The Toll of Middle Healthcare
content warning: ableism, mental illness, sexism, racism, transphobia, suicidal thoughts, gaslighting
I have spent a lot of time in middle healthcare. It's a term I use for folks who are sick but not sick enough. As a middling the medical structure generally acknowledges the adverse impact on your life caused by some bodily condition but providing treatment isn't considered pressing.[1] For the most part the onus is on you to therefore become better at coping with it. It's deemed implicitly manageable. Often you're not asked nearly enough questions and other times you're repeatedly asked questions where if the answer is no then your complaint is delegitimised. This reinforces your position in middle healthcare. Yet at the same time, the presumption is that medicine will eventually lead you to the pot of gold that is a diagnosis (and thus cure). It's supposedly at the end of this oddly coloured rainbow of sickness as long as you take the right tests or look in the right place.
As a society we don't want to hear about healthcare from the patient's perspective. They have no "authority" and don't have the "scientific" background to make judgements about overarching health or healthcare. They also haven't committed any time to understanding the minutiae or complexities of the vast range of specialisations. If the patient's ailment is serious enough it will eventually present itself as such and will then be handled in the upper healthcare tier, meaning emergency. I'm certainly not the first person to observe the flaws of this approach nor am I under any misconceptions about the merits of triaging or how strained the system is.
But when I say I've spent a lot of time in middle healthcare, let me be abundantly clear - I am talking years. Over a decade. Over half my life. I have cried, writhed, ejected, and experimented for over half of my life because of my body and the environment it inhabits. Of course I want to believe that the pot of gold is attainable, of course I want to hope that there is a cure that will demonstrably alleviate my symptoms; but it is exactly because we are so invested in the mythology of medicine that this is so incredibly damaging for middlings.
It's March of 2021 and this year I have already been admitted to the ER, been to 4 specialists, been to over 10 healthcare appointments, given over 15 vials of blood, and been handballed to a further 2 specialists. All of which are related to the issues that arose when I was a teenager. And this is a pared back schedule compared to prior years. I have finally begun recognising the toll that chasing the pot of gold is taking. For example, it was definitely the right choice to cancel the scheduled follow-up with a specialist doctor whose solution to my chronic pain was to be less fat and less depressed. All this doesn't even begin to take into consideration the many long waits and loopholes that need to be jumped through just to get these appointments.
If I'm really sick–our internalised monologue will say–then these are necessary undertakings. If the appointments and tests by healthcare professionals imply there must be an answer, then taking them is the road to a solution or to reprieve. Unless, of course, it isn't. Unless it's more tests and more specialists and more side effects from drugs. Unless it's over 15 years since you first began having symptoms and you're no closer to a viable treatment. Don't they then go from being a necessary evil to an intentional cruelty, a fool's errand verging eerily close to the domain of gaslighting? How many times can someone present the opposite reality to the one I know I am experiencing before I denounce it? Because this is the reality I can finally affirm: my pain is real, the impact of it is pronounced, there is limited treatment, and probably no cure. This is antithetical to the reality the institution of healthcare presents. Instead of aiding me, it compounds my pain in deep and sometimes unrecognisable ways.
This is a lonely place for the sick person. It is fundamentally tied to the disparity in power that is partly based on our collective veneration of healthcare as "scientific" and thus "objective." As a patient, I am powerless in the doctor's rooms, in the hospital, in the testing facilities, under nurses, when in consultation with specialists. I have no way of knowing if the information I am being given is correct, no way of confirming how procedures are being done, no way of actioning any discomforts I am enduring. I am at the mercy of the practitioner. And often they are quick to remind me of this and invoke practices that reinforce it.
You might think this sounds hyperbolic but this is where the refrain of gaslighting echoes. Because of course there are gradations to it, ranging from uneasiness to outright violation. Sometimes it's just a gnawing gut reaction that you can't place until it happens again and then again. This is how it becomes like an abusive relationship. You see the red flags but you don't want to believe that they're real. Healthcare workers are heroes, they save lives, and come to your aid in the most violent of times your body can endure. They're often overworked and underpaid, as well as putting their mental and physical health at risk for others. But just as not all relationships are abusive, not all health workers are good. Even if their intentions are, the current structure of the system makes it particularly hard to be so. It's indivisibility from capitalism has ensured this. The medical industrial complex thrives because of a conflict in interest that will always place profit above people.
