Don’t Be Afraid to Talk to Your Doctor

 

Don't Be Afraid to Talk to Your Doctor Transcript

For Release Oct. 22, 2024

 

PODCAST OPEN:      

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. This podcast and other life-changing resources are made possible by gifts from donors like you. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts.

 

This episode of the Live Yes! With Arthritis podcast is brought to you in part by AbbVie.

 

MUSIC BRIDGE
 

Stacy Courtnay:

Hello everyone, and welcome to the Live Yes! With Arthritis podcast. I'm Stacy Courtnay, your host for this episode. I was diagnosed with rheumatoid arthritis about 25 years ago. I live in Atlanta, Georgia, and I have been a volunteer with the Foundation for about seven years now. I'm also the current board chair in the Atlanta market. And really, I've made the Arthritis Foundation and volunteering my passion. And one of the opportunities that I get is to host some of these really fun podcasts.

 

No one should ever be afraid to talk to their doctor, but the truth is: Experiencing fear, stress, anxiety — in talking to physicians — is fairly common for patients. The added stress of being in a clinic or doctor's office can have real effects, even elevating a person's blood pressure, in which we've all heard before is called white coat syndrome. And for those of us that have chronic conditions like arthritis, these settings may seem like old hat. But there's always room to improve communication with our health care providers. But how do we do that? And what are some best practices when we're talking to our doctors?

 

So, in this episode of the Live Yes! With Arthritis podcast, we aim to answer these issues and share how you can tame your fears, whether they're simple reservations or real phobias of doctors. And the real phobia of doctors is called ilatrophobia. We’re going to help you learn how to communicate with your health care providers effectively and successfully if you have white coat syndrome and you have a real phobia with doctors.

 

Today I'm joined by Stephanie Rosado. She has a PhD in social work and is a certified wellness and health coach. So welcome to the podcast, Dr. Rosado.

 

Stephanie Rosado:

Thank you for having me, Stacy.

 

Stacy Courtnay:

Tell me a little bit about yourself and your experience with arthritis.

 

Stephanie Rosado:

I got an official diagnosis with osteoarthritis, or OA, in my early 20s. But it likely started earlier for me. I tried every strategy out there, at first to kind of just relieve some of the pain and limitations that I was having before I got diagnosed. But then things got a little too painful, and it started restricting what I was doing at that time. I was a collegiate and professional athlete. I got diagnosed in my college playing career.

 

I tried everything to try to preserve and save and salvage my career, from injections, double knee reconstructive surgeries or high tibial osteotomies, failed OCAS procedures, or osteochondral allografts, injections, physical therapy, extreme weight loss, even though I was already at a healthy, athletic weight. But ultimately OA stripped me of my professional playing career as a basketball player. And then I went through a variety of life transitions after that time, as you can image.

 

I went on to pursue an MSW, which is a Master of Social Work. And then shortly after that, after working in social work for a little bit, I went on to pursue my PhD in social work. And that PhD research focused on identity transitions while living with OA and its impact on well-being. And early on in my PhD, I found the Arthritis Foundation. I started volunteering, and I was like, "Ooh, I found my community. Like, this is my people." And I have been involved ever since.

 

So now, currently, I'm a research and evaluation professional at a private nonprofit, grant-making organization that focuses on improving health equities, specifically through racial equity, in focused areas of the south St. Petersburg, Florida, community. And I'm also adjunct professor in the USF School of Social Work.

 

Stacy Courtnay:

Let's dive right in. So, what is it about doctors that cause arthritis patients fear, stress, anxiety, or just reservations about talking to health care providers in general? What is your experience with that?

 

Stephanie Rosado:

When people are in pain and desperate, as I was, to get back to their life prior to the diagnosis, right? For example, me trying to hold on to that playing career, that was my passion. I need to show that I'm working hard to do all these things.

 

I don't want to be perceived as lazy. I didn't want to be perceived as faking it or being overly dramatic. Because I'm young and I'm strong and I should be able to just keep pushing through it. Oftentimes, the inability of providers to lean in and empathize and make it seem like they actually cared as a person made me afraid to tell them how badly my diagnosis was affecting not just my physical state, my pain, but also my mental health and my social health.

 

Stacy Courtnay:

I would always worry about, well, I know there's somebody who's a lot worse than I am. You don't want them to think you're a hypochondriac. And that you're exaggerating your pain and your symptoms. And another fear, too, is a lot of times the doctors make you feel like they're the expert. But you’re the expert of your body and how you're feeling, and you shouldn't be ashamed to tell them just how bad it really is. And like you were saying, the emotional side of it, as well, not just the physical pain.

