Category: 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.

Finding My Voice: Building a Partnership with my New Rheumatologist

My name is Kelsey, I’m 23 years old, and I live with spondyloarthropathy/enthesitis-related arthritis. Recently, I transitioned from my pediatric rheumatologist to an adult rheumatologist. This is a big step that many young people with chronic conditions eventually face, and it can often be difficult. In my case, this transition turned out to be the perfect example of shared decision-making in action.

Shared decision-making is when patients and their healthcare providers work together to make decisions about treatment that are informed by science, the patient’s history, and the patient’s values and preferences. Instead of my doctor simply prescribing me the next medication, I wanted to have a thoughtful discussion that took into account both the science and my lived experience.

At the time, I was considered “stable” on my medication regimen, but I was struggling to consistently take my weekly injection. All of my other medications were pills taken 1-2 times per day, but the injection required multiple steps, and I often delayed it until my pain reminded me I couldn’t wait any longer. It simply wasn’t working for me, and I knew addressing this was my top priority since I was seeing a new rheumatologist. I prepared for my first appointment by requesting information from my insurance regarding which specialty medications are preferred by my plan. Additionally, I wrote down which administration methods (injections, pills, infusions, etc) would be ideal and which one I could tolerate. 

When I met my new doctor, I explained my challenges and shared my preferences. From there, we had a thorough conversation about the options available for my type of arthritis. Because I’d already done my homework, our discussion was focused and productive. Additionally, knowing which medications my insurance would cover helped to guide this discussion and avoid later delays. Together, we decided to switch to a daily pill that I could take alongside my other medications. This switch has been life-changing. It’s improved my adherence, lowered my stress, and helped me feel more in control.

I believe my preparation ahead of time was most helpful for this overall process. By identifying what wasn’t working and having ideas about what might be better for me, I was confident and ready to fully participate in the decision-making process. Just as importantly, my doctor seriously considered the experience I was sharing.

I think it is also important to note that shared decision-making is an ongoing process. If this medication is not effective for my arthritis or if I come to find daily pills aren’t actually sustainable for me, this is certainly a discussion I will have with my doctor again. As a whole, this has had a dramatically positive impact on my life, and I recognize I am extremely fortunate to have a doctor who acknowledges and trusts my input.

Transitioning to adult care can feel intimidating, but shared decision-making can make it empowering. By preparing ahead of time and openly sharing your priorities, you can build a strong partnership with your doctor from the beginning of the relationship to find a treatment plan that truly works for you. To learn more about how you can utilize shared decision-making in your own care, check out our previous blog post!

Learning and Teaching with an Autoimmune Condition

Hi! I’m Kaye Anderson. I’m 24 years old, and I’m in my first year as a 10-11 grade teacher at a rural high school. I earned my BA from the University of Wisconsin – River Falls, where I majored in English education and psychology.

Hi! I’m Makenzie Kaput. I’m 22 years old, and I’m in my first year as a 6-8 grade teacher at a Catholic middle school. I earned my BA from the University Wisconsin – Parkside, where I majored in history and secondary education.

Tell us a little bit about your diagnosis.

KAYE: I was diagnosed with Juvenile Idiopathic Arthritis at the age of 10. My journey started off with what my parents and I thought was frostbite on my toes. After it did not go away and my toes continued to swell, my primary doctor referred us to a rheumatologist. After a few appointments with tests that did not show much, I was diagnosed with JIA and pernio. 

During this time, I had a hard time in school. I was always uncomfortable, struggled to pay attention, and, often times, could not adhere to the norms of classroom behavior. Using a pencil was hard and the chunky grips did not help. So being the artist and inventor I was, I rubber-banded three pencils together. And it worked. My other accommodations were not seen as kindly by my teacher. I was assigned a yoga ball to sit on so that I could move my joints while sitting down. She saw this as a distraction and often called me out for bouncing. I was allowed to sit on a chair during circle time, but getting up to get that chair during circle time was also frowned upon. I was supposed to anticipate my needs ahead of time, which to a 10-year-old with a newly diagnosed condition, was very difficult. 

