Patient Stories – Young Patients' AREA

The Invisible Weight: Mental Health and Chronic Illness

Ranging from National Suicide Prevention Month in September, to National Stress Month in April, to BIPOC Mental Health Month in July, mental health is a recurring topic throughout the year. Similar to myself, mental health is a year round battle, with these months holding special places in my psyche. Awareness is key, especially as someone with an autoimmune disease. As someone with an autoimmune disease and actively in therapy, mental health is an ongoing journey as I move away from my youth. Focusing on connecting with old friends, picking up hobbies, and finding satisfaction in my work has been hard. Plus, having Crohn’s disease, I am at an increased risk for exhibiting suicidal tendencies—like depression and anxiety.

Let’s delve into some research, along with some introductory tips from my own experiences, to help support everyone’s mental health.

Individuals living with an autoimmune condition such as Crohn’s disease or rheumatoid arthritis can be more susceptible to mental health issues. Globally, at least 1 in 10 people have a mental health condition, with anxiety and depression being the most common. For people with autoimmune conditions, several studies have shown that symptoms of anxiety and depression are over 50% higher, especially in young adults. While the reasons are diverse, the most common include autoimmune conditions masking mental health symptoms and a disconnect between a patient and their doctor. Specifically, increased inflammation in the body can disrupt delicate mood-regulating reactions in the brain and nervous system.

In one study focusing on rheumatic conditions and mental health, many patients attributed their current mental state to their chronic condition—many did not consider that both a chronic disease and mental health could be linked. Simultaneously, for patients with mental health symptoms, exploring options with a doctor can be daunting, and at times, downright frustrating. Several patients across studies noted how their doctor may be over-reliant on a rubric or chart when diagnosing a mental health condition; an over-reliance on a rubric can invalidate a person’s lived experiences. Coupled with existing systemic barriers to healthcare, such as high healthcare costs or location, people with autoimmune conditions are significantly affected by mental health issues.

For myself, my mental health journey has been a constantly evolving landscape. For many years, I tended to catastrophize situations and social interactions—sometimes to the point of hyperventilation and paralysis. During my sophomore year of undergrad, I faced several experiences that pushed me emotionally and mentally. A tough breakup, coupled with the death of a loved one and dissatisfaction with my professional life, culminated in a perfect storm of isolation. Outside of academics, work, or social obligations, I realized I had no personal coping mechanisms to process my feelings. I would spend evenings either journaling or lamenting internally, wondering how to escape the catastrophizing spiral—especially around my professional life.

Simultaneously, I would (and still do) suffer panic attacks when a situation seems dire and uncontrollable. Later, while studying abroad in Australia, I finally took action to address my emotions and homesickness. By living 12000+ miles from home, coupled with not knowing anyone in my cohort, I was both geographically and socially isolated—initially anyway. I realized I needed to focus on the root of my anxiety, not just cover it with social distractions. During that time and into my senior year, I attended more than a dozen counseling sessions at my university. A key lesson I learned is that counseling can provide short-term support, but therapy is where long-term progress happens.

Since graduating, and with my parents’ support, I found a therapist who works with young adults. We reviewed different providers through my primary doctor’s clinic, as well as other providers recommended by our insurance, and reached a mutual decision on a provider. Together, we are addressing my anxiety, tendency to catastrophize, and other personal challenges. Therapy has been one of the most effective strategies I can recommend—it has helped me in the moment while also fostering long-term healing. It can be difficult, even draining at times, but the growth that follows is invaluable. Therapy is not going to solve problems overnight, but it will provide tools and insights into helping your mental state.

Below, I’ve included a few parting tips from my own journey, along with mental health resources you may find helpful.

If you’re a student, reach out to your guidance counselor or your university’s health office—counseling can be truly helpful.
It’s okay to feel your emotions, acknowledge them, and take time to process bigger moments—whether good or bad. The key is what you do afterward.
It is also okay to ask for help—especially if you feel trapped or siloed. For myself, I struggled with reaching out until my emotions exploded like soda pop.
Therapy isn’t just for people with serious concerns. Think of it like visiting your doctor for regular check-ups—mental health directly affects physical health.
When looking for a therapist, ask your primary doctor about their connections—your insurance may cover more than you expect. Your insurance provider may also have a tool that can help find covered therapy providers as well!
For me, journaling and escapism (like geeking out over Marvel or playing trombone) have been excellent outlets to manage emotions. Try picking up a new hobby or returning to a past passion.

