Why We Call Ourselves Zebras - And What It Means to Be a Spoonie

Living with rare diseases and chronic illness comes with a language of its own. If you’ve ever heard people with Ehlers-Danlos Syndrome (EDS) call themselves “zebras” or people with chronic illness refer to themselves as “spoonies,” you might have wondered: What does that mean? These aren’t just quirky nicknames — they’re powerful metaphors that connect us, explain our lives, and make us feel less alone.

The Zebra: More Than Just Stripes

In medical school, doctors are often taught: “When you hear hoofbeats, think horses, not zebras.” The saying means that the most common explanation for symptoms is usually the right one. But for people with rare diseases like EDS, POTS, or MCAS, we are the zebras — the less common diagnoses that don’t always fit the “usual” pattern.

Calling ourselves zebras flips that phrase on its head. Instead of feeling dismissed or invisible, we wear the zebra stripes proudly as a symbol of identity and awareness. It’s a way of saying: We exist. We may be rare, but we are here — and our conditions deserve recognition.

Many EDS awareness campaigns use the zebra stripe as their emblem, reminding both patients and doctors that sometimes the “hoofbeats” really are zebras.

The Spoon Theory: How We Measure Energy

The Spoon Theory was created by Christine Miserandino, who lives with lupus. In trying to explain to a friend what it’s like to live with a chronic illness, she used a handful of spoons as a metaphor for her daily energy.

Here’s how it works:

• Each spoon represents a unit of energy.

• Healthy people start the day with unlimited spoons and rarely have to think about running out.

• People with chronic illnesses start with fewer spoons — and every task, even simple ones like showering, cooking, or leaving the house, costs a spoon.

• When the spoons are gone, there’s nothing left. You can’t just push through. You have to stop, rest, and recover.

  
  

For many of us, the Spoon Theory puts words to something we’ve struggled to explain. It helps friends, family, and caregivers understand why we can’t “just do it” or why we cancel plans at the last minute.

Why These Metaphors Matter

The zebra and the spoon are more than symbols — they’re lifelines. They give us a language for our experiences, helping us communicate what daily life is really like. They also build community. When you meet another “zebra” or “spoonie,” you instantly know they get it. There’s no need to explain the exhaustion, the medical battles, or the emotional weight.

At Zebras and Spoons, our name brings these two powerful metaphors together. This is a space where rare disease and chronic illness intersect with mental health, where energy is precious, and where identity and community help us keep going.

Closing Thought

If you’ve ever felt like your symptoms don’t make sense, if you’ve been told “it’s all in your head,” or if you’ve had to measure your days in spoons, you’re not alone. You belong here, among the zebras and the spoonies. Together, we make the invisible visible.