Introductions

[00:00:53] Tiffany: Welcome to AI Arthritis Voices 360, this is the official talk show for the International Foundation for Autoimmune and Autoinflammatory Arthritis, or AI Arthritis for short. My name is Tiffany Westrich Robertson. I am one of the co-hosts of the show, and today I am joined by another fellow patient, co-host, and one of the best rheumatologists that we know.

Dr. Lisa Zickuhrl, so Oh, thank you. Oh, was that a good intro or what?

[00:01:23] Dr. Lisa Zickuhr: That was the best. I'm Flushing , 

[00:01:26] Tiffany: and then the amazing Miss Kerry Wong. Hey Kerry. 

[00:01:30] Kerry Wong: Hi everyone. I am definitely glad to be here for this important conversation. 

[00:01:35] Tiffany: Wonderful. So we're gonna swing back and get a couple introductions here. So I am the CEO of the organization and I'm also a person living with the diseases primary diagnosis, non-radiographic axial spondyloarthritis.But you know, there's some more in there. And Kerry, why don't you give a little Oh, and I'm tuning in from St. Louis, Missouri. 

[00:01:55] Kerry Wong: And, uh, I am Kerry Wong. I'm here tuning in from New York, and I think that there's a little bit more in there, is pretty much the perfect answer for all of us. My, uh, rheumatologist calls it my autoimmune

soup and some of the main ingredients are a rare disease called sarcoidosis that affects my joints as well as a whole lot of other areas, but I also have Sjogren's syndrome and rheumatoid arthritis, and a handful more. . 

[00:02:21] Tiffany: All right. And Lisa?

[00:02:23] Dr. Lisa Zickuhr: Hi, I'm Lisa Zickuhr 

I am a rheumatologist tuning in from St. Louis, Missouri.

I have a general rheumatology clinic and I also do a lot of teaching, and so I have a passion for trying to both role model and emulate and teach my trainees how to best interact and work with people living with autoimmune and rheumatic. And I love how Kerry, you said that your rheumatologist describes it as your autoimmune soup because I usually use the analogy of a buffet

You just go and you take a little bit of everything. Um, so food analogies always appease.

The Good, Bad, Ugly Office Visits E-Book - project inspiration

[00:03:05] Tiffany: Nice. So as you can see, Lisa and I both said St. Louis, Missouri. So we're also going to have on an extended component of this same episode, Dr. Al Kim. You might know him as Dr. Al or just Al. He's gone by all of them, and uh, he's my rheumatologist. In St. Louis, Missouri. That's how I met Lisa because he introduced us.

And then Lisa and I and Aiarthritis have done some wonderful work together. So when it was time to come back to one of our spinoff shows that we call RheumyRounds, which is where patients and rheumatologists come to the table and talk about some topics that you might not talk about necessarily when you're in the office, especially this topic, which is.

The good, the bad, and the ugly in office visits. So clearly not gonna talk about that when you're in the office. 

[00:03:57] Dr. Lisa Zickuhr: And it's the good, you might teach the good and the office maybe not so much the bad and definitely not the ugly and, and yet I think sometimes those are the things that we really need to address more than anything. So Absolutely. To be able to do that here. 

[00:04:10] Tiffany: And that is why this topic was inspired. That's exactly Kerry, what, what happened? So at our organization, what we do is we, as people living with the diseases, listen to other people living with the diseases, and we start to identify issues. Or persistent problems that need to be solved in some way, shape, or form.

And we were getting a recurrent rant that was showing up in social media or, or in our rant hotline, which we do have at ar arthritis.org/rant. You can submit anything you want anonymous and you will not be judged. So we were getting a lot of gripes about, I'm not happy about, this happened at my rheumatology office that happened.

I wasn't heard. Things of that nature. And we said, you know what? Maybe we need to create a resource, sort of an ebook is where we're going with this. Where originally we thought collect these stories of the rants that we were getting, but then also the good because you need to know what a good experience is as well.

And it's always easy to gripe about something we're not happy about. But I think equally as important, what does constitute a good experience at the rheumatologist office and what do. Think, qualify as a good or maybe not so good situation, but only if we communicate those issues together and put them out there as a resource, maybe we can then at the end, will recommend some best practices.

And after it's all said and done, All parties will be able to identify what the other feels is, the good, the bad, and the ugly . I just like saying that. So let's jump right into this, and I'm gonna turn it over to Kerry, because Kerry had written an article and you can tell a little bit about just where that article came from and the premise, which really I think sets up what we're gonna talk about here on the show.

