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Spooniversity Blog

On chronic illness, advocacy, and building a life on your terms.

Written by people who live it. No toxic positivity. No advice that assumes a fully-functioning body. Just honest, practical writing for people navigating the real thing.

EducationUnderstanding Chronic IllnessPatient AdvocacyCareer & WorkEnergy & Pacing
Understanding Chronic Illness·5 min read·

When Your Illness Becomes Your Identity — and What To Do About It

Chronic illness reshapes identity in ways that are real and serious. The question isn't whether to let illness be part of who you are — it's how to make sure it isn't all of who you are.

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Patient Advocacy·8 min

Navigating Disability Benefits With an Invisible Condition

Getting disability benefits when your condition is invisible, variable, or poorly understood is one of the hardest administrative processes chronically ill people face. Here's how to approach it.

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Career & Work·6 min

Working From Home With Chronic Illness: What Actually Helps

Remote work promised flexibility — but the standard home office setup still assumes a body that cooperates. Here is what genuinely helps when yours doesn't.

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Energy & Pacing·6 min

Energy Accounting: Planning Your Day When You Have Six Spoons

Spoon theory tells you what energy depletion feels like. Energy accounting tells you what to do about it. A practical framework for managing variable capacity.

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Career & Work·6 min

What Is a Patient Advocate — and Why Sick People Make the Best Ones

Patient advocacy is a real profession with growing demand. Here's what patient advocates actually do, who they help, and why chronically ill people have a head start.

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Education·7 min

Why We Dropped Our €749 Cohort Price (And What We Replaced It With)

Behind the scenes: we had a €749 cohort ready to launch, then killed it 6 days before. Here's why we chose €299/year flat pricing instead — and what we learned about pricing for people with variable income. (Historical/decision-making post)

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Education·5 min

How We're Pricing Spooniversity — and Why

Most online education is priced for people who don't have chronic illness. We built something different. €299/year for all Bed programs, with a payment plan option for cash-flow flexibility. Here's why.

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Career & Work·7 min

Re-entering the Workforce When Your Body Changed the Plan

Chronic illness forces many people out of careers they built. Here's a practical look at how to re-enter the workforce, reframe your experience, and build something that works for your actual body.

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Understanding Chronic Illness·6 min

The Sick Tax: What Chronic Illness Actually Costs You

Chronic illness is expensive — in ways that go far beyond medical bills. A frank accounting of the full cost: financial, professional, social, and temporal, and why it matters to name it accurately.

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Understanding Chronic Illness·8 min

POTS, ME/CFS, Fibromyalgia and MCAS: The Conditions That Are Everywhere and Nowhere

These four conditions affect millions of people globally, are frequently misdiagnosed or dismissed, and are still poorly understood by most clinicians. A plain-language explanation of what they are and why they're so hard to get diagnosed.

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Education·7 min

Learning While Sick: What Online Education Gets Wrong

Most online learning platforms are just lectures on a screen. Here's what actually has to change for chronically ill people to be able to learn — and what's finally being done about it.

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Education·5 min

Why Constrained Learners Often Learn Better: The Unexpected Advantage of Being Sick

Chronic illness forces you to learn differently — shorter windows, higher selectivity, lower tolerance for the irrelevant. That isn't only a limitation. In some ways, it turns out to be a better way to learn.

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Career & Work·7 min

Invisible Disability in the Workplace: Your Rights, Your Options, and What Actually Helps

Having an invisible illness and a job — or trying to keep one — involves navigating legal rights, disclosure decisions, and a workplace culture that may not be built for you. A practical guide.

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Patient Advocacy·6 min

What Medical Gaslighting Really Looks Like

Being dismissed, disbelieved, or told it's anxiety when it isn't — medical gaslighting is widespread and its effects are serious. Here's how to recognise it and what to do.

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Energy & Pacing·6 min

The 60% Rule: Why Pacing Is a Medical Strategy, Not a Cop-Out

Working at less than full capacity isn't giving up. For people with chronic illness, consistently staying within your energy envelope is one of the most effective management strategies available. Here's the evidence and the practice.

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Patient Advocacy·6 min

Symptom Tracking That Actually Works: Building a Medical Record Doctors Can't Ignore

Most symptom tracking is too vague to be clinically useful. Here's how to build a documentation record that captures the right information — and changes what happens in medical appointments.

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Understanding Chronic Illness·6 min

Brain Fog Is Not Tiredness: How Cognitive Symptoms Actually Work

Brain fog is one of the most common and most dismissed symptoms of chronic illness. Here's what's actually happening neurologically, why it's not just about sleep, and what actually helps.

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Patient Advocacy·7 min

How to Get Doctors to Actually Hear You

A practical communication framework for chronically ill patients who are tired of being dismissed, disbelieved, or managed out of the room.

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Understanding Chronic Illness·7 min

Post-Exertional Malaise: The Symptom That Changes Everything

Post-exertional malaise is not tiredness. It's a systemic crash that follows exertion and can last days or weeks. Here's what it actually is, why it matters for everything from pacing to diagnosis, and why most standard medical advice makes it worse.

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Understanding Chronic Illness·6 min

The Spoon Theory Explained — and What It Actually Gets Wrong

Spoon theory changed how millions of chronically ill people describe their lives. Here's what it gets right, what it misses, and what to do when the metaphor breaks down.

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These articles are part of something bigger.

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