My trip to the ER this year was a circuit breaker. For the first time I felt like I could recognise the red flags for what they were and be honest with myself about what I was undergoing. I had been unable to eat or drink properly for over 3 weeks. I didn't and still don't know why. Perhaps as a side effect of stopping a medication? But not even the severest of medicinal warnings in the information packet hinted at this. If I did manage to eat I had searing abdominal pain that at one point caused me to come close to blacking out. I was enduring this while both vomiting and going to the toilet. It wasn't subsiding and none of the over the counter drugs were helping.
I self-presented at the hospital knowing that I had started hovering above the middle healthcare bracket and was wading into a territory where my sickness presented in a way that would warrant attention. I waited many hours (after being admitted) to be given pain relief despite the doctor seeing me and prescribing it fairly quickly. The nurses had forgotten me after initial investigation suggested I wasn't in any immediate danger. My partner diligently reminded the doctor, the doctor said he reminded the nurses multiple times. And this is how you quickly become completely dispossessed of agency or power, probably in this case to no real fault of anyone in particular.
I am exceptionally lucky to have not spent a lot of time in hospitals. But what time I have spent there reminds me how little I know about the inner workings of them. And I think that's pretty normal if you don't work in healthcare. Even different hospitals of equivalent status (e.g. both public) work in different ways. Having this knowledge shouldn't be a prerequisite for receiving high quality care but it often feels like it is. If those whose care you are given into don't explain what's happening to you, you have no idea what is going on. Even if they do attempt to explain you often still don't understand. What is terrifying is that if you are in a hospital it is very likely you are not the most cognisant or aware version of yourself. Something is wrong, you are potentially in pain, and it is very difficult to be present and engaged. Decision making and articulation are not the priority of a body in distress.
At one point during the height of Covid in Australia, I had sepsis and had to be admitted to the hospital alone. As I struggled with the effects of infection, I tried to give accurate responses while in the throes of delirium and grief. Amusingly, even after several painful tests, I was so overwhelmed that I sincerely thanked the nurse for my Covid swab which was still quite invasive at the time. After which she lightly laughed and I promptly declared "I wasn't sure why I was thanking her" and we shared a moment of humour at my gratitude for an uncomfortable jab into the recesses of my nose. One often doesn't have the luxury of 'being on' if they find themselves in hospital.
Eventually I received the pain medication I had waited so long for during the ER visit of this year, but only after a shift swap of nurses. The hours had accumulated and while the doctor discussed my case with overseeing practitioners, what was causing my distress became apparently more allusive. As I lay waiting for a judgement a staff member in the hallway asked if Room 206 was okay. The reply was a distant but clear "Yeah… but no".
I was Room 206.
I was transferred from the ER and admitted to hospital overnight without further clarification on my issues. They wanted to keep me under observation and finish an IV course. In the morning a gastroenterologist would see me. As my partner set me up for the night the codeine had began working. In front of the bed there was a large painting of a pastoral windmill scene directly and I began nattering about Don Quixote's escapades of tilting at windmills. The story of Don Quixote, much like the rigmarole of my health, was farcical and the only sane response was to laugh. Don Quixote and I were alike and the codeine heightened the hilarity of it to me.
Picture in hospital room - Tegan Edwards 2021
Believing himself to be a knight destined to save the world, when Don Quixote comes upon a field of windmills he envisions that they are giants he must battle. The concept of tilting at windmills has become synonymous with an exercise in futility.
My partner left and I attempted to sleep. This proved impossible, not least of which because a gastroenterologist came to see me in the early hours of the morning. It was roughly 2am and I had been in the hospital since before the sun went down. She asked me the same questions I had been asked multiple times already. I was confused by why she had come now and I wished my partner had been there to confidently answer questions I was unsure of. Maybe if I said the wrong thing she would completely dismiss me? I was afraid of being sent home only to experience the same pain. I didn't understand why there had been no handover of information from the ER to the department to her. I didn't fully understand what tests I'd undergone or the results. I wasn't made aware of the decision making process that had lead to my being admitted but some of the questions she asked sought information of this kind.
I have multiple chronic illnesses. All of which are poorly understood, deemed incurable, and often condescendingly snubbed by medicine. They are also very likely all connected in one way or another. This makes pinpointing cause and treatment very difficult. What may work for one ailment might flare another. This doesn't take into account the fact that every single one of them appears at higher rates for women than men. Unsurprisingly, women experience higher rates overall of chronic pain than men.[2] That healthcare and medicine has a deeply entrenched history of sexism which has determined who and what is researched–and who and what is treated–is still having devastating consequences today.
