Author: Ela Chintagunta

Destigmatizing Mental Health Through Creative Mediums

On April 2, 2026, Young Patients’ AREA hosted “Destigmatizing Mental Health Through Creative Mediums,” an event for young people living with autoimmune conditions to explore how art and writing can support mental health, identity, and connection. The virtual event provided participants with a brief education about how to use creative approaches to drive their healing. Then, participants had hands-on time to make art or write, along with the chance to share their work in a safe space, for those who wished to do so.

Mental health and autoimmune disease

Living with an autoimmune condition can bring increased risk for depression, anxiety, and other mental health challenges, in part because of chronic inflammation, pain, fatigue, uncertainty, and frequent encounters with healthcare systems. Research has found that people with autoimmune conditions experience mood and anxiety disorders at nearly double the rate of people without these illnesses, with women disproportionately affected (Mudra Rakshasa-Loots et al, 2025 & Li et al, 2024). 

For many young people, these numbers match what they feel but do not always say out loud: grief for a “before” version of themselves, fear about flares or progression, and the emotional weight of medications, procedures, and lifestyle changes. Naming these realities clearly helps shift the conversation away from blame or “not trying hard enough” and toward a more compassionate understanding that mental health is intertwined with chronic physical illness. 

Creative approaches to healing and self-understanding: Art Therapy and Narrative Medicine

Art therapy uses creative processes—drawing, painting, collage, movement, and more—to help people express experiences and emotions that may be difficult to put into words, especially around chronic illness and pain. Colors, symbols, and shapes can sometimes hold fear, anger, or hope more safely than direct conversation, and making art can provide both release and a sense of agency. 

Narrative medicine focuses on illness stories: telling, listening, reading, and writing about health experiences in ways that support understanding, meaning-making, and better care. Reflective writing or storytelling can help someone trace their own path through symptoms, diagnoses, and treatment, and can strengthen their voice in medical encounters and relationships. 

Together, these approaches offer images for what cannot yet be spoken and words for what needs to be reflected on and integrated. Studies in chronic illness and rheumatologic populations suggest that creative practices like these can support stress relief, coping, reduced isolation, and even improvements in physical health scores and sense of connection.

Prompts used during the event (that you can use, too!)

For Art: Use colors, shapes, textures, and symbols to represent “who I was,” “who I am now,” and “who I’m becoming”. It does not need to be anatomically correct; just show how you feel. 

For Writing: Write a letter to your body, past or present. What do you want to thank it for? What do you need from it? What do you want it to know? 

For Art and Writing: How do you choose to take care of your health and what does “choosing to take care of your health” mean to you? 

For Art and Writing: Draw a safe place, real or imagined, where your mind feels calmer; add words for what that place gives you—peace, warmth, quiet, and so on.

Artists and writers living with autoimmune and chronic illness

Well-known artists and writers 

  • Selena Gomez – musician, lupus 
  • Tyler James Williams- actor/rapper, IBD 
  • Nick Jonas – musician, type 1 diabetes 
  • Nick Cannon – performer, lupus nephritis 
  • Toni Braxton – musician, lupus 
  • Seal – musician, discoid lupus 
  • Clairo – musician, juvenile idiopathic arthritis 
  • Susannah Cahalan – writer, anti-NMDA receptor encephalitis 
  • Ali Guthy – memoirist, neuromyelitis optica 
  • Laura Hillenbrand – author, ME/CFS 
  • Frida Kahlo – painter, chronic pain and complex medical conditions (including autoimmune-related complications) 

Smaller artists and writers 

  • Autoimmune Expressions gallery (multiple artists) 
  • Donna Gallers – mixed media and watercolor, rheumatoid arthritis and Sjögren’s 
  • Autoimmune Artist (@autoimmuneartist) – Instagram-based creator 
  • Suzanne Edison – Poet, mother to juvenile idiopathic arthritis 
  • Jenny Lawson – writer/blogger, rheumatoid arthritis and multiple chronic conditions 
  • Nitika Chopra – writer and advocate, psoriasis and psoriatic arthritis 
  • Crafting a Path Through Illness (@craftingapaththroughillness) – fiber arts, slow craft, chronic illness 
  • (Young Patients’ AREA’s very own) Chaylee McCleese – writer, psoriatic 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.