A Day in the Life of a Disabled Healthcare Provider
It’s Tuesday morning. I’m in bed, eyes closed, and my alarm has just been snoozed. Yesterday, I was awake at 5am, out of bed at 6:30am, and then out of the house until 7pm. I focus on my breath and my plan for the day. It’s Tuesday morning.
Second alarm. Time to prepare for movement. The table next to my bed houses everything I need for each morning: eye drops, water, medications, a small snack to eat before my medications, compression gear, finger splints, and braces for my knees and back. My eyes open slowly, grating over my dry sclera. My mouth feels like a desert. I put eye drops in my eyes and take a sip of water. I eat a few crackers and take my pills.
Third alarm. Time for compression gear. On days like today, I know I need as much compression as I can get. My spine clicks as I slowly sit up and bunch together my extra-long compression socks. This technique is supposed to make them easier to put on, but I haven’t noticed much of a difference. It’s a difficult process either way. I yank each sock up to the top of my thigh and let myself fall back onto the bed for a moment.
Fourth alarm. I sit up slowly for the final time. While my body adjusts to being upright, I slip on an undershirt, which I had placed next to my bed the night before, and tighten my abdominal binder over it. The soft shirt protects my skin from the binder, and the binder keeps blood from pooling in the veins in my abdomen so when I eventually stand up, I won’t faint. I eat a few more crackers, slip on my knee brace, and check the time: 6:15. Good. I decide that I can allow myself a few more minutes of adjusting to the world. Sitting on my bed, my socked feet on the ground, I close my eyes and take a few breaths. I assess how my body is feeling and I think again about the day ahead of me.
Growing up, I had lots of reasons to visit my pediatrician. I had developed painful bunions on both feet by the second grade. I got my first professional orthotics, x-rays, and a plan: we’ll wait for your growth plates to close before fixing them. I had a drawer full of braces and ace bandages in my room that I used when I inevitably injured different parts of my body. I had sensitive, soft, thin skin that turned blue in the pool during swimming lessons. I had a high, narrow, crowded palate and as my adult teeth grew in, it was clear that some of them were missing. This puzzled my orthodontist, who referred me to an oral surgeon for implantation of a false tooth. Once puberty hit, I began to faint. I eventually saw a cardiologist, who took one look at the teenaged girl in front of him and diagnosed me with vasovagal syncope. Drink more water and remember to eat breakfast. You’ll grow out of it, most kids do. I didn’t.
When I hit my 20s, I finally had a doctor who said to me “before you stood up to walk, did you think about how far you needed to go? How long you’d need to stand before your vision cleared enough to walk? What you could grab onto along the way if needed?” I nodded along, thinking everyone did these mental calculations all day. “Most people don’t have to think about those things. I can stand up from a chair and walk across the room without any lightheadedness.” My jaw dropped. I realized that all these rules I had for myself, like don’t stretch or yawn while you’re standing or you won’t be able to see, were rules that simply didn’t apply to other people. They were adaptations I had made without thinking twice.
This year, walking has become more difficult, and I was eventually told that the blood flow to my spinal cord is compromised. I began fainting more, despite a water intake of more than 70oz of water daily, 3 meals a day, and a high salt intake. I have repeatedly woken up in the middle of the night with no feeling at all below my elbows. I have sat down on the toilet only to crumple to the ground when I stand because my legs became numb in less than 30 seconds.
To make a long story a little bit shorter, after years of mysterious symptoms, I was diagnosed with a rare genetic disorder called Ehlers Danlos Syndrome (EDS). This impacts the way my body produces the most abundant protein our bodies make: collagen. There are mutations in my DNA which cause my body to produce faulty collagen.
EDS is often called a “connective tissue disorder.” I continue to be surprised, though I shouldn’t be, when I learn that most doctors think EDS only affects a person’s joints. We’re all taught in medical school that collagen is found almost everywhere in the body. There is collagen in the lining of our blood vessels. There is collagen in our skin. There is collagen in our eyes, our teeth, our bones. The tissue separating our brain from our body (the dura mater) is made of collagen. There is collagen in the lining of our GI tract, from mouth to anus. Connective tissue, put simply, is all the tissue that holds us together.
