Zebra? Why not the giraffe?

Have you ever wondered how we ended up with a Zebra as the “mascot”, if you will, for the Ehlers-Danlos Syndromes? I think about it frequently, in this line of business. In fact, I’m confronted with it every day on social media.

I read someone saying the other day when commenting on zebra wallpaper, that they’d have to get their coloured markers out and colour it in. "The zebra is just so… black and white".

The distinct lack of colour is a thing - to some a boring, bleak, seriously-lacking-zeal, thing… And I can’t help but think there are so many other animals that could have made a great mascot. So. Many.

Orangutans, for instance. Hello. Gangly arms, fingers and toes like humans, adorable faces. High intelligence. Rare in the wild (becoming even rarer!). Did I mention their adorable faces?

Sloths. Sleep, give me sleep. "They sleep about 15 to 18 hours each day (albeit upside down!). Sloths move only when necessary and even then very slowly” (Animal Corner). If for no other reason than how we internally feel inside on those horrible fatigue days.

Elephants. Those trunks; bendy if ever I saw something. Fluid retention +++ (haha). Built-in cooling system (flapping ears). So intelligent, so wise, and majestic. They also "demonstrate concern for members of their families they take care of weak or injured members and appear to grieve over a dead companion”. (Out of Africa) Elephants are just…. They’re just beautiful giants.

Lions. At least they freakin’ ROAR. According to Out of Africa, "they usually spend 16 to 20 hours a day sleeping and resting, devoting the remaining hours to hunting, courting or protecting their territory. They keep in contact with one another by roaring loud enough to be heard up to five miles away.” They sound like us: sleep and then fit other things in around that. Also, a group of them is called a Pride. That’s a pretty powerful “we’re not ashamed to be who we are”.

Giraffe. Have you ever seen a baby giraffe stand up for the first time? And fall back over again? Wobbly on their feet, knees that seem to move all over the place, splade out to 45 degrees; a neck that’s sticking out the front trying to help them balance (ours shouldn’t be doing this, by the way, it just does in a lot of people with hypermobility). A long reach. A tongue that moves like nothing else. Disproportionately long legs. A specialised circulatory system to account for their height (Animal World). Almost the epitome of a person with hypermobility, don’t you think?

And out of all of these, we ended up with a ZEBRA? A black and white, member of the horse family.

What? Why?

According to Animal World, zebras "are capable of running at speeds of up to 40 miles per hour” and "Zebras bodies are well adapted to their surroundings.” Hmmm… I don’t know about you, but I definitely can’t do that, and my body hasn’t adapted to my surroundings, I’ve had to adapt my environment to my body!

However, here comes the cool part:

"Zebras are very courageous animals and are not afraid to confront predators. Zebras also have a powerful kick which can cause serious injury to a predator such as a lion, hyena or African wild dog” (Animal World).

They’re considerably more ballsy than one would have thought.

In addition to those facts, as we know, zebras are naturally black & white (or brown & white depending on their age), which points to a glaring reality about life in the medical world.

Doctors often desire black or white.

Doctors frequently appear to have a distinct intolerance for anything that sits in the grey area.

They want to put it neatly into a box.

No overlaps, no hanging over the edge a little into a potentially different diagnosis.

They want it to be either this or that.

It can’t be both.

It shouldn’t be both.

But what if it is? What if it doesn’t fit neatly into a diagnostic box?

That kind of black & white thinking transferred across to the way patients think about their health a long time ago. The medical model where "doctors know all," and the medical profession governs health information, entered our culture what feels like aeons ago. And as such, as patients in general (not just those with hypermobility conditions), we want diagnoses.

We want clear-cut answers.

We want black or white.

We don’t want grey.

We don’t want maybes or “I don’t knows”.

I know as patients, especially in therapy, some get called out as "being black & white" or "all or nothing" thinkers, but when we spend a lot of time with doctors who are known for their desire for things to fit into neat boxes, it’s hard to think differently.

The whole idea behind the zebra as the unifying symbol in EDS is the somewhat medically famous quote “when you hear hoofbeats, think horses, not zebras”.

Zebras are rarer than horses. Med students, in particular, are taught to reign in (pun intended) their imaginations and think of the most likely cause of a presenting problem, not the more rare, unlikely things. And sure, in 99% of cases, this is probably sound medical advice from their teachers. There is no point in sending people for unnecessary tests or wasting taxpayers money.

However, in the case of the 1%, the “you & me”, this “lesson” does us a disservice.

This lesson traps the novice doctor in a cage of black OR white. It teaches them to look for the obvious, but it doesn’t teach them to look for the rare. It makes them uncomfortable with grey… and green, and purple and red. If it’s not black, or white, it’s…what? Too hard? Not there? Not possible?

Because of that reality, someone turned that saying around and said, how about we start teaching health professionals, when working with rare disorders, "to think zebras, not horses”. To look beyond what “should be” to what really is going on. Just as the black and white coat of the zebra confuses the lions, so too does our presentation.

We need to teach health professionals to keep looking and to focus on the other possibilities, not just the most common. We need to train their vision to see the whole picture of our health, to think outside the box (or the cage) and use their imaginations and their gifted brains. We may end up in grey areas; the checkbox might not be fully ticked, but as long as the right treatment is given for the symptoms, that is the main thing.

So while I think the giraffe is a much more accurate match for us with our bendy bodies and funny bodily systems, the zebra has a lot to teach us and health professionals.

Even in 2018, I wouldn’t mind guessing that 99% of the time doctors would lay bets on the more common diagnosis. The more read-about, researched-about, documented box. That’s the way medicine is. Unless there is documentation, unless someone has researched it and published it in a journal, then chances are a doctor isn’t going to back that theory, recommend that treatment, or suggest that alternative.

This is both good and bad. It’s good because we want our practitioners to be using evidenced-based practice; we want to know that randomised controlled trials have been performed; we want to know efficacy stats and information about medications, treatments and so forth. That is good medicine.

However, in an emerging area of medicine such as the management of connective tissue disorders, there is a serious lack of evidence to base practice on. Theories have to start somewhere. Experimenting with treatments and approaches have to begin with individual practitioners who are willing to think outside the box, the cage, the black & the white. We need the professionals who are willing to see the purple, the green and the red. We need practitioners who are eager to try and understand, to put pieces of the puzzle together and share that information with colleagues (and not be shot down for it).

We need practitioners who are willing to use their evidence-based training, their education and their common sense to start coming up with treatments that help, and for them to be acknowledged for it. We need these professionals.

So for me, the everyday heroes in the EDS/hypermobility world are the practitioners working on the ground with complex patients, trying to adapt their current knowledge and skills in ways that help patients with hypermobility conditions.

To all of you, please keep doing what you are doing. We need you.