After elementary school, things got easier. I found ways to advocate for myself and learned that typing was easier than writing. I mastered the art of asking to take breaks discretely and wrote to teachers before school started to let them know of my 504 (and later on, IEP). 

MAKENZIE: I still have not been diagnosed with a specific disease, but I do know that I have some kind of autoimmune condition. I first got really sick right before my junior year of college. I had been having daily headaches for a few years at that point, and my neurologist was trying to find a balance of medication and other treatment that would help me. Unfortunately, the medicine I tried the summer before my junior year was incredibly hard on my body. I was nauseous almost every day and was finding it difficult to even make it class at all. Even when I could, I wasn’t fully present.

In October of 2022, I noticed that my hands were really swollen and my fingers were stiff. At first, I thought nothing of it because I played soccer in college and had just played a series of games in snow/very cold temperatures. When it didn’t go away after a few days, I started to wonder if something else was going on. I already had an appointment with a doctor at the Mayo Clinic for my headaches, so I figured they could give me some more insight. Unfortunately, they concluded that it was unrelated to the headaches and I would have to connect with a rheumatologist when I got back home. After that, I kept getting more and more fatigued and I was quickly losing function in my fingers, wrists, and other major joints. My feet hurt with every step. I started the long and frustrating process of getting to an autoimmune diagnosis, one that I still do not have. I went back to the Mayo Clinic in April of 2023, but they were unable to be 100% certain about a diagnosis.

What was it like managing a chronic condition as a college student?

KAYE: By the time that I got to college, I was fairly stable and did not often have flares. With that being said, the cold was extremely triggering and my medication side effects were not great. I only missed a few days of school due to pain, the other times it was due to nausea or fatigue. 

I went to college in my hometown, so my parents were able to help me out when I needed it. As we all remember covid hit in 2020, during my second semester and I was even more thankful to be living at home.

During college, I was really able to explore my identity as a chronically ill person. I signed up for accommodations right away and was told to apply to be a member of a new group of young adults with autoimmune conditions (now known as YP AREA). In this position, and as a mentor for incoming students with disabilities/accommodations, I thrived. I loved being able to guide people as they navigate college and independence while also shining a light on the intersectionality of living with a disability as a young person. 

MAKENZIE: In my junior year, I really struggled to make it to class a lot of the time. Luckily for me, I went to a smaller school and already had two years under my belt, so most of my teachers knew me and what kind of student I was. I applied for accommodations through my school’s student accessibility services department, and it was one of the best decisions I could have made. Even though I ended up not needing to use them all that much, it brought me such peace of mind to know that I could do as much as my body could handle, communicate with my professors, and still get the education that I deserved. Every school’s resources may look different, but I would highly recommend looking into services even if you think you won’t need them. It is always better to have a plan in place in case something ever comes up.

I also played college soccer for four years, and the biggest thing that taught me was to listen to my body and be okay that I couldn’t do the same things as everyone else.  At the end of the day, getting any kind of movement for your body is huge, especially with an autoimmune disease. My weight room routines looked a little bit different from the rest of my team, but I knew that I was doing what my body needed and could handle. It’s hard to accept that reality sometimes, but I think it is important for us to remember that we simply create a new reality.

What is hard for you about being a teacher with a chronic condition?

KAYE: I think the hardest part of teaching for me would be working when I am having a hard day. I have had a handful of days where I have had to teach while being extremely nauseous. These days, I find myself having to replan lessons to make sure that I am not over-exerting myself. So far, my students have been pretty understanding and I have had a few that even remember to check on me the next day to see how I am feeling.

Another thing that has been tricky to navigate is my energy level. I am able to get through the school day, but I can definitely feel that I am not as engaging during my afternoon classes. To help with this, I have been going to bed pretty early to make sure that I can put my best foot forward. 

