↓Skip to main content
  1. Tags/

Chronic-Illness

2026


Privacy Is a Luxury I Can't Afford

·1234 words·6 mins
The privacy community pushes self-hosting, de-Googling, and more private alternatives as universal goods. But for disabled users with multiple conditions, those solutions often cost more, work less, and break when we need them most. Privacy shouldn’t require giving up the tools that keep us functioning.

What the System Doesn't Count

·2872 words·14 mins
The care system measures whether you can walk, eat, and speak. It doesn’t measure the kitchen you can’t use, the routine you can’t control, or the relief of finally stopping the impossible job of being your own full-time caregiver while disabled.

The Words That Don't Translate

·2472 words·12 mins
My family built a vocabulary for what it’s actually like to live in my body. Systems have their own vocabulary, and none of it has room for mucus-y days, whooshy nights, or the dog who saw the version of me that was actually there.

The Cost of Appearing Functional

·2665 words·13 mins
Multiple disabilities don’t add up to twice the difficulty. They compound. And the hidden cost of producing “acceptable” output from a system with no reserve capacity is one that no assessment, no checklist, and no institution has ever known how to count.

When Bible Study Became Too Complicated

·1139 words·6 mins
How I separated college Bible coursework from daily time with God, simplified my routine for low-energy days, and learned that prayer doesn’t have to be spoken out loud.

Learning Enough to Change Direction

·780 words·4 mins
A personal update on why I am moving away from the backend developer path, what Boot.dev did teach me, and what I want to build next with accessibility and sustainability in mind.

Emotions Take Energy

·490 words·3 mins
A personal reflection on why emotional expression can be physically expensive when you are chronically ill, and why quiet does not mean okay.

Grieving the Version of Me Everyone Thought I Was

·2282 words·11 mins
I’m grieving the realization that the independent future people imagined for me wasn’t based on my actual support needs. It was based on what they could see, what they wanted to believe, and what systems are willing to recognize.