My Stripes are My Normal

I was always firm on the idea that I would never get a tattoo. Why? Because it’s not common in my culture. In fact, women with tattoos are looked at as promiscuous and troublesome. Not to mention all the stories of ink permanently and regretfully penned into the skin after late-night drunken stupors and broken hearts. I’d rather cut or dye my hair; at least those regrets will grow out or can be hidden with a hat. So, imagine my surprise when I did get a tattoo, one so small the artist needed to use a magnifying glass to create it. People approach the concept of a tattoo differently; some see it as branding, an artistic expression, a reclaiming of themselves and their bodies over a scar, or even a memorial. All these meanings are beautiful. If I had to pick one, I would say mine came from the intention of branding, self-identification, and claiming my place in a herd because I chose to get a tattoo of a zebra, the majestic and confusing herd animal of the African savannah. I’ve never been particularly fascinated by the zebra; if asked to name my favorite animal, owls and tigers would be at the top of my list, even though I’m petrified of birds. Of course, zebras carry the same gleaming curiosity of lions and elephants, and it would be on my list if I went on safari. But I had chosen the zebra because in some odd way the animal had haunted my life, and I was now welcoming it with full awareness.

“When you hear hoofbeats, think horses, not zebras.” This is a phrase you’ll hear often in the annals of medicine. Doctors since the 1940s have learned this phrase in med schools all over the United States. It’s a phrase coined by Dr. Theodore Woodward. Dr. Woodward was a 1938 graduate of the University of Maryland School of Medicine, and apart from his service in the U.S. Army between 1941 and 1946, he would spend his entire career there as a researcher, practitioner, and teacher, until he retired in 1981. His time in the army greatly influenced his medical practice, having traveled to locations like North Africa, Italy, England, France, New Guinea, offshore islands, and the Philippines during typhus and typhoid outbreaks. He would be nominated for a Nobel Peace Prize for his role in finding cures for those diseases.

The good doctor died in 2005, and zebras like me would love to punch him in the face. Dr. Woodward taught all his interns his model of practice, which was intended to discourage medical students from overlooking commonality in hopes of rarity, a tendency many medical students lean toward. The ​​aphorism operates first from the medical creed of do no harm, in that if a doctor is looking first at the most common ailments, conditions, and diseases of the population, then they will reach an accurate conclusion sooner and through less invasive means than if they searched for rarity. Second, and more problematically, it operates from a U.S.-centric perspective, where zebras are rare phenomena not native to the wild and still limited in controlled environments like zoos. In fact, with a little googling, I’ve determined that out of the roughly 2,400 U.S. zoos currently open to the public, only 66 house zebras. A drastically different metric from wild zebras. In 2022, the IUCN (the organization charged with maintaining the “Red List,” a list of animals in danger of extinction) assessed the population of the African plains zebra to be 660,000. In this case, 255 million patients with Ehlers-Danlos syndrome (EDS) are the zebras.

EDS is a genetic connective tissue disorder that currently breaks down into thirteen subtypes, the most common of which is hypermobile Ehlers-Danlos syndrome (hEDS), and the most dangerous of which is vascular Ehlers-Danlos syndrome (vEDS). All thirteen subtypes share similar symptoms, including chronic joint and muscle pain, easy and frequent bruising and bleeding, joint dislocation, muscle weakness, chronic gastrointestinal distress, and the list goes on. The bruising and bleeding symptom is so prevalent in EDS patients that knowledge of this disorder can be traced back to Hippocrates in 400 BC. So, if the father of medicine knew about EDS, why so much hostility toward Dr. Woodward? It’s complicated. No, it really is. EDS is a genetic disorder, so a “true” diagnosis isn’t possible without genetic sequencing and analysis, which, in the 2,400 years since Hippocrates, medical and technological diagnostics have only
developed such testing in the last thirty years, and we are still perfecting it. The only other way to diagnose EDS is through, as the legal system would say, a preponderance of evidence. Symptoms and medical knowledge must line up just right in order for a doctor to consider an EDS diagnosis, and for many patients that can take years. In fact, according to the Ehlers-Danlos Society, the average length of diagnosis is currently ten to twelve years. The diagnosis process of EDS patients is primarily hindered by Dr. Woodward’s ​ aphorism to think of horses instead of zebras. Like the stripes on zebras, EDS symptoms help the disorder to blend in with other more common conditions and confuses doctors into thinking a patient may have a more common condition, leading to an exhausting cycle of diagnosis, misdiagnosis, and diagnosis again.