988 Suicide & Crisis Lifeline: Call or text 988 to connect with a trained counselor 24/7. This free and confidential service is for anyone in suicidal crisis or emotional distress. You don’t have to be suicidal to call.

Crisis Text Line: Text HOME to 741741 from anywhere in the U.S. to connect with a crisis counselor. It is free, confidential, and available 24/7.

The Trevor Project: Call 1-866-488-7386 or text START to 678-678for 24/7 crisis intervention and suicide prevention services for LGBTQ young people under 25.

Veterans Crisis Line: Dial 988 and press 1, text 838255, or chat online at veteranscrisisline.net for veterans and active-duty military.

National Domestic Violence Hotline: Call 1-800-799-7233 or text START to 88788 if you or someone you know is experiencing domestic violence.

Disaster Distress Helpline: Call or text 1-800-985-5990 for immediate crisis counseling related to disaster

References

Brundin, L., S. Erhardt, E. Y. Bryleva, E. D. Achtyes, and T. T. Postolache. 2019. “The Role of Inflammation in Suicidal Behaviour.” Acta Psychiatrica Scandinavica 132 (3): 192–203. https://doi.org/10.1111/acps.12458.

Conrad, Nathalie, Shivani Misra, Jan Y Verbakel, Geert Verbeke, Geert Molenberghs, Peter N Taylor, Justin Mason, et al. 2023. “Incidence, Prevalence, and Co-Occurrence of Autoimmune Disorders over Time and by Age, Sex, and Socioeconomic Status: A Population-Based Cohort Study of 22 Million Individuals in the UK.” The Lancet 401 (10391). https://doi.org/10.1016/s0140-6736(23)00457-9.

Gordon, Sherri. 2024. “People with Autoimmune Diseases Experience ‘Significantly’ More Mental Health Symptoms, Study Shows.” Health. 2024. https://www.health.com/autoimmune-disease-mental-illness-7569310#citation-3.

Mudra Rakshasa-Loots, Arish, Duncan Swiffen, Christina Steyn, Katie F M Marwick, and Daniel J Smith. 2025. “Affective Disorders and Chronic Inflammatory Conditions: Analysis of 1.5 Million Participants in Our Future Health.” BMJ Mental Health 28 (1): e301706. https://doi.org/10.1136/bmjment-2025-301706.

Ravan, Jayaprakash Russell, Sucheta Chatterjee, Pratima Singh, Debashis Maikap, and Prasanta Padhan. 2021. “Autoimmune Rheumatic Diseases Masquerading as Psychiatric Disorders: A Case Series.” Mediterranean Journal of Rheumatology 32 (2): 164. https://doi.org/10.31138/mjr.32.2.164.

Sloan, Melanie, Chris Wincup, Rupert Harwood, Thomas A Pollak, Efhalia Massou, Michael Bosley, Mikko R. A. Pitkänen, et al. 2023. “Prevalence and Identification of Neuropsychiatric Symptoms in Systemic Autoimmune Rheumatic Diseases: An International Mixed Methods Study.” Rheumatology, July. https://doi.org/10.1093/rheumatology/kead369.

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

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.

Giving Lupus a Purpose

When I was 15 years old, most days followed the same schedule: wake up, go to school, a couple hours of soccer practice, a few more hours of karate class, go home, do my homework, and then off to sleep. I was the epitome of “student-athlete” and was having a rather successful competitive year; just that summer, I had traveled to Okinawa, Japan to compete in an international karate tournament, and won second place in full-contact knockdown fighting! Honestly, I was in the best shape of my life.

So when I started experiencing knee pain a few months later, there was no real concern; soccer and karate will do that to a person. But then my knees started REALLY hurting… and my hips, and my ankles, and my shoulders, and my hands. Every joint in my body ached, and I went from running and kicking to practically bed bound. I was also tired… ALL the time. I was sleeping in class, skipping sports practices for naps, and sleeping more throughout the night. On top of all of that, I was having migraines every other day and my mouth was riddled with sores, making eating very unappealing and causing me to lose weight fast. I went from very healthy and active to, well, not.