Medical students today are taught that there are 5 types of EDS, but this information is outdated. As of 2017, there are 13 different subtypes of EDS, 12 of which have their own specific mutation(s). (The only type without a clear mutation yet is hEDS, the hypermobile type.) My subtype of EDS results in chronic joint dislocations, and stretchy, fragile skin that bruises easily and takes forever to heal. It also predisposes me to things like mitral valve prolapse, aortic dissection, hollow organ rupture, pelvic organ prolapse, GI dysmotility, migraines, temperature dysregulation/autonomic dysfunction, and postural orthostatic tachycardia syndrome (POTS), among other conditions.
Physical therapy is essential. My physical therapist teaches me how to open jars in the kitchen without subluxing a wrist bone and impinging a nerve in my hand, for example. I’ve learned how to walk intentionally, activating the right muscles to avoid dislocating a hip or knee. I’ve learned how to tape my elbows into place so my ulnar nerves don’t lose their blood flow and my fingers don’t go numb as I type this.
I’ve also learned that my muscles are tense because they’re holding my joints together. They’re compensating. But this means I get tired quickly because I’m using more energy to stay upright than my peers. This knowledge has helped me pace myself, take my time, and treat my body gently, and reassess when my abilities don’t meet my expectations. I can stop and think, are these the same expectations I had for myself when we all thought my body had functioning collagen?
My life changed forever last year. I always knew that my joints were “wonky” (as I liked to describe them) and that I was prone to fainting, especially in the heat. I figured things like this were just quirks of my body—or even things that other people’s bodies probably did, too—so I ignored them.
It turns out, when you ignore something that seems like “no big deal” but is actually causing you harm, it festers. It gets worse, and worse…and there comes a point when you can’t ignore it anymore, even if you don’t have a name for it yet.
It took me years to get a diagnosis. During this time, because I didn’t have a reason, an explanation, a clear cause for my symptoms, I haven’t felt comfortable sharing my story. And now, even though I have a diagnosis, I still feel very uneasy. The stigma around Ehlers Danlos Syndrome is real. A recent study on EDS patients found that almost half of all participants had experienced institutional betrayal in healthcare settings, such as encountering system-wide lack of knowledge about their condition, or being “gaslit”: told that their physical EDS symptoms were not medically possible in the absence of knowledge about EDS. Additionally, over half of the responses in this study referenced feeling depressed, sad, or hopeless about their EDS-related healthcare.
“Institutional betrayal”—a phrase that refers to a harmful action (or lack of action) on the part of a healthcare institution, provider/team, or insurance—is something that every EDS patient experiences. When a patient accesses healthcare, they trust that the healthcare system will act in their best interest. Institutional betrayal is when this trust is violated.
I have experienced, and continue to experience, institutional betrayal. My encounters accessing and providing healthcare have highlighted the truly system-wide, often willful, ignorance of this subset of patients’ needs. I have encountered physicians who have told me that they “don’t believe in Ehlers Danlos Syndrome,” despite genetic confirmation of this diagnosis. Colleagues speak of EDS as though it is a novel disorder, without taking the few seconds to research it and realize how much they don’t know. (EDS was first identified in 1657, though patients with the same constellations of symptoms have been noted as early as 400 BC by Hippocrates. It is not novel.)
Countless providers have stated that there’s no reason to seek a diagnosis, because “if it is EDS, there’s no cure, so what’s the point?” A diagnosis often means access to therapies that can ease pain, lessen symptoms, and make daily life easier to bear. A diagnosis means validation: now that I’ve had a professional say “this is what’s wrong with your body,” I feel a little bit less like it’s all in my head or like I’m losing my mind. Not to mention that there’s no cure for lots of other things—diabetes, epilepsy, asthma—but we still treat these and help our patients manage the symptoms!