Stephanie Rosado:

Yeah. And that's actually a recommendation that I would give to any of our listeners. Providers are the experts in the physiology, the actual condition. But you're an expert in your lived experience, and they don't know that lived experience, what you're struggling with, how it's affecting your livelihood, unless you communicate that to them.

 

Stacy Courtnay:

Exactly.

 

Stephanie Rosado:

I've been already diagnosed for over a decade, right? So, once I started gaining more knowledge through lived experience with OA, visiting doctor after doctor, getting well-versed in the literature and the research throughout my PhD, I developed this fear or apprehension about disclosing how much knowledge I had about my condition. And I think this is true for patients who have lived with their condition for a long time. What comes to mind for me specifically are those patients like JIA, juvenile idiopathic arthritis, that at such a young age, they become these experts in their disease. Did you experience any of that?

 

Stacy Courtnay:

Yes, absolutely. That makes me so sad. Because we know as adults how hard it is to express ourselves to the doctors. And then you do have the kids. And I just can't imagine, they're having to relay the information to their parents, and the parents are trying to relay it to the doctors.

 

Stephanie Rosado:

Not just how to manage your disease, but how can you manage your own doctors' appointments and have that confidence to speak up? Maybe you don't have all the medical terminology. But you can say, "Hey, this hurts right here." Or "This hurts me when I do this." Or "I don't quite understand what you're saying. Can you explain it in a better way?"

 

PROMO:

All year long, the Arthritis Foundation is putting a spotlight on how serious chronic arthritis pain really is. We’re also sharing inspirational stories, as well as tips, solutions and resources to help manage your specific type of arthritis pain. Visit arthritis.org/pain.

 

Stacy Courtnay:

What do you think some of the dangers and challenges are of not talking to your doctor? Or going to see a doctor at all, I mean. Because people will absolutely avoid going to the doctor because they fear it so much.

 

Stephanie Rosado:

One of the first things that comes to mind for me, as far as challenges and missed opportunities that come from not talking to your doctor, is missing out on building a healthy and productive relationship with your provider. Like any relationship — intimate, familial, friendship — the cornerstone of a healthy relationship is going to be communication. And that holds true for the relationship with your provider, your orthopedic provider, your rheumatologist. It may be hard at first, but they must be able to communicate and listen to you. And you have to reciprocate that in order for the relationship to be productive and to benefit your well-being and your health.

 

Stacy Courtnay:

You're not going to have the improved health or the improved outcome that you're looking for if you don't have that great relationship with your doctor. And then talking about your goals and having shared decision making, like, having that relationship and trust with your doctor that you can actually talk about what your goals are short term and long term. Then, hopefully he hears you and respects those goals and that you work together to put together your treatment plan, which is going to lead to better health, lead to better quality of life, lead to better outcomes.

 

Stephanie Rosado:

Yeah. And I think it's easy for us to talk about this and say, "Oh, these are the things you should do." Because I sometimes still go through that apprehension of discussing certain things with my doctors. But there's really four scenarios that can happen.

 

One, you get great care without having to fight or advocate for yourself. That's ideal, right? You don't have to do anything. They understand you, it's all in your chart. And they read it and, boom, you're having a great relationship with this doctor. Two, you get the care you need because you are diligent and strong in your communication and your self-advocacy, which results in good health; to your point, it results in good health care outcome. And that's good, too. Sometimes doctors may not get it all quite right. They're humans, too. They're trying to figure it out.

 

But now you have the other two scenarios that can happen, which is: You don't receive the care that you need because you didn't speak up yourself. Which leads to poor health outcomes ultimately. And then you don't receive the care that you need even while advocating for yourself, in speaking up about the experiences you have. The outcomes may be the same, but the difference here is that someone's going to learn something out of that. I think that quote of “stand for something or you’ll fall for anything” kind of plays into that here.

 

Your self-advocacy means that someone may not have to go through that same experience when they come in to see that provider. Maybe you have to switch providers if that provider didn't help, or you had to advocate too much, and it just didn't work out; it wasn't a good relationship for you. But when you advocate, someone learns: A provider changes their perspective; you learn, too; policies and practices may change. You influence the health care experience for someone else.

 

So, for me, personally, I choose to speak up, even if it's that fourth scenario where I still don't get the care that I need. Speaking up is also about the broader community and making an impact on health care in general. I think it's so important to realize that yes, we do it selfishly for ourselves to improve our outcomes, but also, we self-advocate. And we need to speak up and kind of get away from that fear, so that we can also help others that may be in the same predicament.

