I am updating and republishing some of my early articles from this blog. Please enjoy this article that was originally published as “26” in March, 2017, and has been cross-posted on medium, about the early attempts to diagnose the cause of my chronic pain and other symptoms, and the many ways my access to medical treatment was blocked for years prior.
CN: detailed discussion of chronic pain, PTSD, doctor neglect, and ableism; mention of emesis.
When you meet a new doctor, you’re allowed just a few sentences to communicate everything about who you are, where you’ve come from, and which details of your health history are the important ones. In such a limited format, it’s hard for me to convey to a new doctor how long I spent looking out for myself with no close relationship to a primary practitioner. I feel the urge to present them with a highly organized spreadsheet detailing the emotional variables, inefficient medical system, and complexity of life events that kept me from coming to them sooner.
- Despite being sick frequently as a child, I developed the habit of hiding any signs of illness and I simply did not know how to ask for help when I needed it. I once ended up in the emergency room peeing blood and vomiting every few minutes because I hadn’t told anyone about my UTI.
- Before the ACA was enacted, I went several years without health insurance when I was not in contact with my parents and my part-time job barely brought in enough money to pay my bills. I prayed daily that no cars would run me over as I walked to work, and I suffered through swine flu at home on my own.
- I later reconnected with my parents and once again had insurance, but the insurance company told them they had to take me off their plan a year before the ACA did. Instead, I was placed on my own plan with a deductible so high that I’d have to use up 3-months of pay to afford it.
- Someone told me that my income was low enough that I would qualify for government-funded health care. I spent a year overcoming 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 that insurance.
- 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.
- My year-old sacral injury–the never ending aching pain in the shape of a crescent, on the left side of my lower back– would not take 4 hours of sitting in waiting room chairs.
- By the time my appointment arrived, I had already done plenty of my own research on my various health issues and felt like I had a lead on some answers.
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 in 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 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 where I had pain, starting at the top of my body with ice pick headaches and ending with my feet where the pain burned and stabbed when I stood on them for hours.
The doctor had me stand up and poked and prodded me in various places in my hips and legs, occasionally asking, “Does this hurt?” I was wearing jeans, so I barely felt anything. She asked, “Do you run?” I almost laughed out loud, but instead, I 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.
She concluded that she’d prescribe me a muscle relaxant and started to end the appointment. My initial optimism wilted. A muscle relaxant would not stop my joints from being unstable or help my sacrum get better any faster. In fact, from my limited knowledge on the subject, I was fairly certain it would make me worse.
To her credit, the doctor noticed I was unhappy with the conclusion. “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.
But doctors rarely take kindly to patients diagnosing themselves. My therapist had warned me that I should prepare myself for push-back on my self-diagnosis. I was prepared for disagreement, prepared for other 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. 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. It’s much more useful as a tool to determine whether there’s an emergency at hand or not. I was asked for current numbers, which were representative of a non-active, non-demanding day just half an hour after my pain management routine. In other words, they were when my pain was at its lowest. I gave a 1 for my wrist and a 3 for my hip.
The pain scale is also subjective, based on the specific person’s experience with pain. For reference, I came up with my numbers based on the fact that the highest pain I had experienced was an 8 when I fell and got what was probably a hairline fracture in my ankle. That pain was severe enough that I couldn’t do anything but wish that it would stop, but it was hardly the worst pain I could imagine.
The doctor pointed to the pain scale numbers I had given her, 1 and a 3. To her, these numbers did not translate to the pain I was experiencing in daily life. The 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. 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? Was it normal that my year-old injury wasn’t getting better?
What about the loss in my heart when I had to stop dancing, to protect my hip alignment, and I was never able to start again? What about the way my hand seizes and contracts when I try to play guitar for even a few minutes, and the way I cried inconsolably for an hour when it hit me that my wrist, just like my sacrum, was not going to get better anytime soon? What about my 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 had 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? 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?
I was new to this doctor, but the medical practitioners that know me, see me week after week describing the mountains I’m hurdling and almost never see me cry. It’s not that I think I shouldn’t. It’s just that normally I save my tears for when I’m alone or when I’m with someone whose role is to offer me emotional support. When I’m at the physical therapist’s office, I’m focused on getting treatment for my body. When I do cry at those appointments, the people on my team know immediately that I’ve been pushed past my limits and that I am Not Okay.
But this doctor didn’t know that. I burst into tears. I poured my heart out about how difficult my life was and how hard it was to do everything. She tilted her head sympathetically and said, “Have you been feeling depressed?” It flickered through my brain that I had read some statistics somewhere on how doctors would prescribe pain medication to men and women differently, that women had to report vastly higher pain levels than men did before given pain medication, and that women were more likely to be diagnosed with mental illness than men were, because of the cultural narrative of “the hysterical woman.” 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 buzzing 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 on the help I had received that day. I declined.
Despite my best efforts, I could not stop myself from crying. 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 walked inside. Only then did I let it all out. I told the story to my boyfriend and called several of my best friends. I didn’t really stop crying for several hours, with many re-tellings to multiple people. 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.
9. I found out 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 treatment 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.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter.
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