When the Help Isn’t Showing Up
Theme: Chronic Illness and the Illusion of Support
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Hey fam,
They tell you there are systems in place — insurance, doctors, home health, social workers, case managers.
But when the diagnosis becomes chronic, when the condition doesn’t improve, when it doesn’t “resolve”… the help disappears.
You learn the hard way that the system was never built for longevity — it was built for quick fixes.
And there aren’t “resources” available. Just a bunch of places to call. And tours of facilities, but no way to pay for them.
You will make 100 calls for one returned.
You will be transferred between departments that never talk to each other.
You will sit in waiting rooms that run on broken promises.
And somewhere between the first emergency and the fiftieth appointment, you realize: no one is coming.
The Truth About Chronic Illness Care
Chronic illness isn’t urgent enough to trigger resources, but it’s too serious to ignore. It exists in the gray area where families get crushed.
Insurance will cover tests — but not the time you lose managing them. (After the first MRI, I didn’t understand the need for a neurologist. That was how I felt. You may feel differently - don’t expect a different result or cure.)
Medicare will pay for hospital stays — but not for the hours you spend helping your parent walk again.
The system knows how to bill you, not how to help you.
The problems are about to add up significantly as everyone will be vying for the same limited resources. I urge everyone to make a plan now.
Reclaiming Power in the Absence of Help
If you wait for the cavalry, you’ll die of exhaustion. YOU are the cavalry.
The way forward isn’t about waiting — it’s about building your own system inside the cracks of theirs.
Here’s how:
Document Everything. Create a binder or shared drive with every diagnosis, medication, insurance code, and appointment log. This becomes your power source.
Build a Micro-Team. You don’t need an agency — you need two or three reliable humans. A nurse who calls back. A family member who shows up. A friend who understands. Maybe a social worker.
Find Allies, Not Experts. The “experts” often move slowly. People living it every day will save you time, money, and sanity. Join online caregiver groups or local advocacy networks.
Stop Waiting for Permission. Request second opinions. Change doctors. File appeals. You are the CEO of this care — and the system works for you, not the other way around. They switched my mom’s hospice team for no reason, and I had to rattle some cages to get it restored. I also had a hospital hold my mom hostage, and I had to get her released from what should have been a respite week, but she had a mad scientist doctor instead. He couldn’t believe she was home with me, and I could keep her calmer than he did.
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Closing Thought
If you find yourself crying on hold with insurance, or begging a nurse to call you back — remember this:
You are not crazy.
You are not weak.
You are operating in a system that was never designed for long-term care.
So go ahead — build your own. That’s where healing begins. I did it and you can, too!
So….
I am going to stop publishing this newsletter at the end of the year. I have loved doing it, and I love that it’s free, but as I run a couple of other businesses, this is taking me away from the things that are generating revenue. And to be honest, it hasn’t taken off the way I thought it would. And then I realized - oh, they won’t care until they’re actually caregiving lol. However, buy the download and keep the newsletters, as they will remain available. Also, this has helped me in so many ways - so cathartic. I miss my mom, but sharing these stories helped me grieve, and also gave me comfort knowing I was helping so many of you!!! Thank you ❤️🩹❤️🩹❤️🩹
And you can still get our swag: https://refuel.printify.me/
I designed this logo for caregivers!!
Love you.
Go be great!!
Judith.