Kerry explains Good Doctor-Patient Office Experience

[00:06:08] Kerry Wong: Sure I have a column at Sarcoidosis News is a really great site for information and perspectives, all of that. And um, I have a column I write twice a month about my experience with sarcoidosis with chronic illness. And one of the pieces that I had to write. A while back was about when my doctor took 19 vials of blood from me in one office visit.

That made me actually fall in love with her because I have had so many doctors, um, before, I think she's my seventh rheumatologist, just on its own, not to mention all of the other allergists and there was just so much in, you know, that that was a, a symbol of, and that was the beginning of really showing me something that I had been lacking in

a lot of other doctors that I'd seen before. There I mean, what 19 files of Blood? They actually had to stop midway and go to the other arm because they needed so much. But it was from all of those tests that she was able to find out so much more information. Things that explained so much of what I had been experiencing and previous doctors couldn't or wouldnt give me any answers or, or follow a path from there. So that was just such a great example of what made me love her. I've been with her about a year and a half now, and I just continue to love her more and more every time I, uh, see her, every interaction that we have. 

[00:07:37] Tiffany: So, I just wanna expand a little on what you just said.

You said the doctors wouldn't or couldn't tell you or fill in what you needed. Can you just expand a little bit? 

[00:07:48] Kerry Wong: Sure. So, um, trying to give a sort of condensed version. I, I know, and I, and now I'm asking you to talk more, sorry. I know. So the, the condensed version of my sort of story leading up to that is I was experiencing a myriad of symptoms that

just never seemed to make sense. I was getting dizzy. I was having joint pain. I was having muscle aches, all kinds of things. Starting back in 2007 and the beginning of 2008, I decided, okay, something is wrong here. You know, I need to see a doctor. I need to find out what's going on. I spent four years going from doctor to doctor to doctor with them completely dismissing me because although I said, you know, a laundry list of symptoms, they said I looked fine, and the tests that they ran didn't really show much.

and they just kind of left it at that, and I was just stuck. After that, I developed some new symptoms that were actually more visible, some joint swelling and rashes that, you know, they, they couldn't, they could no longer tell me, Hey, you know, this is just in your head. Maybe you're just depressed. I think that's one of the things so many of us have heard so often.

It, it seems to be what doctors will say, what many doctors, I don't wanna say all of them, , but what many doctors have said when they don't see an answer or they don't see an easy answer, they just tell us that there's nothing wrong. And when I finally had these new symptoms that, you know, were clearly not in my head, depression does not make your ankle swell up so that you can't put your shoes on.

I finally had somebody who said, okay yes, something is wrong. And then I spent another four years of rotating diagnoses. Maybe it's lupus. No, I don't think it is. Maybe it's RA. No, I don't think it is. And we went through so many different diagnoses and then we came up with sarcoidosis. And again, this is a rare disease.

It's not something I would expect people to find right off the bat. But then because it's a rare disease that can affect so many different organs and systems throughout the body. It really needed to be addressed or examined, kind of top to bottom. But most of the doctors that I had were not familiar with sarcoidosis, and as a result, if there was a new symptom that I said, I have this problem, they said, oh, well it's probably the sarcoidosis.

Or if I said, you know, I have, you know, do you think this might be, they said, no, I don't think it is. And they've kind of just brush it off without any further examination because they didn't understand what sarcoidosis was, so they also didn't understand what was and what wasn't. And that's where I, you know, had a lot of trouble getting answers.

And this rheumatologist, who I see now, she understands sarcoidosis and she's able to see which things fall under that category, which things fall under other autoimmune arthritis categories, which things fall under a different specialist purview. And so I really have that well-rounded approach, which I really, really needed.

And so many of us do. 

Rheumy reaction when a patient doesn't tick all the boxes

[00:10:55] Tiffany: Got it. All right. I'm gonna turn it over here to Lisa in a minute to comment on this because we wanna hear a little bit about your experience. We know that there are a lot of times, I'm sure, where people come in and they're not ticking all the boxes. And for us as patients there so often will feel dismissed or not heard.

And I know Lisa, you and I talked about several articles that have come out recently in the last year. I know there was one that was highlighted quite often at EULAR 2022 conference that was on this idea of being dismissed and what that does to break down communication and. And how that can even impact healthcare.

