Podcast: How to Make Yourself Heard

Full Transcript:
Released 7/11/2023

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. 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.        

MUSIC BRIDGE 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Welcome to the Live Yes! With Arthritis podcast. I'm your host, Courtney Wells. I'm a social work professor and researcher, and work with young people with autoimmune conditions. I also have been living with juvenile arthritis for nearly 40 years, and I've been volunteering for the Arthritis Foundation for almost 20 years. You may have heard me on some previous episodes of the podcast. And I'm happy to be back for today's episode about self-advocacy. 

Doctors and other health care workers may want the best care for their patients, but with the pressures of today's health care system in the U.S., many just don't have the time that they would like to dedicate to each patient. In addition, arthritis patients know their bodies, situations and needs better than anyone. So, it's important that they know how to advocate for themselves. 

We're excited for this episode, where we'll be joined by Stephanie Rosado, a PhD candidate in social work and certified wellness and health coach, who’s dedicated to promoting positive physical and mental health, particularly among racial and ethnic minority groups. She will discuss the importance of speaking up for yourself and strategies to make yourself heard, as well as why it's important to advocate for underrepresented people. Thank you for being here, Stephanie. 

Stephanie Rosado, MSW, CWHC: 
Thank you for having me, Courtney. I'm so excited to talk about self-advocacy and about arthritis. It's such a passion area of mine. 

Courtney Wells, PhD, MSW, MPH, LGSW:  
Wonderful. Why don't we start with just having you tell us a little bit about yourself and your research. 

Stephanie Rosado, MSW, CWHC: 
Well, I always start off by saying that I'm originally from Pontiac, Michigan. Because it's a part of who I am and also helps tie in everything else that I'm passionate about. I'm also a Latina, I'm Puerto Rican, and that also ties into my passion areas. My prior career was a professional athlete. I played basketball at the professional level.

Arthritis ended my professional career, because I have osteoarthritis, or OA for short. I was diagnosed as a professional athlete, which means I was young to get diagnosed with OA. And tells you a little bit about why I'm passionate and probably alludes to my research interest, which is underrepresented minorities. What do we know about young adults with arthritis, or osteoarthritis specifically? There's not a lot of research and literature out there, so I'm hoping to help kind of expand on that. 

Courtney Wells, PhD, MSW, MPH, LGSW:  
Thank you for telling us a little bit more about yourself. I'm curious about your research that you're working on, maybe for your PhD. Is that specifically what your dissertation is on? 

Stephanie Rosado, MSW, CWHC: 
I'm not focusing on younger adults specifically, but just focusing on osteoarthritis. And I'm interested in specifically studying how people are adapting to the disease. There are some changes that go along with that diagnosis. There are some changes that go along with the physiological symptoms that we encounter. Not just with the body, but mentally, emotionally, spiritually, in terms of our identity and how we see ourselves, and how others see us because of our diagnosis or what not. 

I aim to look at osteoarthritis in adults, 18 to 79, and: What are those identity changes that may be happening for them? What are those changes in satisfaction with life that may be happening for them that are underexplored and that maybe providers in the office need to be assessing for? 

Courtney Wells, PhD, MSW, MPH, LGSW: 
I love that. That actually overlaps a little bit with my research on... I'm really interested in grief. And I think, for a lot of people, their identities... that's a big part of it, is they lose some things along the way. 

Stephanie Rosado, MSW, CWHC: 
For sure. I know I did. I lost my career, my identity as an athlete, which is also why I'm so passionate about the alliance of social workers in sports, you know? To aid athletes in periods of transition, whether that's ending a career, an injury, other mental health transitions or struggles they're going through. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, you've got a lot of different aspects here going on from being an athlete, being in social work and your focus on underrepresented groups. If you could give the audience maybe a little background on different groups of people, and maybe how you've seen some disparities there. 

Stephanie Rosado, MSW, CWHC: 
We know that minoritized populations are underrepresented in research, in general. So, we don't know a lot about them. We don't know how they're experiencing a variety of diseases, including arthritis, osteoarthritis, rheumatoid arthritis. Because we don't have enough of that representation in the research for minoritized populations. 

