with gestational diabetes, it was such a simple process. It was so simple. It was like, this is your blood glucose. You have gestational diabetes. Now, the managing it wasn’t perfect. It actually was pretty simple. I would got a pretty mild case. But it was like, oh, it’s black and white. Like, “Your glucose is X. You have X, Y.” Whereas in rheumatology, that uncertainty in the gray area that for me immediately prompts or triggers anxiety for me. So, how, is there something in your background that made you have a what my therapist calls like an ambiguity tolerance, like a higher ambiguity tolerance? Or how do you cope with the uncertainties? I feel like I would be, every day as a rheumatologist, I would come home and be like, what if it wasn’t what I said it was? And what if this does —? Like, how do you cope with that? How do you do this? 

[00:06:26] Dr. Liz: 

Oh, my goodness. Yeah, so, first of all, when you were saying how the uncertainty really triggers your anxiety, I would be like, yeah, obviously, because you’re human. And like, that’s the case with everyone. I mean, you just look at what we all went through with COVID, right? Like, it was like mass uncertainty and mass anxiety all happening at the same time. How do I cope? Well, first of all, so, that fear that you got it wrong is, yes, that’s very real. And I definitely have spent a lot of evenings, looking at the Internet and just talking to my, talking cases with colleagues and get, and like bouncing ideas off of them and getting, getting feedback from people because of that fear, because you are worried about getting it wrong.

But what I’ve learned, through training and just kind of my years of practice is that as much as autoimmune conditions and the inflammatory nature of all rheumatic conditions can lead to a lot of pain and suffering, it’s actually quite rare for them to lead to life and death emergencies. And so, we are given some time to figure it out. And although our tools that we use to control them are not perfect, we do have tools that we can use. And what I’ve found that really helps me actually calm that anxiety about whether or not I got it right or wrong, what helps me calm it down is actually bringing in the patient with me and explaining to them what I’m thinking.

And like, “Well, I’m thinking this and that’s why I recommend we do X, Y, Z. But quite honestly, There’s this one aspect of your case that makes me think maybe it’s actually this other thing. And this is how we’re going to tell. And I need you to help me if this is happening, because that’ll be a clue that I got it wrong, and we need to shift gears.” And so, like, having them with me along that actually helps me so that I’m not, I’m not carrying everything. And that they also understand because I think so much of the miscommunication that happens in the office is exactly that is that uncertainty isn’t communicated to the patient, even though the patient feels it, right? The patient feels it, but, and it can sometimes be scary because you certainly want your doctor to feel confident. You want to know that you’re in good hands, right? You want to know that, that the recommendations they’re making are going to help and that there’s reasons why they’re making those recommendations.

But I have found that saying out loud that, hey, there is uncertainty and it’s okay. We can still build a plan around that uncertainty. That’s actually been very helpful. I don’t know. I don’t know why and how I was able to develop this skill. I’ve come to realize it is a skill that not every rheumatologist has, or is particularly adept at. I would probably be remiss to not think it has something to do with the fact that my mom got sick when I was in residency and then she passed away. And I think that happening while I was in the midst of my medical training, I mean, I think it of course informed everything, right? Everything, how I approach illness, how I approach health, how I, ‘cause she got diagnosed with cancer. It was a bad diagnosis from the get go. 

But, you know, when you go through treatment like that rollercoaster of uncertainty and remission, but then recurrence, and then ultimately like her passing, yeah, you learn a lot. And to, I think anyone who goes through that, no matter what age they’re at, no matter who it is in their life goes through that, but to have it happen when I was young and in my medical training, I definitely think informed a lot of how I approach patient care. Even though I’m not an oncologist, I’m not, I don’t take care of cancer. But, and there’s a lot of similarities with autoimmune and rheumatic conditions. 

[00:10:59] Cheryl: 

Oh, my gosh. Well, and I’m so sorry that you went through that. And I’m also sorry my question was like, what made you so resilient? Tell me about your childhood. Like, I did. But I mean, you’re right that these, there’s such a thing as they call it like, there’s post-traumatic stress. And then, there’s post traumatic resiliency. And like some people build, some people experience both. They have a stressful event, and then they experience trauma and then also build resiliency from that. So, I think, so first of all, thank you for sharing that. I know a lot of people have gone through that. I fortunately still have my parents. I just, every time I hear stuff like that, I’m like, I’m so grateful that they’re still here. 

But, and I think your idea of naming the uncertainty, speaking it out loud to the patient, and building a plan together is so brilliant because I think, I mean, I’ve a lot of different ideas, but one of them I’ve heard from a lot of patients is that because it’s a very — let’s just take rheumatoid arthritis, for example. It’s a very optimistic time in the history of rheumatoid arthritis treatment, right? 2024. There’s more treatments than ever, better treatments than — when we say treatments, we’re talking about medicationsm — alongside lifestyle, but the medications have evolved such that the progressive nature of the disease is often slowed down significantly, which is so great. 

But sometimes I feel the disconnect and the uncertainty comes from the fact that the treatment plan is communicated in a very simplistic way, “Oh, we’re going to try this and it’s going to put it into remission,” and the patient’s like, oh, so it’s not uncertain. That was kind of my idea in 2003 when I got diagnosed. And then it did happen. I went into remission for six years, but then I came out of it and I was like, what is happening? So, it’s hard to know, like, when is the best time to introduce the concept of uncertainty. But I think you’re, I think probably as soon as possible to say, look — yeah. Yeah, but like, how do you — 

[00:12:55] Dr. Liz: 

Yeah, no, I mean, I, yeah, I think, again, those first few visits, when you get a diagnosis, you’re getting a lot of information and there’s a lot of feelings. And so, I’m not necessarily going to say it should be the second sentence. But I also think it should be early because of course the person getting the diagnosis is immediately thinking about the future they thought they were going to have, and now they’re not going to have it. And they’re immediately covered in uncertainty. And so, I think it’s actually doing a disservice to not acknowledge that. I can say, “But we’ve got a lot of tools and we have every reason to be hopeful,” but we also can’t ignore the fact that you walked in here without this diagnosis and you’re walking out with this diagnosis. And that sucks.

[00:13:51] Cheryl: 

Yeah, I think that’s, I think that’s a brilliant way to address it. And it opens the door to the patient later on, like in the journey saying, yeah, like understanding that it’s not their fault if a medication maybe works for a little while and it doesn’t work, it can help set the set their expectations correct. Like, I know that a friend of mine used to say, happiness is reality minus expectations. So, when you have expectations super, super high, then reality is more likely to be, create a deficit of happiness. So, when you say, “Hey, this, is going to be an up and down process. We’re going to have to iterate over the years, but I’m here with you. I’m your partner, your doctor is your partner in crime here,” that’s so much better than feeling like you’re just left on your own. 

I know you’ve worked in — I know whenever there’s an episode with a rheumatologist, first of all, especially like a lovely one like you, people are always like, where do I find these nice ones? Like, because unfortunately people sometimes do have a, you know, a negative experience. And but you’ve worked in — so, yeah, how do you — I was gonna say what settings, I know certain settings can allow rheumatologist to have more time. What would you say to somebody who is, doesn’t feel happy with their partnership with their current rheumatologist and was looking for a new on?  

[00:15:16] Dr. Liz: 

Yeah. Yeah. So, just to give some background as far as my perspective to answering this question. So, the first part of my career in LA, I worked in academics. So, I was an assistant professor at USC and Los Angeles USC partners with LA County Hospital. And and so I worked in both a county type of public institution and kind of what I call the ivory tower, like academia. When I left USC and moved to Texas, I opened my own concierge practice. And the reason I did that was because the previous system I’ve been working in and didn’t really allow me the time that I felt like I needed. And plus, I really enjoy having that time to really get into the details with patients that’s going to ultimately help them. And so, kind of taking myself out of that system and accepting cash was my solution to that. 

