Translating Chronically Ill Patients’ Jargon
It may be difficult for those who don’t live with a rare or chronic disease to understand these words among those that do.
Below are some words, acronyms, and phrases you may hear from patients with a chronic illness:
Ableism: discrimination in favor of non-disabled people.
Ablesplain: explaining something in the most patronizing way possible from someone who is not disabled.
Autie: (also known as Aspie) slang for an autistic person; there is debate within the community on its use.
Brain Fog: (also known as Fibro Fog, Pain Fog, or Med Fog) the feeling when the pain or the medication makes it hard to think; you forget things, mix up terms, and say the wrong things, among others.
Bump: used online to boost a post up if it has no replies or not a definitive answer.
Button Tube: less conspicuous feeding tubes since the extension (tube) isn’t there, leaving only the “button” on your person.
Central Line: (also know as Hickman, port, or PICC line) a long-term IV placed into a large blood vessel near the center of the body, often through your chest and ending at your heart.
Crip: (also known as Gimp) slang from cripple where those who are crippled have decided to reclaim it as their own word and use it for themselves.
CW: the abbreviation for “Content Warning”; a heads up that the following may trigger a phobia than an actual trigger.
Feeds: the formula that goes through the feeding tube to sustain and nourish tubies.
Flare: an acute acting up of your chronic illness.
Flip/flipped: for those who have a G-J tube, this is when the J-arm comes up from the intestine and into the stomach where it doesn’t belong.
Gastro-Jejunal tube (G-J tube): a tube that goes through your stomach and into the intestines
Gastrointestinal (GI) Motility: movement of the digestive system and its ability to move anything in there through the gastrointestinal (GI) tract.
Gastrostomy tube (G-tube): a tube through the abdomen and into the stomach
Image Description: telling someone what’s going on in the picture used for low vision/people who are blind, screen readers, low bandwidth, etc.
Jejunostomy tube (J-tube): A J-tube is a small, flexible tube inserted into the second/middle part of the small bowel (the jejunum).
MCAS: Mast Cell Activation Syndrome – a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing, and severe diarrhea.
Muggle: slang term used within the chronic illness community for people living without a chronic illness used in a tongue-in-cheek way in reference to Harry Potter.
Muggle Sick: slang for “normal people sick,” such as a cold.
Nasogastric (NG) and Nasojejunal (NJ) tube: a tube that goes through the nose instead of the gut.
NP: Nurse Practitioner
NPO: nothing by mouth for certain procedures.
NTCP: Newbie Tubie Care Packages.
Painsomnia: pain meets insomnia where you can’t sleep because of pain.
PCP: Primary Care Physician
POTS: Postural Orthostatic Tachycardia Syndrome, a condition that affects your blood flow where you would experience lightheadedness, fainting, and an uncomfortable, rapid increase in your heartbeat when you stand up and relieved when you sit or lie down.
Signal Boost: posting something in an online forum, group, or personal social profile that needs attention, meaning that it needs to be read or shared.
Spoon Debt: to do something but you won’t have the energy for tomorrow; to reach into your reserve “spoons.”
Spoonie: taken from the spoon theory, this is someone who has a chronic illness.
Stoma: the tube site; this is the area on your outer abdomen where the tube enters for tubies.
TW: the abbreviation for “Trigger Warning”; a callout that the following information would cause acute distress such as abuse or suicide.
TPN: total parenteral nutrition; nourishment coming straight from an IV bag into your central line to stay nourished.
Tubie: a term used in the chronic illness community to refer to tube-fed people.
Tubie Friend: a stuffed animal or doll with medical devices to match your own such as feeding tubes, central lines, oxygen mask, etc.
Tubie Pads: used to help keep the tube site for the feeding tube clean, similar to gauze.
Vent: what you do if you feel nauseous or have air stuck in your gut if you have a feeding tube in your stomach.
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