Speak Up for Your Health 

Released Oct. 7, 2025

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This episode of the Live Yes! With Arthritis podcast is brought to you in part by Amgen and by Bristol Myers Squibb.

Trina Wilcox: Welcome to the Live Yes! With Arthritis podcast. I'm your host for this episode, Trina Wilcox, and I was diagnosed with juvenile rheumatoid arthritis at the age of 6. I feel like one of the greatest things that my parents taught me was that you're going to have to learn how to speak up and advocate for yourself, because this is something that you will be dealing with day in, day out, for the rest of your life.

So, I'm glad that this is going to be our topic for the day. We're going to be discussing self-advocacy, what you can do to speak up for yourself and work with your health care team to get what you need to thrive. Today we're joined by Dr. Julius Birnbaum, author of “Living Well With Autoimmune Diseases: A Rheumatologist’s Guide to Taking Charge of Your Health.” Welcome today, and please tell me a little about yourself.

Dr. Julius Birnbaum: Thank you for having me on the show. I really appreciate it. So, I’m initially from Brooklyn, New York. I still have a great affinity for all the sports teams, like the Yankees and the New York Knicks. I am fortunate to have three beautiful children, Aaron, 16, Jeremy, 14, and Samantha, 9 years old. And they've enriched my life in so many ways, teaching me how to laugh and take joy in moments of my life that I'm privileged to have them. And I also have a lovely wife, Anitra, who I've been married to nearly 20 years. And her generosity just inspires me every day to be actually a better physician.

In terms of my professional background, I did my undergraduate work at Princeton University. I went to medical school at Columbia Presbyterian Medical Center in New York. And as we'll talk about, I did two residencies: my neurology residency at Mount Sinai Medical Center, also in New York, then Jacobi Medical Center in the Bronx. And I finished my fellowship in rheumatology at Johns Hopkins.

Trina Wilcox: What led you to kind of get into, especially, rheumatology?

Dr. Julius Birnbaum: When you go through medical school, especially in your later years, you're actually tasked with trying to figure out what field of medicine you're going to follow for the rest of your life. So, when I was exposed to neurology, I was absolutely enchanted by the field. There was just this amazing opportunity to use equipment that's been around since the 19th century, a penlight and the reflex hammer to localize wherever neurological disease, in the spinal cord or the brain, peripheral nerves. And I think that was why I had such a strong affinity for neurology. At the same point, I also really enjoyed internal medicine, and I loved how you could gallop through different organs, the kidney, the lung, the heart, and try to find out the location of the disease and its treatment. So, they both really spoke to me. I initially did my residency in neurology first.

Trina Wilcox: Are we getting less rheumatologist people joining that field lately? And why is that?

Dr. Julius Birnbaum: It's hard to say. I actually think that there's more of an interest in rheumatology right now. I think it speaks to why we can hope that we're in a golden era of rheumatology because there's so many burgeoning treatments that, you know, if you told me were going to exist when I first started my rheumatology fellowship, it would almost be imagination if not fictitious. I think that ability to tackle autoimmunity through all these different medications is really something that appeals to a lot of people. And also, at the end of the day, to make people feel better, relieve pain and live more fulfilling lives.

Trina Wilcox: Well, in fact, you dove into it so deep, you wrote a book about it. Tell me why you decided to put this information out there for us.

Dr. Julius Birnbaum: I always enjoyed writing, and every day I really do think it's a privilege that I have to take care of patients. And I wanted to see whether the love that I have for the profession could be more ubiquitous than touch other people. So, that was my primary reason for writing the book. I wanted to, number one, supply information. There are chapters, rheumatoid arthritis, psoriatic arthritis, but also other chapters such as lupus and Sjogren's disease, because I wanted to establish that there's this interconnectedness between rheumatic diseases; no autoimmune disease is an island.