 

Stacy Courtnay:

I really like that. And I think that's why we volunteer with the Arthritis Foundation, right? Like, of course, we do it for our own reasons, to feel better and have support. But we're also trying to improve the lives of the entire arthritis community. I love that answer.

 

What are some techniques to overcome these fears? What are some natural things that you can do to prepare yourself for appointments, get ready for it, to lessen your anxiety?

 

Stephanie Rosado:

My thing, and this is stemming from like the athlete, is: Have a game plan. Make a list. Before you go into that doctor's office, you need to write out, if it's on your phone in the Notes app, so you can have it with you. You won't forget that piece of paper, whatever it is, right? Is it an email that you send to yourself so you can pull it up on your phone, so you can stay focused on all the points you want to make?

 

It offers some reassurance and some confidence, right? Like, “I’m going in with a list. I know what I’m going to say. I know it. I’ve got it. And if I forget, I can refer back to my list.” And it's starting off that appointment with, “Hey, I have a list of things I want to cover with you,” also sets the tone that you want to get through these things. And a provider will be like, “OK. What’s the list? Let’s talk about it.”

 

The other thing is to do is a bit of reading about your condition, so you can come up with informed questions. And these readings should come from reputable and science-backed sources. The Arthritis Foundation website, the CDC or other reputable health organizations. I think this is really empowering when you can say, "Yeah, I've read about this. Can you tell me more about X, Y, Z?" Or "How does this relate to me and my condition? I read this article about diets and my condition. Can we talk about that during my visit today?" I think that's very empowering for a patient.

 

And then also: Practice makes perfect. Talking to loved ones and family members about your concerns you want to bring up during the next visit; this will help you  pinpoint areas where you may need to clarify a bit, right? Also, talking to them may uncover additional areas that you hadn't considered and questions you hadn't considered to include during that appointment. And if you're vocalizing yourself to your family and friends, maybe it becomes a little bit easier when you're in the doctor's office and need to restate some of those things.

 

Stacy Courtnay:

I always like to go prepared with a list of questions. That makes me feel like I'm in control, right? I've written down everything I want to talk about. I also think it's helpful to write down some goals, like short-term goals, long-term goals, that you can talk to your doctor about. One big thing, because I always forget: my history. So, when they say, "How have you been the past couple weeks? How have you felt? Have you had swollen joints?" And I'll be like, "Well, yeah. The past two weeks have been great." But then I forgot that a month ago I had a major flare-up. I do like to journal in my phone, between visits, and make notes so that I can tell him. Because I will just forget. He needs to know those things. That makes me feel more in control, too.

 

Stephanie Rosado:

That's such a good point, Stacy. And, you know, now it's so easy. I think they call that habit tracking now, right?

 

Stacy Courtnay:

Yeah.

 

Stephanie Rosado:

Or symptom tracking, or something like that. And there's so many free apps that you can download to track symptoms, a variety of symptoms or a variety of habits. I'm exactly what you said: " I'm feeling good now, but, dang, when was that flare that I had?" So, I need to get better at that and kind of practice what I preach. But we're all a work in progress, right? That's something that I'm working on. So, it doesn't have to be all or nothing.

 

PROMO:

Over the past seven decades, the Arthritis Foundation has invested over $500 million into scientific research, advancing arthritis treatments while pursuing a cure. Progress is being made every day, thanks to the contributions of people like you. Learn more about our research initiatives at arthritis.org/science.

 

Stacy Courtnay:

We talk about things that help you overcome the anxiety at your appointment. I would say take a family or friend with you that's calming. Pick a time of day that you know is like a good day for you, a good time. If mornings stress you out in traffic, you don't want to arrive at your appointment completely stressed out. Try to be strategic when you book the appointments so that you're going in there as relaxed as possible. Can you walk us through some popular techniques or some things that you would recommend that patients could do on their own to regularly calm their fears?

 

Stephanie Rosado:

Right before the appointment, maybe even while you're sitting in the waiting room, if you're having some fear or anxiety around the topic, just taking some time to take some deep breaths, just to calm your nerves a little bit. To your point earlier, if someone does come with you, if you have that social support, tell them how you're feeling at that moment. That can really help alleviate some of the feelings of anxiety and stress because they can validate what you're feeling.

 

And maybe if someone's not there with you, I've had my partner on speaker phone when my partner maybe couldn't come to a specific doctor's appointment because they had to be somewhere. I would tell the doctor, "My partner is on speaker phone. I will have them on speaker phone so that I feel supported, or so they can know what's going on." That's another strategy. Have someone there so you don't feel as nervous and timid, and they can relax you a little bit in that moment right beforehand.