These symptoms continued building up and worsening over the span of a month, until I finally saw my pediatrician. After listing all my symptoms and drawing some blood for lab tests, I just had to wait. Those three days of waiting seemed like the longest three days of my life. Finally, the doctor asked my family to come in to discuss my results. Right then I knew, it couldn’t be good; you can share good news over the phone, but bad news is always given face-to-face. I remember how silent the drive to the doctor’s office was and how sure I was that I had cancer or something.

We sat down in the exam room and my doctor told me that my results pointed to two potential diagnoses: leukemia or lupus. All I knew was that leukemia is bad and lupus was… well I had never heard of that before, so I had no idea. My doctor drew some more blood to send to specialists for a second opinion, and again, we just had to wait. So, in those days of waiting, I filled my time with research. I tried to learn everything I could about leukemia and lupus: what treatment looked like, disease prognosis, and potentially my remaining life expectancy.

On Tuesday, October 17th, 2017, I finally received a diagnosis.

Systemic Lupus Erythematosus: an incurable autoimmune disease that causes my immune system to attack the healthy tissues in my body. This is what was causing all my pain and fatigue, and after some more testing, we found out it was attacking my kidneys as well. While this disease has no cure, it could be managed with a concoction of various medications, so I started treatment as soon as I could, and have been taking handfuls of pills every day since.

I thought that a diagnosis and treatment would give me relief, or even hope. But all I remember is feeling helpless.

I thought that my life had been ripped away from me; I was only 15 years old and this news was going to change the rest of my life. I was an athlete with an autoimmune disease that caused severe joint pain; the one thing I loved was now just out of reach. There was nothing I could have done to prevent myself from having lupus, and there was nothing I could do to make it go away. I could take my medication and go to my appointments, but there was no guarantee that it would make anything better. The next few months blurred together as I just moved through the motions, still processing that this was my new life.

I hate to think that having lupus gives me a purpose, because I know that I could live a meaningful life without it, and I would jump at the opportunity to experience that. However, I hated the feeling of hopelessness, so I decided to give my lupus a purpose.

Near the end of 2017, my rheumatologist asked me if I wanted to join her at an advocacy opportunity: the Lupus Foundation of America’s National Lupus Advocacy Summit in Washington D.C. Here, we would meet with members of Congress to advocate for federal funding toward research, and policies to improve the lives of people with lupus. I don’t know why she thought I was qualified to do that, but she assured me that all I had to do was share my story, to tell them about my experiences living with lupus and how my diagnosis and treatment affected my life.

After much convincing from her and my family, I agreed to give it a try, and in February 2018, I attended my first summit. This was my first time talking to other people with lupus, really sharing my story, and seeing that I could make change. I felt seen, understood, and empowered.

I continued doing more patient advocacy work by attending more Lupus Foundation of America summits and fundraisers, working with the Childhood Arthritis and Rheumatology Research Alliance, attending research conferences alongside physicians and researchers, and participating in research studies. More projects, more opportunities, and more connections eventually led me to the Young Patients’ Autoimmune Research and Empowerment Alliance.

I joined Young Patients’ AREA in its very early stages. My only goal at that time was to help make information about healthcare and research accessible and exciting for young patients, and I instantly knew that Young Patients’ AREA was a group I could do that with. I have been so fulfilled by what we’ve been able to do over these last few years. I remember being a newly diagnosed patient who didn’t know how to navigate the healthcare system or research surrounding my disease. I remember feeling like my experiences were not being acknowledged and that doctors and researchers didn’t understand me. I remember how empowered I felt once I learned how to advocate for myself within healthcare and research, and saw that my voice was being heard. And I am so glad that I can now provide knowledge, encouragement, and a voice to others.

If you had told 15-year-old me that I would have a degree in communication studies and public health, working with multiple health organizations as a patient advocate, traveling to research conferences around the country, and writing blog posts to inspire other young patients to get involved… I would probably laugh in your face. But here I am. And I wouldn’t want to be doing anything else.

Birth Control is Not One-Size-Fits-All: My Experience with the Rod

When I first heard the horror story of how a close family member of mine had had 13 miscarriages due to scar tissue in the fallopian tube caused by slippage of her IUD, I was mortified and immediately ruled out the IUD as an option for myself. I already hated the thought of having to undergo that insertion, having heard how painful it can be and how pain medications and anesthetics are not generally offered alongside it. To my knowledge, that only left me with two remaining options: the pill or the rod. With the pill, I knew that time management would be vital in ensuring that I took the medication at the right time and consistently, even if time zones were to change. The stress of possibly missing a dose and then running the risks of lower protection, along with the incredibly long list of horrid side effects that accompany the pill, practically forced the rod on me as the most viable option.

