CN: Explicit descriptions and in depth discussion of chronic pain, abuse, medical neglect, gaslighting, and oppression through poverty. Discussion of sexual assault, trauma, mental and illness. Mention of genitals.
There is a disconnect between the experience of a patient and the experience of a medical professional, one that worsens if the patient’s illness is chronic or not easily explained. As more and more stories of medical neglect as a result of marginalization are brought to light, I hope that we can collectively reduce that disconnect and bring understanding and accommodation of marginalized backgrounds into our medical system, rather than using the medical system to further enforce their oppression. Maya Strong’s guest post today is one of those stories.
In September of 2017, I learned the true meaning of chronic pain. From the moment I woke up to the moment I fell into half-sleep, a twisting, burning ache spread through me like fire.
When it began, I thought I was either coming down with a virus or depressed. I was achy, exhausted, run down. It was a logical time to be physically ill; I ate some questionable Chinese food a couple of days before symptoms set in. It was a logical time to be mentally unwell; I was unemployed, heading out of an abusive relationship and nervously entering a new one with someone I met online. Stress weighed heavy on my shoulders. There were trauma anniversaries sprinkled throughout autumn. In short, feeling under the weather was not unexpected at the time.
Fall passed, then winter and then spring. The chronic burning through my muscles, skin, and bones still didn’t let up. Time blurred– all that existed was me and an unending ache. I knew this was out of the norm. One day, in the spring of 2018, the pain peaked. I could barely peel myself out of bed. I couldn’t think straight as every inch of my body screamed.
I woke up in my then-boyfriend’s bed after staying the night. Our meeting online had developed into a fast-tracked official relationship riddled with rose-colored flags. It was past noon, and I had yet to walk the several long strides from the bed to the bathroom. A burning racked my body from head to toe. He had shifted from the bed to the couch and planted himself in front of the TV, plowing through rounds of some violent video games that I couldn’t quite make out.
When the games lost his attention, it wandered to my body. He swept his eyes from my feet to my breasts, narrowing them as they met my scrunched face.
“What’s the matter with you? It’s time to get up and start your day. I let you be lazy for a little bit, but you can’t be in bed all day.” He turned his eyes to his phone.
“Something is seriously wrong,” I exhaled through gritted teeth.
“What do you want me to do about it?” He didn’t bother to lift his eyes from the screen.
“I think I need to go to the hospital,” I murmured. Several months into our relationship and I was already used to treading on eggshells. He had a short fuse and a tall temper.
My then-boyfriend rolled his eyes. “It can’t be that bad.”
“I’ve never experienced pain like this.” I glued my gaze to his face, measured his response.
He sighed. “Hurry up, let’s go.” He snatched his keys off the counter. I winced. Something about his rough grasp on the keys reminded me of that time he grabbed my wrist a week before.
When we arrived at the emergency room, they asked me why I was there. I explained that I was in excruciating pain. They asked me to rate my pain from 1-10. I rated it a 9 because I didn’t want to seem dramatic. They asked where I hurt. “Everywhere, all the time.” I answered. The nurse raised a dubious brow.
“Really…” She pursed her lips.
I nodded. “It’s been like this for months, at least. I’ve tried Ibuprofen, Tylenol, the works. Nothing helps.”
I couldn’t read her expression. Something told me she still didn’t believe me.
She lead me back to an exam room, tossed a gown on the bed and instructed me to strip down to my underwear before donning the hospital gown. I slipped the gown over my head. After a few minutes, there was a knock at the wall.
Another nurse entered the room and asked similar questions as the first. She, too, expressed doubt that my whole body could hurt all the time. I assured her that I was always in pain everywhere and just learned to manage through it. I had to.
When the on-call physician came in to examine me, he dismissed the level of pain I was in. I was calm, poised, able to answer his questions. I wasn’t crying or twisting my face. Sustained childhood trauma taught me to dissociate from difficult situations. I was separating myself from my body and its discomfort, but the doctor read it as indifference.
“What’s your number for pain?” He asked.
“A 9,” I answered. I wanted to be brave and I knew that people had been through worse pain than this. It wasn’t as if I was having a heart attack or giving birth. Pain is always relative to someone else’s, isn’t it? That was my line of thinking.
“You certainly don’t act like you’re in that much pain. We normally get guys up in here who are crying when it gets up to a seven or an eight.” He frowned and watched my eyes.
“I’ve been dealing with this for so long that I don’t even react anymore. But I assure you, I am in a lot of pain.”
“I believe you, sweetie.” His cocked brow indicated otherwise.
Though he acted sympathetically, he assured me that it was probably just stress-related (read: all in my head). Still, the doctor ordered routine tests on my blood and urine to check for abnormalities. When the tests came back normal, he sent me away with an air that I had taken advantage of his limited time. His best guess was that my anxiety caused my muscles to tense. A modern-day poor man’s diagnosis of “weak nerves.”