So I just thought it would be a good opportunity just to weigh in on, that's gotta happen to you, right? As a doctor, people come in, they're not ticking the boxes. Their labs look great, but what do we do? How do you handle that as a rheumatologist? Yeah. 

[00:11:51] Dr. Lisa Zickuhr: So I think the first thing is that, So I, I, I explained that rheumatology is like art appreciation for our diseases. Very rarely is there one test that is going to definitively say, yes, this is what you have, as opposed to other medical conditions. You know, like hyperlipidemia, your cholesterol's either high or it's not. Or diabetes, your sugar is either high or it's not. And we really don't have things like that in rheumatology.

Instead, it's very much a clinical specialty where we listen to patients, we hear their symptoms, and then it's up to the doctor to interpret the labs and the diagnostic studies in the context of those symptoms. And you know, because of that, it is, imperfect. There's a couple of themes that I'd like to capitalize on that Kerry just shared.

[00:12:41] Tiffany: Yes. 

[00:12:42] Dr. Lisa Zickuhr: And the first is this concept of non-specific symptoms and then being told, oh, you're depressed. It's all in your head, kind of thing. So autoimmune conditions, they develop over time. And we know that some people, they get all the symptoms all at once, and it's very obvious, you know, like you come in with the rash and the joint pain and all the other things like boom.

We can diagnose that because you fit kind of what we call an illness script. You, you fit the description of what a condition looks like, which is what we're trying to do as rheumatologists match patient symptoms to what these conditions sound like and look like in real life. But for those patients who don't have that boom, all of a sudden everything all at once, and instead they kind of have this gradual progression accruing non-specific symptoms over time, it can be really challenging because there are many, many people in the world that have similar symptoms that don't have an autoimmune disease.

We don't wanna misdiagnose somebody and put them on medications that can cause a lot of harm. Especially nowadays in a pandemic. More so, as I'm sure everybody listening to this podcast is familiar with, our immunosuppression doesn't really help fatigue all that much, and it doesn't really help the non-specific symptoms all that much.

It's very frustrating. So usually how I explain it to patients is that, you know, like at this point in time, I don't think you and I, so two things there at this point in time and that I don't think everything's hedged. So I don't think you have an autoimmune disease, but something can always develop in the future.

And so if something more develops, please come back and we will repeat the assessment because that's the best I can do at that point in time. And I, I don't know how other physicians do it, um, have that conversation. But the hope is really by saying just that simple sentence and kind of setting the stage in that way, validating that you are having these symptom.

Explaining that they're non-specific, they don't necessarily fit any one disease, and that things can progress. And my doors always open, come on back whenever something else happens. So that's my approach. I don't know how, Kerry, I don't know how you, how that conversation happened with you in the past.

I'd be curious to hear how, how that went down and even. I'll take the feedback, like, how, how, how does that sound? Should I, should I change up my spiel? , 

[00:15:10] Kerry Wong: you know, everybody can't see this because, you know, this is an audio show at the moment, but I have been sitting nodding my head vigorously, you know, with everything that you have been saying.

There are so many points of that, that on the rare occasion I found, I've been really excited about. The things that I wish that I had had with previous doctors, you know, and that was, you know, things that you said. You know, one of the first things that you said, even when you were introducing was you know that you are helping to teach and to train other people as far as the communication and that communication is so critical. You know, in, in some cases that communication is more important than the lab tests and you know that you listen to your patients and you said, at this time, we, I don't think it's this, but it could develop into something else. And so you're giving us, you are giving your patients, you know, the, the best that you have at the moment, but also explaining why and how this is so difficult to pinpoint.

And not just turning it into a blame game, not just dismissing your patients that there's nothing wrong. If I don't have an answer, then there is no answer. It's just you, you know? Or many doctors have, you know, turned and. Sort of like spun it around and just kind of make us feel like it's our fault for being sick, like we've done something wrong and we just need to be better.