That's been my experience with it. And being a minoritized population myself, as well as my mother, who was also diagnosed with osteoarthritis: I've lived it; I've lived that experience of not being understood, and cultural incompetencies from providers and orthopedic physicians that may not understand. Or maybe there's a language barrier there. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
So, you're a volunteer with the Tampa, Florida, Arthritis Foundation. And you were a speaker at this year's Pathways Conference. Can you tell us why you got involved with the Arthritis Foundation? 

Stephanie Rosado, MSW, CWHC: 
I felt like I just wanted to find a resource for myself about osteoarthritis, and I found the Walk to Cure Arthritis. And I'm like, "Oh, this is a Tampa Bay thing," right? So, I was like so excited by... I could just walk. I could do that, right? It's just a walk, I don't have to run anything. 

I participated in the following year's Walk to Cure, which was in person. It's just been a great experience, a great sense of community. And I think that's what's kept me involved, is that sense of community, and continuous learning about not just osteoarthritis, but all other arthritic type of diseases, and the struggles that people face. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
What did you speak at the Pathways Conference about? 

Stephanie Rosado, MSW, CWHC: 
It was really just providing a patient's perspective. Everyone hears "research," and that's a scary word to a lot of our communities. As you're developing the methodology for this research study, are you considering the voice of the patient? Are you considering how they will feel, or what they're thinking about, when you tell them that they may be involved in a research study? And how do we disseminate that? 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Oh, that's so great to hear. A lot of my research focuses on patient-centered research, and trying to figure out: How do we get more voices into the research whole machine that we have? And it's hard, it's really hard. 

Stephanie Rosado, MSW, CWHC: 
Yeah. So, can you talk a little bit more about that? I would love to know more and maybe our audience does, too. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, I can tell you a little bit. I started a youth council a few years ago that is funded by PCORI. And we do exactly that. We take young patients, they're 16 to 22 years old, and we train them to be patient researchers. So, we are developing a curriculum, and then we help them learn how to work with researchers. And then we help connect them to researchers, so that they can participate in researcher studies. Then we mentor them and support them along the way. 

Some of our young people know nothing about research whatsoever, and maybe have negative feelings about it. Others are college students who are volunteering in labs and things like that. So, we have a wide range. But we really are trying our hardest to get as many different types of people to be involved in the research process. 

Stephanie Rosado, MSW, CWHC: 
That's awesome. Talk about "self-advocacy." Like that right there, that's really giving someone a tool that they can use. Not only to learn more about what they're experiencing, but also to contribute to this bigger advocacy piece, you know? To push the needle forward in terms of arthritis research. So that's amazing. Thank you. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, it's cool. 

PROMO: 
The Arthritis Foundation’s Live Yes! Connect Groups are empowering support groups that bring people together for informative events and engaging activities. Peer-run and volunteer-led, they offer a place of understanding and encouragement and cover all kinds of topics. Find a group that matches your interests at https://connectgroups.arthritis.org.  

Courtney Wells, PhD, MSW, MPH, LGSW: 
Could you talk a little bit more about how people could become involved in research, or how research could better incorporate people from different backgrounds? 

Stephanie Rosado, MSW, CWHC: 
Yeah, it's funny. Because we said that is a form of self-advocacy, getting involved in research. My personal opinion, my take on it is: that that power dynamic needs to be removed. People can get involved in research if they want to. But researchers need to do a better job of disseminating information so it's understandable to potential participants and things like that. So, I think the responsibility is on the researcher to do that and to make it less scary for participants. 

Courtney Wells, PhD, MSW, MPH, LGSW:  
That brings me to my question for you about self-advocacy: How do you define that? And what does that look like for the people that you work with? 

Stephanie Rosado, MSW, CWHC: 
I would define that as: using or leveraging every tool, every skill and resource available to you, to ensure that your needs are met, and that you're taking an active role in creating the best outcome possible for yourself. And so, when I say, "every tool, every skill, every resource," I mean, "everything." Because advocacy is not just about speaking up and talking and advocating in spoken language, right? 

Advocating is being a part of research. Advocating is educating yourself. Advocacy is very much speaking up for yourself at a provider's office, to tell them what you are experiencing, and how you're experiencing. It's also negotiating work responsibilities because of your illness. Maybe you need a standing desk, maybe you need other modifications. And self-advocacy is also setting boundaries with people. Even housework with your partner or spouse at home. It could be as simple as that. That's self-advocacy. 