I walked out of the ER without any direction other than “try to relax.” As if I hadn’t already tried that.
Many trips to my primary care physician, urgent care, and the emergency room followed over the next year. Trips to the ER were particularly fruitless. At one point, the doctor didn’t examine me. She simply spoke with me for an obligatory minute and sent me away with a pamphlet on “anxiety coping skills.”
I have a history of PTSD, anxiety, and depression. As a mental health patient, my physical concerns were dubbed figments of my imagination, facets of my mental health afflictions. As a mental health patient, I was seen as a nuisance, potentially drug-seeking. I couldn’t fall physically ill if I was mentally ill, according to their logic.
With each visit, I grew less confident in myself. I relied on doctors to confirm my intuition that something was wrong. I put my health into their hands as I should be able to do. I didn’t have medical training or a doctorate--I went to the doctor because they had that education and experience. Initially, I believed that medical professionals were there to help me. ER doctors, physician’s assistants, nurse practitioners, and my primary care physician all confirmed that something was wrong. But they pointed me in the direction of a mental health problem rather than a physical health issue and refused to test their theory by ruling out physical roots. This was the kicker.
I was such a “Frequent Flyer” in my local emergency room that the same song and dance became our routine: I arrived in the ER complaining of unbearable pain, the physician on call would see me an hour or two after I checked in, he or she would shove pamphlets on anxiety into my lap, check my vital signs, and send me on my way. Though I explained that over-the-counter pain medication did not help and turned down any pain medications because of the side effects, they treated me as if I was just trying to score pills or waste their time.
Seeing that the doctors saw me as an inconvenience, I tried to work on my rapport as a good patient. Good patients aren’t supposed to question or doubt or get a second opinion. Good patients aren’t supposed to Google their symptoms to see what others’ experiences are. Good patients aren’t supposed to suggest testing or request referrals when their doctor seems at a loss for planning the next step. Good patients are supposed to take the doctor’s orders (even if they are unhelpful), accept the diagnosis (even if it doesn’t seem quite accurate), and move on. Those who complain about ineffective treatment, incomplete diagnoses, and stay stuck on the same health issue are hypochondriacs at best and manipulators at worst.
As no one wanted to legitimize my hurt, I began questioning its legitimacy myself. Maybe I am just making it up, I thought. It was easier to accept denial. If my mind was causing the pain, changing my thoughts could stop it. I tried to ignore the endless aches, but a sharp jab to my back or gnawing in my legs would shock me out of my denial.
Though a mental shift didn’t relieve me, I pretended it did anyway. I numbed myself emotionally to the pain I irrefutably experienced physically. I had no other choice than to muscle through and cope. An end for the pain was nowhere in sight. While it was difficult to power through working on my feet all day and upholding a life outside of that, I knew I would drive myself to the brink if I didn’t learn to live with the pain.
In one sense, I gave up hope for anything better. In another, I held onto hope that I could create a meaningful existence in the midst of ceaseless suffering. I’m not sure that I would call that acceptance, but it was something like it. I would simply learn to live with it if doctors refused to treat it.
This was no way to exist, but what other options did I have?
Eventually, my PCP diagnosed me with fibromyalgia. None of the medical professionals who treated me ran any medical tests to rule out other possibilities; there were no screenings or questionnaires. My physician also didn’t bother to check whether my pain matched the pressure points that fibromyalgia typically affects. The doctor who gave me this label listened to my symptoms for five minutes and then made a decision on my diagnosis.
I was prescribed an antidepressant even though my depression was situational. While she explained that SSRIs are used to treat depression and fibromyalgia, it was clear which disorder she believed to be the source of my suffering. When I got home, I researched fibromyalgia online. My pain didn’t seem triggered by the pressure point sensitivities that characterize fibromyalgia. It engulfed me from the crown of my head to the tips of my toes. I again felt dismissed, unheard, and gaslit. I was grateful that she wasn’t pushing the idea that I simply had a bad case of stress, but fibromyalgia didn’t seem to hit my issues on the nose either.
SSRI’s added migraines to my daily aches. My doctor assured me that this side effect was a symptom of my depression. The message was clear: My suffering must be strictly psychological. This disappointed me. If she delved deeper, I was sure that she would find a better way to help me than pills that created more problems than solutions.
I tapered off the medication when tremors emerged as another impact of my medicine. It seemed that I was only believed when my problems were visible. If they were invisible, they were too subjective to take seriously. I couldn’t be trusted to know my own body.
