Lupie? Spoonie? Lupus Patient Talk To Know

Ever been in a situation where someone says a new acronym or slang, and you just sit there confused? Most of the time we find ourselves nodding and pretending to understand to bury any chances of being embarrassed, then go on our phones to search what it means. But wouldn’t it be so much easier if we were up-to-date and knew what that word meant when the person said it?

For the millions of people living with lupus, this confusion happens regularly. Except these confusing words aren’t slang used for style or for fun. These phrases are essential to adapting and living with this unpredictable, invisible disease. And that is why, I’ve curated a dictionary with the vital vocabulary of the “Lupie” community.

*Disclaimer:

The information provided in this article is for general informational purposes only and is not intended as medical advice. It should not be used as a substitute for professional diagnosis, treatment, or advice from a qualified healthcare provider. Reliance on any information provided in this article is solely at your own risk.

See a word you don't understand? Find it in our glossary.

Back in 2003, Christine Miserandino created “The Spoon Theory”. Christine is an active lupus advocate and was asked by her friend what it really feels like living with a chronic illness. Creatively, Christine didn’t just answer with a regular narrative. She coined the term “Spoon Theory” by using spoons as an analogy. She grabbed a handful of spoons and used them to explain limited energy. When you grab a handful of spoons, you don’t always know how much you’ll get, basically like how lupus patients don’t always know the amount of energy they’ll have on that day. Then, for every activity, a spoon is taken away to represent the energy spent. This analogy depicts the fact that after grabbing the spoons, lupus patients usually plan their day according to how many spoons they have in their hands. This is a way for lupus patients to conserve energy. And people who use this concept are usually addressed as a “spoonie”.

These terms are commonly used within the lupus community for communication that is quick, empathetic, and relatable.

Lupie: Used by fellow lupus patients to show support and address themselves.

Spoon count: The amount of energy available to be used in a day.

Borrowing spoons: Using up more energy than you’re capable of in a day, resulting in less energy on the next day (like an energy deficit).

Pacing: The strategy for allocating energy to reduce the chances of a flare-up.

Out of spoons: When your energy has run out, rest is needed no other activities can be done that day.

These are words that can be used to perfectly explain how you’re feeling to a friend or at your next doctor’s appointment.

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Fatigue: Headache combined with body energy depletion. It can rarely be relieved by sleep.

Brain Fog: Cognitive symptom regarding difficulties in retaining memory (inability to find words, a long loading phase after hearing things, unable to understand things as fast as you used to, difficulty in focusing).

Photosensitive: Sensitive to sunlight that can cause flares.

Knowing this vocabulary can help a lot when your doctor is explaining your current conditions. It keeps you up-to-date, helps you easily understand what the doctor said, and leaves more room for questions rather than, “Sorry, can you explain what that term meant?”

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Flare-up: The worsening of lupus symptoms.

Remission: Lupus has quieted down, not cured, but no medications are needed anymore.

Lupus nephritis: An aggressive condition of lupus that attacks the kidney.

Butterfly rash: A butterfly-shaped rash (across your cheeks and nose) signaling a flare.

HCQ: Hydroxychloroquine, a drug used to manage lupus symptoms and flares.

Biologic medications: Targeted medications that modify specific immune responses.

Those are the most commonly used phrases in terms of the lupus community. There are no better teachers than time and experience, but hopefully, this article can lighten the work needed to understand some of the phrases commonly used by lupus patients. As always, being diagnosed with lupus is not easy, so don’t be too hard on yourselves, or on anyone you know who is facing it. Spread awareness and care, not fears and scares.

Spoon Theory: A New Way to Think About Your Daily Energy | National Center on Health, Physical Activity and Disability

Glossary | Lupus Research Alliance​

Glossary of Lupus Terms | lupus.net