So when a specialist walks in to meet me for the first time, they may have years of medical experience but I have years of personal experience with multiple chronic diseases. Spending 5 minutes with me to ask a set of standard questions is not going to give you a realistic insight into the layered workings of my body pain. But I have come to expect this. Each time I lay out the repetitious trauma that plays out within and upon me on a day to day basis it is exhausting. Yet I am still sympathetic to why this is necessary within the frameworks we currently have.
What I do not expect is to have my vulnerability leveraged against me. When the gastroenterologist entered my room the codeine was wearing off and not only was I in pain and exhausted, I had been told to fast for a possible test in the morning. I had not eaten or drank anything at all for a considerable time. Not to mention the accumulative weakness brought on by the previous several weeks. But I answered her questions. I was upset by the lack of my partner's presence not only because I was alone but because I had to try to advocate for myself in my current state. I needed to try and put some of the many pieces together before handing them over, knowing that if I did not then it was unlikely I would receive help. I had to work to get the assistance I needed when I could barely sit up.
I cannot tell you how disappointing it was to have her turn to me and declare that I did not have the chronic illness of IBS because my GP could not have diagnosed me without performing a colonoscopy. Even now I wonder if this really happened despite categorically knowing that it did. A specialist trained specifically in the digestive system abrasively dismissed me with patently false information.[3] It wasn't that there was no assistance, it was that I was being told by the person who is supposedly trained in this field that denying a diagnosis was more important to them than finding treatment options.
I felt so angry, alone, and betrayed. These floating adjectives do not come close to the true impact. I tried to sleep but the nurses checked on me every hour and as I waded into that in-between world of night and day I became acutely aware of how trapped I was. Confused by the constant shifting from asleep to awake, with the spectre of dreams colliding with what was actually happening in the room, hypotheticals began crashing in on me. Anyone could enter my room, do essentially anything, and there was no way I could control it. I was frightened by the long history of mistreatment of the sick and mentally ill. All those hysterical women who were given forced treatment and silenced for 'their own good.' The rolling sense of fear couldn't be diminished by rationalising. Those women are not so far from me. Those women are me. I am those women. What were supposed to be hypotheticals felt uncannily near. I knew that there was no reason they should happen but what resounded was the fact that they could. They should never have happened to the women before me either.
So I invoked a survival tactic that many sick people will be familiar with: just hold on. Day would come, my partner would return. I had to hold on. I have survived half my life in this way. Every time I was doubted, every time pain seared through my body, every time the unanswerable and untreatable became too much of a burden, every time I didn't want to be alive anymore. My only option is to wait it out and hold on. So I lay in front of that windmill painting and anchored myself to it. The humour was gone and the connection to Don Quixote had become much deeper. Utterly mad, derided by the world, forgotten and betrayed, dismissed and disbelieved, we were not as far apart as the 400 years would suggest. For, as Cervantes says,
"When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams - this may be madness. Too much sanity may be madness - and maddest of all: to see life as it is, and not as it should be!" [4]
As a chronically ill person I cannot help but see how our cultural perception of health is a kind of madness. But even more so, how willingly we see it as it is and not as it should be. Years of my life are littered with instances which prove that dismissing and disempowering the patient is a pattern, not an anomaly. To have the perpetrator paint the victim as the mad one is the ultimate gaslighting move. It is why so many women and mentally ill folk self-identify with madness. Myself included. You may give us the designation but you don't have unfettered control over what that definition encompasses. It is the mad ones who are envisioning and demanding the changes needed to make the world what it should be.
Day did come and I was discharged as an outpatient back into the murkiness of middle healthcare. I never even received discharge papers. All this time and not much has changed since I first entered middle healthcare so many years ago. In fact a had to fight to even get there. With this comes a persistent anger and hopelessness. It's accumulative and shades every interaction I have with healthcare. It weighs me down whenever I talk about chronic pain, with professionals and in personal relationships.
I spend thousands of dollars a year mediating all this and much of it has been on relinquishing the bitterness it made me feel. I had to unlearn the ableism deeply embedded in me. While I no longer feel bitter in the way of reinforcing the thought patterns of "why did this happen to me" and "I have it so much worse than the average person", when it comes to healthcare I am now–almost always–equal measures angry and sad. It might sound counterintuitive but (for me at least) being bitter was the beginning of legitimising what I was experiencing. It was a necessary step in understanding what was happening to me and in recognising that not only was it real but that others had experiences which were similar and oftentimes worse.[5] But what I feel now isn't of the same vein.
