Please Don’t Call Us Warriors

When you hear hoofbeats behind you,
don’t expect to see a zebra

Professor Theodore Woodward, University of Maryland School of Medicine

Have you ever heard the phrase if you hear hoof beats, think horses, not zebras? I’ve been thinking about that a bit today. It’s a version of a phrase coined sometime in the 1940s by a medical professor wanting to teach his interns to weigh up medical evidence carefully, looking for the more probable and simple answers to diagnostic questions.

Wise advice that can be applied to most questions. Is it really likely that the patient presenting with flashing auras and debilitating head pain has an alien parasite growing in their brain (zebras), or is it, in fact, a migraine (horses)?

Except sometimes, the hoofbeats are zebras. Sometimes the migraine is a malignant parasite. Which means zebras shouldn’t be ruled out until there’s conclusive evidence that the hoofbeats belong to a horse.

In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is whether the disease is present or not. Whether it is rare or common does not change the odds in a single patient. … If the diagnosis can be made on the basis of specific criteria, then these criteria are either fulfilled or not fulfilled.

A. McGehee Harvey, James Bordley II, Jeremiah Barondess

This is why many people with the rare disease Ehler’s Danlos Syndrome call themselves zebras. Why the zebra is used as a mascot for awareness campaigns by the Ehler’s Danlos community.

It is why the American organisation NORD (National Organisation for Rare Diseases) uses a zebra in its promotional material and awareness campaigns. Why many of their posters show pictures of a zebra, and ask people to ‘Show Your Stripes’ for international rare disease day. NORD’s focus is to “improve the lives of individuals and families affected by rare diseases.”

Show your stripes – it’s an invitation to spread the word about rare diseases, what they are, what it’s like living with them. There’s a lot of stripes. This time, though, I’m not going to write about my conditions. I want to write about something that has bothered me since I was first on the trail of a diagnosis.

I want to write about warriors.

It’s how many people with rare diseases or chronic illness describe themselves and others. Warriors. Pain Warriors. Disability Warriors. They’ll wear t-shirts, get tattoos, stick bumper stickers on their car proclaiming “I’m a trigeminal neuralgia warrior’ or “I’m a chronic pain warrior”. They’ll share memes describing life as a constant battle, a constant fight.

Healthy people say these things too. We hear the terminology all the time, in the media, in the medical field. People ‘fighting for their life’ after an accident. People ‘battling’ disease. People ‘losing their battle’ against a terminal illness.

I get why . . . life is often difficult, often a struggle when you or people you love live with illness or pain as a constant companion. Particularly with rare diseases, which are often poorly understood by even medical staff.

The idea of being a warrior might give you a sense of control, of power in an area where you may feel power and control has been stripped away. Or you might see it as a positive affirmation of your coping skills. Warrior makes you feel strong and brave, resilient in the face of difficult circumstances. Perhaps too, there is hope contained in the label – warriors overcome, right? When warriors win, they’re heroes. They vanquish the enemy, send it packing with a flea in its ear and a boot up the arse. And wouldn’t we all like our illnesses to be vanquished? If warriors lose – well, warriors aren’t supposed to lose. But if they do, they can still be heroes who fought bravely for their cause.

I don’t want to be a warrior.
I don’t want to fight.

If I was a warrior, who am I fighting? What? Conditions like trigeminal neuralgia isn’t an invading army that I can go out and meet on the battlefield, spinning round with an axe in one hand and a shield in the other, lopping heads off as I go. The pain, the diagnosis, might feel like an invasion, sometimes, but ultimately the fight is against my body. I’d be fighting – me.

If I wanted to be a warrior.

But I don’t.

I don’t want to be a warrior because I don’t want to be at war with myself.

I don’t want to call myself warrior because I don’t want to wear a label that badges me as disabled, that defines my identity through the lens of disability and struggle and suffering. I’d rather not be reminded of my conditions at all. They’re pretty good at not letting me forget, without me needing a persona other people project on to me to remind me I have them. I don’t want my identity tied up so tight to my illness that I can’t untangle the knots.

I don’t want to be called warrior because I don’t want someone else deciding my identity for me.

I’m not the only one. I often have conversations with other people who dislike the term, who find it depressing, excluding, too negative, or a burden – too much pressure to conform to a specific ideal they don’t share. The trouble is, it can be very difficult to speak up for your own needs against prevailing norms. Please don’t call me warrior is a confronting request to make of people who embrace the term.

But I am going to make it.

I’m not going to try and change your mind about what the warrior terminology means. I’m not going to ask you to stop thinking of yourself as a warrior, or to justify it. I’m not going to criticise – everyone needs to express their feelings on their own terms. But I am going to say, remember we’re not all warriors. When you write a post to everyone on facebook groups, or an article on your blog, when you speak in a radio interview or address a support group, unless you have checked first. . .

Please don’t call us warriors.