Category: Patient Partner

Science is Hope

Hope has always been a slippery idea for me. I was diagnosed with juvenile rheumatoid arthritis (JRA) in 1985 in St. Paul, MN. I was 18 months old, and it took months to receive a diagnosis because there was not yet a pediatric rheumatologist in my area. My early treatments consisted of aspirin, large doses of steroids, and gold shots (yes, they used to inject gold into joints!). I was regularly hospitalized, where I would be strapped to boards for blood draws and given ice baths to reduce inflammation. At home, my parents, who struggled with their own trauma histories and mental health challenges, would pin me to the floor and force dozens of medications down my throat because I refused to take them. They watched me limp in pain with little hope that things would get better. We were told that I would likely need to use a wheelchair and that I might not be able to have children or work a full-time job.

My future did not feel bright, and my adolescence was full of hopelessness. I was struggling with anxiety and depression, which went unaddressed by my parents and undiagnosed by my providers. However, somehow, my health didn’t affect my grades. I loved school. It wasn’t easy and I had to work harder than my peers in many ways (I knew nothing yet about accommodations), but I learned that I could set goals and reach them. This gave me a sense of control and productivity that I hadn’t been able to experience within my own body. These were the initial sparks of hope that allowed me to push forward.

Things started to really change in the early 2000’s when I entered college. Once I was exposed to psychology, biochemistry, statistics, physics, etc., I couldn’t get enough information. As a first-generation student, it was like I had stepped into a whole new world. The words pulled me out of a fog and for the first time in my life, I had hope that things could be different because science was moving the world forward, and me with it. I would spend hours in the library learning about my disease, medical trauma, grief, psychoneuroimmunology, identity, and meaning making, trying to understand how I had gotten there and dreaming about where I was going. With my newfound knowledge and encouragement from professors, I gained confidence and started to believe that I might also be able to give others hope through science.

However, I had a lot of doubts about whether I could physically and mentally make it through medical or graduate school. One moment shifted everything for me. I was volunteering with the Arthritis Foundation and was speaking at a family support group meeting alongside my pediatric rheumatologist. I was shocked that the parents had more questions for me than for my doctor. They wanted evidence that their kids were going to be okay. They wanted hope, and I was able to give it to them; I was living proof that it was possible to create a life in the midst of all the risks and losses. I left that meeting with a new sense of purpose and the motivation I needed to create a career dedicated to lifting patient voices.

I have now spent the last 15 years honing my craft as a social scientist and searching for innovative ways to empower patients. I have listened to the stories of hundreds of patients who face struggles with their health and the healthcare system and used this information to advocate for changes in research and medicine. I have also shared my love of science with students as a research mentor and professor, and most recently through the work of Young Patients’ AREA. Don’t get me wrong, science is not perfect, or certain, and it has caused plenty of harm over the years. However, it has saved my life in countless ways. Advances in medicine over the past 40 years have allowed me to work full-time and have a family despite my increasingly complicated health issues. Being a scientist is not only a job, but a calling where I can channel my pain and suffering into making things better for others. Knowing that I’m part of helping to move the world forward, especially when it feels like it is falling apart, even one tiny piece at a time, gives me peace of mind, and yes… hope.

My Patient Partner Journey, Part 2: ACR 2025

Presenting at American College of Rheumatology Convergence 2025 was both humbling and empowering for me as someone who lives with juvenile onset rheumatoid arthritis. Being part of the session, “Supporting Work, Supporting Health: Helping Patients with Rheumatic Conditions Stay Employed,” gave me an opportunity to share how arthritis has shaped every aspect of my journey into adulthood: from searching for jobs that would accommodate my health needs to recalibrating my career aspirations and making day-to-day decisions most people never need to think about. What I presented went far beyond statistics or clinical studies—I spoke about the hidden realities and extra calculations patients like me face, and how those experiences have influenced not only how I work, but how I advocate for myself and others.

I chose to present at ACR because it’s critical for researchers and healthcare professionals to hear directly from patients who aren’t just case studies or data points, but complex individuals whose stories offer insight that research alone can’t capture. There’s immense value in bringing together diverse voices, including patients from different backgrounds—to give context to science and remind everyone why the work they do matters in real life. 

