Chronic illnes Glossary

This glossary is for anyone who falls under the umbrella of living with a chronic illness.

That includes—but is not limited to—people who have endometriosis, lupus, ehlers danlos syndrome, fibromyalgia, an autoimmune or energy-limiting condition. We don’t gatekeep. This resource is for anyone who finds this useful, regardless of when (or how) they became disabled.

It includes terms and examples to help explain how spoons, pain, energy levels, and the need for things like certain devices and aids affect daily life and benefit eligibility. This glossary isn’t exhaustive—so if there’s a term you feel is outdated or missing, please let us know!

Community Terms

Flare-Up

When symptoms suddenly and often unexpectedly get worse for hours, days, or longer.

A condition where your symptoms can change from day to day or hour to hour. Some days may be easier; others may be much harder.

Fluctuating Condition

Imposter Syndrome

Feeling like you’re “faking” your condition or don’t deserve support, even when you’re really struggling.

Feeling guilty or ashamed for needing help or not being able to do things like others.

Internalised Ableism

Medical Gaslighting

When a doctor or professional doesn’t believe or dismisses your symptoms, making you doubt yourself.

Things you do to take care of your physical and mental wellbeing, like resting, managing hygiene, eating, or using heat/ice packs. This often can take a lot of energy when in a flare.

Self-Care

Spoonie

A person who lives with a chronic illness or disability and uses Spoon Theory to describe their life.

A way of explaining how energy works when you have a chronic illness:

You start each day with a limited number of spoons (units of energy).
Each task like washing or cooking uses up 'spoons'.

When you run out, you can’t keep going.
Chronically ill people often refer to having no energy as running out of spoons.

Spoon Theory

Unsolicited Advice

Being given suggestions or comments you didn’t ask for, often from people who don’t understand your condition, such as to eat more kale.

A symbol used in chronic illness communities, from the medical saying “when you hear hooves, think horses not zebras,” as rare conditions are often overlooked.

Zebra

Pain Symptoms

Pain that lasts for months or years. It may stay at a steady level or come and go, and vary in intensity and frequency.

Chronic Pain

Neuropathic Pain

Pain caused by nerve damage or irritation: feels like burning, tingling, or an electric shock.

Not being able to sleep because of pain.

Painsomnia

Pain Threshold/Tolerance

The point at which something starts to feel painful, before needing to stop or rest.

Pain that starts in the lower back and travels down your leg. The pain may feel sharp, burning, or like electric shocks. It can cause numbness, tingling, or weakness.

Sciatica

Energy & Activity-Related Symptoms

Doing too much on a better day (“boom”), then feeling worse or unable to function for days after (“bust”).

Boom/Bust Cycle

Chronic Fatigue

Extreme exhaustion that doesn't improve with rest. This is not just being 'tired', but like the body/brain has shut down.

Mental exhaustion that makes it hard to focus, plan or think clearly. This often comes after trying to concentrate or process too much.

Cognitive Fatigue

Crashes

Times when symptoms get much worse, and you need significant rest. This often happens after periods of overexertion.

Feeling unwell or in pain after even small amounts of movement. This may lead to nausea, dizziness, or physical and emotional exhaustion.

Exercise Intolerance

Overexerted / Overexertion

Doing more than the body can handle, by ‘pushing through’ pain, causing worsening symptoms, flares, or crashes.

Spreading out your activities with breaks so you don’t push yourself too far and crash. This helps to manage symptoms and reduce flare-ups.

Pacing

Post-Exertional Malaise (PEM)

Feeling worse the day after doing either a physical, mental or emotional task. Symptoms like pain, fatigue, or brain fog increase after doing too much.

Musculoskeletal and Joint Condition Symptoms

When stomach acid flows back into your throat, causing a burning feeling (heartburn) or a sour taste.

Acid Reflux

Dislocation

When a joint comes completely out of place.

Ongoing problems with digestion, such as bloating, nausea, constipation, diarrhoea or abdominal pain.

Gastrointestinal Issues

Hypermobility

Joints that move more than normal and can lead to pain, joint instability, and frequent injuries or dislocations.

Swelling, heat, or redness in the body; often part of autoimmune conditions.

Inflammation

Joint Instability

Joints that feel loose, weak, or like they might give way. This can cause pain or increase the risk of dislocations.

