When you meet a new doctor, you’re allowed only a few sentences to communicate everything about who you are, where you’ve come from, which details of your health history are the important ones, and to convince them that you can in fact be trusted to accurately represent your own health problems. That is, if you can get to a doctor in the first place.
When I injured my sacrum in 2014, I didn’t see a doctor about it until more than a year into its slow healing. I didn’t have health insurance and I was pretty used to powering through health problems so I just dealt with it on my own.
When I learned that my income was low enough that I would qualify for state-funded health care, it took me another whole year to overcome my anxiety about not understanding the healthcare system in order to apply, only to discover that there were no doctors in my city, not a single one, accepting new patients with my insurance. State-insurance cards by default included a spot for the name of the doctor who had been assigned to you. Mine was blank.
I spent another few months overcoming my anxiety again in order to spend hours on the phone asking if anyone knew of a doctor who would still take me.
I found one and was told that her first new patient appointment was three months out but if I wanted, I could come in and wait and see if anyone canceled. It might be up to 4 hours of waiting and I might not be seen at all. The never-ending aching pain in the shape of a crescent on the left side of my lower back would not take four hours of sitting in waiting room chairs. I waited the three-months.
By the time my appointment arrived, I had already done plenty of my own research on the many mystery health issues I was juggling. I told my new doctor that I thought I had Ehler’s Danlos Syndrome, a hypermobility disorder that can affect the connective tissue in your entire body.
I told her about reading a book on EDS and placing 32 sticky notes among the pages, one for each symptom that I recognized in myself. I told her about my sacral injury that didn’t get better despite everyone telling me it would. I told her about manipulating my body and discovering that my feet and ankles collapse when I put weight on them and that my whole legs turn inward when I stand, and when I re-read the book, I saw a picture of someone with feet, ankles, and legs that looked just like mine do. I told her about how my friends make fun of me for the massive quantities of salt I put on my food, and how the book said that the recommended treatment for EDS related cardiovascular problems was increased salt intake. I told her about getting fillings as a teenager and squirming away as they drilled on my very much not numb teeth and reading in the book that people with EDS metabolize lidocaine faster than average and generally consider trips to the dentist as torture. I gave her my laundry list of places that I had pain, starting at the top of my body with ice pick headaches and ending with my feet that burned and stabbed when I stood on them at work for hours.
After listening to my pitch, the doctor had me stand up and poked and prodded me in my hips and legs, occasionally asking, “does this hurt?” I was wearing thick jeans over leggings so I barely felt anything. “Do you run?” she asked. I thought she was joking but when I saw she wasn’t, I just said, “No, I can’t.” She looked confused. She asked if I did this hip stretch like so and I said, “No, I can’t.” I attempted the stretch and showed her my very limited range of motion. She looked even more confused.
With little to no discussion of the source of my pain, she prescribed me a muscle relaxant and started to end the appointment. My heart sank. A muscle relaxant would not stop my joints from being unstable or help my sacrum get better any faster. It might even make me worse.
To her credit, the doctor noticed: “It seems like you’re disappointed. Was there something else you wanted to talk about?” I nodded and told her I had hoped for a more active and solution-seeking approach. I had been symptom managing for months. I wanted to finally get to the bottom of my health problems.
My therapist had warned me that I should prepare myself for push-back on my self-diagnosis. Doctors rarely take kindly to patients diagnosing themselves. I was prepared for disagreement, prepared for less interesting theories, prepared for testing and investigation before confirmation.
What I didn’t expect was dismissal.
At the beginning of the appointment, I had been asked to rate my pain on a scale from 1-10, with 10 being the most pain I could possibly imagine. I had given a 1 for my wrist and a 3 for my hip. My doctor asked me what improvement I was expecting from level 1 pain in my wrist? “You need to have reasonable expectations about your goals here,” she said. “As you get older, your body is not going to work perfectly anymore. It’s never going to work like it did when you were fourteen. Things just… break down over time. That’s just how things are.”