Courtney Wells, PhD, MSW, MPH, LGSW:  
A lot of times when I talk about "advocacy," people think I mean, "Go to the legislature, and testify," and do those formal things. And those are really wonderful. But it doesn't have to be that formal. Can you talk a little bit about what you found about the importance of self-advocacy, especially in the context of arthritis? 

Stephanie Rosado, MSW, CWHC:  
I have felt unheard in providers' offices. So, I think my self-advocacy has come out in the form of: It doesn't matter where you are, who the provider is, you have a responsibility to yourself to continuously advocate. I've been in providers' offices where I felt unheard. Or perhaps I felt rushed, or even brushed off, because I am a bit younger than your quote, unquote, "typical" osteoarthritis patient. 

I've asked like, "Hey, can you slowdown for me? I really want you to know what I'm experiencing." Equipping myself with the language that they can understand. "Doctor, this is affecting my activities of daily living." Because they understand that. 

A form of self-advocacy for me has been letting the providers know what they're doing well, too. So they can do it with everyone. They can do it with the next patient. "Thank you for taking your time with me." Simple, but it goes a long way, right? I think providers remember that as well. 

Courtney Wells, PhD, MSW, MPH, LGSW:  
I'm curious if there's any cultural aspects of self-advocacy for you, or if you see that that plays into any of your cultural background? 

Stephanie Rosado, MSW, CWHC: 
Just in general, culture sometimes brings up a lot of different things for different people. For example, a big one is food in a lot of different cultures, right? And we know that food can flare up some type of inflammation sometimes. Food can also be comforting, but also cause you to gain weight if we overindulge. 

Sometimes when my mom wants to scoop that extra little rice on the plate, I'm like, "No, Mom, I can't do that, because I'm trying to keep a healthy weight for my joints." Or whatever it is. And so, being able to advocate for yourself in that sense, where you can't partake in a particular cultural event or indulgence, whatever it is, and being able to say, "Hey, I can't do that, but this is why." That's one way I think of it. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Thank you for giving that example. 

PROMO: 
Your voice matters. You have the power to make arthritis a higher priority in American health care. Influence state and federal policies, health care laws and research funding … and bring arthritis out of the shadows. Go to https://www.arthritis.org/advocate and sign up. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
What kind of goals do people need to advocate for, or things that they're working towards? And what are some ways that you would recommend working towards those goals and advocating? 

Stephanie Rosado, MSW, CWHC: 
That's a good question. One goal I had for myself, like I said earlier, to be able to self-advocate is to educate myself, right? I believe that education is power, and the more knowledge you have, the more power you have. The less susceptible you are to misinformation. And the less susceptible you are to misunderstand what a provider is telling you, or what anyone else is telling you, for that matter, you can make more informed decisions. 

If you just got diagnosed with an arthritic condition, and you're like, "I know nothing about this disease. No one in my family has this disease, I don't know anything, and it's scary," right? And you have to go to learn more about it. So, go to the Arthritis Foundation. Don't just use Google, because Google can give you some wonky results too, you know? Go to the Arthritis Foundation and read about your particular condition. 

Go to the CDC. Go to these reputable organizations and research that organization that's going give you concrete information. That's just one example of how, when you set a goal for yourself when you're diagnosed with an arthritic condition, how you can go about kind of achieving that goal through self-advocacy. 

You will have trade-offs when you get your diagnosis. So, a form of self-advocacy is finding ways around. Or what can you do that can give you that same fulfillment without giving up too much? I think about parenting, too, like maybe you can't go out and run with your kids like you like to, but maybe you guys can go out and ride bikes, something like that, because it's less impact. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
It sounds from your experience that you also believe it's important to advocate for other people. Can you talk a little bit about that? 

Stephanie Rosado, MSW, CWHC: 
Yeah. I do believe in paying it forward in everything, whether it's advocacy or whatever I do. I believe in paying things forward. Someone did it for me, so I want to do it for somebody else. And I want that person to do it for somebody else, because that's how we make long-lasting change. One of the ways I do that, again, is sharing my story. 

Even if your story reaches one person who resonates with it, it makes a difference. You don't have to reach the world and make world impact, you know? Even if it's just one person, you can change their life. Even if it's small, when someone does something for you, I believe in paying it forward and, selfishly, it does help me. Like it makes me feel good about what I'm doing. It makes me feel like I'm having an impact at the same time, so it's a two-way street. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, great. Thank you. 