 

Stacy Courtnay:

Yeah, and one thing that I was just thinking also is being honest with your doctor. I think a lot of times, some people might withhold information because they might be scared of sharing what's really going on, and they don't want to know if there's another chronic illness going on or something else wrong. Just being honest with your doctor and being upfront about, "Hey, I have a lot of anxiety about being here." And I think if you're really vulnerable with your doctor that they'll hopefully reassure you.

 

Stephanie Rosado:

You're helping to jog my memory as you speak, too. There have been times where a doctor comes in too fast, like, "What's going on? How can I help you today?" And I'm like, "Whoa, whoa, whoa, I'm emotional right now. I'm actively in an OA flare. My knee is swollen. And I'm really kind of upset right now." And I've told them, like, "Hey, can we slow this down? I know you have so much patients ahead of me, but I need your patience now."

 

And I've gotten good feedback from that. Like, "Oh, sorry. I wasn't trying to rush you, I'm just in my motion, my day-to-day." I think being vulnerable, being open and honest with your provider, can really help to validate your feelings and make you feel heard, and kind of calm you down so you can have that confidence going forward to speak about what else you're experiencing.

 

Stacy Courtnay:

For me, there's so much fear in having a chronic illness and that you're on these medications indefinitely, perhaps for the rest of our lives. And the worry and the anxiety in general, just not even going to the doctor, but living with a chronic illness and the unknown. It takes an emotional toll. You want your doctor to be able to relate on that side. It stinks to think about: There's no cure right now, and we're going to be taking these medications for decades. And it's scary.

 

I just saw my doctor this morning. I had my infusion. I always stop by to see him. It's just reassuring to have him. He swings by the infusion lab and checks on me.

 

Stephanie Rosado:

That's great.

 

Stacy Courtnay:

It's just scary to have a disease like this.

 

Stephanie Rosado:

We also have providers that may listen in, so I'm glad that we're sharing this. Because it's just a reminder: “Hey, remember your patients. Yeah, I know you have a caseload to get through, but those small gestures, coming to check in during an infusion or even during the appointment…” “OK, I don't want to know about just your pain; how are you doing as a person?”

 

“How are you doing emotionally? How are you doing mentally? How are your relationships? How are you navigating at home with your small child, if you have one?”

 

Stacy Courtnay:

Yes, absolutely.

 

PROMO:

The Arthritis Foundation tests and certifies products and packages that are proven to make life easier for people with arthritis, chronic pain and physical limitations. An Ease of Use certification recognizes products that can be easy to use by everyone. Explore them at arthritis.org/easeofuse.

 

Stacy Courtnay:

I'm going to move on to the social media question that we posted a couple of days ago. We asked, “What is your biggest fear when talking to your doctor about your health? And how do you overcome it?” So, we got some responses. I'm going to read a few of them. "My biggest fear or worry, like many of us, is that I won't be heard." I think that goes back to everything we've talked about today.

 

Stephanie Rosado:

I think one of the questions we have to ask ourselves is: What is that fear based off of? Is it past experience? If so, do we give this new provider a clean slate to be heard and try again? Kind of asking ourself: Where is this belief that I won't be heard, where is it coming from? And can I challenge it?

 

Stacy Courtnay:

Right. The next person posted, "I fear that my doctor will think that I'm pill-seeking."

 

Stephanie Rosado:

Ooh, yes, that is a biggie, I feel like, in the arthritis community. It's the perception. We're scared to be perceived as something. The perception to be a know-it-all, right? I don't want to be known as a difficult patient if I speak up. I don't want to be the patient who is looking for stronger meds or opioids. I don't want them to think I'm addicted to drugs, right? I don't want to be the patient who is overly dramatic, the patient who is being weak, the patient who is uneducated or not smart enough to understand the medical jargon. And the list goes on.

 

So, we're letting these assumptions about what someone would perceive us as… We're letting that limit the good care that we deserve.

 

Stacy Courtnay:

Yes. Another user: "I'm fearful that my doctor thinks that I'm a hypochondriac because so many things hurt."

 

Stephanie Rosado:

Yeah. These are all very real reasons why people don't want to communicate. But at the end of the day, I think the motivational factor is: One, we mentioned — getting the best care that you deserve. I don't care they think that I'm a hypochondriac. I don't care they think that I'm this or that or whatever. I need this for me to feel better, for me to function in my daily life, for me to be a good family member, for me to function as a mom, an aunt, a sister, a dad, whatever it is. So, I think sometimes we've got to be a little bit selfish and not let the fear of these perceptions seep in, because we deserve the best care possible. We're also speaking up not just for us, but for the wider community as well.