MAKENZIE: Prioritizing is hard. There are all these things that I want to do in my classroom that I simply don’t have the energy or capacity for at this time. One of the hardest things is figuring out the balance between making everything fun and engaging for the students while also still having time for myself and not getting burnt out.

What coping strategies do you have for managing your condition in the classroom?

KAYE: I think this is something I am still working on, but right now my biggest self-care strategy is getting enough sleep. I regularly hear co-workers or students talking about how late they were awake, but I am keeping myself to a hard deadline of when I need to put work down and when I need to be asleep.

In terms of managing pain, I think it is a bit easier in my own classroom because I can move when I need to or ask students to come back to my desk to talk. During the colder months, I use a heat pack on my lower back.

To help with my mental health, I like being able to walk my dog and be outside in my garden. During the colder months here in the Midwest, I listen to audiobooks and do paint-by-numbers.

MAKENZIE: I try to always have a project or two (sewing, painting, crochet, etc) going on that I can work on when I need brain breaks. I’ve found that these types of projects are great for my mind AND great to keep my hands moving and working. Aside from that, I just ask for help when I need it. I used to really hate asking for help, and then suddenly one day I was at this point where there were things I simply couldn’t do if I didn’t have help. Over time, I started accepting that I can’t do everything by myself and that there are so many people who want to help me. Realizing that and being smart and realistic about when I need help has been a game changer.

Did you disclose your condition to your students?

KAYE: I find that being in the disability community and my work in advocacy is a big part of who I am, because of this, I felt comfortable sharing about it at the beginning of the year. I did not list specifics, but I said that I had arthritis and that I work to share research about autoimmune conditions with young adults. Later on, I found myself mentioning to some of my classes that I was having a rough day and reminded them about my condition.

MAKENZIE: I did end up sharing a little bit with my students when it came up in conversation. We had a reading lesson on a story that was teaching us to never judge someone else and always be kind because you never know what they are going through. Coincidentally, I was in a flare up at this time, and when I am my eye gets a little bit red and swollen/bruised. It looks like a black eye. The students were asking, and I knew it would be a really good way to show them first hand that you never know what is going on in someone else’s life.

When it gets cold, I also have to wear compression gloves if I want to be able to do all the things we need our hands for in a day. Since they look like motorcycle gloves lol, I fielded a lot of questions about why I wear them and what they are for.

I also wanted them to understand that there will be times we go through rough periods and it might seem like things won’t get better but they do. The fact that a year and a half ago I couldn’t even open a water bottle or the door to my own apartment by myself and now I’m a teacher with my own classroom, I want them to know that it’s possible.

Did you disclose your condition to your coworkers?

KAYE: Throughout the year, I have become more comfortable mentioning my condition to my coworkers. Some of them seem to understand it more than others. I am thankful for how understanding they are, but also worry that they see me differently when I am going through flares or dealing with medication side effects. 

Have you set up accommodations at work?

KAYE: I am currently working through the process to get a prep period in the middle of the school day. While having my own classroom means that I can make my own adjustments to be comfortable, I find that I need a period in the day where I can be more active if need be or warm up my heat pack. I think that the fatigue also plays a role here as I need some time to regroup before I go back to teaching classes. 

What makes being a teacher with a chronic condition worth it?

KAYE: I love the one-on-one interactions that I get to have with my students. I appreciate being able to take the time to walk them through a skill they are learning and joking around with them during downtime. I also love seeing students excel. It brings me so much joy to grade assignments where the students absolutely nail it.

MAKENZIE: Although they can be exhausting, the kids make it so worth it. At the end of the day, I know that I am making a difference and I can see the difference I’m making every day. I feel like I am paying it forward from all of the people who helped and cared about me when I got sick (and still now). These kids deserve someone who cares about them and wants to succeed, and it is so worth it to know that I can be that, even on frustrating days.

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.