Skip to content

Living with a chronic disease

Menu
  • Home
  • Navigating Daily Life
  • Relationships
  • Accessible Travel
  • 10 questions
  • Be in touch
Menu

When “I’m tired” is no longer enough: metaphors for fatigue in a chronic disease.

Posted on 23 March 202523 March 2025 by Clotilde

How can we talk about this invisible fatigue that can’t be seen but affects everything? Between spoon theory and battery theory, metaphors help express what words alone struggle to convey.


⚡ A fatigue that goes far beyond words

A few weeks ago, a flare-up in my symptoms reminded me of a familiar reality: living with a chronic disease means constantly juggling fluctuating energy levels. You always have to find a balance between daily activities and the effects—both positive and negative—of treatments.

My energy level, but also the amount of energy spent on the same activity, can vary significantly from one day to the next: for example, brushing my hair is generally a simple task. But on certain days, I have to take several breaks or hold the brush with both hands just to manage.

Saying something as ordinary as “I’m tired” means everything and nothing at once, because it doesn’t at all explain the reality of what I’m experiencing. As I learned after getting sick, tiredness is ultimately a very personal sensation.


🥄 Spoon theory: counting energy in daily life

Since saying “I’m tired” is no longer very meaningful when living with a chronic disease, several metaphors have emerged to help explain energy management to others.

One of the best known is the Spoon Theory, developed by Christine Miserandino. It is widely used in the chronic illness community.

The idea is simple: you start each day with a limited number of spoons, and each activity—getting dressed, making breakfast, getting around—costs one or more spoons. Once you have no spoons left, you no longer have any energy available for the rest of the day. Too bad…

It’s an effective and concrete way to explain one’s limits to others. But for me, it always felt a bit too rigid. Energy, for me, isn’t about counting a fixed number of spoons; it fluctuates, drains at different rates, and can sometimes disappear faster than expected.


🔋 Battery theory: a more flexible metaphor

That’s why I relate more to battery theory. Everyone uses the expression “my batteries are drained” to express exhaustion. It makes the situation easier to understand, even for people who don’t live with a chronic disease.

Ideally, I would start the day with a fully charged battery—let’s say 95 or 100%. But in reality, that almost never happens. Some mornings, I wake up at 70%, other times at 50%, and on really tough days, I sometimes start at only 30%. And just like with a laptop or a phone, the lower the battery, the faster it seems to run out.

A task as simple as brushing my hair might cost me 2 to 3% of energy on a day when I start at 70%, but 10% or more when I’m already down to 30%.


🧭 Adapting daily life to save energy

Over time, I’ve learned to adapt for all those activities that take up more energy:

  • Taking breaks when needed
  • Using a wheelchair to avoid walking long distances
  • Accepting to postpone what can wait

All in all, small adjustments that help save energy—like lowering a screen’s brightness so the battery lasts longer.

Sometimes, like a phone or a computer with a very low battery, there’s no choice but to go into sleep mode—when energy levels are close to 0%. Thankfully, those moments are rare: recovering even a bit of energy is much harder when the battery is completely empty.



Over time, I’ve learned to anticipate energy expenditure and to better estimate how much each activity “costs” based on my overall physical state. But even after nearly 15 years, my body still manages to surprise me… Whether you prefer spoon theory or battery theory, the result is the same: once your energy is depleted, it’s truly gone. Rest—and of course, treatment—are a big help. But sometimes, it takes a lot of patience for a completely drained battery to recharge—one day—even just to 70%…

👉 And you—have you ever used a metaphor to explain your fatigue or energy level? Which one speaks to you the most?


Picture by Alexander Andrews on Unsplash

If you want to support and promote my blog, do not hesitate to buy one of my books: Un bac sous perfusion (disponible en format papier et en e-book) ou Wheelchair hop on hop off (also available in paper format and as an e-book).