By sharing my perspective, I hope to encourage clinicians and researchers to make decisions in partnership with patients, both within clinical settings and at professional conferences. This kind of visibility makes a difference, not just in my own life, but in shaping conversations that lead to systemic change. Connecting with others at ACR, whether professionals or fellow patients, helps me feel seen and heard, and reassures me that my experiences can help inform practices and policies that support people living with rheumatic diseases.

For me, presenting isn’t only about telling my story: it’s about reminding the research and medical community that patient voices belong at the heart of the conversation, everywhere decisions affecting us are made.

Speech from ACR 2025 Session

Good afternoon, everyone.

It’s an honor to open this session. My name is Ela Chintagunta, and for 9 years, I’ve lived with juvenile-onset rheumatoid arthritis. Today, I want to show you what “work” means from inside a body with chronic illness—and all the things people don’t see.

I was thirteen when I was diagnosed. My classmates thought about the future in terms of dreams and degrees. I thought about mine in terms of what my body could physically do. At that age, you’re supposed to imagine possibilities. Instead, I began measuring limits: How long could I walk before pain set in? Could I raise my hand in class, or would my joints freeze mid-question?

But that diagnosis didn’t kill my ambitions. I became obsessed with medicine—reading textbooks, studying science, convinced that if I couldn’t fix myself, maybe I could help others. I dreamed of becoming a doctor. Through high school and college, every decision pointed toward med school, even as fatigue and flares forced me to engineer my life around my symptoms. Behind my grades was a world of calculation: Can I finish my labs before my fingers stiffen? Will my medication leave me clear-headed for exams?

As college went on, research drew me in. The MD/PhD dream became my new goal—a way to shape medicine without the physical toll of hospital shifts. But the deeper I went, the more I realized medicine’s demands weren’t designed for a body like mine. The hidden costs—standing for long periods, infection risks, late nights—made some parts impossible. A few months ago, I had to make a painful decision: pivot to a PhD only, letting go of my clinical ambitions so I could build a career I could actually sustain. That is why I am currently applying for PhD programs.

That decision wasn’t about giving up. It was about survival. Most people pick jobs based on interests and skills. For me, every role requires invisible math: Is the space accessible? Is the climate safe for my joints? Can I take sick days without guilt? Can I type, or does today’s flare mean voice dictation?

Living with a chronic condition means that work is never just work. It’s logistics: managing doctor’s appointments, negotiating with supervisors, timing medications between meetings. It’s deciding when to disclose and when to stay silent. It’s working twice as hard so my limitations don’t take center stage. It’s changing jobs, sometimes cities, to fit my body—not just my ambitions.

Right now, I’m in another transition—figuring out what sustainable work means to me, making health management a full-time job. For those without a disability, career breaks might feel voluntary. For me, they’re mandatory maintenance—rebuilding so I can move forward.

All of these adaptations, calculations, and constant negotiations are invisible to most people. But they are very real work. Chronic illness makes every task, decision, and achievement an act of strategy and endurance.

So as we begin today’s session, I ask you to remember: There’s an entire world of “work” beneath the surface for people with chronic conditions. Every job is actually many jobs—some visible, many unseen. And in those hidden negotiations, you’ll find not fragility, but extraordinary resilience and skill.

To borrow words from Star Trek Voyager and one of my favorite characters Seven of Nine:
 “Survival is insufficient.”
 We aren’t here just to get by—we’re here to contribute, to matter, to live fully—even if that means rewriting what work looks like, again and again.

Thank you.

My Patient Partner Journey, Part 1: Bridging the gap between research, healthcare, and patients

Being a patient partner in research means bringing lived experience into scientific spaces where decisions about care, treatment, and discovery are made. It’s about more than sharing one’s story, it’s about ensuring that research reflects the realities of those it aims to serve. Over time, I’ve found that patient partnership in research comes with a sense of both responsibility and purpose, bridging the gap between patients and clinicians, and between ideas and impact.