Over the months that I experienced constant pain, I still had bills to pay. In March of 2018, I found one job, a part-time retail job that paid minimum wage and offered minimal hours. In April, I added a second retail day job with low hours and low wages. By the end of the month, I tacked on a third overnight food service job to make ends meet. When these workplaces realized that I was a hard worker and a good worker, they upped my hours. By July, I was pulling 70-90 hour weeks.
During this time, the most basic self-care fell to the wayside. I wasn’t sleeping or eating. I was on my feet at all hours of the day and night. I wore myself into the ground.
Doctors offered a sympathetic half-smile and a “you must be stressed with all that work.” They didn’t inform me that I was slowly killing myself–even when my heart rate and blood pressure at the time demonstrated that my workload was taking a dangerous toll.
I only later found out the damage it wrought on my heart and my body as a whole. Over-exerting myself and under-eating put a strain on my muscles and bones. Lack of sleep meant a lack of time for my body to repair itself and prepare for the next day. I developed flu-like symptoms frequently because of stress-sickness. Yes, the stress caused the illness. But the symptoms were my body’s way of saying “slow down, stop.”
I was so burnt out that I lost the ability to read those signals. I couldn’t understand that pain was an alarm that my brain set off in my body to alert me that I was running myself into oblivion. I wish that my treatment team would have translated my body’s promptings for me when I was too exhausted to acknowledge them.
With the mountain of responsibilities and activities piled onto my plate, “just relaxing” would not suffice. In order to reduce my pain level, I needed to start taking care of myself and paring down my commitments. Doctor’s orders hold weight. If the doctor ordered dropping hours at work, eating, and sleeping, I would have heeded that. It would have helped way more than the anxiety pamphlets’ instructions to deep breathe or exercise more frequently.
My romantic relationship turned violent. When I wasn’t on the clock, I was subjected to hours of verbal berating and draining emotional rollercoasters. My now-ex would sexually assault me before work and drop me off directly after so that I had no chance to report him. My life was a never-ending cycle of work, abuse, work. Rinse, repeat.
Doctors didn’t question how healthy my relationship was. In the emergency room, they didn’t see the warning signs of my boyfriend standing over me, speaking for me, leaving me stranded at the emergency room without a ride home. I saw a gynecologist when the chronic pain spread to my vulva. During the appointment, I tried to express to her that my relationship was unhealthy and that my then-boyfriend was “having non-consensual sex with me,” as I put it.
She didn’t examine me for physical illness or injury. Due to my history of trauma, she suggested that I see a sex therapist with my boyfriend to work through the “psychologically-based pain.” She also recommended that I try to talk to a therapist about the lack of consent in sex. Basically, she didn’t want to deal with it. I felt my desperate cry for help was unheard and unheeded. At that point, my self-esteem was in shambles; I was used to this. Looking back, I know these medical professionals could have–and should have–done better to recognize the signs of domestic violence and offered resources.
My experience is not unique. I know I am not the only woman whose pain is waved away as a psychological problem. I have met other women with their own stories to tell: spending decades in pain while their doctors reduce them to hypochondriacs; walking into an emergency room with blatant bruising from their partner and flat-out refusal for help from doctors. I’m not writing this essay just to raise awareness; I write to demand change for the better in the healthcare system. We deserve for doctors to listen to where we believe the pain is coming from and search for answers when the source is unclear.
My chronic pain changed when my situation shifted. At the end of that summer, I broke up with that abusive man. I whittled my massive workload to one job with daytime hours. The intensity and frequency of pain decreased as time passed. Now, I work from home, which keeps me from straining my body. I also have a healthy relationship with a partner who lifts me up, listens to my trials and triumphs, and touches me with the intention to communicate their love instead of hate. My mental health has improved with my circumstances. No pill could have resolved it.
The combination of reducing my stress level, taking care of myself, and filling my life with healthy relationships has kicked chronic pain out of the picture. I can’t remember the last day that I laid in bed for 16 hours because I was hurting too much to even shower or fix myself a meal.
I realize now that my pain was most likely a product of burnout and a physical manifestation of my emotional hurt. I was in an abusive relationship and abusing myself on top of that. I wasn’t meeting my basic needs. The physical pain that I experienced was my body/brain’s last-ditch effort to get me to eat, sleep, carve out work-life balance, and ditch the chronically chaotic relationship.
Even if it wasn’t the result of a physical injury or empirical imbalance in my biology, my pain was real. It deserved to be treated with compassion, individualized care instead of a one-size-fits-all lecture on the effects of stress and need for relaxation. Had they asked whether I felt heard, respected, loved, or, most of all, safe, in my relationship, I would have answered honestly on just how unhealthy and unsafe it was. Had they asked questions regarding whether my workload allowed for time to sleep, eat, shower daily, or take a moment to myself, I would have offered a resounding “no!” The root of my pain was hiding in plain sight, all they had to do was look and listen.