I then took a little detour and got into health tech. And worked with a team of people who had very high aspirations of kind of really helping provide access because there’s a lot of places, especially in the United States, but really all over the world, where it’s just tough getting into a rheumatologist, much less finding a rheumatologist that you click with, but just getting in can take a long time. And so, we were going to provide virtual rheumatology care alongside like lifestyle medicine. And so, I did that for a few years. And now, I’m back to trying to figure out a method that will allow me the time, which gets to your question of what is it, and like, how can you find doctors who will — the way I think of it is kind of partner with you and meet you halfway. 

And, I can absolutely attest that it’s a challenge sometimes. It’s, I mean, sure you have different personalities, right? Not everyone is going to click with everyone. That’s just not, we’re all human. Also, our system doesn’t help. Our system that kind of requires or — what’s the way to put it? Doesn’t require, but just puts a lot of pressure on the doctors to see as many patients in a particular day as possible. So, that means you only end up getting 10-minutes of their time. So, that’s also another pressure on doctors, which can then impede on the relationship you can build with them. 

I would probably say, when you first meet a doctor, to give it a few visits to see if even if you’re not given enough time, if the time that you’re given, if you feel like you have all their attention, or if they’re always looking at the computer. See how amenable they are to asynchronous communication. Like, use that patient portal. Don’t overuse it. Collect your questions and use it in that way. But see if you’re if you can get a response, see how well their office works. See who else in the office can maybe address some of your concerns. Do they have a nurse practitioner, a physician assistant, or any nurse, like, ’cause that’s, I think, another thing if the office is disorganized, that can just add fuel to the fire. And so, how organized is the office to get your issues addressed? I would say to start with those things. 

[00:18:33] Cheryl: 

That’s so brilliant. And then, I want to make sure we take a second to define what is a concierge practice for those who might not have heard of it. 

[00:18:41] Dr. Liz: 

Yeah. So, there’s two terms out there. There’s concierge and then there’s like direct care. And it can be direct primary care, direct specialty care. Both of these types of clinics and providers work kind of outside the system, meaning that they don’t work with insurance companies. And even as I say that, it’s not entirely true. So, by definition, a concierge practice will bill your insurance for visits, but will, on top of that, charge a monthly fee to cover back-and-forth communication, paperwork, and anything like that. This allows the doctor to have a smaller number of patients and still make their bills. And when they have a smaller number of patients, they’re able to spend more time with each patient. 

Direct care is similar in that it allows them to have a smaller patient panel, but they don’t bill insurance. And so, 100% is coming from a monthly fee usually. And that gets you visits, it gets you usually some sort of asynchronous communication with your doctor. But again, it’s all about doctors trying to figure out ways to limit the number of patients that they see, not so that they can go spend time like on the golf course or at the beach, but that they can give more time to each patient.

[00:20:02] Cheryl: 

Yeah, I think it’s really good to know that there are these options out there and there are — and it’s not just in the field of rheumatology or doctors. There’s also a lot of like, I, as an occupational therapist, have seen a lot of OT’s also try to find like — I mean even what I’m doing is a creative way to, you know, assuming we can’t completely overhaul the U.S. healthcare system, although I would love to do that, I don’t have that control — say, okay, how can I work, how can I provide something that the patients need in a creative way that’s not, that is better than the standard of care that is just more. That, yeah, and a lot of times patients just don’t even know what words to look up. Like, I didn’t know before becoming like a, quote unquote, ‘professional patient’ or chronic illness patient, what concierge is. That’s the person that tells you where to go out for dinner or whatever. 

[00:20:53] Dr. Liz: 

Or it’s thought of as like super, super fancy, or super expensive. And there certainly are those high-end options, but there’s also more affordable options, both in specialty and in primary care. 

[00:21:05] Cheryl: 

Right. Right. So, we’ve talked about like ways to find a rheumatologist. And I think even though we live in this technological era in 2024, there is still so much word of mouth when it comes to finding a rheumatologist. And I think I see it every day, I’m on Facebook groups I’m part of people will say, “I’m in Austin. I’m in Miami, who has a good rheumatologist?” Honestly, sometimes that’s great to actually have first-hand experiences. But then once, so once you have, once somebody has established a relationship with a rheumatologist, do you have any other tips or advice for patients for making the most out of that relationship or making the most out of those 15-minutes or 20-minutes that they have? What would you suggest?

[00:21:56] Dr. Liz: 

I would definitely say, first of all, to prepare for it the way you would prepare for any other meeting, right? Like, you want to know, you want to get something out of it. You don’t want to just show up and have the doctor run the show, because if you do, the doctor will run the show and it’s not guaranteed that you’re going to get what you want out of it, that you’re going to like what you get out of it. And so, you have to show up with your own agenda and know what you want. And maybe everything’s going well, and you really just want to check up on your labs. You want to make sure that you’re up to date with all the other screening and vaccinations that you need, and that’s fine. 

But you, maybe you have some other issues that you want to talk about, whether it’s paperwork, whether you’re having new symptoms. Whatever it is, you need to be prepared, have it written down, write your questions regarding it, write specifics about what’s going on. If you’re having a new symptom, you need to really think about that symptom and like, when did it start? What is it? What makes it better or worse? Have, you know, is it similar to something you’ve had in the past or is it completely new? Also, I’m a big fan of doing your own research, right, and going online. And I know this is a little controversial if you ask doctors, or at least if you ask doctors in the back room. Not every doctor loves to find their patients are doing their own research. But I’m like, what’s the point? What’s the point of the internet if we can’t use it? 

And so, so in that vein, I would recommend doing your own research and using that research to then inform some of the questions that you have and bringing those questions. I also am a big fan — and again, this might take some time to figure out if your doctor’s up for it — but in the same way, any productive meeting would say, would send that agenda ahead of time to everyone in the meeting and say, this is what we’re going to be talking about to make sure that every single minute of that meeting is used productively. I’d recommend doing the same thing with the patient portal and sending a message to your doctor saying, “Can’t wait to see you next week. I’d like to talk about X, Y, Z.” 

And even if they don’t respond, and even if they’re looking at it the minute they walk into the room with you, they’ve seen it, and they immediately can then judge the amount of time they have with you and make sure that they get to what you want to talk about. Otherwise, it’s so easy to just get like steamrolled and you don’t get a chance to talk about what you want to talk about because the doctor is just kind of looking over labs. They’re going to quickly look at your joints, and then get out of the room. And so, if they know ahead of time that, hey, I want to talk about these things, they will make sure to have time for that.

[00:24:26] Cheryl: 

That’s exactly what I do with my rheumatologist, and it’s so nice because there are times she’s able to — I asked her about the shingles vaccine, I said I want to talk about the shingles vaccine because I’ve heard I should get it, and she was able to just respond to that. And this is, again, not every doctor is amenable to the asynchronous communication on the portal. But she was like, oh yeah, I’ll just, this is the one to get. Go for it. You don’t need to talk about it at the appointment necessarily. So, I love your idea of preparing for your doctor’s appointment the way you would prepare for a meeting. I just like that construct because it is a meeting. 

[00:24:59] Dr. Liz: 

Yeah, it is a meeting. And you want to get something out of it and you see this person, this person is a very big part of your healthcare and sometimes you see them like three or four times a year. And you want to make sure that time is spent wisely. And then, you feel when you walk out of there that your questions were answered, that you’re confident in what y’all are doing. Because when you don’t get your questions answered and you don’t feel confident is when like the seeds of discontent really can start to flourish.

[00:25:30] Cheryl: 

Yeah, and you mentioned preparing a summary of how things have been going with you, right? How’s your pain? How’s your fatigue, swelling, morning stiffness? And most patients, I think, or at least every rheumatologist I’ve seen, they ask you at the beginning, rating your pain on a scale of 1 to 10. Again, I didn’t prepare you for this question, but I’m actually really, one of my favorite little topics of conversation/rants/soapboxes is the limitations of a 1 to 10 pain scale. How, I mean, what are your thoughts on like the aggregate, just like rate your pain on scale 1 to 10, as it relates to the kind of pain that we people have with rheumatoid arthritis? And do you have any, like, how do you discuss pain with your patients? 

