The Burden of Explaining: The Mental Load of Invisible Disability

Introduction

The explanation burden refers to the ongoing work a person does when they have to explain a disability, their own or a loved one's, to every new person they meet. Some also call it explanatory fatigue or explanatory repetition. For disability, it is the counterpart of what is more broadly known as mental load. This article explains where this burden comes from, what it costs, and why naming it changes something.

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 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 explanation burden is the ongoing work of explaining a disability to every new person you meet.
• For disability, it is the counterpart of mental load; it is also called explanatory fatigue or explanatory repetition.
• It has a real cost: preparation, rephrasing, follow-up, multiplied by dozens of people over the years.

You, or someone close to you?

Do you carry this burden day to day, support someone who does, or carry it at work?

• Parent of a child with a disability
• Adult living with a disability
• Employee with a recognized disability (RQTH, in France)
• Family caregiver