And you know, you acknowledge and, and I understand, we understand that these are really, really complicated conditions with so many symptoms that vary with so much overlap, with other things, with other conditions, with other treatments and side effects and contraindications. There's so much and it is so complex. At this point, I don't expect anybody to have all of the answers. I mean, I used to think, and growing up we thought you get sick, you go to the doctor, the doctor knows everything. They make you better. Have a nice day. And what we have learned. At least in, in the case of, you know, chronic illnesses in the case of autoimmune autoinflammatory conditions, it's just not that simple. But I think one of the best things that you said, Lisa, and one of the best things that I think we can get from a doctor, honestly, is knowing their own limitations. Knowing when you don't know everything and being able to acknowledge that, and it's not a fault of yours that you don't have that background just yet. You haven't encountered this symptom before and it's not my fault for bringing you something that doesn't make sense. It's just the fact. And what that means is at this point, maybe we need to ask somebody else to kind of get in on that. That I think is just one of the biggest and most important things, is being able to be real, be honest with your patients about, you know, how much you know, where you're not so sure, and that we can figure things out together as we move forward.

[00:18:07] Tiffany: So I just wanna piggyback on what you just said, Kerry and Lisa as well. So you said Lisa, you had said the best you can really do is at this point in time. I don't think, and I, I think that it's the way you say those and with the compassion associated, because think about how that could be in. It's like at this point in time, I don't think there's anything wrong with you.

You know, like, I mean there's a way that that things, because I think people hear inflection in, in that type of thing. And patients, I talked to Al, Dr. Kim about this in a prior episode before patients come in the office with baggage. We come in with everything a previous doctor said before us. So if we are just wanting so badly to get a diagnosis, I think what I'd say, Lisa, is as a doctor, I would definitely wanna know, am I the first rheumatologist or the fifth because they could feel defeated.

By that, and it might take more empathy on the side of the doctor to really be encouraging and let them know, don't give up. Well, I'm here to help you through this so that they don't feel defeated. I hope that that makes sense. 

[00:19:27] Dr. Lisa Zickuhr: I guess in my mind, so I'm hearing everything you're saying and I agree that nonverbal communication is like 90% of, of the message I I my one reservation is that, you know, sometimes there isn't an autoimmune condition.

Yep. And there are a lot of other medical, mental health conditions that can cause very similar symptoms. And so when we offer our opinion many times, not always, but sometimes patients are very disappointed with that. And, you know, I can package it as empathically as possible. But like you said, Tiffany, like they're coming in and they want, they want the diagnosis that they know has a treatment for it.

That's easy. Yeah. Right. Like if I have rheumatoid arthritis, you're gonna give me, Some something and it's gonna turn this around in a couple weeks or months, and that's not always the case. And so from the physician perspective, it helps when patients are open to the message, especially if we're the fifth rheumatologist and we're saying 

[00:20:24] Tiffany: the same thing.

That's a good point, . Good point. 

[00:20:28] Dr. Lisa Zickuhr: So because we're not there to crush your hopes or ruin your dreams, we're there to offer, we're there to partner with you and offer you. Our opinion and our interpretation of the art appreciation data, right? And it's hard for us too to sometimes have these conversations because we want there to be an all tied up in a nice little bow, a diagnosis, and a simple, straightforward treatment, but that that's not reality.

That's not the life in which we live. And so I think that that's an important part of this conversation as well. Not just, you know, the physician being empathic and receiving and listening. That goes both ways. Patients need to also be receptive and hear what it is that we're trying to say rather than kind of interpreting it in a different way.

[00:21:14] Tiffany: That's a really, really great point actually, and I'm glad that you, and see that's exactly the beauty of the show, rheumyrounds and why we do this, because who's gonna talk about this in an actual doctor setting, and I feel like that makes a lot of sense. And as a patient organization, We do get a lot of patients that come in and feel very disappointed and, and I think that's also why many of us, when we finally get a diagnosis, we feel relieved.

There's this sense of almost happiness. That's a very good point. Thanks for bringing that up. What kind of 

[00:21:45] Dr. Lisa Zickuhr: brainstorming, I wonder if there's some way for patients who are new to this journey to help them maybe reframe that sense of relief or satisfaction with a visit more so on was I listened to, was I heard rather than did I get the answer that I was looking for?

Because sometimes, you know, Kerry's a great example and I took eight years to, to figure out the right answers and it can take a lot of time and if that's the end goal, it can maybe be dissatisfying as opposed to have I found a partner that will at least walk on this journey with me. Yeah. 

[00:22:23] Kerry Wong: You know, so, so two things that I, I think to, to kind of piggyback on that, you know, one word that I heard you say a few times is that you're partnering with your patients and that is something that I think is sadly, in my personal experience, I would, I would say rare, but really, really important that, you know, it's not a matter of we come to you, you tell us what to do. We do, as you say, end of story, but it's a matter of we're gonna talk this out and we are gonna try and do the best we can to figure out what might be causing any of the things.