Because I find it, I’ll just say, I’m not gonna say the whole soapbox, I’m gonna restrain myself, but I find it an impossible answer question to answer, like the aggregate 1 to 10 pain, but I can answer in terms of stiffness, soreness, dull ache, stabbing. My sharp stabbing pain is almost from rheumatoid arthritis, it’s always been like a zero. It doesn’t feel sharp and stabbing, but it’s still something. But how do I aggregate that into a 1 to 10? I literally don’t know how to do that. I feel like that’s breezed over. They’re like, oh, it’s a number. They put a number onto it. So, it’s objective, even though it’s completely subjective. Anyway, what are your thoughts?

[00:27:02] Dr. Liz: 

My thoughts are that the pain scale is bullshit. I mean, just to put it frankly, I mean, your difficulty in coming up with a number matches my difficulty in interpreting the number. ‘Cause I’m like, well, like, I need more than a number. Now, I think that unfortunately, the fact that this pain scale has now been in use and in standard use now for over 20 years, I think, that not every doctor necessarily thinks about it in the same way I do. And so, they will really kind of hang their hat on that score. And that can unfortunately build up a dynamic between their doctor and the patient where the patient will just say a low score just to kind of appease the doctor. Or the other side is, say, a super high score in order to make a point. 

And either, both are not necessarily telling the truth. And what I want to know is, yes, about your pain, but what’s more important to me is, well, how is the pain interfering with your life? Because the booger bear about autoimmune conditions and rheumatoid arthritis is that pain is part of it. And so, I don’t always like to approach things from a point of we’re going to get your pain to zero. Like, pain is, we’re going to eliminate pain from your life. That’s not realistic. What I do think is realistic is how can we make it so that you’re living the life you want to live, that your good days far outweigh your bad days, and that when you do have those bad moments, that we have a plan to deal with them. That’s what I’m more interested in, and that is absolutely not captured in a number. 

[00:28:52] Cheryl: 

Yeah, I could not agree more. And that’s very congruent with kind of the occupational therapy training I’ve had, which is about functioning in your daily life. Whether that means work around strategies and the underlying issue is not solved, right, like your stiffness is still there or lack of joint range of motion, but you can work around it and function, or you can actually remediate sometimes, but yeah, I’m, anyway, I’m glad, I mean, again, to be like, we’re either, we’re both wrong together or we’re both right. No, I mean, it’s a very, it’s just I find it strange that it’s, perceived in the health care system as such an objective thing because it’s a number when it’s like intrinsically the most subjective thing is putting.  

[00:29:34] Dr. Liz:

I mean, I understand, I understand the reasons, right. Again, especially when you’re providing medicine to the masses when you have to, they’re trying to standardize and kind of algorithmatize providing care and in an effort to make sure everyone gets the same standard of care. Because before you did this, the way you got care and the success of the care you got was highly, highly, highly dependent on the qualities of the doctor that you saw. And so, the reason we standardize things is so that someone in California can get the same quality care as someone in Kansas and someone in Missouri. And paying for the exact reasons you were stating is difficult. 

And what we were seeing in the 80s and 90s was that it was being undertreated, and it was not being listened to, and it was not being approached in a standardized way. And so, the score was an attempt to try to standardize it. I think, though, two things, I think one that it was over, it oversimplified it. And two, unfortunately it’s only now recently that people are realizing how damaging it actually is. But for a long time, it’s, “Oh, we solved it. We now know how to measure pain. We now can measure the success of our treatments based on this number.” And we’re now seeing that’s really faulty.

[00:30:59] Cheryl: 

Yeah, I think, I mean, it’s like Einstein said, like, a system should be as simple as possible, but not simpler. Like, I think, I do think it’s, I can see the needle moving and I can measure progress when it comes to a specific subcomponent of pain. So, just to be clear, if it’s soreness, like a dull ache, stiffness, I can definitely see, okay, I’m a 4. Sometimes and I’m down to a 1 after a treatment that works, like, that is meaningful. Just I think the aggregate is the hard one where you’re like just — and considering all types of pain, and what is your pain, 1 to 10. 

It’s, I saw my husband go through a kidney stone recently, kidney stone for the first time, and yeah, I mean, first of all, I’ve never seen him in even like mild pain, moderate pain, maybe like once when we were moving boxes and he like tweaked his back, but that’s it, right? So, to see him go, I mean, he was like, I’m at like, I don’t know, I guess if I was like being tortured with a lava, it would be a little worse. Maybe I’m a 9. 5? He’s an engineer, right. So, yeah, but he’s at the top. Like, he can barely talk. He’s sweating, shaking. I’ve never experienced that. I mean, the worst pain I’ve had is, either my C-section recovery was bad.

Probably the worst. 

But, anyway, so that’s, a whole other thing. But I think just for anyone listening, know that if you’re having a hard time putting your number to your pain, you’re not alone. And it’s okay to tell your, to even — I’ve coached people in my Rheum to THRIVE groups to say, it’s okay to ask your doctor or to tell your doctor, put it out in the open. “I have a hard time answering that because there’s, I kind of have stiffness and soreness. Like, it’s not like I’m being, it’s not sharp. So, does that mean it’s a zero? Or is it like a two or three?” 

[00:32:42] Dr. Liz: 

Yeah, no, I mean, yeah, I think that’s a good recommendation. Just, like, just to say, “I don’t know how to answer that question,” and then follow it up with, “I can no longer do this and I used to be able to,” and that, that gives the doctor something, something to work with.

[00:32:58] Cheryl: 

Yeah, what can you can and can’t you do? And then, that’s something you can actually make a goal around. Like, I tell, yeah, I always tell people you can literally say the most, the biggest like minutiae of your life. You can say, like, “I can no longer tie my hair in a ponytail because my fingers are too stiff. I can no longer turn the pages in a book.” And you’re like, okay, well that paints a picture to them. So, people can argue with your subjective report, but they can’t argue with what you can and can’t do. 

[00:33:23] Dr. Liz: 

Yeah, I had a patient that first of all, I only saw virtually. So, right there, there’s like a little bit of a disconnect because you definitely lose something when I’m only ever doing it on the camera. And so, when you’re doing everything on camera, it really requires you to ask a lot of questions and really listen hard to what they’re saying and have to read in between the lines. And so, she was constantly telling me how she had pain, but it was okay. It was okay. And it wasn’t that bad, and it was okay. And she really didn’t want to take any medicines. And so, it was, okay. It was okay. It was okay. 

And then, a few months go by and I see her a couple times, and this was always a thing. And honestly, I was happy to hear that she was doing okay. And so, I was, yeah, I was happy that we didn’t really need to escalate her therapy. And then, she comes in for an appointment off schedule, which right there is a clue, right? It’s like, okay. And she starts, though, by saying she’s fine, she’s fine. Well, you made this appointment. You’re clearly not fine. 

And then, she starts describing how she’s developed all these things that help with her pain. And one of them is she will take these Epsom bath salts. Great. But then, she describes how she gets in and out of the tub. And I was like, wait, what? And how she needed help getting out of the tub one time. And I was like, that is not the sign of someone who’s doing fine. And so, like, you pull on that thread and then I start finding out how she had to compensate and how she was now going downstairs was a little different, how she had to go step by step. And if you’re just asking, “How are you, what’s your score number,” I would never have caught that. But finding out that like you need help getting out of the tub you can’t really go downstairs, it’s like, girl, you’re not doing fine. And part of it also was her, right? Like, I needed to reflect that back to her because she had been doing that for so long. She hadn’t realized that, a 41-year-old woman shouldn’t need help out at the tub. 