The rod, or implant, is a small, flexible rod that is inserted into your upper arm. It steadily releases the hormone progestin into your body to prevent pregnancy, and lasts approximately three to five years. It is low maintenance and is currently considered the most effective form of birth control. It seemed as though the rod had the highest protection rate and the least hormonal side effects—and it didn’t require me to remember anything other than that I need to get it replaced every three years.

As a 17-year-old in my first long-term relationship, I knew birth control was the right thing for me, but with my autoimmune disorder flaring up, I didn’t know how the rod would affect my body. I remember my physician telling me something like “one third of patients see reduced menstruation, one third of patients will cease to have a period, and the remaining unlucky third of patients will bleed lightly all of the time.” My thought at the time was that even if I was in that unlucky third group, a light but constant period doesn’t sound worse than becoming pregnant. Of course that is how you think when you assume the script writers of your story wouldn’t possibly place you in that unlucky third group.

I was in fact in that unlucky third group, but I never regretted my choice of birth control because the fear of getting pregnant was stronger than the dread of a never ending cycle. However, I deeply underestimated the drag of expensive menstrual products and the drag of out-of-whack hormones. The side effects of the rod, mixed with the fatigue and inflammation of my autoimmune disorder, led me straight into a depressive episode.

But in hindsight, that experience taught me something much more valuable than what birth control not to use: it taught me the importance of understanding my options and advocating for myself in medical decision-making. Every method of contraception comes with its own risks, benefits, and unknowns, and no single choice works for everyone. I learned that birth control isn’t just a prescription, it’s a conversation. It’s a process of asking questions, weighing priorities, and finding a balance between medical guidance and personal comfort.

When I finally revisited the topic with my doctor, I came prepared with research, questions, and a clearer understanding of my own body and needs. That discussion felt empowering rather than intimidating. It reminded me that the best healthcare decisions are not made for us, but with us.

So while my experience with the rod was difficult, it reshaped the way I approach my health. It showed me that shared decision-making is the key to feeling confident in your care. Birth control is not one-size-fits-all, and the more we talk about our experiences, the more we help others find what fits them.

Why My Story Matters: How Patient Voices Drive Research Forward

When I was first diagnosed with Crohn’s disease at twelve years old, I had no idea my life was about to split into two parallel paths: one medical, one personal. On one path were the doctors, lab results, and treatment plans. On the other were the birthday parties missed, the meals skipped, and the subtle distance between me and friends who didn’t quite understand. I was told to advocate for myself, but no one really explained how. I was asked to describe my pain, but no one told me what to compare it to. I was expected to survive it, but was rarely asked how I was living through it.

Now, years later, I realize that the small moments—the ones I didn’t think mattered—hold immense value in the world of medical research. My story, like those of countless other young people with chronic illnesses, is more than just a timeline of flares and remissions. It’s data. It’s evidence. It’s a voice that can help shape the very science we depend on.

This belief is at the heart of Young Patients’ Autoimmune Research & Empowerment Alliance (Young Patients’ AREA), a group of young people living with chronic illnesses who are working to bridge the gap between patients and researchers. We don’t just share our experiences — we translate them into insights that drive studies, fund priorities, and create patient-centered care models. Through our current work with the Patient-Centered Outcomes Research Institute (PCORI), we’re helping define what meaningful research looks like from the patient’s perspective. And that starts with telling our stories:

From Silence to Significance

For many years, patient voices were relegated to the sidelines of medical research. We were subjects, not collaborators. Our experiences were summarized in checkbox forms or filtered through clinical language. But a growing body of evidence, much of it championed by organizations like PCORI, shows that involving patients leads to better outcomes, stronger data, and more ethical research practices.

In the pediatric, adolescent, and young adult worlds, this shift is especially critical. Children, teens, and young adults often struggle to explain their symptoms, express concerns, or push back on decisions. And yet, we are the ones who live with these diseases 24/7. We know what it means to spend lunch breaks in the nurse’s office, to pack emergency kits for field trips, or to navigate adolescence with a body that doesn’t always cooperate. Our knowledge isn’t abstract—it’s lived.

