Understanding the language of disability and chronic illness communities
Language matters. The terms used in disability and chronic illness communities have evolved from lived experience and help us communicate complex realities. This glossary explains terms you might encounter on KindredAccess and in the broader disability community. Understanding these terms helps build genuine connections based on mutual respect and understanding.
A metaphor created by Christine Miserandino to explain the reduced amount of energy available to people with chronic illness or disability. "Spoons" represent units of energy - once you've used your spoons for the day, you have none left.
Created by Christine Miserandino in 2003
Having limited energy available. Often used to communicate that someone is running low on capacity for activities, social interaction, or tasks.
A person who identifies with Spoon Theory, typically someone living with chronic illness, chronic pain, or disability who manages limited energy.
A temporary worsening of symptoms associated with a chronic condition. During a flare, symptoms may be more intense or new symptoms may appear.
A significant drop in energy or function, often following overexertion. Common in conditions like ME/CFS, fibromyalgia, and Long COVID.
A strategy of balancing activity and rest to avoid crashes or flares. Involves planning activities to stay within energy limits.
The range of energy you have available. Staying within your envelope means not overexerting; exceeding it can cause crashes or flares.
A cycle of overdoing activities on good days ("boom") followed by crashes or flares ("bust"). Pacing helps avoid this pattern.
A day when symptoms are manageable and energy is relatively higher. Does not mean symptom-free, just better than usual.
Taking an extended break from activities, including social interaction, to recover or conserve energy. Similar to going "dormant" temporarily.
Cognitive symptoms including difficulty concentrating, memory issues, mental fatigue, and slower processing. Common in many chronic conditions.
A health condition that lasts one year or more and requires ongoing medical attention or limits daily activities. Unlike acute illness, it doesn't fully resolve.
A disability that is not immediately apparent to others. Many chronic illnesses, mental health conditions, and neurological conditions are invisible.
A disability where symptoms and capabilities fluctuate over time - sometimes better, sometimes worse. Common in many chronic conditions.
Someone who uses a wheelchair but can also walk to some degree. Not all wheelchair users are paralyzed; many use chairs for energy conservation or pain management.
Having a brain that functions differently from the "typical" brain. Includes autism, ADHD, dyslexia, and other neurological differences.
Discrimination or prejudice against disabled people. Can be systemic (inaccessible buildings) or interpersonal (assumptions about capability).
A framework that centers the experiences and leadership of those most impacted by ableism, recognizing how disability intersects with other forms of oppression.
Something a person needs to participate fully and equally. This might be physical (ramps), sensory (captions), or social (patience with slow responses).
An adjustment or modification that enables equal access. Accommodations don't give advantages - they level the playing field.
Overwhelm from too much sensory input (sounds, lights, textures, smells). Common in autism, sensory processing disorders, and some chronic conditions.
Hiding or suppressing disability-related behaviors or needs to appear "normal." Common in neurodivergent people. Exhausting and unsustainable long-term.
An activity, plan, or interaction that is designed to be low-energy and accessible for people with limited capacity.
Someone who may take longer to respond to messages due to energy limitations, brain fog, or other factors. Not a sign of disinterest.
Communication that doesn't require immediate responses, like messaging or email. Preferred by many disabled people over real-time conversations.
The total amount of energy available for a given time period. People with chronic conditions must "budget" energy carefully across activities.
Language in disability communities is always evolving. If there's a term you think should be included, let us know!
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