[00:35:26] Cheryl: 

Yeah. Yeah. And for the record, just in case anyone has more, let’s say you’ve been living with severe progressive RA since you were like 12 and you do — there are cases where there are, you know, JIA, there are cases where people do, like, that’s where their disease is at. But what you’re saying is that she was at a state in her care where she actually, it could be so much better, right? 

[00:35:50] Dr. Liz: 

Right. No, you’re absolutely right. This is all very specific to any particular individual. And how long you’ve had your condition, what your condition is, all of that. But given her case, right, like that wasn’t, and it wasn’t what she was also expressing to me. 

[00:36:06] Cheryl: 

Yeah, that’s, it’s, I mean, this is why I think, I always say, like, one of my other soapboxes is that, it’s such a, it’s such — what would you call it? Just like it’s a tragedy that so many people with inflammatory arthritis are accused of over exaggerating when the majority are severely under exaggerating their pain and I was totally guilty of that, too. It’s fine. It’s fine. And, actually, okay, I’m going to hyper fixate on something that you said, which is that you said she didn’t want to take medicines. And that was actually going to be, I want to use some of this time with you, because I feel like one of the things I love about you is that you’re, like, you’re evidence-based and you’re very informed as to the gray areas when it comes to things like the non-medicinal methods, like lifestyle, how that can be helpful. But you’re like, I feel like so often people are on one pole or another. They’re like medications are the only thing that’s going to help and everything else is bunk. 

Or they’re like, Western medicine is terrible and Big Pharma is terrible and you should not take those meds. So, the fact that you’re, you are okay. You are, again, in another gray area, within a gray area of rheumatology, you’re in the gray area of understanding the role of medications alongside the role of lifestyle. But the first thing I want to say is, I’m pulling on the thread throughout my work of this medication hesitancy. And it’s not something I personally experienced, actually. I was very gung ho, because I’m like, I’m in so much pain and you’re telling me there’s something to make it better? And it’s just a practical thing to me. And maybe it was just I just was naive potentially that time, right, there wasn’t the Internet, really, it was 2003. But long story short, I know that a lot of patients are very hesitant what do you find, I don’t know, what are your thoughts on medication hesitancy? How do you help your patients wrap their minds around — obviously, it’s still their choice at the end of the day what to do in their bodies, but how do you help them potentially wrap their mind around medications?

[00:38:09] Dr. Liz: 

It’s interesting that you didn’t have, you didn’t feel that hesitancy. I think —

[00:38:15] Cheryl:

I trust — I will say, first of all, I actually think something I should say is I, even though I had been medically gaslit by doctors, I had a very untraumatic childhood and one where I could trust adults. And so, I perceived those medical gaslighting doctors as the outliers and that my — now I was back on track with the expert, which was my rheumatologist. And I think my mom is very practical and had a good influence on me, too, where she was like, growing up, there was no, she was like, okay, you have an ear infection, we’re going to take you in a doctor. It’s there wasn’t any sort of messaging around natural being better or worse. It just was, like, problem solving, and my doctor just was so nice, my rheumatologist, and just really explained — but I didn’t find out till later that my mom had, I will say, just for the record, sorry to other people who’ve listened have heard the story already, from my mom on Episode 100, but she asked, when I wasn’t in the room, she asked, she said, “Well, Cheryl has one more year,” I’m at Vassar College in New York. I’m from Seattle. 

So, I had one year left of school. They’re like, oh, this medicine is like just to give herself an injection once a week and then refrigerate it. And that’s a lot. Can she just start these in a year? Like, can she just start these when she’s done with school? Like, she questioned. And the lady, the nurse told my mom, because my numbers were sky high on everything, like it was, everything was off the charts, literally, they said, “She could be in a wheelchair in a year,” and that was, not to say that being in a wheelchair is the worst fate in the world, but they were like, this is how progressive this can be. And that had, that was that light bulb for my mom to be like, okay, we’re gonna go all in on this. And I don’t know, she didn’t communicate it to me in those words, but I just was, at that point, I had a lot of trust in adults, trust in the experts. And I’m a nerd, like, I’m at a very academic school, like I’m surrounded by really intelligent people and who, so I still really trusted authority, which I know a lot of people who grew up in more turbulent, traumatic upbringings didn’t have that luxury of trusting the experts. But I did have that. So, that’s my long story. But again, yeah, your perspective, I would love to hear. 

[00:40:25] Dr. Liz: 

No, it’s an interesting insight that I’m going to need to think about. A little more about the influence of our relationship to authority and how that translates, but that’s for me to figure out later. 

[00:40:39] Cheryl: 

You know, I trusted the police. Like, it’s all this, it’s like the — 

[00:40:41] Dr. Liz: 

Right, right, right. 

[00:40:42] Cheryl: 

Intersectional about that kind of thing. Yeah. 

[00:40:45] Dr. Liz: 

I can tell you that I didn’t, you know, I didn’t necessarily grow up with that kind of authority problems. That being said, I understand the medication hesitancy because I am hesitant. I am the last person. I will not take Tylenol, I will not take Ibuprofen. Now as I’ve gotten older and I’ve softened, I will reach for stuff. But I don’t, I just understand that because I also don’t want to take it. And I can’t even explain it. I could tell you it’s because of side effects or whatnot. But really, I think it’s just tied into I need to be right and perfect and somehow taking medicines proves I’m not right and perfect. I don’t know. That’s for my therapist. But anyways. [Laughs]

[00:41:35] Cheryl:

I think that’s huge though, that maybe, like medicines are like a crutch and that you want to be able to tough it out on your own, like anxiety meds, I will say. So, I shouldn’t say that I did, I definitely didn’t want to take anxiety meds at first because I wanted to conquer my anxiety through working really hard at therapy.

[00:41:55] Dr. Liz: 

And there’s also this idea of once I have the bottle, then it’s like this is all real, right? this is really happening. This is like my life now. and that’s, not fun. It’s not fun to have to face. And I don’t have an autoimmune condition, but I have to take medication for other things. And when I, yeah, but I went and picked up the medication and brought it home, and I was like, I’m gonna have to be on this for who knows how long. I just cried. I just cried. Even though I’m a doctor, I know the deal. Like, I knew this was the right thing to do, but like it’s no fun to have to face that. Now I’ve gotta deal with pharmacies and now I gotta deal with refill. It’s like, ugh. So, anyways, I understand the hesitancy. 

And so, I think that kind of helps me have a little layer of compassion and patience that maybe some of my colleagues who don’t necessarily face that have. I also, though, have a very clear understanding of the risk of untreated autoimmune and disease like rheumatoid arthritis. And just the nurse kind of laid out for your mom, there’s sometimes we have some leeway for time to get used to it. And sometimes I would really, really, really recommend that we act now. 

[00:43:16] Cheryl:

And when you say act now, you mean start with the medication? 

[00:43:18] Dr. Liz:

Start with something, right? Start with something. So, that’s like for the medication. The other thing though is like taking medications does not mean lifestyle doesn’t affect it. I think that, again, because we don’t have a lot of time often with our doctors, there’s an assumption that because the doctor wrote you a prescription, they must not, quote unquote, ‘believe’ that diet or lifestyle — I would say that just from my knowledge about rheumatologists, any rheumatologist worth their salt who sees patients in a day in and day out understands how much lifestyle plays a role. But we don’t always have the time to really get into it because those are lengthy conversations. 

And it then becomes a matter of the condition you are facing is not every condition is the same as far as the risks that condition brings, and kind of at what level of severity you are at that particular moment. So, switching to an anti-inflammatory diet, looking at your stress management, making sure you’re getting sleep, making sure you’re getting movement, and sunshine on your face, and surrounded by people that support you. All those things are great and will support an immune system to kind of rebalance it. Will it do it as fast as some of my medications? Probably not. And so, that’s where you have to kind of weigh what you’re actually dealing with and what’s the risk of that versus these tools. Is that, does that make sense? 