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Blog in other languages

  • Deutsch
  • Français

About

Hello! My name is Clotilde Aubet. I’m French, live in Austria, and work as a senior HR leader. I have been living with a chronic and disabling disease for over fifteen years and use a wheelchair in my daily life.

I write about living and working with a disability, inclusion and accessibility in the workplace, and accessible travel.

For more information, check out this page.

Newsletter

Be in touch

Legal information

  • Disclaimer
  • Privacy Policy
  • Cookie Policy
© 2026 Living with a chronic disease | Powered by Minimalist Blog WordPress Theme
We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept”, you consent to the use of ALL the cookies.
Wir verwenden Cookies auf unserer Website, um Ihnen das relevanteste Erlebnis zu bieten, indem wir uns an Ihre Präferenzen und wiederholten Besuche erinnern. Indem Sie auf "Accept" klicken, erklären Sie sich mit der Verwendung von ALLEN Cookies einverstanden.
Nous utilisons des cookies sur notre site web pour vous offrir une expérience plus pertinente en mémorisant vos préférences et vos visites répétées. En cliquant sur "Accept", vous consentez à l'utilisation de TOUS les cookies.
Cookie settingsACCEPT
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.

Diese Website verwendet Cookies, um Ihre Erfahrung zu verbessern, während Sie durch die Website navigieren. Von diesen werden die als notwendig eingestuften Cookies auf Ihrem Browser gespeichert, da sie für das Funktionieren der grundlegenden Funktionen der Website unerlässlich sind. Wir verwenden auch Cookies von Drittanbietern, die uns helfen zu analysieren und zu verstehen, wie Sie diese Website nutzen. Diese Cookies werden nur mit Ihrer Zustimmung in Ihrem Browser gespeichert. Sie haben auch die Möglichkeit, diese Cookies abzulehnen. Das Ablehnen einiger dieser Cookies kann jedoch Ihr Surferlebnis beeinträchtigen.

Ce site web utilise des cookies pour améliorer votre expérience lorsque vous naviguez sur le site. Parmi ceux-ci, les cookies classés comme nécessaires sont stockés sur votre navigateur car ils sont essentiels au fonctionnement des fonctionnalités de base du site web. Nous utilisons également des cookies de tiers qui nous aident à analyser et à comprendre comment vous utilisez ce site web. Ces cookies ne seront stockés dans votre navigateur qu'avec votre consentement. Vous avez également la possibilité de refuser ces cookies. Toutefois, la désactivation de certains de ces cookies peut affecter votre expérience de navigation.
Necessary
Always Enabled
ENG: Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information. // DE: Notwendige Cookies sind für das ordnungsgemäße Funktionieren der Website unbedingt erforderlich. Diese Kategorie umfasst nur Cookies, die grundlegende Funktionalitäten und Sicherheitsmerkmale der Website gewährleisten. Diese Cookies speichern keine persönlichen Informationen. // FR: Les cookies sont absolument nécessaires pour le bon fonctionnement du site web. Cette catégorie ne comprend que les cookies qui assurent les fonctionnalités de base et les fonctions de sécurité du site web. Ces cookies ne stockent aucune information personnelle.
Non-necessary
ENG: Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on the website. // DE: Als nicht notwendige Cookies werden alle Cookies bezeichnet, die für das Funktionieren der Website nicht unbedingt notwendig sind und speziell zur Sammlung von personenbezogenen Daten der Nutzer über Analysen, Anzeigen oder andere eingebettete Inhalte verwendet werden. Es ist zwingend erforderlich, die Zustimmung des Nutzers einzuholen, bevor Sie diese Cookies auf der Website einsetzen. // FR: Les cookies qui ne sont pas particulièrement nécessaires au fonctionnement du site web et qui sont utilisés spécifiquement pour collecter des données personnelles de l\'utilisateur par le biais d\'analyses, de publicités ou d\'autres contenus intégrés sont appelés cookies non nécessaires. Il est obligatoire d\'obtenir le consentement de l\'utilisateur avant de placer ces cookies sur le site web.
SAVE & ACCEPT