I wanted to prepare wellness chapters that are relevant to any disease. So, there's chapters on diet and depression and fibromyalgia. And finally, I wanted to open up my clinic and share disease narratives. And my hope was that, in my patients' voices, that readers could recognize their own voices; it'd be less lonely. But if there's one unifying thing that I hope would resonate with readers, it's absolute empowerment. Empowerment, empowerment, empowerment. Empowerment that you could partner with your physician, and empowerment that you could be challenged by these diseases, but ultimately, that you could lead fulfilling and joyous lives. And that's the central theme I wanted to get across.

Trina Wilcox: Good. That's excellent. And you are very focused on defining the different types of rheumatic diseases. But could you kind of back up and define what a rheumatic disease is, and then the common denominator?

Dr. Julius Birnbaum: Rheumatology is a field. It could be thought of as encompassing two distinct subtypes. So, one is more musculoskeletal: injury, taking care of some shoulder sprains, ankle sprains. The other field of rheumatology, which I deal with in my book, is the rheumatic diseases. And those are underscored by autoimmune syndromes: how the immune system comes to target parts of our body as something that should be injured. And I think that's the common denominator that links all the rheumatic diseases.

Trina Wilcox: Do you feel like a lot of patients do or don't have a good grasp of their own diseases?

Dr. Julius Birnbaum: Yeah, that's an interesting question. I think that there's a certain courage and advocacy that patients have to look about how they can inform themselves about diseases, and I think that's an amazing sense of resiliency. The issue is that a lot of the information that's sought is on the internet and social media. And unfortunately, there's a lot of myths that abound on it. And that's actually one of the reasons that the first chapter of my book is called “Myths and Pearls.” And so, I think it's a balance between how you advocate for yourself versus what is likely to distort your care on social media.

Trina Wilcox: OK. How important is self-advocacy for patients, and what exactly does that mean? What's it look like?

Dr. Julius Birnbaum: I think empowerment is when you feel that this unconquerable distance between you and your physicians is actually narrowed to the extent that you can partner with your rheumatologist. And then finally, you can make decisions that matter to you. And you're the individual. I think self-advocacy is what you do to remove those boundaries. And I think, oh, it's all about individualizing the care. For example, in rheumatology we're always trying to think about how active your disease is, how much inflamed activity it is, and there are physicians and patients who rate their scale as zero to 10. But self-advocacy is saying that your narrative about your disease is not going to just be assimilated in this algorithm, so to say.

So, for example, two patients I have. One is someone who loves fly fishing and developed very severe rheumatoid arthritis of the hands. And his life was unfulfilled because he couldn't take bait and just put it onto the hook anymore. So, he needed total eradication of disease activity, and when we did so, he was able to go back to what he felt was his life gave meaning. And you compare that, that's a different narrative to another patient I had: a grandmother who felt that, because of her arthritis, she couldn't hold up her grandchild safely. And maybe she didn't need her disease as carefully managed. Maybe she could tolerate low disease activity, but that was fine for her. So, I think that self-advocating for yourself means telling your physicians what your narrative is, what your hopes are, and understanding that, as a patient, you are different from any other patient.

Trina Wilcox: How important is it for each individual to understand their disease and the treatment? And I would just expect: Don't most people rely on their health care providers to let them know what they need to do?

Dr. Julius Birnbaum: I think that it's important to understand diseases, and I think that you could certainly get information from your disease via your physician. We're no longer in a paternalistic era. Previously, it was thought that physicians were the ones who had all the knowledge and therefore was responsible and would be acting in a way that was beneficent. But I think that we're in a new era, and it's where patients are involved in decision making. And I think that when that happens, patients want to go out and look beyond the information that's given for in medical visits. The Arthritis Foundation, and other disease foundations are good resources. Hopefully my book is a good resource. But I think understanding the diseases is important. It gets back to the point that, even though there can be uncertainty on the internet, it's the self-advocacy and the courage of patients to want to seek out these diseases that is really inspiring.

Trina Wilcox: As a patient that likes to be informed and do their research, there's a lot of caution with information that is not beneficial, even today with all of the AI agents, the places we can get information and research. How do we know what to trust?