My hEDS diagnosis took roughly twenty years, with symptoms setting in before I was even ten and a genetic diagnosis finally happening when I was thirty-two. In 2021, two years before my EDS diagnosis, I published an essay titled “Call Me Disabled,” in which I discussed the significance of labeling, diagnosis, and medical gaslighting, subjects which of course are
unavoidably prevalent in an essay about EDS. But beyond Dr. Woodward, I won’t harp on those topics in this essay. In fact, I’m more interested in the banality that ultimately develops when living with a rare disease like EDS. Not because EDS isn’t dramatic, on the contrary, there is a lot of drama associated with having a rare and complicated condition that no one understands. Patients experience multiple symptoms and comorbidities that sometimes affect us more than the primary symptoms of EDS. For example, in “Call Me Disabled,” I talk about the diagnosis process of my sudden vision loss, a rare and unfortunate neurological side effect associated with one of the many EDS comorbidities. I’m told it’s a dramatic experience, which I discuss flippantly — how can I be so calm about losing my eyesight so suddenly and with no answers as to why for seven years? Because to me it wasn’t a drama. At that point I’d been living with EDS
for fifteen years. I was used to my body’s odd functionality. If everything that my body did was a drama, I’d probably qualify for a lifetime achievement Oscar. Musculoskeletal pain, for example, is the quintessential symptom of EDS, and I had already lived with it daily. I remember the first time I was in an MRI machine, it was in the basement of a brownstone, and they stuck me in this tube that shook and made all sorts of uncomfortably loud noises, all because at the age of eight I
was dealing with unexplained back pain that wouldn’t go away. The MRI results would come back with mild scoliosis, but otherwise everything looked normal. They gave me a back brace, which I would never wear because it worsened the pain, and told my mother I suffered from growing pains. It was assumed I would grow out of the pain, but I was fully grown before I hit puberty. Before I was an official adult, my family called me the Old Battle Axe, and not with the possible admiration I think the term can convey. After all, a battle axe denotes Vikings and their weapons of war and victory, not a crippled young adult who has the grace of a newly born foal.

Living and growing up with a chronic condition like the pain which eventually spread from my back to my joints is a naturally acquired skill that requires no conscious action. I can’t tell you the moment I took my first steps, or that pain became my ever-present companion, in the same way that I can tell you about how I learned to ride a bike or read. Pain and walking are very much aspects of life you experience while other people watch, and aside from holding your hand, they can’t do much, as you learn to put one foot in front of the other. That doesn’t mean they don’t live it with you. For example, Epileptic, a novel by French graphic artist David ​ Beauchard, depicts the all-consuming nature of his older brother’s epilepsy, which started when David was five. Beauchard chronicles how his family was dragged along by the ebbs and flows of the condition, and the stress and toll taken by the diagnosis, treatment, and life of living with a person with an unpredictable chronic condition. The twisting, contorting, and shaking a body does when in the grips of a seizure is certainly dramatic, and Beauchard captures those moments and their ripple effects in a way that I feel speaks not just for his family and epilepsy, but also for chronic illness as a whole. However, the novel and its creation are very clearly a tool Beauchard used to work through the anger and resentment he had developed around his brother’s condition, and as a result, he overly emphasizes negative fallout on those who surround a person living with a chronic illness.

