The Big Transition from Pediatric to Adult Rheumatology Care and the Lessons I Learned

When I was 11, I got a diagnosis that changed my life: juvenile idiopathic arthritis (JIA). But let’s be real, my body had been throwing a fit for way longer than that. My joints were on strike, and no one seemed to take it seriously. 

Every morning, I’d wake up feeling like I had aged 80 years overnight, stiff, sore, and exhausted before the day started. At first, doctors waved it off as “growing pains,” like my body had just miscalculated the whole growth process. But as time passed and simple things like holding a pencil, walking upstairs, or even getting out of bed became a battle, my family pushed for answers.

When I finally landed in the office of a pediatric rheumatologist, everything clicked. She was kind, patient, and listened to me– something many doctors struggle with when their patient isn’t an adult. She explained my disease in a way that didn’t sound terrifying but also didn’t sugarcoat it. More importantly, she made me feel like I wasn’t alone.

Managing JIA wasn’t just about popping pills and hoping for the best; it was about understanding my body, figuring out what worked for me, and making sure I could still do all the things I loved. And even when things sucked (because, let’s be honest, chronic illness does suck sometimes), she never made me feel like I was just being dramatic.

For years, she was my safety net. No matter how bad a flare got, how confusing the medication was, or how exhausted I felt trying to keep up with school, she was there, making sure I had a plan. So when I turned 18 and had to switch to adult rheumatology, I naively thought it would be a seamless transition. Same disease, same joints, different doctor, how bad could it be? Oh, I was in for a rude awakening.

The first time I walked into my new rheumatologist’s office, I knew this was going to be different. Gone were the soft pastel walls and the gentle reassurance of pediatric care. Instead, I was in a much colder and busier clinic, surrounded by patients decades older than me. The doctor barely glanced at my chart before jumping straight to business. The warmth, the encouragement, the time spent explaining my treatment plan? All of it vanished. Instead, I got a quick “Here’s your prescription, see you in six months,” and was sent on my way.

To say I was overwhelmed would be an understatement. I had spent years in a system where my doctor took the lead, making sure I understood what was happening and helping me manage my symptoms in a way that worked with my life. Now, it felt like I was on my own. No one asked about school, sports, or how I was coping emotionally. There was no check-in on how I was balancing pain with everyday life. It was all about lab results and meds. What if I had questions? Well, I'd better ask them fast because the doctor was already moving on to the next patient.

I left that first appointment feeling completely lost. Was this just how adult healthcare worked? Was I supposed to magically know how to manage everything by myself now? And worst of all, was I overreacting for missing my pediatric rheumatologist so much?

Here’s the thing no one tells you about transitioning to adult rheumatology: it’s not just about switching doctors. It’s about suddenly being expected to run the whole show. Booking appointments, tracking medications, advocating for treatment changes, understanding insurance, and making sure your symptoms are being addressed– it’s all on you. There’s no pediatric nurse gently reminding you to take your meds or a doctor who knows your history inside and out. It’s up to you to make sure nothing slips through the cracks.

At first, I floundered. I forgot to schedule appointments until my prescriptions were running low. I avoided calling the doctor because I wasn’t sure how to explain what I needed. I struggled to bring up new symptoms because I didn’t want to be brushed off. But over time, I realized something important, if I didn’t fight for myself, no one else was going to do it for me. 

I had to start speaking up, even when it felt uncomfortable. I learned to push back when a doctor dismissed my concerns. I started keeping notes on my symptoms so I wouldn’t forget anything during appointments. I asked a million questions, even when I felt like I was being annoying. And little by little, I figured out how to take charge of my health.

Do I still miss my pediatric rheumatologist? Every single day. She was more than just a doctor, she was someone who made a scary, unpredictable disease feel manageable. Transitioning to adult care, as frustrating as it’s been, has taught me something valuable: I am capable of handling this. Even when the system makes it hard, even when I feel like I’m drowning in medical jargon and endless appointments, I know that I can advocate for myself. 

If you’re about to age out of pediatric care and feel unprepared, I promise you’re not alone. It’s overwhelming, it’s unfair, and honestly, it kind of sucks. But you’re going to figure it out, just like I did. You’ll find doctors who listen. You’ll learn how to take control of your health. And one day, you’ll realize that you are so much stronger than you ever thought. And if all else fails? You can always complain about it to me. I get it.