Mastering My Autoimmune Health While Navigating the Complex U.S. Healthcare System
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As anyone with a chronic illness knows, navigating the healthcare system to get a diagnosis and management plan is not an easy feat. I didn’t expect to rely on my strategic skills honed as a product manager to get there. The healthcare system, with its parade of doctors, referrals, and inconclusive tests, felt like a labyrinth. But understanding dependencies, anticipating delays, and staying organized were essential to finding my way through and finding the right treatment for my rheumatoid arthritis and lymphocytic colitis.
Connecting the Dots: Managing Multiple Providers
I was juggling appointments with specialists, each holding a piece of the puzzle, but none seemed to communicate with each other. The healthcare system isn’t designed for seamless collaboration; each provider operates in a silo. I had to connect the dots myself—sharing information and synthesizing insights into a strategy that made sense for my overall health.
My product management experience came in handy. Similar to managing a complex product, where each team member has a specialized role but must work toward a common vision, I had to ensure my medical team was aligned, even if they weren’t directly communicating. It was up to me to maintain the big picture.
Dependencies and Referrals: The Waiting Game
Navigating the dependencies within the healthcare system—like needing a referral before seeing a specialist—was a significant hurdle. Each step depended on the previous one, much like tasks in a project timeline. I had to anticipate delays, prioritize what needed immediate attention, and manage these often lengthy timelines meticulously, or I’d risk falling behind in my health goals.
Meanwhile, I was in a high-stress job, trying to deliver results while managing my health. Balancing work deadlines with doctor appointments was a constant struggle, but I knew if I didn’t take care of my health, it would eventually affect my work and life. My goal was to maintain and improve my health, and I had to keep that in focus no matter how many obstacles arose.
When the Path Isn’t Linear
Understanding how different medications would work together—or wouldn’t—was another challenge. When one doctor suggested a new medication, I asked if it would interact with the birth control pills I was taking. The doctor didn’t know. It was disheartening to realize how little is known about medication interactions, especially for women. This reinforced the importance of doing my own research and asking the right questions.
Credit: BartekSzewczyk
But just as refining a product strategy requires iterations, sometimes the path to a diagnosis isn’t straightforward. I had to be prepared for setbacks and view them as part of the process. To cope, I kept a detailed log of all my tests, results, and symptoms. This allowed me to track patterns and provide my doctors with comprehensive information.
I also tracked my workouts and kept a food journal. This became invaluable when my GI symptoms acted up. During this time, I discovered the impact of diet on my condition. Consuming more protein the day before a long run positively affected both my performance and recovery. This small change became a cornerstone of my routine, helping me manage my symptoms and stay active, even when my health was unpredictable.
Doing My Own Research: Separating Facts from Click-Bait
Another key aspect was doing my own research. The internet is flooded with information, but not all of it is reliable. Much of what’s served up in the news or on social media is click-bait, designed to grab attention rather than provide scientifically backed insights. I had to become a discerning consumer of information, digging into peer-reviewed studies and expert opinions grounded in science. Just as in product management, where data-driven decisions matter, I needed to base my health decisions on solid evidence, not the latest health fad circulating online.
“Throughout this journey, one thing remained clear: I had worked hard to get my fitness to this point, and I had no intention of going back. ”
Waiting and hoping for things to work isn’t something I typically do, and I wasn’t about to start now. Every decision I made, every adjustment I implemented, was aimed at preserving the progress I’d fought so hard to achieve. My health at this point was my minimum viable product, and I was determined to iterate and improve on it, not let it regress.
Hope is Not a Strategy
Over time, I realized the healthcare system isn’t built for providers to work together. It’s a system designed around silos, where each provider focuses on their specialty without considering the whole picture. This creates gaps in care—gaps that can have serious consequences if not managed properly.
It became clear I couldn’t rely on my primary care doctor to break down these silos. As much as I wanted to believe my doctors would seamlessly collaborate, the reality was that they weren’t set up to do so. I had to take the lead, ensuring every aspect of my care was coordinated and aligned with my overall health strategy.
While I may not have had all the answers at every step, I knew that with patience, persistence, and a clear strategy, my goal was to keep moving forward, even when the path was unclear. I had to put myself in the best position to do so. That meant being my own advocate, ensuring every test, appointment, and decision was aligned with my long-term vision for my health.
My advice to you:
Don’t rely on your primary care provider to connect the dots. You need to be your own advocate - or you need to create your own team of advocates. Go Long can help.
Do your own research. To be your own best advocate, you need to be well versed in your symptoms and your diagnosis. But this doesn’t mean turning to Dr. Google or ChatGPT. Learn how to find data and sources that are legitimate (think medical journals and peer reviewed research).
Document everything. Document your symptoms, everything you’re trying, your testing - everything. As months go by, it’s easy to forget the progress you’ve made and what you’ve tried and learned.
Book a call to get the support you deserve. You don’t have to go at it alone.
Managing my health has been a journey of connecting the dots, advocating for myself, and leveraging the strategic vision I developed in my career to ensure I get the care I need. It’s been a long road, and I know it’s not over, but I’m more prepared now than ever to face whatever challenges come my way.