As I stated earlier, EDS has many symptoms and comorbidities, one of which is postural orthostatic tachycardia syndrome (PoTS), an autonomic nervous system condition that makes it difficult to maintain healthy blood pressure and flow when upright or changing positions. While that is the simple medical description, there is another description passed around by “PoTSies” (patients with PoTS), which describes living with PoTS as running a marathon while spinning in circles, with an elephant sitting on top of your chest after two weeks without sleep and having the flu. I know which is my preferred description. According to Standing Up to PoTS, a research and advisory organization on the condition, 80% of EDS patients have PoTS, but the inverse is not true, and I am certainly counted in that statistic. In fact, I knew I had PoTS before I knew I had EDS. PoTS is often mistaken by doctors as a form of epilepsy due to one key dramatic feature,
fainting. And no, not every Victorian woman had PoTS. In fact, corsets and other compression garments are extremely helpful to PoTS patients, so the Victorian style would still be in fashion if PoTSies had anything to say about it. The first time I fainted, I was eighteen, standing in a hall of the NYU humanities building, waiting for a class to start. I was surrounded by classmates I had just met discussing the reading for the day when the world faded to black. I woke up to a buzzing chatter, fluorescent lights in my eyes, and, aside from the pain in my back — my poor back never catches a break — I felt fine. It took nine years of poking, prodding, and tests to figure out what PoTS was. inevitably, as conditions like these go, I would diagnose myself before formally getting a diagnosis from one of the only two doctors in New York City who specialize in PoTS.

In his novel, Beauchard depicts a world of acquired normalcy that stops and resets whenever his older brother’s seizures flare up. Life is interrupted by the uncontrollable, so that every effort is made to regain a semblance of the previously established normalcy. It is that insight into his family dynamic with epilepsy that inadvertently represents that chronic illness isn’t a one-size-fits-all life circumstance. In my family, after years with the undiagnosed condition, it became nothing more than a normalcy and undramatic fact that earned no thought or pause. Out of the mouths of babes, PoTS fainting has its own term in my family. “Nina went splat” was coined by one of my many younger cousins, and is now the descriptor you can hear yelled down the stairs, no matter the age of the person yelling. “Nina went splat!” But don’t expect running footsteps. That stopped a long time ago. Now you’ll hear “Is she bleeding?” shouted back, and, if the answer is no, the conversation is over, and I’ll wake up after a few minutes to a cat making biscuits on my chest. Cats are the most unperturbed creatures ever.

While the world doesn’t stop when a PoTS episode happens, that doesn’t mean life doesn’t get modified. Take Thanksgiving for instance, not because it’s of significance, but because I’m writing this a few days before the holiday, so it’s on my mind. When you come from a large multigenerational family, like I do, there are a lot of logistics to think about: seating arrangements, grocery lists, who will do the cooking and how long will it take, and the list goes on. But you never think of the plates, at least not until it’s time to set the table. This is usually my job, it keeps me out of the chaos of the kitchen, whereby the time the table should be set multiple people have started arguing. On this Thanksgiving, the task was easy enough. All the dinnerware and table dressing had been washed the night before after a year of collecting dust, so everything was neatly piled and waiting for me. As I slowly placed everything across the table, I realized there was a miscount of plates, an extra child’s plate and a missing china plate. I carried the light plastic bright blue plate into the kitchen and confronted my cousin, the host of the year, with the error likely not her own, but a miscount by whoever had helped with the dishes earlier that morning. But I discovered it wasn’t an error, as one of her sons indignantly shouted and snatched the offending plate, which was apparently his and had been set aside for my use that night. Moments like this are a subtle encroachment on the concept of normal in my chronically ill life, a reminder that the life I live is modified for myself and others. Honestly, I couldn’t blame her. The china set she was protecting, a wedding gift, was beautiful, and I knew what it meant. I had grown up with my mom’s china set, a delicate white china trimmed with an equally delicate silver ribbon and accompanied by sparkling crystal wine glasses that my sister and I had picked out as children for a Mother’s Day gift to help her complete the collection. That set was only ever brought down from its high perch on the top shelf off the kitchen cabinet for holidays like this, and the word careful, wasn’t enough to describe the amount of care needed to carry each item the ten steps from the kitchen to the dining table. When I woke up an hour later with my cousin’s dog licking the spilled scraps of my holiday dinner from the floor around me, I couldn’t argue the choice wasn’t justified. Over the pounding in my head, I could hear the undisturbed holiday chatter coming from the dining room. Life was moving on around me undisturbed, the modification to give me a plastic plate meant there was no loud shattering as porcelain hit tile, and the decision saved both my cousin and me from emotional trauma. I know I would have felt guilty if anything had broken, due to my unstable relationship with being upright. (To curb your
curiosity, no, I didn’t inherit my mother’s china, but that’s because I wasn’t her favorite.)