Sometimes, a patient walks into a provider’s office with a physical complaint. That very same patient may also walk into a provider’s office with a concern about her violent boyfriend with nowhere else to turn, nowhere else to ask if this relationship is healthy. If the goal of a doctor is to tend to a patient’s health and wellbeing, they need to extend beyond the body and into the internal and external environment. A smoker won’t quit smoking just because he is presented with the news that he is headed towards a heart attack in the near future. He needs support to reduce stressors that trigger him to smoke and coping skills to replace the self-medicating technique that he just lost. The source of chronic illness symptoms isn’t confined to one’s physicality. Humans are holistic beings--our medical treatment should reflect that.
I understand that medical doctors can only treat medical symptoms; they may not be able to treat financial, emotional, social, or environmental difficulties. But mental, emotional, social, and physical illnesses are all illnesses–there’s no hierarchy. This larger societal attitude towards mental, emotional, and situational illness vs. physical illness needs to change, and it starts with one healthcare provider at a time. Healthcare providers can help patients by being informed on local resources and programs that assist those in need to meet their basic needs of housing, clothing, food, and toiletries, providing referrals to blended case management if needed.
Socioeconomic status is a factor providers should consider when prescribing any treatment, including stress management. If a patient cannot reasonably afford to incorporate a doctor’s suggestions, she won’t, which will keep the same cycle of health problems going and turn the doctor’s office into a revolving door.
Patients in poverty find ourselves in a tough position. Stress causes a multitude of health issues and we know it. We also know the daunting reality of living paycheck to paycheck with the threat of losing everything looming over our heads.
The medical professionals who prescribe “stress management,” “relaxation,” or “getting out and having fun more often” are coming from a whole different world. They can clock out and prop their feet up in their nice homes that they own while debating whether they want to eat out or cook a meal at home with wholesome ingredients. Their impoverished patients may rush out of the office to their second jobs, then arrive at their moldy, dusty apartment that reeks of their neighbor’s cigarette smoke, and eat their first meal of the day, a pack of ramen. It’s a broad generalization, but I don’t think it rings entirely untrue.
The doctors’ prescription to “rest and relax,” was out of reach for me during the year that my chronic pain was truly chronic. Relaxation is a luxury--one that I, along with many others in poverty, couldn’t afford. At one point, I had to work 70 hours a week to support myself. Unemployment created a debt that I had to pay off quickly. My lease was ending soon and I needed to afford the first month’s rent, security deposit, and fees of a new place on top of back-rent. Minimum-wage meant that I had to work maximum hours in order to keep myself afloat. On top of financial struggles, my relationship was taking an emotional and physical toll that I could not address because I was so deeply entrenched in it. An outside perspective on all of these things would have pushed me to make changes more than a reductive, generalized “lower your stress level” or “cope with your anxiety.”
When medical providers understand their own limits and have an understanding of the limits of their patients, healthcare becomes effective. This also builds trust between marginalized patients and their providers, which makes patients want to seek out preventative care before they are forced to receive treatment that effectively minimizes the damage that has already been done.
Even if my stress was causing my chronic pain according to providers’ observations, it would have been more helpful to know that they may not be able to help me until my circumstances changed. I held onto hope that a trip to the ER upon an increase in my level of pain would fix me. ER physicians who saw me in the past were especially bothered by my repeated visits. They would ask why I kept coming in for the same exact problem. While the warning signs seem impossible to ignore now, I was unaware that this kind of suffering is typical for someone working on their feet for up to 20 hours a day, only to come home to emotional chaos. This insight would have allowed me to make adjustments to my situation. Communication could have curbed frustration on both ends.
If medical professionals understood how dire my circumstances were, they may have referred me to domestic violence resources, hospital social workers, or local organizations that assist folks in financial binds. What it all boils down to is the importance of listening to patients and filling gaps in one’s expertise as a provider with resources that are specifically trained to identify the kind of assistance an individual needs.
If any of my former physicians read this, I hope that you listen, I hope you take it to heart. I hope you put it into your practice. I hope the next woman who walks into your exam room and complains of pain gets a thorough examination of her body, mind, and circumstances.
Pain doesn’t always have a clear root. Whether you are a doctor or a patient, a man or a woman or something in between, I know you are human. I know you have experienced pain. Surely you recognize that the simple sentence “I hurt” says more than two words could ever explain. In the case of those of us who have been through chronic pain, depression, or abuse, it's more than one word can cover. Remember that.
About the guest blogger: Maya Strong is a small town social justice advocate who tackles difficult subjects by sharing her personal experience. They use their writing to add a human voice to hot button issues such as LGBTQ+ Rights, Rape Culture, Intersectional Feminism, and Mental Health/Chronic Illness Awareness. Maya's words mostly find a home on Medium at medium.com/@mayastrong.