 

Stacy Courtnay:

And then, another user said, "When there is pain and discomfort, but yet the reports are all normal and the doctor tells you to wait and watch." I agree with that. That is difficult, when you're swollen and you're in pain and you're in tears, but yet all your labs appear normal, and then it's like: How does this happen?

 

Stephanie Rosado:

Yeah, I don't have that experience with biologics and those medicines. But because OA is a chronic disease that doesn't have a cure, and sometimes the symptoms don't align with the radiographic outcomes, I've had doctors tell me, "Well, you have OA. Come back and see me when there's something new, because there's nothing I can do."

 

And I pushed back on that. Because no, there's nothing you can offer me physically, but maybe I should seek out some other type of help with this. Is that mental health therapy? “Is there something else that you would recommend that can help me deal with this all the time?”

 

And so, I think if there are any providers listening, especially for the osteoarthritis community, sometimes there's not anything you can do for this patient at the moment. But is there something else that you could offer or refer them to that could help them deal with the social aspects of having the disease? — the emotional, very real emotional aspects of dealing with a chronic disease, whether that's osteoarthritis, rheumatoid arthritis, whatever it is.

 

Stacy Courtnay:

Yeah. And it's for any chronic illness… cancer, you know, whatever somebody's dealing with. I know that frustration lies with sometimes when the labs don't match up with how you're actually feeling, and so then you're worried that your doctor thinks that you're just crazy and you're exaggerating. It's a vicious cycle. Well, is there anything else that we can provide the listeners? Or we could just go to talk about our top three takeaways from the episode?

 

Stephanie Rosado:

We can talk about takeaways.

 

Stacy Courtnay:

I've got my top three here, so I'll start. I love what you said: "Have a game plan." You know what you want to talk about, you feel in control of how the appointment's going to go. And the game plan should include your questions, your concerns and also your goals. I like being vulnerable with my doctor, and really being honest with him, not withholding information. I think that brings him down to my level. We talk a lot, and we've built this great relationship.

 

And so that leads into my third: I think it's important to have a good relationship with your doctor, so that you can communicate, so that you're less anxious, that he understands how difficult it is for you to be there. Work on your relationship so that you trust one another and that you can have shared decision making, which will lead to better outcomes, better quality of life for you. And hopefully each appointment will give you less and less anxiety if you establish kind of a routine for your appointments and also establish that rapport with your doctor.

 

Stephanie Rosado:

I'm going to give you two takeaways that I got. Because you took all the other good ones. The first one is: Don't let the fear of what you think someone else will perceive you as inhibit you from receiving the optimal care that you deserve. Because we're operating based on an assumption that someone will perceive us some way, when it's like, "No, if I don't speak up, I'm not going to get the care that I need because they don't know fully what's going on." So that's the first one.

 

And then the second one is: You are the expert in your lived experience, period. The doctor may know about the condition, they may know about the physiological components and all that stuff. But they don't know how it's affecting your quality of life, your relationships, what physical activities you're specifically limited in. And they won't be able to offer you the additional resources or refer you to other things if you're not speaking up about those experiences. They need to know in order for you guys to game-plan together.

 

Stacy Courtnay:

Absolutely. Well, I thoroughly enjoyed this conversation. You are a wealth of knowledge, and I love your personality and your outlook. And you're really fun to chat with. I also want to thank our listeners for joining us today. This has been a great conversation. I hope it was super helpful.

 

I want to encourage anyone who's listening to go to arthritis.org for more resources on arthritis, from pain management to diet to any questions you might have if you're newly diagnosed. To listen to our podcast, you can visit us at arthritis.org/podcast, where you can listen to this episode, as well as any previous episodes that we have recorded.

 

Thanks again for joining us. Stephanie, it was so nice to meet you. And everybody, have a great week.

 

Stephanie Rosado:

Thank you.

 

PODCAST CLOSING:

The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. Gifts from people like you make our podcast and other life-changing resources possible. You can donate at arthritis.org/donate. This podcast aims to help people living with arthritis and chronic pain live their best life. For a transcript and show notes, go to arthritis.org/podcast. Subscribe, rate and review us wherever you get your podcasts. If you subscribe through Spotify, leave a comment on their platform, letting us know what you think about this episode. And stay in touch!