[00:44:48] Cheryl: 

A hundred percent. I have, I use the same language sometimes. I mean, I, first of all, my role is never to like counsel people directly on medication, but because I am open, I didn’t know it was like controversial to just be happy about taking medication for RA until I started being on social media. And they’re like, you seem happy about it. I’m like, right. I don’t, I don’t feel this is just me, my personality. I don’t feel bad about wearing glasses, right? but there’s this cultural, I think, pressure to say that, well, if you take medication, you’re failing somehow to control it naturally, which is just not my worldview. I don’t — look, I think if you took two people side by side, one is in remission through medication that works. It doesn’t have a lot of negative side effects. And one is in remission through natural methods. I don’t think like one is better than the other, right? It’s, they’re just, they’re both where they want to be, you know, and so — 

[00:45:49] Dr. Liz: 

so I’ll tell you just to give more context as to where, like, my personal experience with this. So, we talked about my mom. So, she was diagnosed with ovarian cancer. And she went into chemo. She like, got treatment with chemo. Alongside chemo, she was taking all kinds of supplements and she changed her diet and she, it’s an effort to do everything you possibly can when you’re facing something that’s hard and scary. And that includes, the hard medicines as well as all the other things you can do. We had her for three years before she passed. And I can tell you, especially ‘cause I was, I was a resident at the time, people’s experience with chemo can vary widely. But most of the time, it’s not great, right? Being on chemotherapy is hardly a good time. It can really wreck a person. And those years that someone might have to be on chemo are not typically years that they’re traveling or they’re doing, kind of thriving, right? They’re really focused on trying to treat whatever the issue is.

The three years that mom was on chemo, we still traveled. She still was living her life. She was laughing. Of course, she had bad days, but it wasn’t the type of chemotherapy I was used to seeing, especially with my patients that I was taking care of in the hospital during training. She then decided to stop chemo because she wasn’t, it wasn’t going into remission and she went all in alternative therapy. And she passed four months later. And so, the way I look at it, and I’ve had many, many years — I mean, she passed away now, 18 years ago — many years and also like experience of being a doctor and like what you, how you grow in that way to look at it. 

And I have looked at it and that all those things that she was doing to support herself while she was getting the chemotherapy was doing something. There is something to it, but is it enough to cure something that’s as serious as cancer? No, right? And so, even though, again, autoimmune conditions are not the same, I think looking at the condition and understanding the severity of what you’re facing from that condition and then understanding all the tools you have available to you, and how best to use those tools. That’s the way I approach it.

[00:48:25] Cheryl: 

I appreciate that. And I think, you know, while rheumatoid arthritis, let’s say, for example, it isn’t as immediately life threatening as cancer, I am informed as to the fact that it’s typically before the current era of medicines, RA is associated with a 7-year reduction in lifespan. So, that is, that in that it depends on how you define life threatening, right? So, just to go along with it’s not going to be as fast as what your mom experienced, to have, again, I’m so sorry that, you know, that happened and some of the smartest people in the world have done the same thing. Steve Jobs, pancreatic cancer. Just didn’t trust the medical system. Did all the juices and all the everything, and he passed away. That’s not to say we can’t just cherry pick anecdotes. But there’s a lot of evidence. Obviously, the chemotherapy is alongside whatever else you do is more effective than chemo, than non-chemotherapy. 

[00:49:27] Dr. Liz: 

And just going back to a point you made earlier about how, especially with rheumatoid arthritis, like the way we treat it, the way we approach it, is night and day than how it was, even 30 years ago. So, I’ve been practicing for 15 years. A lot of my mentors were doctors, that worked in the age of only prednisone, right? Where only prednisone and like gold shots they would use to treat rheumatoid arthritis. And so, at that point, the art and the field of rheumatology was actually the art of palliative care and like holding someone’s hand as they slowly went into disability. 

And in the age of biologics that started with rheumatoid arthritis and now are impacting almost every condition we have in autoimmunity, it really has changed the game so much so that the field of rheumatology has now become almost as popular as cardiology and GI amongst internal medicine docs. So, in my old life, when I was at USC, I was heavily involved with training doctors and our medical students and our residency, fellowship programs, excuse me, fellowship programs where people choose to go into rheumatology became very competitive because now it became a field where we can make a real impact. We can do something. And really change someone’s life. And we don’t necessarily, we’re not the doctors of disability anymore. 

[00:50:55] Cheryl: 

Yeah. The prognosis. And that’s why I always tell patients when you’re — the thing you need to be careful about is comparing apples to apples and oranges to oranges when it comes to accessing other patients stories. So, on this podcast, and we’re now over 150 episodes, you’re going to have, there are some stories of people who got treated. They’re on the same treatment they’ve always been on, and they’re doing great. And then, there’s people that are, that are more severely disabled, and the thing that I think happens sometimes is patients get diagnosed, and then they join like a Facebook group, and they access all these stories that’s like a mishmash of some people who have had it since the 70s or 80s or 90s who never got that really aggressive treatment. And then, they have significant impacts and joint deformities and systemic symptoms. And then, if you’re diagnosed in 2024, you don’t necessarily, you need someone to tell you that’s not necessarily going to be, that’s not most likely going to be your prognosis. You’re going to be able to slow down your disease with these medications. Just statistically, that’s most likely what’s going to happen. 

And I do want to make a plug for the 2022 American College of Rheumatology Integrative Guidelines for — sorry, Integrative Health Guidelines for Rheumatoid Arthritis. This is the first integrative health guidelines that the ACR has done, as far as I know, for an inflammatory arthritis. And they look at, there’s a 500-page PDF of all the evidence that they took. And it’s a multidisciplinary team including patient advocates. And the number one recommendation — this is for, the integrative means non-pharmaceutical in this case. The number one was consistent engagement in exercise. That was found to be the most effective non-pharmaceutical and non-medicinal treatment. And I find that very, that’s very consistent with my experience. For me personally, exercise, especially strength training, has moved the needle symptom wise more so than dietary interventions, yet the popularity according to what I perceive on social media is that most people are very highly interested in dietary interventions, of which the only one that was found to have any good evidence was Mediterranean overall anti-inflammatory.

[00:53:15] Dr. Liz: 

Yeah, no, I mean, so there’s a couple aspects of this whole argument, right? There’s the actual research and what the research shows. There’s the discussion around why certain research is done and why other research isn’t done. There’s also what I’m going to call like the marketing aspect of all of it, right? And so, they don’t, that’s not all the same. Like, you’re right. Like, a lot of people are interested in diet changes. I think, I don’t really know exactly why it seems to me that it’s rooted a lot in just dietary interventions for a lot of things, like heart disease was often, years ago, was attached to certain diet. And so, it’s kind of in our collective consciousness to think that what we eat affects our health. It’s also kind of common sense, right? Like, well, surely we are what we eat kind of thing. 

[00:54:08] Cheryl: 

Yeah, and it’s a decision we have control over that happens multiple times a day versus exercise is something you do a few times a week. I’m making food choices, four, or five, six times a day. So, yeah, I think that makes sense.

[00:54:23] Dr. Liz: 

Yeah. And so, when you talk about, well, the Mediterranean diet is the one that has the most evidence. It does. And it’s actually, an anti-inflammatory diet is what I will usually recommend with the caveat acknowledging that it’s the one that’s got the most research done, again, because it was tied to heart disease. And that’s where the research started. I also kind of root all of the lifestyle stuff. I get real practical with it because I’m just like anyone else. I’ve tried different diets and tried different programs and I am well aware of how restrictive it can all be and how it can take over your life and kind of it become your personality. 

