When Managing Your Health Becomes A Full-Time Job: The Weight of Coordinating Care

As someone who’s lived with Crohn’s for the last 16 years, I’ve noticed there’s a moment that happens for many of us although it’s rarely talked about directly. It’s not when you’re diagnosed with IBD. It’s not even when symptoms get worse. It’s when you realize how many people it takes to manage your body.

The expanding Crohn's care team

At the beginning, it might feel simple. For Crohn’s disease, you typically start with a primary care provider and a gastroenterologist. I also had a therapist, as I’d been sick for so long without knowing why, and I started to doubt if there would ever come a day where I’d feel better.

Over time, my care team ballooned. I needed a rheumatologist for joint pain, a dermatologist for skin, and an ophthalmologist for eye inflammation. Depending on the disease course, an IBD patient might find themselves adding a colorectal surgeon, a dietitian, a pelvic floor therapist, or a pain management specialist. In my case, it kept growing to include orthopedic specialists, surgeons, and physical therapists.

Not because I’ve done anything wrong. But because Crohn’s, and chronic illness in general, don’t always stay in one lane.

Navigating IBD symptoms across multiple medical specialties

The hardest part isn’t just having multiple providers. It’s that each of them sees a different version of you.

To your GI, you’re a digestive system. To your rheumatologist, your joints and inflammation. To your neurologist, you’re a nervous system trying to regulate itself. And while all of those things are true, none of them are the full picture. You are YOU. But somehow, you become the one responsible for holding all of those pieces together. And I struggle - STILL - to fully put words to the emotional weight of that.

The mental health toll and cognitive burden of Crohn's and colitis

There’s a logistical side to this that people don’t always see. It is a constant cycle of scheduling, insurance approvals, referrals, and waiting months for appointments that only lead to more testing and specialists.

But underneath that is something heavier: you become the historian of your own body. You are the one tracking when symptoms started, which medications worked, and how one doctor's advice connects to what someone else told you last week.

You are the one translating between specialties that don’t often communicate with each other. And you are doing all of this while actively living inside the symptoms they’re trying to treat.

Recognizing and coping with chronic illness burnout

There are moments when it feels manageable, and then there are moments when it feels like entirely too much.

When your phone is full of appointment reminders, or your calendar doesn’t have open space. You realize you’ve spent more time coordinating care than actually living your life.

There are moments when you sit in yet another exam room, telling your story again, and you can feel the exhaustion settle in before you even begin. Because it’s not just your medical history, it's your life. And retelling it, over and over, in fragmented pieces, can make you feel fragmented too.

If you’ve felt this - I need you to know you’re not alone. I’m reaching for your hand here, because I need you to know how often I feel the weight of this too. How often it feels like it’s consuming more of me than I have to give.

The invisible role of the patient advocate in IBD care

No one officially assigns it to you. But somewhere along the way, you become your own care coordinator.

• The advocate making sure nothing falls through the cracks
• The coordinator following up on labs and tracking daily symptoms
• The driving force constantly pushing for medical answers
• The translator ensuring multiple doctors know what the others are doing

Because if you don’t… who will? And that question alone carries weight.

Tips for managing the stress of coordinating chronic care

I wish I could say I’ve figured this out completely. But I have learned a few things that make it feel a little more manageable. I’ve learned that it’s okay to ask providers to communicate with each other - even if it feels uncomfortable. Even if it takes multiple messages, or doesn’t always happen the way you hope. Sometimes, it’s still worth trying.

I’ve learned to take notes, to keep records, to give myself something to refer back to when my brain (or my energy) can’t hold it all. Having a centralized place, digital or otherwise, to keep all of the information I’ve collected, all of my lab values, of my questions, my medication history, my allergies - this has made a meaningful difference.

I’ve also learned that not every appointment needs to happen immediately. That sometimes, pacing matters just as much as persistence. There have been times I’ve looked at my calendar and realized I’ve scheduled more than my body can realistically handle. And despite initially feeling like a failure, I’ve had to recognize that identifying this before running my body into the ground is a win. Adjusting things to better account for my realistic limitations is truly a win I wouldn’t have achieved a year or two ago.

And maybe most importantly, I’ve learned that I’m allowed to feel overwhelmed by this. Because it is overwhelming.

Living a life beyond medical appointments and IBD

At the end of the day, this is the part I keep coming back to:

• You are not just a collection of diagnoses
• You are not just a schedule of appointments
• You are not just a case to be managed
• You are a whole person navigating something incredibly complex

And even on the days when it feels like your entire life revolves around managing your health, there is still a life there.

A life outside the waiting rooms, outside the portals and phone calls and follow-ups. A life that is still yours. Even here. And the moments you find within it - however small? Those count too. Perhaps those count the most.