Dr. Julius Birnbaum: Well, I think that's a great question, and I think rheumatology ultimately is going to be the field of medicine that needs to be less threatened by AI. And the reason is there's more of this mechanical, cold-blooded say about what they think the diagnosis is. It's not just about knowledge; it's about empowerment. And AI is not going to sit there and understand whether you want to go fly fishing or whether you want to hold your granddaughter up. That's something that I just don't think will be there. There's this humanistic ingredient in rheumatology that never could be replaced by AI. And I think the bond that you form with your physician is so precious. And I think AI, again, it's not going to be as relevant to rheumatology as other specialties.

PROMO: The Arthritis Foundation offers essential resources for newly diagnosed patients, including educational materials to help them better understand their condition. We offer support groups and online communities for patients to connect with others facing similar challenges. Additionally, we can refer you to health care professionals for guidance on treatment options and lifestyle adjustments. Learn more at arthritis.org/newly-diagnosed.

Trina Wilcox: Do you think that patients are better or worse about understanding their condition and speaking up for themselves than they used to be?

Dr. Julius Birnbaum: I think so. I mean, I think that patients do understand that they want to participate in the disease process. They want to understand which medications are going to be posed to them. They're going to want to also explore what potential side effects are beyond what might be shared by physicians. So again, I think that there's a sense that we're no longer in this paternalistic era and that patients have a right to, and are going to continue to be part of, their decision making.

Trina Wilcox: What are some common questions and concerns you get from patients?

Dr. Julius Birnbaum: A common concern is that when you start patients on what we call DMARD, disease-modifying antirheumatic drugs, most of these are immunosuppressive medications. And especially at the initial visit, it could be scary because I think that you hear the term immunosuppressing medications and your mind might go to a family member who might have had cancer and is on methotrexate, for example, and that's higher dose. So, I think that's one thing that needs to be related is that you're on immunosuppressive medications, but you still have an existing immune system. There's also a concern about vaccinations, and about vaccinations causing flares of disease, and why do I really need these vaccinations? And so, I think that's a second area of concern that a lot of patients have.

Trina Wilcox: When you get those questions about the medications and the vaccines, how do you respond?

Dr. Julius Birnbaum: Well, I think you need to validate the patient's concerns, and you openly need to say: These are the side effects. It's shared decision making. That doesn't mean that I'm not going to go ahead and say what I think is the right course of treatment. But at the same point, I acknowledge that you are a patient and there's a shared decision-making model. And ultimately, if you don't agree with me, then we'll go with your choices. And I think that's important.

I think vaccinations, the same thing. You have to know from a medical standpoint, we're thinking about trying to protect you from certain infections that we think could be serious if you're on immunosuppressing medications. And I state what I think my opinion is, plainly, but again, we're in a shared decision-making era. And if you feel that these vaccinations are not in your favor, then you'll say it. I don't necessarily need to agree with you about it, but I'm always going to listen to you. It's your body, and we're ultimately going to accept your choice.

Trina Wilcox: What's some information and tips that we can have to help us advocate for ourselves?

Dr. Julius Birnbaum: So much about advocacy is telling yourself that you're an individual and that your narrative of your disease process is so different than anyone else's. It sounds kind of weird, but when patients go, especially to their first visit, they should almost think about as they're auditioning for a part. Now it sounds a little bit unusual, but the reality is that you are going to be given maybe 40 minutes out of a day in which your rheumatologist is going to be seeing maybe 14, 15 other patients. So, this is your chance, and you need to tell your narrative. It’s not sufficient just to say, “I have joint pain.”

You have to say how joint pain is impairing your quality of life. Give examples of what you can't do that gives you pleasure. You want, by the end of the visit, for the patient to cement your disease with the narrative. And I think if that's done, then he'll leave the appointment, and maybe he'll do the dictation of your charts later on in the day, but he'll say, “Hey, this is who she is.” And that’s the key to establishing a really, really good relationship with your rheumatologist.