And I think that we need to give ourselves some grace to live our lives. And, I have an old colleague of mine who, she’s a psychiatrist, so she’s not at all in rheumatology, but really pushes like lifestyle and is anti-psychiatry meds. And I just have always thought to myself, well, sure. If I could go live the Buddha life up in a Zen mountain, then maybe, all my health issues would go away, but that’s not practical. Like, I live in, in, I guess it’s 2025, like I live in a modern society. I gotta have, I gotta figure out a way to live my life in the world that I’m in. 

[00:55:54] Cheryl: 

I mean, yeah, you know, preaching to the choir, I mean, I think it might — in my case, because I also have a diagnosis of gastroparesis, which was made the same year as my RA, and I have, I do follow a couple dietary recommendations. I don’t really like to think of them as diets, but there are certain things I avoid because they trigger my gastroparesis and also a history of recurrent SIBO or SIBO, like the small intestine bacterial overgrowth. And I’m just, I just literally could not be less interested in having any more of a restricted diet than I already have. I’ve toyed with trying a couple of things that are more anti-inflammatory, did not notice a single improvement in my rheumatoid arthritis, so I’m like, okay, this is like, I’m gonna die someday. I don’t want to look back and be like, I obsessed over food. I just, it’s not intrinsically interesting to me. Food is just not, maybe because I’m an athlete too, like, exercise is way more interesting to me. 

And actually, sleep. There’s so much evidence. I was just talking to you before we started recording that I got a good sleep last night and I feel like a different, I said I feel like my brain has gotten a shower. That’s just like the phrase that came into my head, I just, my brain fog is better, my energy is better, those are the things. And again, everyone’s different. Some people, if the needle was moved a lot for me symptom wise with diet or, of course I would do more nutrition interventions, but there is a point at which we have to say enough is enough.

And I always put a warning when we talk about food and nutrition and autoimmunity that people with autoimmune disease are overall at a higher risk of developing something called orthorexia, which is eating disorder where people are obsessed with eating only clean or healthy foods. And like other eating disorders, it’s about control, right? But it doesn’t, it’s insidious because it doesn’t look dysfunctional because the person’s eating, quote unquote, ‘healthy’. So, I really recommend people, like, just be mindful and when mindful of that risk. And when you approach things like lifestyle interventions, whether it’s exercise, diet, sleep interventions, stress management, I would put into that too, look at it with a mindset of curiosity rather than an anxious, this must work.

[00:58:09] Dr. Liz: 

Yeah. Yeah, I think, I agree with all of that. I have certainly seen people kind of go a little too far with their lifestyle changes. And the other thing I think that we have to be mindful of is there’s the control piece and which I get because when you get a diagnosis like rheumatoid arthritis, it can certainly feel like you’ve lost all control of everything. Like, you’ve been kind of betrayed by your body. So, I can understand kind of swinging to the other side and trying to get control of as much as you can. And what we eat is certainly something that we can control. But the other thing I think that’s kind of underlining a lot of this is when we focus so much on lifestyle, it’s well, if lifestyle can fix it, then maybe lifestyle was the original problem. And with that comes blame that somehow this is your fault. 

[00:59:07] Cheryl: 

It’s not true at all. No.

[00:59:07] Dr. Liz: 

Yeah. And it never in training, it never would have occurred to me. And then, when the first time I had a patient, I’m sitting down, it’s, “You have rheumatoid arthritis,” and it’s not uncommon for people to get emotional. And so, she got emotional, but then the first thing out of her mouth was, “What, how did I do this? I can’t believe I did this to myself.” And that blew my mind and broke my heart. ‘Cause it’s like, no, no, no. This is not your fault. 

[00:59:35] Cheryl: 

Yeah, I could not agree more. I mean, I think, it’s, I think disentangling correlation from causation is just so crucial. Umbrellas don’t ‘cause rain just because we often see, this is me being from Seattle, you see umbrellas when there rain doesn’t mean it caused it. In the end, you know, just because lifestyle can help like you said doesn’t mean that the lack of that lifestyle previously caused you to develop a condition. I think for me it helped me that I was diagnosed at the peak of, or I got sick at the peak of health, with nothing else happening. Like, nothing else, nothing I could have done in my mind made sense to cause it. So, I guess I didn’t have that self-blame, but I’ve seen that in my support groups. So, often people feel like they must have done it. And even if, let’s say you’re a smoker, smoking is a risk factor for RA. There’s tons of people that smoke that don’t get RA. So, in your case, there’s no certainty that in your body smoking is exactly what caused it, right? It’s a multi-dimensional, like, it’s environmental things like could be a virus that you got, could be something else that triggered it, it could be stressful event. Could be genetics. 

[01:00:39] Dr. Liz: 

Genetics. But also, genetics. The way I always think of it is. you have a certain genetic makeup that we’re learning more about, but we certainly can’t point to one gene, right? Like, it’s not just one gene. But you have a certain genetic makeup. You are then exposed to some sort of trigger, either an external trigger or internal trigger. And it, by the way, it’s probably more than just one, right? Like, our bodies and our immune systems are pretty resilient. But if you have repeated triggers over a course of time and you have the right set of genes, it just will then lean autoimmune. And then, that ball gets rolling. And why it happens to one person who’s exposed to certain triggers and not to another, like, we don’t know. We don’t know. But none of this is the individual’s fault. 

[01:01:31] Cheryl: 

No. I think that’s, it is very healing to hear that, you know. I remember the first time I had my psychologist, kind of, or just the validation of her saying, “You’ve been through a lot,” like with your health. And I was like, oh, like an objective outside person thinks that, right. Or and that’s not your fault. I think that’s super, super powerful. Oh, and the other thing I just, before we move to the next topic, I wanted to make sure to really emphasize, I think if people take nothing else from this conversation, I think it’s important to just psychologically, if you’re like a newly diagnosed patient, understand that the choice to not medicate has a risk. And that’s your risk to take. But I think people tend to myopically focus only on — because they’re so informed as to the potential side effects of medications, they exclusively look at the risk of side effects versus the benefits of a non-medicated, versus both the risk and benefit of each. Does that make sense? 

[01:02:40] Dr. Liz:

No, no. I will say that to my patients all the time. Because they’ll tell me, they’re like, “Well, What if I don’t do anything?” And first of all, I invite those kinds of questions. Those are absolutely the type of questions you should be asking. They’re fair. Well, what are my other options? And what if I decide not to? Okay, well, let’s talk about that. What are the risks? Because there are risks. It’s not just the risk of the medicine, it’s the risk of untreated disease. 

[01:03:09] Cheryl: 

Yeah. And I really — and you see more patients than I do in terms of a one-on-one talking about medicine. But that’s something that most people just do they gloss over in their head and it and I think it’s really important to bring that, just bring it into the open. I do think definitely there’s, you know, a logical fallacy called the ‘Natural is better’ fallacy. That is a documented logic — our brains have these little shortcuts we tend to make sometimes that are just illogical. And so, I think it’s — and I think, you know, like you mentioned the psychologist or psychiatrist who’s, you know, I just, I try to understand but I’m like, I don’t care. Now, this is just where I’m at.

Like, I take anxiety meds. I’m less anxious cause of my anxiety meds, like, I don’t care that I potentially could be — like, it works, and the same with my rheumatoid arthritis. That’s who I am. And again, if you’re listening to this and you’re like, no, my value system, my goal is to do X, Y, Z naturally, like that is 100% your right, but it just feels like there’s very few voices out in the Internet saying, hey, I don’t feel any shame about taking medication. Yeah, I don’t feel like a failure or whatever. 

[01:04:22] Dr. Liz:

I think both of those things, right? I’m a big believer that you should be able to have, the right to choose whatever you want. And if what you choose is to not take the medications, absolutely do what fits into your lifestyle. What worries me, though, is when people make that choice or any choice on faulty information. That is what, is what bothers me. And it’s another lesson I took from my experience. My mother is, you know, she made her choice, which absolutely was her choice and she was given, at least to the best of my knowledge, she was given certain options from her oncologist, but she didn’t follow up.