Now, it's a hovering sadness that when I ask myself "Am I okay? Will this be okay? Can I handle this latest bout of pain?" the answer is the same as the noncommittal refrain from the ER hallway: yeah… but no.
Because I am a middling.
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Appallingly but unsurprisngly, such healthcare burdens are intensely amplified for those who experience other disparities of power that are also replicated in the medical structure. I am automatically taken more seriously and given a higher standard of care because my skin is white. I am able to receive what treatment I do because I can afford it and because I am granted the arbitrary status of citizen in a country that by pure luck has government-funded healthcare. I easily converse in the language in which treatment is spoken about and have support systems (including a male partner in what appears as a hetero-passing relationship) who advocate for me when I am unable to do so for myself. I am not misgendered, called a name that is no longer mine, or fear the response to disclosures about my sexual organs. If I had a mental health episode that required intervention I would be admitted not incarcerated.[6]
What an incredibly low bar we have set ourselves. It continually reinforces the collective mindset that the sick and disabled are less valuable to the world. And in the very domain that is supposed to provide care and quality of life.
Footnotes
[1] It's not without a chuckle that I acknowledge an outdated definition of 'middling' as being "in fairly good health." In this article I use the term to mean someone who is in the middle (or the adverb meaning moderately), as a designation of a position in the healthcare hierarchy. Perhaps though–depending on your interpretation of 'fairly'–this alternate definition is quite apt.
[2] The history of medical sexism has become well-documented in recent years. Women experience chronic pain at higher rates than men (see: 2018, 2020). In regards to the four illnesses mentioned: the prevalence of Fibromyalgia is at least double for women compared to men (see: 1995, 2012). Depression occurs more frequently in women than men (see: 2008, 2016), as does IBS (see: 2016). Dysmenorrhea only occurs in those who can menstruate. Of course this is not exclusively women but in similar ways that the healthcare is failing cisgender women, it is failing transgender people even more so.
[3] A colonoscopy is not required for an IBS diagnosis (see: 2020, 2021).
[4] Only Cervantes the character, from Dale Wasserman's 1959 play version of Don Quixote, says this. Miguel de Cervantes y Saavedra himself did not say it and it does not appear in the novel. However it is a poignant rendering of much that the book embodies.
[5] "Worse" in this context is a loaded and ableist term. This kind of language can be both presumptive and condescending, as well as falling into the logic of 'oppression olympics' (as disability justice theory has shown us). I use it here only to signify the vast differences in experiences for sick or disabled people in an immediately apparent way. It is also an honest depiction of what I experienced. Comparison and self-minimising were a very real part of this process for me as a middling.
[6] Transphobia and racism are deeply imbedded in healthcare. We see this most starkly in America with the recent coverage of legislative campaigns waged against trans health and the devastating number of deaths from Covid being 3 times higher there for Black people. The Australian government continues to detain refugees and cause them irreparable harm while not even providing basic care or an adequate standard of living. The abysmal overall healthcare provided to Aboriginals is almost unbearable when considered together with the despicable rates of deaths in custody where associations with poor mental health may be more relevant than crime. See:
- Latrobe University, 'Healthcare failing transgender people [in Australia]' (2019)
- Zaria Gorvett, 'Why transgender people are ignored by modern medicine' (2020)
- Australians Together, 'Indigenous disadvantage in Australia' (2014)
- Erin Handley, 'Man's death years after heart attack on Nauru shows toll of Australia's refugee policies, advocates say' (2021)
- Mathieu Rees, 'Racism in healthcare: What you need to know' (2020)
- Ciaran Thapar, 'How the link between racism and Covid is being ignored' (2020)
So eloquent, so restrained and so beautiful. Not your treatment but your writing. I feel the deep anger and frustration and the sadness. Thank you for sharing this.
Such a journey! Middling is an appropriate word to fit, I’m sure, many people in similar circumstances. I have been blessed by excellent health treatment in the past, but have at times found myself trying to navigate the middling ground.
A very accurate description of the difficulty of responding to questions when in pain, or drugged up, without a partner there to help. I’ve been there a lot and it’s a scary experience.
Hang in there Tegan; you’ve shown how tough you are – you got this.