Tag: Rheumatoid Arthritis

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.

Rewriting My Chronic Illness Story: From Diagnosis to Doctorate (And Beyond!)

I was diagnosed with rheumatoid arthritis at 19 years old. I was a former athlete who stopped after high school when a “mysterious injury” in my hips made it too painful to swim or cross train.

[Spoiler alert: it wasn’t an injury, it was chronic illness.]

While looking for resources about my new disease, I stumbled across an arthritis-specific magazine filled with inspirational stories of others who were like me. I was eager to hear how people got through everyday life with arthritis – only, the more I read, the less I felt I could relate to these people. The magazine featured people with arthritis who ran multiple marathons, climbed the highest peaks of the world, and accomplished extraordinary feats of physical fitness. They were characterized as “stronger than their disease” and people who “could overcome anything.” Yet here I was, applying for a disability pass to help me as I struggled to walk across campus to class.

I felt weak, alone, incapable, and ashamed. I tried to live up to my former expectations. I tried to push through the pain and my physical limitations to keep doing what I always had before. I didn’t want to take meds, I didn’t want to eat right, and I didn’t want to go to appointments. I was only 19! I wanted to eat pepperoni calzones and Ben & Jerry’s with my friends at 2 AM after a night of partying. If I wanted to swim again, or even do a triathlon, I felt my young body should comply. I was flailing as I tried to hold on to my identity, but at the same time, I didn’t feel like I knew who I was anymore.

College Kristine - Shortly after being diagnosed with rheumatoid arthritis, still trying to hike volcanos but in so much pain.

Finding Research 

From 2013-2018, I had the privilege to pursue a PhD in Occupational Science. For my dissertation, I set out to explore what it looks like to live with an autoimmune disease as a young adult. I read books where researchers did interviews with all sorts of people with all sorts of chronic illnesses. What I found is that: 

  • Researchers made theories about how people’s conception of time changes: sometimes illness feels like it interrupts our life plans, and other times it feels like a positive life-changing experience (Charmaz, 1991). 
  • Researchers made theories about different kinds of “work” we do – work to manage illness, work to just get through the day, and work to find and maintain our identity (Corbin & Strauss, 1985). 
  • Researchers found that the process of accepting chronic illness (my rheumatoid arthritis) is both intertwined with and goes beyond the stages of grief (Telford et al, 2006). 

These articles and books helped me to feel both seen and hopeful that someone out there was truly trying to understand what I was going through. I felt validated that living with a chronic illness is NOT unidirectional, but rather messy; and it’s okay to fall, get back up, and fall again. This research saw me beyond medication, beyond a number, and beyond inspiration porn (using my disability to make non-disabled people feel good) for fundraising – it acknowledged that patients are also young people trying to figure out what to do next. 

This was originally posted on 8/14/2015 at https://betherlander.com/2015/08/14/the-mess-of-grief/. I resonated with it at a presentation at the American College of Rheumatology Convergence by Dr. Courtney Wells: Gillett, R. & Wells, C. (2023). A thousand tiny deaths: attending to grief in patients with rheumatic diseases. Panel presented at the American College of Rheumatology Convergence 2023, San Diego, CA.

I’ll be honest: I am still quite stubborn. I still try to push through the pain and my physical limitations, I still struggle to take my meds perfectly, I still don’t eat right, and I still avoid the doctor’s office.

The difference is that now I have a support system that encourages me to practice self-care and make healthful decisions for both my physical and mental wellbeing.

I have built a physical environment and flexible routine that allows me to have good days and bad days. I have learned the signs of when I stray too far from my self-management regimen, and how to get back on track without panicking. I am open with my doctor about how I am feeling, including when I am feeling rebellious toward the things I know I need to do to manage my arthritis. And as a researcher, I advocate for patients to have a say in their healthcare decisions and health research, as we are the only ones who know what everyday activities and thoughts look like with our disease.

I also have a newfound appreciation for those who share their stories about living with chronic illness – whether they climbed Mt. Denali, won Olympic gold medals, figured out how to get insurance to cover their medication, or started the 10th grade. Every experience has meaning, and every story can help improve healthcare and community support for the young people who come after us.

I am fulfilled being a graduate, a researcher, a mother, a spouse, a crocheter, a mentor, a patient advocate, and so many more identities that I didn’t know I would get to take on. And I am grateful to be writing a blog about what I’ve overcome.

It’s a healing process to share and be heard, as well as to hear others. And when we use our stories for advocacy specifically, we can workshop with peers and collaborate on how to get the purpose and message of our stories across to others. I am so excited and proud to be Co-Lead of YP AREA, where I can use my skills to lift up every young patient who has a story to tell.