She didn’t get a second opinion. She didn’t do her own research. And so, it’s not clear to me that the decision she made was as informed as it could have been. And I’m also very clear, and I wrote this in my About Me page, and so I really thought about, I thought about this. I don’t want to make it seem that I’m somehow, angry or blame anything for the outcome, because the truth is she had a very difficult disease, and the outcome probably would have been the same regardless of what decision she made. But, and that’s like an extreme version where it truly is life and death. But I see it play out in rheumatology all the time where we make pretty big decisions on incomplete information. I know we talk a lot about misinformation, but I’m actually more worried about the incomplete information. 

[01:06:10] Cheryl: 

I could not agree more. And I think that’s, I literally lose sleep sometimes. Okay, so my anxiety meds aren’t working perfectly. And the therapy doesn’t work. Because I have the same thought. It’s totally someone’s right to look at all the available evidence and information and make the choice that makes sense to them. But if you feel like that just their conclusion has come from incomplete information, I think that’s, it’s just haunting. It’s just hard to swallow. And I’ve seen a lot of patients still come to me and be like, “Wow, like, I now that I understand that I was taking a risk by unmedicating. Like, I wish I had done it earlier,” and, but then they feel like failures, so they don’t share the story publicly. 

So, I think not to get, too political, but I think this, the broader conversation in the United States right now, there’s this movement of make America healthy again. And I just, if you’ve been following that, or if you believe in that mission or whatever, I just encourage you to really consider what implicit biases there are in that. And there’s been a lot of outright misinformation around, that the idea that you can and should be able to control everything naturally. And it’s, I love, your point about there’s a difference between outright misinformation versus just incomplete information, or cherry picking data, or making the wrong interpretation from the data that is, yeah —

[01:07:51] Dr. Liz: 

Yeah. And it took me a while. It took me a while. But that’s ultimately what I realized was what I’m trying to do with my YouTube, is to fill that gap. 

[01:08:02] Cheryl: 

Ah, you led me perfectly to that, yep, that was my next question, yeah. Why did you start your YouTube channel? So, say more. 

[01:08:06] Dr. Liz: 

So, why I started, well, honestly, because I was bored during COVID. ‘Cause I started in 2020. I had just moved to Dallas. I was taking a break. It’d be in my transition from LA back to Texas. And we were all on lockdown. I was in a new city. And didn’t really know anyone. I was going to visit my brother every two weeks because that was kind of the cadence we felt was safe because we didn’t know what in the world was going on with COVID. And I was just staring at my four walls. And I personally have been obsessed with YouTube for years, like years before I ever decided to get on it. And I just was thinking, all these other people can figure it out. Surely I can. And of course, yes. Ignorance was bliss. And when it started, it was really just, let me put on camera the things that I would often say to patients all the time. 

So, if you look at my early videos, which I would not recommend because I didn’t know what I was doing, but I’m talking about OA versus RA, and a positive ANA and a positive rheumatoid factor, because those are really common issues that come up in a rheumatology office. Once it started getting a little traction and I was really enjoying it, I started paying more attention and, and really starting to focus on, well, what’s the mission here? What am I doing? Because I’m sure this, like, social media and YouTube in particular is hard. It takes a lot of work and you want to be really clear on why you’re doing it if you’re going to put that much effort. 

And so, I, yeah, I became clear that, okay, I can’t fix our system. I can’t fix disorganized clinics. I can’t hire bad doctors. It’s well, what can I do, right? So, I can inform, I can educate through the lens of helping people apply it to their own life and posing questions that they can then go to their own doctors and continue the conversation. Because at the root of it is make your own decision, but here’s the information you need to consider when you’re making that decision. 

[01:10:20] Cheryl: 

Yeah. Yeah. I mean, it’s amazing. It’s called Connected Rheumatology and it will definitely have links in the show notes as always. And what has been some of what’s has surprised you about some of the responses to your videos? 

[01:10:37] Dr. Liz: 

What’s surprised me? Well, I mean, of course, when I first started, I was really scared about trolls because I’m just, I’m, old and had a whole, have lived half my life before the Internet. So, trolls really scared me. And they are certainly out there and I’ve grown a little bit of a thicker skin. It wasn’t surprising though, right? Because I was prepared for it. What was, well, what took me aback was the stories people would share in the comment section and now in my email. And it was actually quite overwhelming. I mean, stories of six plus month waitlists. Stories of, not being listened to by their doctor, of having less than five minutes with their doctor, a lot of stories of not being told, or being told that they don’t have anything, of being shuttled from specialist to specialist.

And, I mean, I’ve been practicing for a long time. I knew this was happening. The sheer volume of it, though, was what really kind of was striking. And quite honestly was a little paralyzing at first when I first started just kind of seeing these comments pour in. I, yeah, it was a little, yeah, paralyzing. I kind of didn’t know what to do. I definitely got overwhelmed. I was trying to do something on YouTube. I was like, there’s a lot of opportunity here to reach a lot of people. But then when you see how big of the problems that we have out there, I got a little well, how, what am I gonna do?

[01:12:15] Cheryl: 

Like you’re a drop in the bucket.

[01:12:17] Dr. Liz: 

Right. And, it’s well, I can’t be everyone’s doctor. And I can’t go with everyone to their visits. I can’t go shake their rheumatologist and be like, what are you doing? I can’t ensure that each rheumatologist gives everyone a half hour. Like, I can’t do any of that. It’s, well, so I kind of. muddled and thought about it and let it marinate for a good while. And with time I realized okay, this is what I actually can do. I can talk about this information that I know not everyone’s getting with their actual doctor. And do it in a way that frames it, hopefully, so they can take something tangible that they can apply to their own life. And then, yeah, pose some questions and give some prompts for them to think about, marinate over, and then go back to their doctor to continue the conversation.

[01:13:11] Cheryl: 

Yeah. I mean, it’s like a teaching. You’re like teaching a man to fish kind of thing. You’re teaching people how to have better conversations with their rheumatologist. And you’re also going in depth in a lot of your videos on rheumatologic conditions. And a lot of times again these conditions, what’s so ironic that they’re so complex. I feel like some med students probably just wouldn’t want to go into rheumatology just because it’s so complex, you know what I mean? Like, I want to work, I want to be a GI doctor So, I think this is the intestine, like, I see it. I’m touching it. Like, there’s the polyp or whatever in the colon. 

[01:13:45] Dr. Liz: 

Yeah, it either attracts it repels you.

[01:13:47] Cheryl:

Yet they, yet we’re given, you know, the patient, you’re like, the patients are given these tiny appointments and expected to sort through it all on their own, when even med students have a hard time with it. It’s just bizarre. Anyway. So, I love what you’re doing and I definitely highly encourage people to check out your channel. And I feel the same way as you. You have to have boundaries around the storytelling, in terms of your own energy, right? Because, like, for me, I had to have, or I’ve started very slowly implementing things where I’m like, these are certain times of the day that I look at stuff. But I’ve, before I was just, it was constant 24/7 checking, checking, and you’re being — it’s a lot. 

[01:14:29] Dr. Liz: 

Yeah, I mean, it’s still also kind of in case of the trappings of social media, right? Of like likes and subscribe. And so, it’s been a learning process and a growth experience for many reasons. And it has taken some time and like putting in the reps with videos to really hone in on what’s the purpose of this and how is it gonna actually be helpful. Because yes, information is good. But we need to be able to get information and actually do something with it. And I try to approach each video and topic as if I was talking to a family member who was going through the same thing. And it’s well, I can’t go, I’m busy, I can’t go with you to your doctor appointment, so let’s talk about what you need to know, to what you need to ask, what’s the information you’re going to need from the doctor about your particular situation that’s going to enable you to make the decision that you need to make.

