“Who Says Disability Isn’t a Full-Time Job?”: The Frustration Fatigue Reality of Uncoordinated Care

Frustration Fatigue

If you live with hypermobile Ehlers-Danlos syndrome (hEDS), you likely already know the truth: managing your health is a full-time job — one with no paid time off, no clear job description, and no reliable supervisor overseeing your care - and no annual reviews on your performance or promotions might I add! Where's my validation of worth, ugh hello?? Instead, you become the manager, coordinator, researcher, and reporter of your own healthcare journey — whether you wanted to be or not.

The systemic issues around fragmented care, especially for complex conditions like hEDS, force patients into the uncomfortable role of being their own case managers and more. It’s not just frustrating — it’s exhausting and, at times, dehumanizing. And while there are many stories like mine, I hope sharing a recent "frustration fatigue" experience will help other patients feel seen, and maybe even spark a little systemic change.

The Doctoral Degree No One Talks About

To survive — let alone thrive — with a multi-systemic connective tissue disorder like hEDS, patients often end up earning an unofficial “DIY doctorate” in health literacy. We learn to interpret blood work, dissect MRI results, study comorbidities like dysautonomia and mast cell activation syndrome, and memorize the standard ranges for tests our own doctors sometimes overlook we read deep into after-visit summary reports that no one discussed with us. We learn the hard way which specialties tend to dismiss symptoms, and which might actually listen. We cobble together care, trying to build a net from threads that were never connected to begin with.

But perhaps the hardest part is knowing that you’re the only one who sees the whole picture — because none of your providers are talking to each other. I though electronic medical records would help with that? But that means taking time to READ the records which no private insurance-backed profiteer has time to do.

I recently had to undergo a disability review — a dreaded yet regular part of the process for those of us receiving disability support. As part of it, I had to document 112 appointments with 27 different providers over a year (yes just in one year) to prove what I already knew: that my illness is real, persistent, and disruptive leaving me "consistently unreliable and undependable for full-time employment."

Let that sink in: one hundred and twelve appointments. Twenty-seven providers. That’s nearly one doctor appointment every three days. Each visit with its own intake forms, patient portal, prep work for my questions and asks, follow-up instructions, and communication quirks to manage to avoid being gaslit. Not one of them had a full picture of my care unless I physically brought it to them — printed, organized, highlighted, and cross-referenced like some kind of human medical Wikipedia.

And still, sometimes the response I get is: “Remind me what you’re seeing me for again primarily?” Ugh the question so hard to succinctly say in those moments.

When the System Fails, Patients Fill the Gap

What does it mean when we say there’s “no coordinated care”? It means that a neurologist might recommend a test the cardiologist has already done. It means two specialists might prescribe medications that dangerously interact — and it falls on you to catch it (or pay the fees when insurance does for double-dipping). It means filling out the same history repeatedly, feeling like you're screaming into a void, hoping someone will finally look at your case as a whole, rather than through the narrow lens of their specialty.

This burden leads to burnout. It breeds medical trauma. And it widens the trust gap between patients and providers — because how can you trust a system that treats your case like a shuffled deck of cards?

Navigating the Frustration (Without Losing Your Mind)

So what can we do? Until the healthcare system catches up, here are a few survival strategies I’ve found helpful:

1. Build a master binder or digital folder Keep a central document with your diagnoses, med list, test results, key provider notes, and timelines. You shouldn’t have to, but it helps you present a cohesive case to each new provider. Or better yet, invest the time to upload your data into a secure HIPAA protected app like Guava, built by an EDS patient herself!
   

2. Use a symptom tracker or health diary Document your symptoms in a structured way as doctors need to see the data. It can validate your experience and reveal patterns that even seasoned doctors might miss. Guava can even help you detect patterns in their AI tools.
   

3. Create a care executive summary Write a short one-pager that outlines your major diagnoses, current care plan, and key concerns. Bring it to every appointment — especially helpful for ER visits or new providers. This is a game-changer to hand it to them to read in less than 2 minutes and be able to focus the rest of the time on your symptoms, questions, differential diagnosis theories, etc. If you need help preparing a summary, check out our EDS Doctor Prep Toolkit.
   

4. Find your anchor provider If possible, identify one provider who truly gets it and is willing to advocate for you across specialties. It might be a PCP, pain specialist, or even a nurse practitioner — someone who can help keep your puzzle pieces in view. They do exist, but they are what is really rare and usually cash-pay only. All of the good ones figure out the insurance game is not healthy for any of us. If you are lucky enough, you can find a compassionate one like Katie Volkers at A to Zebra Health (licensed in TX and CO for now) who can keep you organized and on track.
   

5. Practice micro-boundaries for your own sanity Set limits on how much time you spend managing your care each day. It’s okay to pause — you’re not failing; you’re protecting your mental health. This means rest, gentle movement and a lot of patience-building with breathwork and calming techniques for me. Try Insight Timer for a free meditation app for a rescue session, or join the free monthly mindful meditation support group with the US Pain Foundation (registration required).

The Bigger Picture: We Deserve Better

Let’s be clear: this isn’t a story about a personal failure — it’s a reflection of a broken system that still doesn’t know how to support complex, chronic illness. We shouldn’t have to be medical librarians and legal analysts and administrative experts just to access compassionate, informed care. And yet, here we are — charting our own maps, educating our own doctors, and showing up to every appointment prepared to fight the same battle all over again.

So the next time someone says, “Must be nice not to work,” I’ll politely respond: “I actually do work. I’m the full-time manager of a body in crisis.”

And let me tell you — it’s the hardest job I’ve ever had.