Trina Wilcox: I think that's an excellent point and a good idea: Create that visual in their mind. So, when you tell them you can't open the pop can or the bottle, maybe they'll think next time they go to grab the bottle: “This is what my patient’s talking about,” and have that understanding and compassion towards exactly what you're experiencing.

Dr. Julius Birnbaum: I agree. Because during that visit, then the rheumatologist is going to be doing an activity inflammation score, which tells like how active your disease is. And then in will go an algorithm and out will come a number, and that number might be the same for five of the patients that day. But the understanding is how to individualize your care, so you emerge with this kind of humanistic picture of yourself and not just a number in an algorithm.

Trina Wilcox: Yeah. Explain a little bit what is so important about people being involved in decisions about their health care?

Dr. Julius Birnbaum: Being involved in decisions of your health care means that you expressed your preferences at the time of decision making. So, for example, methotrexate is often the first DMARD that's suggested. And you really can't mix methotrexate with alcohol because it could cause severe injury to your liver. So, you enjoy a glass of wine every night. And that's a legitimate right that brings you pleasures that doesn't mix with methotrexate. So, there's going to have to be a different DMARD that's going to be used. It's a balance against your narrative that you enjoy a glass of wine, so that's your right.

Another issue is like, when it comes to how to use TNF-inhibitor medications, do you use it by injectable medications? Do you use it by infusions? And sometimes patients just want the camaraderie of other patients to talk about their diseases. They want to go to the infusion center because it creates less of a lonely feeling as opposed to a lot of other patients who just want the convenience of other medications. So, it's really about: How do you adapt all these medications towards your goals and ultimately what could cause you to live a joyous life.

Trina Wilcox: Yeah, and that's another important point, too, is to be very clear about your lifestyle and not putting a positive or negative on it, but explaining it. So, you are talking to your doctor about the best treatments for your lifestyle. You're not having something that will have those interactions that you may have never thought about, because I think sometimes, as patients, we think, “Oh, doctor’s going to think this is bad” if we say it. And it's not necessarily bad; it's just that there's an important reason to bring certain things up.

Dr. Julius Birnbaum: Yeah. I mean, there's no stereotypes or judgments on your values.

Trina Wilcox: Right, yeah.

Dr. Julius Birnbaum: That's the important thing to recognize. I think that's why narratives are so essential, and that's why it's a big part of my book, because it really does bring you to life in a way that ensures that you are a partner with your physician.

Trina Wilcox: How would you suggest patients getting involved in those decisions if they don't feel like they have ever been able to do that?

Dr. Julius Birnbaum: There's a bunch of different options. I think a lot of times, it's bringing family members or friends to the visit, and that could provide support. Now I will say that that should be practiced also, because you don't want ahead of time for you to start saying something and your spouse interrupts, and then the two of you are running over each other. So, that needs to be practiced. But I think establishing a support network is really, really important.

Trina Wilcox: Do you have some examples of a patient that came to you with this great self-advocacy and how it affected their outcome?

Dr. Julius Birnbaum: Sure. Well, I think of one patient who I had with psoriatic arthritis, and she was very… a lot of information about understanding about autoimmunity, the nitty-gritty of DMARDs. And I thought sometimes that she overthought her care, and that could lead to a set of inertia. But what I remember most about her was that she was then in a hospital. By then, she'd had a lot of CAT scans that were done of her abdomen and needed to have nasal gastric tubes put in. And so, she was hospitalized. And there was a first-year resident that came in with a sheet for her to fill out that the next day she was going to have a CAT scan, she was going to have a nasal gastric tube put in. And she was like, “I don't want a nasal gastric tube put in.” And the resident said, “Well, this is what we do for everybody.” And she’s like, “Well, you might do this for everybody, but I don't want a nasal gastric tube put in.”

And I thought this was such an amazing example, because she didn't care about the medical hierarchy. What actually happened: Everyone listened to her in the beginning, and she needed general anesthesia to put the nasal gastric tube put in. And it was something that seemed so radicalized because: Who puts in a nasal gastric tube under general anesthesia? The answer is, well, we did, because that's what she wanted, and she advocated for herself in many different ways.

