Health & Work
Thought leadership on disclosure, visibility versus capacity, and returning to work.
I'm an employer
What chronic illness asks of a workplace.
This site distinguishes lived experience from medical documentation.Deze site onderscheidt geleefde ervaring van medische documentatie.
Start with theseBegin hiermee
The sections written with this question in mind.De onderdelen geschreven met deze vraag in gedachten.
Advocacy
System-change essays on patient agency, healthcare design, and dignity.
Start Here
Entry point guiding new visitors to the journey that fits why they came.
10 chaptershoofdstukken
Everything tagged for this path.Alles wat aan dit pad is gekoppeld.
1 Patient Agency What it takes for a patient to stay a decision-maker inside a system built around cases, not people.
MY EXPERIENCE
What happened
Agency became concrete when I learned to ask for wording corrections, written plans, copies, dates, and specificity before accepting what a file said about me.
INTERPRETATION
What I know now
Agency means participating in the record, not simply being recorded by it.
MY EXPERIENCE
Must stay verbatim
Agency is not being offered a form. Agency is having a meaningful choice before the form becomes the record.
2 System Design Where scheduling, referral pathways, and record-keeping quietly shift the burden back onto the patient.
MEDICAL RECORD
What happened
A GP referral could be clinically sensible and still fail at reception because insurer contracting required a different route.
INTERPRETATION
What I know now
A clinically sensible path and an administratively permitted path can diverge.
MY EXPERIENCE
Must stay verbatim
The patient should not be the API between institutions.
3 Technology Ethics What responsible tools for tracking, disclosure, and self-advocacy should and should not do.
MY EXPERIENCE
What happened
Portals, screenshots, calendar systems, and digital records sometimes helped, but they also created new work. My own screenshots often became the durable record of cancellations and requests.
INTERPRETATION
What I know now
A digital system can be efficient for an institution while transferring uncertainty to the patient.
MY EXPERIENCE
Must stay verbatim
A portal is not patient empowerment if the patient still has to screenshot everything to preserve the truth.
6 The Change We Need Concrete asks for clinicians, employers, and systems designers — and how to get involved.
INTERPRETATION
Top five changes
Every significant referral should identify the next owner and expected timeframe. Important treatment and consent decisions should be provided in accessible writing. Correction mechanisms should be simple and traceable. Return-to-work should be designed around function, not appearance. Chronic-condition pathways should account for time, money, and administrative labor of self-management.
MY EXPERIENCE
Public-safe wording
I am not asking systems to remove uncertainty. I am asking them not to manufacture avoidable uncertainty.
MY EXPERIENCE
Must stay verbatim
Do not make the sick person carry the coordination failure.
1 Disclosure Deciding what, when, and to whom to disclose about a health condition at work.
MY EXPERIENCE
What happened
I disclosed the operation date when it became relevant to a career opportunity. Later, return-to-work and absence systems required more formal disclosure of capacity.
INTERPRETATION
What I know now
Useful professional disclosure is functional: what is happening, what it changes, what I need, and when the situation will be reviewed.
MY EXPERIENCE
Public-safe wording
My disclosure principle is simple: share enough to establish capacity and need, not enough to make the workplace the owner of your medical story.
2 Visibility vs Capacity The gap between how present you look and what you can actually do.
MY EXPERIENCE
What happened
I repeatedly looked better than my capacity. Occupational health said I looked fit before issuing a written not-fit-for-work recommendation. Years later, I could still sit at a laptop looking professional while medically unwell.
INTERPRETATION
What I know now
Visible composure is poor clinical data.
MY EXPERIENCE
Public-safe wording
Looking well and having capacity are not the same measurement.
3 Performance Systems How performance and availability get measured, and what that misses.
MY EXPERIENCE
What happened
Systems were built around availability, deadlines, attendance, and binary status, while illness was variable. Calendars could still mark meetings as required during medically difficult days.
INTERPRETATION
What I know now
Performance systems can accidentally reward concealment because private health cost can still look like high performance.
MY EXPERIENCE
Public-safe wording
The problem is not high standards. It is treating uninterrupted availability as proof of commitment.
4 Return to Work What a good return-to-work process looks like, and what a bad one costs.
MEDICAL RECORD
What happened
After August 2019 surgery, occupational health applied a six-week no-work period and formally recorded not fit for work.
INTERPRETATION
What I know now
Motivation and readiness are not interchangeable. A humane return includes staged capacity, clear restrictions, review points, and freedom to say when a plan is too fast.
MY EXPERIENCE
Public-safe wording
I wanted my professional identity back before my body had finished negotiating the surgery.
5 Ambition Holding onto career ambition while managing a chronic condition.
MY EXPERIENCE
What happened
I continued pursuing a permanent professional role while preparing for major cancer surgery.
INTERPRETATION
What I know now
The strategic decision was not abandoning ambition, but allowing treatment to coexist with it.
MY EXPERIENCE
Public-safe wording
Treatment changed my timetable. I refused to let it erase my horizon.
6 Technology Burden The administrative and cognitive load of managing illness alongside a demanding job.
MY EXPERIENCE
What happened
Critical health moments repeatedly landed inside ordinary work schedules: diagnosis during commute to a business meeting, surgery during an active career opportunity, and later lymphoedema treatment competing with meeting calendars.
INTERPRETATION
What I know now
Treatment is not a hobby that belongs in unused calendar space.
MY EXPERIENCE
Public-safe wording
The hardest scheduling conflict was not meeting versus appointment. It was the belief that treatment should fit around everything else.
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