Her words blurred and ran together, doubt flooded my brain and seeped under my eyelids. The pain scale isn’t designed to represent the range of pain levels and different types of pain that are common in a chronic condition, and she hadn’t asked me for the highs and lows of the week, she had asked me my pain level on a low-key low-impact day. Of course my numbers didn’t reflect an ongoing severe problem. My numbers only reflected how I happened to be feeling at that moment in time.
But I was so overwhelmed by self-doubt that none of that clarity came to me. Was my life falling apart from normal amounts of pain that are a natural result of getting older? At 26 years old, was pain in every one of my joints considered normal?
The medical practitioners that know me see me week after week describing the mountains I’m hurdling and almost never see me cry. When I do, they know right away that I’ve been pushed past my limits and that I am Not Okay.
But this doctor didn’t know that. The tears started coming and they wouldn’t stop, my voice breaking and trembling.
Was it normal to experience a crushing sense of loss because I had to stop dancing, to protect my hip alignment, and I was never able to start again? What about the way my hand would seize and contract when I tried to play guitar for even a few minutes, and my inconsolable grief when it hit me that my wrist, just like my sacrum, was not going to get better anytime soon? Was it normal that I had an elaborate schedule –breakfast, hour long pain management routine, sit for 30 minutes, stand up for 15 minutes, sit for 30, stand for 15, repeat until too tired to stand– that I developed so that I could get things done and not end my day at 5pm crying from pain? What about the long hours that I stood at work, my sacrum throbbing, my feet and legs and arms and wrists aching, counting down the minutes and trying not to let the pain show on my face as I used my precious resources to cheerfully ask yet another customer if they wanted a bag today? Was that just a simple side effect of getting older? What about every tiny risk assessment, every conscious muscle engagement, every task that I said no to, every absolutely required self-care to-do added to my daily list, that had been my everyday reality for more than a year?
She tilted her head sympathetically and said, “Have you been feeling depressed?” A passage from an article I read flickered through my brain: on average, women have to report significantly higher pain levels than men do before they are prescribed pain medication, and that instead, women were more likely to have their pain categorized as a mental illness. I remembered this briefly before saying, “I do have a history with episodes of depression but I have not been feeling like I am in one, no.”
The doctor proceeded to write me a prescription for an anti-depressant that she said also can help with pain. I blinked, confused. Hadn’t I just said that I wasn’t experiencing depression? I protested weakly that this didn’t make sense but she said, “You want to be active and try something? Well, let’s try something. Let’s try this!”
Tears were still falling down my face but I nodded, my brain still filled with white noise as she walked out of the room. Did she believe me that I was in pain? Did she hear the ways it was impairing my daily function? Is it reasonable to expect this level of physical difficulty at age 26? Did she listen to me at all?
I shakily walked out of the exam room, down the hall, and ducked into the bathroom. I put my face in my hands and cried silently, trying desperately to get a grip on myself. But I couldn’t. I was broken into a million tiny shards and there were too many to pick up in 10 minutes. I washed my face as best as I could and headed to the receptionist to make another appointment. Their earliest slot was in five weeks.
They asked me to fill out a feedback form about how well they had helped me today. I declined.
I cried as I walked to the bus stop. I cried as I bussed home. I cried as I walked up the stairs to my apartment and I cried as I walked in the door. This low-level crying was all I could do to keep from collapsing into uncontrollable sobs. Only when I reached my boyfriend’s arms did I let it all out. I told him everything and then I called several of my best friends and I told them the story again. I didn’t really stop crying for several hours, hoping each re-tellings would relieve the sensation that the foundation of my Self had cracked. At some point, I vaguely realized that the appointment had been traumatic and that I now had a new trauma to heal from on top of my already longer than average list.
In the weeks that followed, I learned that my friends with chronic illness, chronic pain and disabilities have all been traumatized by doctors visits; practitioners doubting them, assuming mental illness and sending them to psychotherapists, ignoring their files and giving them medication they were allergic to, delaying crucial treatments due to incorrect diagnoses, invasive procedures without consent, over and over and over again. They had long lists of experiences like mine. This was just my first one.
This article was originally published on yoppvoice.com as “26” on March 25th, 2017.
KELLA HANNA-WAYNE(Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.