Turning Experience Into Evidence

My first experience contributing to research didn’t happen in a lab or a hospital, it started when I signed up to participate in studies through Rare Patient Voice, an organization that connects patients with rare and chronic diseases to researchers seeking real-world insights. Through their opportunities, I began sharing my perspectives on what it’s truly like to live with pediatric Crohn’s. That experience opened the door for me to join conversations with other young people in Young Patients’ AREA, where we recognize that clinical trials often fail to capture the full reality of living with an autoimmune disease. For example, exclusion criteria frequently leave out patients with coexisting conditions or more complex medical histories: patients like us. Additionally, outcome measures (like tracking stool frequency or CRP levels) don’t always reflect whether we’re actually feeling better in our daily lives. These considerations (and more) make one thing clear: our lived experiences aren’t just anecdotes—they’re critical data that researchers need to hear.

Research could be wrong about what matters unless we speak up.

Through opportunities like participating in focus groups, helping design patient surveys, and contributing feedback on study proposals, we are able to use our own stories as tools for change. It highlights blind spots in research design and helps redirect studies toward questions that actually matter to patients. For example, while a researcher might focus on mucosal healing as the ultimate goal, many patients care just as much about reducing fatigue, improving school attendance, and preventing weight loss.

The PCORI Model: Listening by Design

The work we do through Young Patients’ Area aligns closely with PCORI’s mission. Founded in 2010, PCORI is a nonprofit research funder created to ensure that patients and caregivers have a central voice in shaping health research. They prioritize comparative effectiveness research, or studies that compare different treatments to see what works best for real people in real-world settings.

One of PCORI’s guiding principles is engagement: bringing patients, caregivers, and clinicians into the research process from the very beginning. This includes setting priorities, selecting outcomes, and even helping interpret and disseminate findings.

Our job isn’t just to talk about symptoms—it’s to reframe what success looks like. For me, success might be attending college classes without fear of a flare. For another patient, it might be gaining the confidence to disclose their condition to peers or employers.

Why This Matters for the Future of Research

The future of research must move beyond lab values and into lived values. That means acknowledging that a good lab result isn’t always a good day. That means tracking not just disease activity but life activity. That means involving patients not as tokens but as co-designers of the systems meant to treat them.

And stories like mine are essential to this shift. They put a face to the numbers, a context to the clinical trials, and a purpose behind the protocols. They remind researchers that behind every data point is a person with hopes, routines, and plans that chronic illness interrupts.

Call to Action: Let Us In

If there’s one message I hope readers take away, it’s this: patients—especially young patients—are ready to be partners in research. We have insights you can’t find in textbooks and observations you won’t hear in brief clinic visits. But we need to be invited in, heard fully, and trusted deeply.

Organizations like Young Patients’ AREA are leading this movement, but we can’t do it alone. Whether you’re a clinician, researcher, nonprofit leader, or fellow patient, consider how your work could be transformed by listening better. Read our stories. Include our feedback. Let our lived experiences shape the next generation of solutions.

Because at the end of the day, research should be about improving lives. And no one understands what that takes better than the people living those lives every day.

Suggested Reading

Forsythe, L., et al. (2019). Patient engagement in research: Early findings from the Patient-Centered Outcomes Research Institute. Health Affairs, 38(3), 359–367. https://doi.org/10.1377/hlthaff.2018.0 5067

Patient-Centered Outcomes Research Institute. (2024, February 26). The value of engagement in research. https://www.pcori.org/engagement-research/value-engagement-research

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!

A Dialogue with Roommates: Navigating the Start of College with an Autoimmune Condition

“Is that an acne medication?” she asks. My eyes fall to the crusty cap, the deformed tube, and the label striped across the thick of its body with a name too thorny and unwieldy to produce on the average tongue.

The bald patches on the back of my head cringe and cower.

“No, not really. It’s kind of like an ointment for my skin,” I reply. A good start, I think. That is, until I have to pull my hair back and use the medication. I wait until my roommate’s speculation fizzles out to apply the corticosteroid, only she continues to stand beside me at the other sink. Carefully, I squeeze out a pea-size amount of the ointment onto a Q-tip and sweep aside what hair covers the bald spots on the back of my head. My roommate stops her skincare routine.

“What is that?” she asks. I can only assume she is referring to the crater of bare, peachy, acne-prone skin.