Trina Wilcox: What about someone who didn't speak up?

Dr. Julius Birnbaum: I had this patient, a big, strapping 6’ 6” patient, and he would come to me during visits, and I would ask, “How are you doing?” “Fine.” It was sometimes hard to say whether there was joint swelling, just because he had big hands. And there was one time he brought his wife in. I'm like, “How are you doing?” “Great.” And his wife was there. And she’s like, “But you cry every night when you have this joint pain.” He thought that when he came to the appointment with me, he needed to have a certain sense of stoicism, but he was not advocating for himself.

And thank God he brought in another family member. And I was flabbergasted because I thought this guy had amazing disease control. And we did ultrasound and there was all this joint injury. And we went down the road finally of giving him good enough DMARD control. And his wife would come to every visit, and she’s like, “Well, he’s not crying every night anymore.” So, that was just a memorable  patient that I have.

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Trina Wilcox: What else would you like people to get from your book?

Dr. Julius Birnbaum: Well, a few things. I think what I'd like to get with the book is a sense of hope. And it's not a blind sense of hope, because when you're newly diagnosed, there are going to be some bumpy roads. But ultimately, we're in a golden era. We're going to be: Enter personalized medications, where medications could be tailored for you by your genes. And I think that's important. My book didn't say living with rheumatic diseases. It's living WELL with rheumatic diseases. So, a sense of hope. The second aspect: I think information is a step towards empowerment, and that's why I wanted to include information about a lot of different rheumatic diseases. But then the third thing that I wanted to do, and it was part of my book, is like, how to put you in the driver's seat when it comes to your decision. And I think that's the important thing I'd like to take from this book: the central message of empowerment.

Trina Wilcox: What else should we know about self-advocating for ourselves?

Dr. Julius Birnbaum: Self-advocating for yourselves, I think, again: Focus on narratives. I think it requires a deep sense of exploration sometimes and thinking where you want your life to be in 10 years. And these are questions that would not even occur to you if you didn't have an underlying disease process. So, these are pretty thorny questions. I think that it does require kind of this sense of introspection, because that's the key of treating this disease. You want to know, not where you're going to be in one year, but where you're going to be 10 years from now. And I think that's something that takes a lot of deliberation.

Trina Wilcox: Well, every time we have one of these podcasts coming up, we post a question on social media. We've got a great tribe there. So, we've asked if folks could share when there was a time they spoke up at their doctor's appointment, and we've got some responses. So, I'd love it if you'd chime in, too, and give your feedback. Taylor Ann and Norma Jean both said they didn't want any more methotrexate. Norma said that Plaquenil wasn't really enough, but she thought that methotrexate made her sicker and sicker every week. She finally said no.

Dr. Julius Birnbaum: Good. You know, because I mean, I think there's a sense sometimes, if you even look at the RA guidelines at first, you go with methotrexate, because methotrexate is the most logical agent. It's been there for 40 years. You, at all stages, should be so-called the boss and running the show for you. So, if you feel that methotrexate is enough for you, enough, and I think most rheumatologists would hopefully listen to you because of the courage that you took to express that and go on to a different medication.

Trina Wilcox: Yeah, good. Kristy Kirby said she was proud of her daughter, a JA warrior, Chloe, 12, from Buffalo, who spoke up at her last appointment. She told the rheumatologist she had been having skin issues behind the back of her ear and scalp and around her hairline. Nothing was helping. So, she asked the rheumatologist to take a look at it, and it was a good thing they did. It turned out to be full-blown psoriasis. She had to be reclassified to juvenile psoriatic arthritis, and I guess students were shadowing. They got to look at what this looks like and how to identify it. So, she was really proud of her daughter for speaking up.