What It Means to Be a Patient Partner

At its heart, patient partnership is a collaboration. Researchers bring scientific expertise, knowledge of study design, data analysis, and clinical systems. Patients bring expertise of illness, daily challenges, and the human context behind the data. When these perspectives come together, research is more relevant, ethical, and sustainable.

Being a patient partner often involves joining research committees, reviewing grant proposals, co-designing studies, and/or advising on consent forms and priorities. Some patient partners serve as formal team members under compensation and mentorship structures. Others engage through community panels or advisory roles. The unifying theme is empowerment: patients contributing as collaborators instead of subjects.

My Path Through CARRA

My introduction to this work came through the Childhood Arthritis and Rheumatology Research Alliance (CARRA). CARRA is a consortium that brings together clinicians, researchers, and patient stakeholders to improve the lives of children and young adults with rheumatic diseases. As someone living with juvenile-onset rheumatoid arthritis, I was drawn to working with an organization that actively sought my patient perspective to guide research about my condition. CARRA is structured as a collaborative network of pediatric rheumatology researchers, clinicians, patients, and families. Members from each of these distinct groups are organized into research committees that oversee scientific priorities and coordinate disease- or topic-specific work groups. Each research committee is a standing group of CARRA members focused on a particular area (such as a disease or related issue), and within each committee, smaller work groups develop and advance targeted research projects.

My first experiences with CARRA were both energizing and humbling, but I quickly realized the enthusiasm for patient partnership wasn’t as deep as it sometimes appeared. Patients technically had a seat at the table in workgroups. We were invited to talk through protocols and suggest changes that could help families make sense of research participation. But patient feedback was often treated as a formality rather than a priority. When I raised questions or concerns, I could sense that the researchers and clinicians considered their professional expertise to be more important.

CARRA did invest in patient partners through orientation materials, mentorship, and travel support–and that support made a difference. Still, it often felt like patients were welcomed more for optics than for shaping the course of the research. Over time, I learned to advocate more persistently for authentic inclusion of patient voices–not just as an add-on at meetings, but woven fully into research design and decision-making.

It was intimidating at first. I had to fight to be heard and avoid getting overshadowed by the authority of doctors or researchers. Eventually, I realized that my experience had value, even if I had to keep proving it, and now more people recognize the importance of what I bring to the team.

Conference Life: From CARRA to Conferences

One of the most powerful aspects of being a patient partner is participation in conferences. CARRA’s annual meetings are intimate and interactive: working group sessions buzz with clinicians discussing clinical trials and registries, while patients remind the group what those decisions mean in real life. For me, CARRA’s meetings embody a kind of research democracy, where everyone has a seat at the table, and the measure of success is not just academic rigor, but also lived impact.

Stepping into larger professional settings like the American College of Rheumatology (ACR) Convergence was a different experience. Whereas CARRA’s meetings felt familial, the ACR conference felt vast–a convergence of thousands of rheumatologists, scientists, and patient advocates from around the world. The scale can be intimidating, but it’s also inspiring. As a patient partner, it’s humbling to realize that all of this science–the posters, plenary sessions, and symposia–is ultimately about improving lives like mine.

At ACR, I often found myself acting as a bridge: helping research teams think about patient relevance while also helping patients navigate an environment dominated by professionals. Conversations in hallways and poster sessions often turned into opportunities to highlight the importance of co-production, doing research with patients rather than about them.

Lessons and Reflections

Being a patient partner has taught me that research is not only about data collection; it’s about relationships. It’s about learning to listen as much as to speak, to balance personal experience with generalizable insight, and to understand both the constraints and possibilities of science.

For young adults with chronic illness, spaces like CARRA and ACR demonstrate that there is room for those with lived experience to shape the future of medicine. Patient partners are not token voices; they are co-creators of knowledge.

When I walk into a conference room now, whether it’s a breakout at the CARRA Annual Meeting or a lecture hall at ACR, I no longer feel like an outsider among researchers. I feel like part of the team. That, to me, is the true promise of patient partnership: it transforms the narrative from “being studied” to “being heard,” and in doing so, changes what research can achieve for all of us.