But an EDS diagnosis also means mistreatment, misunderstandings, and an incredible dearth of knowledge about your condition. It still means disbelief in the patient’s lived experience of illness. I have learned this through experience as a patient, but also as a student in medical education, receiving advice to “always default to suspicion with patients who claim to have EDS” from colleagues or supervisors who don’t know my medical diagnoses. Bias, lack of knowledge, and unwillingness to learn are institutional betrayals too.
I want so badly to be a scientist about this. I want to know the reasons why I’m having a good day, or why my body is in a flare-up, but this isn’t a realistic expectation for a body with such complex needs. I’ve found that living with a dynamic disability requires an almost-inhuman flexibility and uncertainty. Rarely do I know why I have a migraine one day, or why my joints hurt so badly on certain days. I can make speculations, of course. My joints probably hurt so much today because I was at the hospital for 14 hours yesterday. Or, maybe 75 ounces of water yesterday wasn’t enough, and that’s why I’m so lightheaded this morning. Caring for a body like mine is not an exact science. It’s discombobulating and overwhelming. There’s so much I want to control. And it becomes easy to see oneself through the same lens I’ve witnessed doctors use countless times in exam rooms, as a patient and a student: as anxious, neurotic, nervous, or “too much” just for striving to understand their symptoms and their bodies that are behaving in ways they can’t seem to control.
I can still see my pediatrician rolling her eyes when I came in to see her with yet another vague complaint. It was the annoyance in her voice that led me to avoid seeking the care I needed as I grew, time after time. I learned the hard way that coming into an appointment with a list of problems makes the doctor assume you’re a hypochondriac.
I walked on a grade 3 ankle sprain for months before I got it treated. I know how important it is to get care when I need it, but I lived far away, had no transportation, and knew that I’d be misgendered when I got there. Plus, I was used to pain like this- it wasn’t so bad. My ankle has never been the same since.
I trekked up Arthur’s Seat, an extinct volcano in Edinburgh, with a slipped disc in my back that happened when I shrugged my backpack on. I now have scoliosis and chronic pain in my back from this injury that I simply dismissed for years.
If only I had known sooner, maybe I could have been more careful. Maybe I would have sought out help sooner if I had known I had to be gentler with my body than the average person.
I hear my alarm go off and I roll over. What day is it again? Wednesday. Ugh.
I open my eyes and pain shoots through them. Oh no. Migraine? I move my eyes side to side, up and down, as if I were performing an extraocular muscle exam on myself. My eyes ache as I move them, and the light streaming through my window feels like it pierces my brain. Migraine. I reach for my medication and, without thinking, swing my legs over the side of the bed and sit up. Oh no. My vision goes black and—knowing that I’m at risk of fainting forwards—I let my top half crumple backward onto the bed.
My alarm goes off again as I come to. Shit. How long have I been out? Am I late? I dry swallow the pill still sitting in my palm and scoot sideways on my back to grab my compression gear. I pull it on frantically, eyes still closed in an effort to avoid more pain. Hopefully, this medication kicks in before I need to drive to clinic.
I shake my pounding head to rid it of the voice that’s urging me, be gentle with yourself, as I rush out the door to the hospital. I can’t afford to do that right now, I reply. Late is unprofessional. I can’t be good to my body right now; I need to be a medical student instead.
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About the Author
Emerson Wheeler is an MD-MPH student at the University of Vermont’s Larner College of Medicine and the Accessibility Coordinator for the Medical Student Pride Alliance. In addition to writing about his experiences, Emerson has published photography and art in Wrongdoing Magazine, the winnow, the RROMP, and My Dearest Friends Project. As a multiply-disabled person, Emerson provides advice, training, and workshops to organizations interested in radical access and inclusion. Intersectionality, disability justice, health equity, and interdependence are central to everything Emerson does. Emerson lives in Vermont with his partner and spends days mushroom-hunting with their camera, reading all sorts of books, and playing with their puppy, Pumpernickel.