In the same vein, I think about how I’ve modified the way I travel. Most people don’t give a thought about traveling beyond planning and expenses, maybe even less than that if you’re privileged enough, but there are only two types of people who really understand how exhausting taking a vacation can be. Parents of children under thirteen and people with disabilities. When you take a pharmacy’s worth of medications at designated times, significant time changes can really screw you over. I learned that the hard way while traveling to California for a four-day
trip — the seemingly small three-hour time difference meant my symptoms would flare at the most inconvenient times, as my body reminded me I was late taking my medication on my usual schedule. It would take me two weeks after returning home to readjust. I’ve gotten in the habit of traveling solo for many reasons, but the main one is that I don’t have to worry about other people while I travel. I remember traveling to Ireland in April with a friend. It was still on the chillier side, especially for me and my joints, which don’t like the cold. We went to see the Cliffs of Moher, which I highly recommend. It’s a stunning view even on a foggy, dreary day. We were very excited for the long day trip from Dublin, but I (my body) ruined it a little. It’s cold and damp on the cliffs in early April, but we roamed them, climbing the steps to the various landings barely halfway when the pain started to creep in and my knees, which are important for climbing, started stiffening (plus I started to get cranky from frustration). I ended up leaving my friend in favor of the warm visitor center, and she made it known to me that it hadn’t been appreciated. Now I go on vacations solo, because I can never be sure how my body will handle the stress, and I don’t want to be responsible for other people’s experiences. Another friend of mine who also has EDS has become my travel buddy. She suffers from severe gastrointestinal distress, another common symptom of the disorder, and she lives in a constant state of nausea and often falls sick to fits vomiting without warning. She doesn’t go anywhere without a bottle of seltzer in her bag and, when she travels, she never makes plans except to be at her destination. She’s becoming my travel companion, because I can be miserable while I travel and not have to worry about making someone else miserable. When we travel together, it’s low pressure, because we both know that the other has unpredictable limits and understands what changing plans and resting in the hotel means for the other. There are no broken expectations, because, like with the china plates, we’ve given the other something that can’t break when one of us inevitably drops it.

As a whole, 255 million EDS zebras could replace the populations of Chicago, Houston, Vienna, Brisbane, Brussels, and Damascus, and yet we’re rare and strange creatures that aren’t seen or understood. Zebra stripes are similar; these creatures have been studied for over a hundred years, but it’s still unclear why they have stripes. There are eighteen different theories, the most prominent of which is that zebra’s stripes allow the animals to blend in with each other and visually confuse predators who can’t distinguish one member of the herd from another as they move in relative unison. For EDS, as a connection, this theory works well: if it wasn’t that the symptoms of the disorder could easily be mistaken for something else, it’s unlikely the condition could move undisturbed and relatively undetected for two thousand years. Another theory is that the stripes act like a family fingerprint, and each heard member can identify another from their stripes in the same way whales and dolphins understand the songs of their pods. For EDS patients, that’s what the stripes mean and why the symbol of the zebra has been claimed by our community. We’re identifying ourselves and our struggles under this banner, and it has become easier to find each other. That’s how I met my travel companion in an EDS support group built organically by people who recognized our shared struggle, empathized with it, and fostered a place of mutual support. Most EDS patients in the last thirty years have diagnosed themselves before doctors did, by following breadcrumbs to these herds. It is with the support and knowledge that others like us exist that we have become a loud stampede and doctors are opening themselves up to considering zebras as well as horses when they hear our hoofbeats.