What we're looking for out of this visit and what is our best path forward, you know, I think that's really important. And like you said there, you know, the other thing I wanted to to kind of point out is, you know, you said, I mean, we all kind of know that this isn't always an easy, and it's not, there's not always an answer.

It, it might not be a, an autoimmune disease. It might not be, you know, something that we can look at and say here, X, Y, Z. And while that is what we're looking for, obviously is an answer and a solution, when that's not there, you know, it, it's coming back to that, um, that inflection and that communication.

It's, you know, if I come in and I say, look, I'm sure I have rheumatoid arthritis. This is the treatment I should have, here's why I think so and you just say, no, that you know, then we're gonna have, you know, a problem. I'm gonna come away from that feeling very negatively about that experience, but if you explain what it is that you're seeing, what it is that you would be looking for that would lead you down that direction, it's really just, you know, the more information that you could offer in both in terms of what you're seeing or, and in terms of what you're not seeing, um, that helps us to say, okay, where do we go?

You know, where does that leave us and what do we do next? And if I could just add in that one other point I think is so important is that what do I do next? Or where do, where do we go from here? Because one issue I've had with a lot of doctors, and sadly I know a lot of other people who have as well. Is we come into the doctor and we say, I have XYZ symptoms.

And they say, oh, okay, so we will do, you know, ABC tests. And then they call us up and they say, great news, a, B, and C. We're all negative. You don't have that. Have a nice day. And then we're stuck because, okay, it might be good to know that we don't have those particular conditions, those might have been scary.

And it might be, you know, a relief to know it's not that. But we are not done, you know, we're, we're still sitting here with those same issues that we came in with. And if the doctor is done and thinks that's the end of the conversation, it just kind of leaves us hanging. And so having that, here's why and here's what we can think about now. Here's what we can look at now, here's, you know, some other things that, you know, we can kind of monitor for. 

[00:25:35] Tiffany: Did you wanna respond to that, Lisa? I had something to add.

[00:25:38] Dr. Lisa Zickuhr: I saw, I saw you writing. I didn't know if there was another question coming. So I, so I think that's a great point, and I think I, I'm probably guilty of that myself.

Um, sometimes, because in our mind, like we're always worried about ruling out or making sure that it's not either a complication of an autoimmune or autoinflammatory condition for medication, something new. And then when all that comes up negative, then what do we do? Um, and usually that's, then it gets to the point of we don't know the answer, , I don't, I don't know why you have it.

Good news. All the scary stuff was negative and it wasn't that. And so I think also that probably, and this is not, this is an excuse and not a good reason, but it probably also just comes from trying to be efficient and, and lack of time or closing the loop and circling back. And so I try, you know when in that those situations when I give the results, I try to say, are you still having whatever symptom it was?

Or give advice, like, you know, what I worked up was negative. I recommend you follow up with your primary care physician because I don't think this is related to your autoimmune disease. But if that doesn't happen, I really do hope that my patients reach out and are like, okay, Dr. Sicker, hey, remember, what are we gonna do next?

Because it may have been just that I, I missed on a detail, but that's a really, really excellent point. And I, I don't think anyone's intentionally trying to leave you hanging and I definitely wouldn't wanna do that. And so it's something that I can, I can work towards being 

better. 

[00:27:13] Tiffany: I think that in a lot of cases, people like myself, for example, I have never had a positive lab in my life, ever.

They all, everybody tells me you have perfect blood work. And that is a challenge. We hear that so often and it's gotta be just frustrating too. As a doctor, you obviously wanna give answers and you're running all of the. And that leads, I guess that leads back to this whole, the patient feeling like no one believes me because I'm feeling this, but it no test is detecting anything that's happening to me. So I circled a big word that kind of summarized I think what you were both talking about and that's really information sharing. There's so many contexts that fall under that, and I think when we're thinking about times that we've had good experiences with the rheumatologist in the office it often revolves around good information sharing. The doctor is providing us with explanations like Kerry said, okay, this is why I might not think it is this, or this is something maybe you should go learn a little bit more about. This could help you. So good information sharing. And I think at the same respect, when you don't have good information sharing and you're left with a lot of questions or the the time and there's not follow up during the, between the portal or whatever that is. That lack of information sharing I think can be extremely detrimental and can really shape that what is good and what is perceived as  bad.