“I have this thing,” I begin, but the words are sandpapery on my tongue. I hate this part—the explaining, the look of pity, the confusion, and even at times the blatant disgust, as if the person I’m talking to is the one partially balding just by looking at my spots.

“An autoimmune disease,” I continue. But the worst part is not the explanation; it’s the sugar coating. Somehow, it is always my responsibility to downplay my experience in order to alleviate others’ discomfort.

These interactions always hug the contours of a familiar framework, amounting to something synonymous with: “It’s really not that bad” or “It’s okay because…” This instance is no different; I can feel the lines tickle against the roof of my mouth.

By definition of the dermatology community, alopecia areata is a relapsing form of baldness that ranges in severity. It stems from the attacks of overactive cytotoxic T-cells on hair follicles and is reinvigorated by stress and other environmental factors. In my case, the autoimmune disease manifests as coin-shaped bald spots. Others I know have lost all of the hair on their scalp. Many have lost even more.

I was diagnosed with alopecia areata at the ripe age of eleven, so I have a bit of experience navigating these conversations. Even so, experience never fully erases the urge to avoid them. Oftentimes, these encounters leave behind a smear of unjustified repulsion and awkwardness.

As someone who (begrudgingly) cares deeply about how others perceive me–and as part of a society that perpetuates unrealistic beauty standards–I often let my disease mold and define who I am. I used to hate seeing myself in photos, reverting to a half-up, half-down style. I never let people braid my hair, for fear they would graze the bumpy skin where hair should be.

With time, the management became more comfortable as the people in my life developed a fuller understanding of my situation. But (cue sound effects), one big, scary monster continued to hover over my shoulder: the transition to college.

With a semester now under my belt, I have gained some important tidbits that may prove helpful to young patients undergoing a similar lifestyle change: moving to a new atmosphere.

1. A lot of people like to think of your disease as a one-time instance: keep reminding them it is not if you have to.

I know so many individuals who try to empathize or relate to me by saying things like: “One time I was so stressed I also started to lose hair.” I never am sure how to respond.

“Sorry to disappoint, but my hair loss is a product of autoimmune dysfunction. Sure, it can be worsened by stress, but even if I were stress-free, these spots would still be here.”

Seems like a mouthful, right? And a little blunt? Bottom line: who cares? You can keep reminding people about your illness without being “mean.” If they do not want to learn and understand, that is on them.

2. Social scenes can be stressful: focus on mitigating, not necessarily avoiding.

On top of alopecia areata, my hypothyroidism and unresolved gastrointestinal issues make finding food difficult, especially given how many social scenes revolve around food. I like to come up with some easy excuses that work for dodging a food-related social dilemma while alleviating awkwardness.

This may seem contradictory to the last tip. For those that cannot muster the courage to confront and address a situation such as those outlined above, this tip is for you. Although this may not be the greatest long-term solution, it works, to put it plainly.

The unfortunate reality I have discovered is that using excuses such as “I already ate” are much more palatable than listening to a string of medical terms. As mentioned, people do not see chronic illness for what it is: chronic. Just because I cannot eat a slice of pizza at one social gathering does not mean I can eat one at a different social gathering. As much as I wish it could disappear, and while there are undoubtedly “good” and “bad” days, chronic illness is my long-term foe. Whether you choose to explain or mitigate by using simple excuses, the choice is yours.

3. Yes, you are starting over. Maybe that is not such a bad thing.

In all my time at college (granted, a single semester), I have only seen one bald girl on campus. As her and her friend were walking to class, I observed the unbridled laugh she let loose, the stylish way she dressed, and most noticeably, the lack of a hat or wig she could have donned. She was confident, to say the least.

It may be cliché, but what if having to start over is not the approaching doom people so often make it out to be? People like to treat hair like clothing—they style it, change its color, and add clips, headbands, hair ties, and more. Hair is inevitably a form of self-expression. Why should the lack of it dictate one’s confidence?

I am not here to counsel, as I am no authority on this subject, nor do I have all the answers. Everyone’s experience with chronic illness is different. The takeaway is about navigation, not solution. It can be so taxing to go through the introductions, the explanations, the cumbersome silence, and the confusing reactions of sympathy that seem to come with each new person you have to explain yourself to. All I am saying is that while new environments may encourage the stress, awkwardness, and self-loathing to take root again, they may also be a space for self-exploration and newfound confidence.

Sources

Tag: Patient Stories