Held In The Hard Things
Because no one should have to fight for care alone
This wasn’t the week I expected to write about.
In fact, after skipping last week’s blog entirely, I felt an odd pressure building—Come on, Andrea, you really should post something. As if output is the measure of whether I’m coping.
And yet, this week has been one of the hardest in a long while.
I’ve been knee-deep in the exhausting machinery of Continuing Healthcare again. If you’re in this world, you’ll know exactly what I mean: the feeling of being ground down by a system that should protect our most vulnerable, yet somehow asks the emotionally exhausted to prove, again and again, why their loved one deserves care.
Our initial request was rejected in January 2025
The appeal meeting arrives almost a year later.
And a 64-page document dropped into my inbox last week to “prepare” for it.
I honestly thought I’d be fine. I told myself I could handle it. I’ve become strangely fluent in this language of domains and descriptors, complexity and unpredictability. But as the meeting drew closer, I could feel something tightening in my chest. Anxiety. The sense of being small against something very, very big.
I mentioned it, almost in passing, to a friend.
And without hesitation, she gave up her morning off, came to my house, sat beside me on a Teams video call for over an hour, took notes, whispered encouragement, and quite literally held the emotional weight I couldn’t carry alone.
Here is the illustration I made of that moment:
Friendship is giving up your morning off to sit with someone through an appeal meeting.
Because that’s what true friendship is:
The willingness to walk into someone else’s hard things and quietly stay.
The thing about capacity
I’ve been thinking a lot about capacity lately, not the kind measured by assessors, but the kind that leaks when you’re caring for someone you love while fighting systems that require strength you no longer have.
I hear from other carers of people with Multiple System Atrophy, and their hearts are breaking too. Watching someone you love deteriorate is devastating enough. Having to battle for the care they deserve feels almost cruel. We shouldn’t need MPs, journalists, or appeals panels to prove that human beings in distress deserve support.
It is hard to fight when you’re already flattened.
And yet here we are, many of us, doing it anyway.
A small offering to anyone else in this trench
I’m not in a place to offer solutions or strategies or brave-faced pep talks.
But I can offer this:
If you’re struggling with care systems, CHC, MSA, or anything that has emptied you emotionally, you are not alone.
If you want to share your story in the comments, reach out, or simply be witnessed, please feel welcome. Perhaps, between us, we can build enough collective strength to keep advocating for the care our loved ones so deeply deserve.
This week reminded me that we’re not meant to do the hard things alone.
Sometimes all it takes is saying, “I’m struggling,” and letting someone show up for you.
And to my friend, thank you. Your kindness steadied me more than you know.