Putting a dislocated joint back into place. Some people can do this themselves due to frequent subluxations.

Joint Relocation

Ligament Laxity

Ligaments are too stretchy or loose, which can cause pain, instability, and joint injuries.

When muscles shrink or weaken because they’re not used, or due to illness or nerve problems.

Muscle Atrophy

Subluxation

A partial dislocation where the joint slips out but then goes back in by itself or with help.

Cognitive and Autonomic Symptoms

Problems with the nervous system area that controls automatic things like heart rate, breathing and temperature regulation.

Autonomic Dysfunction

Blood Pooling

When blood stays in your legs after standing up, making you feel faint, dizzy or weak. This is common in POTS and dysautonomia conditions.

When your heart beats slower than usual, which may cause dizziness, fatigue, or fainting.

Bradycardia

Brain Fog

A feeling of confusion or mental “cloudiness" that makes it hard to think clearly, remember things, or focus. ‘Fibro fog’ is brain fog that comes with fibromyalgia.

A group of conditions where the automatic functions in your body—like heart rate, blood pressure or digestion—don’t work properly.

Dysautonomia

Electrolytes

Minerals in your body that help with energy, hydration, and muscle function that drop too low when dehydrated.

Feeling faint, dizzy, or sick when standing or sitting upright for too long. This is linked to blood pressure and heart rate changes.

Orthostatic Intolerance

Palpitations

A feeling that your heart is fluttering, pounding or skipping beats that can happen during rest or activity.

The feeling that you are about to faint, including dizziness, vision changes or nausea.

Presyncope

Syncope

Fainting—when you suddenly lose consciousness for a short period of time.

A fast heart rate, usually over 100 beats per minute, even when resting.

Tachycardia

Vertigo

A spinning or dizzy feeling, often made worse by movement or looking around.

Symptoms and Syndromes

A condition where part of the brain is pushed into the spinal canal. This can cause headaches, dizziness, or coordination problems.

Chiari Malformation

Costochondritis

Pain and inflammation in the chest where the ribs meet the breastbone, often mistaken for heart and chest pain.

A heart valve issue common in some chronic illness conditions like EDS and Marfan’s. It may cause palpitations or chest pain.

Mitral Valve Prolapse

Raynaud’s Syndrome

A condition where fingers and toes change colour or go numb in response to cold or stress.

An uncomfortable feeling in the legs, often at night, that makes you want to keep moving them.

Restless Legs Syndrome

Slipping Rib Syndrome

A condition where the lower ribs move out of place, causing pain, clicking or popping in the ribs.

Pain or clicking in the jaw, often causing headaches, face pain, or problems with eating or speaking.

Temporomandibular Joint Disorder
(TMJ / TMD)

Urticaria

Known as hives: a skin rash that appears suddenly, causing itchy, red or raised patches. It is triggered by allergies, heat or illness.

Non-cancerous growths in the womb that can cause heavy bleeding, pain, and fertility problems.

Uterine Fibroids

Vasovagal Syncope

Fainting caused by a sudden drop in heart rate and blood pressure, triggered by pain, standing too long, or stress.

Devices and Assistance

A parking permit that allows disabled people to park closer to shops or services.

Blue Badge

Compression Garments

Tight clothing that improves blood flow and reduces swelling, dizziness, or pain.

Tools or furniture made to reduce pain or strain like chairs, keyboards, or cutlery.

Ergonomic Equipment

Grabber

A long tool with a claw used to pick things up from the floor or reach high shelves without having to bend or stand.

Covers different forms of stablising support. Braces are worn on the knees, wrists, or other joints to stop them from moving too far or dislocating. Orthotics are worn inside shoes or on joints to help with alignment, pain, or walking.

Joint Supports

KT Tape (Kinesiology Tape)

Stretchy tape placed on the skin to support muscles and joints, reduce pain, or improve range of movement.

Trained dogs that help with tasks like alerting to medical issues, retrieving items, or providing emotional support.

Medical Alert or Assistance Dog

Personal Assistant (PA)

Someone paid either privately, through the council or external funding to help you with daily tasks such as dressing, communication, cooking, travel or NHS appointments.

A lanyard or card that lets other members of the public and staff know you have a hidden disability and may need help, time, or space.

Sunflower Scheme

TENS Machine

A small device that sends electrical pulses through the skin to help reduce pain.