Patients taking responsibility in the visit

[00:28:49] Kerry Wong: If I can just add one thing, kind of flipping on the other side.

I think we as. Need to take a little bit of responsibility for that ourselves too. As an example, you know, my mom growing up, my mom, my grandmother, anybody like, they got sick, they went to the doctor, they got this medication. That's all there was to it. And if I was asking my mom, you know, what happened? What did they say about this?

And what do you need to look out for? And do they think it could be related to that? The answer was very often, I don't know, because if the doctor wasn't offering that explanation, She wasn't asking for it. And you know, years ago I also wasn't asking for it. So I've had some medical issues in a different area that I now wonder if, you know, how much was the stuff I was dealing with in in college?

How much is that related to the other issue that I had when I was 30? And I don't really know because I didn't ask questions back then. So there's all that information that I don't have and can't get from 20 something years ago. But, you know, it's because I didn't think to ask. It wasn't, I didn't realize how important it was for me to ask questions and for me to try and find out and learn all I could about whatever it was that I was dealing with in my body.

And so I think absolutely we, we want our doctors to offer as much information as they can, but I think we also need to take it upon ourselves to make sure we ask the questions that are weighing on our minds. If they say, here, I want you to take this medication, ask about it. You know, what is it going to do for me?

What is it gonna do to me? What side effects should I look out for? You know, anything, it's, we have to remember, you know, if we want them to be to think of us as partners and working together to come up with solutions. That means it's also partly on us to come up with the questions too. 

[00:30:48] Dr. Lisa Zickuhr: I think that's great from a physician perspective, there's so much I can tell you, right?

I can, I, I can, I can just cite the doctor version of Wikipedia and for some people I'm gonna lose them if I do that. And so it hel, it helps us so much when you come with specific questions so that we can give you the information that you specifically are looking for. I think the other part of that is, Sometimes these conversations are, are just best done in person or in a visit setting.

And so oftentimes when I have patients that have lots of questions, that's what I do. I'm like, let's just schedule, let's schedule an appointment so that we can talk about all of this, because then you have my undivided attention. And it's just, it's so much easier to check for understanding and like do the back and forth with clarifying questions and all.

In person or over the phone than it is in a portal or trying to, trying to write it all out. And it, it's just, it gets complicated. And so that's the other thing that my practice is, and that I hope that my patients have actually like, started to adopt. They're just like, I made an appointment cause I have all these questions.

Like, yes. Perfect. And I think that that is, it's just a really great way of simplifying and streamlining and making sure that you get the information you need and when you need it. 

Tiffany shares an example of a Bad office visit

[00:32:04] Tiffany: So I haven't shared any like great or not so great stories on my own. So I'm gonna throw out just one of my stories of my journey that I would classify as a not so great experience.

And then I'm going to actually ask you, Lisa, to choose a very, very good or a very, very bad. It's up to you whatever you feel comfortable with. So one of the problems that I have faced is I move a lot. I not now I'm at home. I'm here. I'm not going anywhere. But when I got diagnosed, it took forever to get a diagnosis.

Finally, I was heard. So the first doctor told me, the words that I'll never forget, I'm going to wait and watch you get worse. And I have heard people say that recently, and I've actually heard that in conferences. I've heard presenters say, well, we need to watch and see how it worsens. But that's saying the same thing.

So my first tip, if you're a doctor, rheumatologist, anything, be careful how you phrase that sentence, , because that I'll never forget it. I feel like I'm permanently just stained in my brain of that time. I, I felt helpless. I felt like, oh my gosh, you mean this is gonna get worse? And , it's a very, very tough thing to say to somebody.

So that was my first negative experience of realizing, wow, I don't know what's gonna happen to me and what does this mean for my longevity, my livelihood, all of that thing. And then the moving part, when I finally did get someone to diagnose me with something and treat me, and I started feeling much better only to find out when I moved, because I was really in a good, good shape on a biologic and it had complete continuity of care. I wasn't sitting slumped over in a chair. I wasn't sleeping 16 hours a day. I wasn't waking up in the middle of the night in terrible pain and unable to move because I was on continuity of care. I had the right treatment, and they looked at me and said, well, your blood work is great.

I don't see any radiographic damage. I don't cannot justify you being on this medication. So they took away my diagnosis and denied my treatment renewal, and that's how I found Al Kim.

