The Burden of Explaining: The Mental Load of Invisible Disability
The burden of explaining refers to the ongoing work of describing a disability to every new person you meet. For disability, it is one expression of the mental load. This article explains what it is, what it costs, and the solutions already invented to ease it.
Introduction
The burden of explaining refers to the ongoing work a person does when they have to describe a disability, their own or a loved one's, to every new person they meet. Some also call it explanation fatigue or repeated explaining. For disability, it is one expression of what is more broadly known as the mental load. This article explains where this burden comes from, what it costs, and what solutions already exist to ease it.
An ongoing condition, not a one-off event
Explaining a disability is not an isolated event, it is an ongoing condition. The new school year arrives: two new teachers, an AESH (a teaching assistant for students with disabilities, in France), possibly an after-school staff member. A healthcare provider retires: the introduction has to happen all over again with their replacement. A colleague joins the open-plan office: say something or stay quiet, how, to whom.
Every encounter means choosing your words, adapting to the audience, anticipating reactions. It is this accumulation, invisible to everyone else, that wears people down. Not the first time. The fiftieth.
Why this had no name until now
The concept of the mental load was popularized in 2017 by the French cartoonist Emma in her comic essay “Fallait demander” (known in English as “You Should’ve Asked”). It gave a name to what millions of women were carrying without the words to describe it: thinking of everything that needs to be done, on top of doing it.
The burden of explaining is one specific case of this. It appears every time disability is involved, but it never had a name of its own. Without a name, it does not exist in everyday language. Without language, you can neither recognize it in yourself, nor share it with others, nor decide to distribute it differently.
What it actually costs
The burden of explaining has a measurable cost in time and mental energy:
- Preparation before every appointment: what to say, in what order, with which words.
- Emotional choice between saying everything, saying a little, or staying quiet.
- Rephrasing for each listener: a teacher, a child, a first responder, a colleague do not receive the same explanation.
- Follow-up: checking that the information was understood, correcting it if needed.
- Accumulation: the same energy, spent 30 times, 50 times, 100 times a year.
Multiply that by the number of years the disability is part of someone's life, and you get a part-time job that no one has ever paid for and no one sees.
What families have already invented
No one waited for a ready-made tool to appear. Families and the people concerned have invented practical solutions to avoid starting from zero:
- The school-home logbook, which follows the child from one year to the next.
- The handwritten note given to the teacher at the start of the year.
- The MDPH card or CMI (French disability mobility card) tucked into a wallet.
- The medical bracelet for emergencies.
- The Sunflower lanyard, which originated in the United Kingdom and signals an invisible disability in airports and public places.
- The shared tracking apps used with the medical or education team.
Each of these tools eases part of the burden. None of them covers it entirely: they are each designed for one specific context. A school-home logbook does not follow a child to a new school; an MDPH card means nothing to a classroom teacher; a medical bracelet does not say “how to help”.
A complementary approach is to build a single profile and share it through a QR code. That is the logic behind myHandiQR: a profile written once, updated at will, read by anyone who scans it, with an explanation adapted to their role if they tap on a disability. The QR code does not replace the other tools, it fills the gap none of them cover well.
What is still left to do
Naming the burden of explaining will not make it disappear. But recognizing it changes three things.
First, it becomes possible to share it: a partner, a caregiver, a colleague can take on part of it once the subject has a name that can circulate. Second, it becomes possible to choose consciously when to spend it, rather than simply enduring it. Finally, it opens the door to dedicated tools, built for a problem that finally has a name: this article would not exist if the burden of explaining still had none.
Key takeaways
- The burden of explaining is the ongoing work of describing a disability to every new person you meet.
- For disability, it is one expression of the mental load; it is also called explanation fatigue or repeated explaining.
- It has a real cost: preparation, rephrasing, follow-up, multiplied across dozens of people over years.
- Several tools already exist (school-home logbook, MDPH card, Sunflower lanyard, medical bracelet, apps), each covering part of the need.
- Naming the burden is the first step toward sharing it and consciously choosing when to spend it.
You, or someone close to you?
Do you carry this burden day to day, support someone who does, or carry it at work?
What you have just read, you should not have to go over again from the start.
Every new school year, every new colleague, every medical appointment: you have to start all over again. Find the right words. Hope to be understood. myHandiQR puts an end to that. You write it once. You will no longer start over from the beginning at every encounter.