[01:15:25] Cheryl: I

I love that. That’s so helpful. Yeah. Again, it’s called Connected Rheumatology. I had seen your channel sometime in the pandemic. And I was like, she’s really cool. I should talk to her someday. And then, it happened. So, I’m so excited. And I just, in terms of time, I want to go on to the rapid-fire questions. What, I mean, again, this could be a whole episode, but what are your best words of wisdom for someone newly diagnosed, like with rheumatoid arthritis, for example? 

[01:15:53] Dr. Liz: 

We’ve touched on it a little bit. For newly diagnosed, I typically in some way, shape, or form like to convey, it’s not your fault. But you are in control to how you respond to it.

[01:16:08] Cheryl: 

That’s beautiful. It’s empowering. Slightly scary yet empowering. So, do you have a favorite like mantra or inspirational saying for difficult times either for you or for your patients? 

[01:16:21] Dr. Liz: 

It’s not — I don’t know if it’s particularly inspiring, but I do find myself repeating the phrase, like, “Everyone’s got something.” You know, it’s so easy to get caught up in the compare and despair cycle. And I see it with my patients too. It’s like, why me? Why did this happen to me? Like, that person doesn’t have to deal with that. That person doesn’t have this or that. And I mean, I’m old enough to know, and just my job has put me in contact with so many different types of people to know enough to know that everyone’s got something, even if it’s not exactly your thing. 

[01:16:56] Cheryl: 

So, so true. I say that in the car, whenever anyone’s cutting me off, I’m like, they might be going to an appointment. They might be stressed out. 

[01:17:03] Dr. Liz: 

Oh, I’m so, I feel so bad for them. They’re obviously having a horrible day. 

[01:17:07] Cheryl: 

Yeah. Yeah. I try to be that person. Now, this is maybe not be for you, but for your patients, do you have a favorite arthritis gadget or tool? This is me being an OT. 

[01:17:17] Dr. Liz: 

You so, it’s not really a tool per se, but I am a, I highly recommend getting your home blood pressure cuff. 

[01:17:25] Cheryl: 

Ah! That’s a great idea.

[01:17:29] Dr. Liz: 

We’re focused on pain and inflammation with rheumatoid arthritis, but it’s my job to always be thinking about your health in 10 years. And we know that cardiovascular disease and heart disease is higher amongst those with RA and other autoimmune conditions. And so, what we do to prevent that is control as many of the other risk factors as we can, with blood pressure being one of them. And when we have RA, we tend to see our rheumatologists more than our primary care doctors. And even though we are getting our vitals checked when we see our doctor, I will tell you that rheumatologists on the whole aren’t always great at really addressing blood pressure and will let high blood pressure probably go on a little longer than we want. So, I would say put it in your own hands, get yourself a blood pressure cuff. If you’re great, check it once a month, whatever, like just make sure you’re still, everything’s still kosher. If it’s starting to go up, just check it once a week, keep a diary and then put it on your agenda for your next visit. 

[01:18:25] Cheryl: 

Love that. do you have a favorite book or movie or show you have watched recently or read?

[01:18:32] Dr. Liz: 

So, I am about 10 years late. But I have been recently really into RuPaul’s Drag Race. It is so good. It is the most joyful thing I’ve seen on TV in such a long time. I will be watching and notice I just have a huge smile on my face. 

[01:18:50] Cheryl:

Oh. So, good. You have to watch all the seasons and then watch All Stars. 

[01:18:55] Dr. Liz:

See, I’m only watching what’s on Disney Plus, and Disney Plus I think starts at Season 9, and so I just finished Season 10. So, I haven’t seen all the earlier seasons. Season 10 I just finished. And they did, because it was 10, they did a callback to some of the earlier seasons. And so, I saw, I mean, it’s just interesting how the production value has changed. 

[01:19:15] Cheryl: 

If you can find, Season 1 is like quaint, like, compared to now, yeah. Oh, that’s so great. 

[01:19:21] Dr. Liz: 

No, but I’m constantly now being like, don’t fuck it up. 

[01:19:25] Cheryl: 

I did, too. I have, I, yeah, I have a, one of my, one of my genres of video I make is like humor, just straight up like arthritis humor. And one of them is me starting when I got put on Zeljanz, I was switched from an injectable. I had my little bottle of Zeljans and I was like, “You better work, bitch.” 

[01:19:47] Dr. Liz: 

I know. It’s so good. Yeah. So, that’s what, I’m watching. 

[01:19:52] Cheryl: 

That’s so fun. Last one. This is a big one. What does living a good life and thriving with rheumatic disease mean to you? 

[01:20:05] Dr. Liz: 

So, when I know someone’s really doing well and really thriving is when I start to get glimpses of their life outside of their condition. And it’s a little, I’m biased, right? Because I see people and our job is to talk about their condition. And so, it can sometimes take a while to kind of see someone’s life outside of that. But you see someone long enough and you start realizing that they’ve, first of all, that they have a life outside of their condition, and that it’s not their identity. It is a part of their life. It’s not the entire life. And that’s when I really, I mean, honestly, it’s when I pat myself on the back and I’m like, oh, okay, good. They’re doing well. And yeah, that really makes me happy, proud of them. I don’t want to be patronizing, but yeah, I know it’s hard. I know it’s hard to kind of get to that point. And so, when you see someone, they’re getting married, they’re graduating, they’re getting new jobs, they’re moving, like they are building a life that is not about their condition. 

[01:21:08] Cheryl: 

Right. Right. And I mean, yeah, there’s going to be seasons of your life where you’re at the lower level of Maslow’s hierarchy of needs. But yeah, it’s definitely so nice when you can get out of that survival mode. And my rheumatologist, I just saw her yesterday. She always likes to ask, are you still swing dancing? What are you doing like for fun? And that’s remembering or seeing that the question itself or your answer itself shows that you really treat the whole person, right? And that’s the goal in rheumatology. Yeah. I don’t want, you don’t want to just have surgery, like, a knee number seven of the day. 

[01:21:47] Dr. Liz: 

That’s, listen, some people are built for that. Good. Like, good. I’m not. I’d literally go crazy. Yeah. I am not. I would be trying to talk to them, like, can we turn down the anesthesia?

I need someone to talk to. Yeah. 

[01:22:01] Cheryl: 

Oh, my gosh. So, fun. Well, I have all your links in the show notes on the Arthritis Life website, but where can people find you online? 

[01:22:08] Dr. Liz: 

So, yeah, I would say Connected Rheumatology, both YouTube and Instagram. I’d also invite people to sign up for my newsletter. I send a newsletter out every two weeks.

I talk about stories and insights that are really applicable to anyone with an autoimmune condition. And I do have some really fun and exciting programs. I mean, if this is coming out early 2025, then some of them are already out. But my newsletter folks will be the first to hear about it. So, you want to get on that.

[01:22:35] Cheryl: 

Okay. Oh, I’m getting on your website right now to get on your, I don’t think I’m on your newsletter list. 

[01:22:40] Dr. Liz: 

There should be — it pops up in an area. It’s pretty obvious.

[01:22:44] Cheryl: 

Oh, okay. Yeah, yeah. Oh, so exciting. Well, thank you — oh, it just came. It just, that’s great. And I have a newsletter. I’m not organized enough to at this point in time to have a consistent schedule, but it’s either one or four times a month. Self-compassion. 

[01:23:03] Dr. Liz: 

Yes. 

[01:23:03] Cheryl: 

We’re recovering perfectionists. 

[01:23:04] Dr. Liz: 

Yes. We can only do what we can do.  

[01:23:07] Cheryl: 

Yeah. Exactly. 

[01:23:08] Dr. Liz: 

Just know that when it does hit your inbox, it’s full of of value. 

[01:23:12] Cheryl: 

Yeah, that’s important. Yes. Awesome. Well, thank you. Thank you so much. And, I can’t wait to talk to you again later. Bye-bye for now.

[01:23:21] Dr. Liz: 

It’s been a pleasure.

[01:23:21] Cheryl: 

Thank you. Bye.