But anyway, so that's just one example of, you know, and that happens. I wanted to point that out too, because I want people out there to know these kind of things happen to every, all different walks, walks of people, you might think, oh, well, you know, Tiffany, you, you're experienced in all this. Well, it doesn't, it doesn't matter.

But what I am grateful for is I knew I knew enough to walk away. I knew it wasn't the right relationship. I wasn't getting what I needed, and I found a doctor who listened to me and who put me back on medication, thankfully, and, and put me on my way.

Dr. Zickuhr shares an example of a Good office visit

So Lisa, I'm gonna turn it over to you and ask you about sharing a story, something that could go in this ebook that we're creating.

[00:35:19] Dr. Lisa Zickuhr: So i, I'm gonna share a good story. I'd like to end on a positive note. So I saw a patient who was having non-specific, non-specific symptoms, fatigue, alternating diarrhea and constipation, brain fog, problem sleeping, probably things that a lot of us could relate to. And she was referred to see me because one of her tests the anti-nuclear antibody, or ANA for short was a little bit positive, not a ton. We did a whole history and physical exam, did a whole slew of lab work and at the end, at that point in time, I did not think that her ANA was indicative of an autoimmune condition, and I didn't think that her symptoms represented an autoimmune condition at that time. And she had had some other aspects in her history that pointed maybe towards a diagnosis of fibromyalgia.

And so the best part about this encounter was that she was so open to just listening and letting me lay out all of my reasoning and take it in for whatever it was that I was offering her. And I, and I was like, you know, some, as many people that were listening know, fibromyalgia has a terrible stigma associated with it.

And I said, you know, I, I'm not gonna even put this in your chart because I don't, I don't want that to follow you. Some people are gonna try and make you feel like this is a problem in your head. This is not a problem in your head. We just don't know what causes it. And if we did know what caused it, we would've a treatment for it.

But there are things you can do and this is, you know, kind of like. Physical therapy and other, other stuff. I've played that, that, that framework so often and not very many patients respond in a similar way, but she was just like so grateful for a possible explanation and asked appropriate questions afterwards and, you know, just wanted to make sure that she was on the right path moving forward.

That in the end, it was a, a really wonderful experience. I felt like it was a bidirectional exchange. Like I, she was telling me her story. I was kind of trying to put the pieces together and then an opportunity for questions back and forth, and we were both left that encounter feeling like satisfied with what had happened.

[00:37:47] Tiffany: That is a great way to sort of tie in as we start to wind down the show. Kerry, did you want to respond to that? Cause I know you, you were, you were shaking your head yes. Like you were resonating with what she was. 

[00:38:01] Kerry Wong: I was just, you know, doing math in my head and saying, I wish I met you 15 years ago.

Honestly, I also have fibromyalgia, and I will say I knew that I had it four years before I had a doctor actually put it in my chart. The experience with that, with the dismissal, with the stigma, with, you know, what it is and what it isn't and what else could go along with it, and what you can or can't do for it, I was lacking all of that.

Everything that you just said. I am grateful for doctors like you and on behalf of your patients. I'm gonna say thank you because we need more of that.

[00:38:40] Dr. Lisa Zickuhr: Oh my gosh. Thanks Kerry. 

Submit YOUR stories for the Good, Bad, and Ugly E-Book!

[00:38:44] Tiffany: So much love on the show. So as we start to wrap up here, I'm just gonna go around the table. Just reiterate again, this is the launch of an ebook that we're doing at AiArthritis that we're calling The Good, The Bad, And The Ugly, so we can really collect, we hear a lot of stories of ranting and being upset about some negative experience in the doctor's office, which is important to hear for all parties so that we, we can say, oh, how can we improve on this?

But equally, we need to hear the good because I mean, that feels good to know all of the good doctors and good patients and good experiences out there. And then together we can learn and build. So what we're going to be doing is collecting your stories. So we definitely encourage you to submit your stories, and you can find a link to share your story at Aiarthritis.org/gbu, which stands for the good, the bad, and the ugly.

So we definitely wanna hear your stories and then we'll be analyzing the stories like we do when you research, it's called qualitative research. You listen, you, you gather stories, and then you start to find patterns. And we want to work to create some themes and some recommendations on how we can improve that communication and sharing decision making with our doctors.

Just improve the overall experience so, Please submit your stories

Our recommendations for patients and rheumatologists to improve communication and outcomes

as we close out around the table, I just wanted to go around and ask everybody, you know, if you were thinking ahead of the book now, we collected stories, if you could just think of maybe one recommendation that you would like to include in something that you think could help both patients and rheumatologists improve communications and outcomes, what would that be?