Dr. Julius Birnbaum: This is like almost going to sound crazy, but I just had the exact same… Literally, five hours ago, I had someone who had so-called seronegative rheumatoid arthritis, and the resident came into the room and saw that psoriatic patch also in the back of the left ear. But the difference is, there's such a level of precociousness that she was able to speak up for herself. And I think that's the way that these diseases change people is: They cause a lot of patients, especially younger patients, to have a certain sense of maturity, to have curiosity and advocacy for their care. So, whoever the mother is, that's definitely proud for your daughter.

Trina Wilcox: Valentina said, “When my child got sent home with ESR of over 200, she got told, ‘Well, she's well, we're not worried.’” And then a week later, they had fevers, rest was followed, and she said, “The moral of the story is never just take what a doctor tells you as biblical.” (laughs) She said, “Question everything, and do your research.”

Dr. Julius Birnbaum: Yep. And that's exactly the point. We've all had moments of being fallible and incorrect, you know, myself included. And I think all physicians need to acknowledge their limits. And when that happens, you hope that there are going to be patients who are empowered enough to tell you what they think. And I think physicians need to acknowledge this, and hopefully most recognize that there are moments in which they're fallible. So, great for that ESR finding. Yeah.

Trina Wilcox: This is an important one. Sarah Ann says her first appointment with her then-rheumatologist, the doctor took one look at her, dismissed her. She said, “Why are you here?” She looked her up and down and walked out. The patient was an athlete, and so she was fit, but she kept saying, “I’ve got these pains in my knees.” Finally got the workup done, diagnosis, now sees a new doctor. But I think that's very shocking and invalidating. Just because you look like you feel great, for a doctor to tell you, “You’re fine, you look fine.” And that’s just not always the case.

Dr. Julius Birnbaum: Yeah. And I think that happens. And to feel de-legitimized and invalidated in this way, it creates a sense of emotional pain superimposed upon the pain that you're already feeling. So, I think that is unfortunate and it does happen. But yeah, I think that's where the courage that you have to keep forging ahead and trying to find a different answer is important in advocating for yourself.

PROMO: Arthritis Foundation webinars can help you better understand and manage your condition.  Available in real time and on demand, our webinars allow participants to engage with experts and access information at their convenience. Let our webinars empower you to take charge of your arthritis journey. Visit arthritis.org/webinars.

Trina Wilcox: After each episode, before we close, we like to take three takeaways from our discussion. So, I'll let you start with three things that you've taken away from our discussion today.

Dr. Julius Birnbaum: I'm glad to hear the response to readers on the social network is kind of resonant with what I reasoned I wrote the book. I want to instill a sense of hope that we are going to keep getting better, and I think we're in a golden era. I want to say that patients have a right for self-advocacy. And by that I mean, making sure that your disease narrative is unique. And finally, why I wrote this book is empowerment, because if you are a self-advocate, you will eventually be a partner with your physician, not just the patient.

Trina Wilcox: And my takeaways are to continue that great partnership with my care team, and I love the idea of really illustrating the narrative. Make sure you're not that forgotten number, but you're a patient with the story that needs answers. And lastly, my takeaway is to get this book. Where can folks go to find your book?

Dr. Julius Birnbaum: My book is available on most websites, Amazon and Barnes & Noble's. And you could also look on my website, juliusbirnbaum.com, for additional information. I think my book does provide a sense of empowerment and legitimizes patients' narratives in their journey.

Trina Wilcox: Well, thank you so much for what you're doing, Dr. Julius Birnbaum. Thank you for being here today, answering some questions. And thank you all for listening to the episode. You can always find more information at arthritis.org.

Dr. Julius Birnbaum: Thank you.

PODCAST CLOSE: Thank you for listening to the Live Yes! With Arthritis podcast, produced as a public service by the Arthritis Foundation. Get show notes and other episode details at arthritis.org/podcast. Review, rate and recommend us wherever you get your podcasts, on Apple, Spotify and other platforms. This podcast and other life-changing Arthritis Foundation programs, resources and services are made possible in part by generous donors like you. Consider making a gift to support our work at arthritis.org/donate. We appreciate you listening. And please join us again