PROMO: 
If you have arthritis or are taking care of someone who does, we’ve got information you can trust. Get tips on healthy treatments, plus news and inspirational stories. Learn all about arthritis and the resources we offer. Go to https://www.arthritis.org/. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
We had some social media comments here, some listener questions or comments. And one of the prompts went out was: "What do you have to fight the hardest for?" These are some of the responses that we received: insurance to cover medication; strength, both physically and mentally; constant comorbidities that tag along with RA; accessibility, specifically elevators on campus and trying to get around in different spaces; and social aspects of the diagnosis; managing pain; building a treatment regimen. Any of these sound familiar? 

Stephanie Rosado, MSW, CWHC: 
These all resonate, you know? Insurance to cover medication... Two months ago, where a medication that I had already tried that had worked was denied by my insurance. Because they changed their rules and what they cover and all this stuff. So, now I have to go through step therapy and fail first before I can get it covered again. I resonate with that. 

Strength, both mentally and physically… You definitely need strength in both areas to move forward. And also the strength to seek help if you're struggling in that area, especially mentally. I'm a huge advocate for mental health. There's strength in getting the help that you need. 

The social aspect of having a diagnosis… In a study that I conducted last summer, and that was recently published, was that young people with osteoarthritis — and I assume it's the same with any type of arthritic disease — is the sex life component. You're young, you're in your prime, your intimate relationships may be a big component of your life during that time. We don't talk about it, because it's taboo, and so that's something that's underexplored and that needs to be talked about more. 

Yeah, all of this stuff. Building a treatment regimen… How do you do that, right? That's something else we need to be educated about. So yeah, I resonate with all of these. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Wonderful. Well, we typically like to close the podcast each time with the top three takeaways from the discussion. 

Stephanie Rosado, MSW, CWHC: 
One of them: You're still a person with needs, wants, goals, things that you want to do with your life. So, work with your providers to advocate for yourself, your life and the life that you want to live, to build a treatment regimen that is good for you and that helps you still feel good and feel whole. That's one. You want to go next? 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Our conversation has made me think more about this idea that: Sometimes when we go in to see our providers, there's this clear doctor-patient... “I’m supposed to act this way. I’m not supposed to do these things.” And that's not how it needs to be. They're there to help us, and so if we don't tell them what we need and what we want and how we want it, then how are they going to help us, really? If we don't advocate and ask for what we need, and tell them when we're having a hard time… I think that I’m constantly trying to reframe that for myself. 

Stephanie Rosado, MSW, CWHC: 
Yeah. Another takeaway for me would be asking how we can give back, right? Even in the most difficult times, when we receive a diagnosis, or we're struggling with something, how can we look for that silver lining? How can we give back? How can we ensure that someone else doesn't go through the same thing? Or at least, if they do experience, for example, the same diagnosis, they have more tools, more education, more research out there for themselves to better handle that disease, that diagnosis, or that experience with the disease. Always ask yourself how you can give back with what you're experiencing, even though what you're experiencing may be a difficult situation. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, that's wonderful. I also really liked your points about being young and trying to train health care providers that young people do get these conditions. Just because somebody looks a certain way, you make a lot of assumptions about them, and that doesn't necessarily have anything to do with their truth. 

Stephanie Rosado, MSW, CWHC: 
That's a great point and a nice takeaway. Just because you're younger doesn't mean you can fight it better. Being able to verbalize that loss or that grief, or the things you're struggling with, for a provider can really impact your care in a positive way. Because, like you said, if you let them know what you're experiencing, then the responsibility is on a provider to kind of go, "OK, what can we do with this?" 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Yeah, exactly. And then that helps pay it forward, right? 

Stephanie Rosado, MSW, CWHC: 
Yep. 

Courtney Wells, PhD, MSW, MPH, LGSW: 
Wonderful. Well, thank you Stephanie. It has been really great talking with you today. And I think we've all had a lot of good reflections on self-advocacy. 

Stephanie Rosado, MSW, CWHC: 
Thank you for having me, Courtney. I really enjoyed this. 

PODCAST CLOSE:      
The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!