[00:40:41] Dr. Lisa Zickuhr: My feeling is that in a clinic appointment, the patient has their agenda and the doctor also has their agenda. And I think the most successful clinic appointments are when we can cross talk between those agendas. And in order to do that, you have to be aware that the other person also has an agenda. And so having that awareness and being cognizant of that and will open up, I think a lot of opportunities for cross communication.

[00:41:08] Tiffany: Great. Kerry? 

[00:41:10] Kerry Wong: I would say, Best advice that I would give to, um, to get the most out, is to come in prepared with notes about what that agenda is. I personally, I use, you know, my calendar app on, on my phone where I have you know, the appointment with my doctor, and then in the notes I will throughout the time from when I schedule the appointment until the day I actually have it, I can always go back in and add, oh, I also wanna ask her about this.

And, oh, I have to tell her about that. And along with that, I take pictures. Whether it's a rash that is most likely gonna be gone at the moment I see my dermatologist or, um, a swollen ankle that is most likely gonna be down to size by the time I see my my rheumatologist again, but this way, It's not just a matter of brain fog.

I forgot everything I wanted to ask you. And it's not just a matter of, well, everything looks great now, and that's not the end of the discussion. So coming in with the notes and the evidence, the data, the whatever it is that you wanna share, you know, helps make that conversation go more smoothly. 

[00:42:20] Tiffany: That's great. And that is exactly what happens too. Always, 

[00:42:27] Dr. Lisa Zickuhr: we love pictures. Bring all the pictures. 

You bring pictures of your pets and your kids too. 

[00:42:34] Tiffany: Bring them all. There you go. So then, then I'll just tie those together and I'm gonna throw back the listen word that we all started with on here onto the table and listening to one another.

And also, how can we develop some level of confidence and feeling secure and communicating and asking for help and asking what we need or if we don't know, and that includes the doctor as well, like being able to be open and less fearful of avoidance of communication. I guess. How do we get past that?

Because I know that that's been an issue as well and we hope to work together in creating some guidance on that as well. So there you go. That I think is a good introduction on this really awesome project that we're doing. And I did wanna also throw out that this project is going to be primarily led by our volunteers at AiArthritis. So if you are looking for a great organization to volunteer with, look us up at aiarthritis.org/volunteer. And if this is something that you think, wow, I'd like to maybe get part of this, this could be kind of fun, let us know. Sign up and we'll be in touch on how to get you more involved in this really amazing project. So I just wanna thank both Lisa and Kerry for pulling up a seat at the table in the special edition of RheumyRounds. Kerry, can you tell everyone where they can find you? 

[00:44:02] Kerry Wong: Sure. Um, so I am also known as a butterfly. Um, but I. Spell it. Like I said, I'm from New York. I spell it like we say it, so it's B U t t a h f l y, K for Kerry.

Um, you can find me at buttahflyk on Twitter, on Facebook, on basically all of the social media and Float like A Buttahfly is my website and my column at Sarcoidosis News. 

[00:44:26] Tiffany: All right. And, and Lisa, if anyone would like to find you, where do they find you at?

[00:44:31] Dr. Lisa Zickuhr: I am on Twitter at lisa Zickuhrl. 

That is l i s a z as in zebra, i c k u h R. My ancestors just made it complicated. , 

and thank you so much for, for inviting me to be part of this.

[00:44:47] Tiffany: Awesome. And uh, then you can also find our organization at IFAiArthritis on all the social media channels, Facebook, Instagram, Twitter, LinkedIn, YouTube, TikTok, I'm sure I'm probably missing because I don't run our social medias.

So I'm not really familiar with all of the platforms that we're on, but you can find us there. So we definitely want you to be part of this because this very much so all voices matter. Your stories count, and we hope by collecting all of them that we will be able to change the situations and the stories of tomorrow.

So thank you again to my amazing co-host. And stay tuned for more about this project and how we can work together. Thank you all. 

[00:45:36] Kerry Wong: Thanks so much for having us. Thank you.

[00:45:44] Intro: AI Arthritis Voices 360 is produced by the International Foundation for autoimmune and autoinflammatory arthritis, find us on the web@www.ai arthritis.org. Also, be sure to subscribe to this podcast and stay up to date on all the latest AI arthritis news and events.