The ones progress forgot: medically unexplained conditions and the myth of recovery, 2026, Sirotiak

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Research Article

The ones progress forgot: medically unexplained conditions and the myth of recovery​

Zoe Sirotiak

Received 25 Jul 2025, Accepted 18 Jul 2026, Published online: 05 Aug 2026


Abstract​

This essay explores the chronic marginalization of medically unexplained chronic health conditions, using myalgic encephalomyelitis and long COVID as examples of conditions facing broad systemic medical neglect.

Drawing on a critical autoethnographic approach, the author writes from a dual position as both researcher and a person living with myalgic encephalomyelitis.

These conditions are consistently plagued by dismissal, underfunding, misdiagnosis, and psychologization of symptoms, disproportionately affecting marginalized individuals.

Rage and refusal are reframed not as pathological but as rational responses to medical injustice.

Highlighting lived experience and rejecting redemption-focused recovery narratives, this analysis challenges the assumption that progress is best measured through individual improvement and instead exposes how systemic barriers continue to propagate harm for those who do not recover.

Points of interest​



  • This paper considers how people with health conditions that are hard to diagnose and treat, such as chronic fatigue syndrome or long COVID, have historically been ignored or blamed for their symptoms.
  • The author draws on both research findings and personal experience of living with chronic illness to show how people can be dismissed, blamed, or told their symptoms are ‘all in their head.’
  • Women and non-white individuals with chronic conditions are more likely to be disbelieved and to receive poorer care for these conditions.
  • The paper challenges the idea that people must always ‘get better,’ and shows how anger and refusal can be reasonable responses to being ignored or mistreated.
  • Changes in healthcare are needed so that people who do not recover are still heard, supported, and treated with respect.

Keywords:

 
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I can perform wellness for several hours a day, remaining present and productive in the research laboratory or in meetings. What is less visible are the other 16–20 hours: the hours spent lying down, typing manuscripts on a dimmed screen in a darkened room, struggling to eat, pausing on the stairs to catch my breath, calculating where it might be safest to collapse when I enter a room, and enduring episodes of overwhelming pain. My life is unrecognizable from a decade ago. During the early months, I focused intently on that question: Are things getting better?
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Over time, however, my loss has become more total; I now grieve my entire existence. Despite the incessant nature of myalgic encephalomyelitis, I was expected to mourn briefly and then show gratitude; after all, I am alive. My academic work and writing are put forth as evidence of my resilience, as if survival were equivalent to living. However, what remains will never compensate for what I lost.
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Our grief is framed as an emotional failing rather than a rational response to irreversible change. The lack of socially acceptable narratives of non-recovery contributes to pressure to convert suffering into gratitude or inspiration, which others can easily understand and comfortably experience.
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Medical progress is selective, and conditions that cannot be cured are often overlooked, with responsibility shifted onto those living with them. Symptoms are attributed to psychological causes, lack of effort, or behavioral failure rather than systemic barriers.
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‘You are lucky,’ a physician told me during my first year of living with myalgic encephalomyelitis when my tests came back negative again. lucky to be suffering without cause or treatment? lucky because no one can see the broken pieces? As though being lost without a map meant I was not lost after all.
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I have multiple graduate degrees, a clinical license, and a growing publication record. by conventional metrics, I am on an upward trajectory. In reality, I am destroyed. My productivity is not a measure of wellness; it is simply the residual trace of a life that no longer exists. The purpose and satisfaction are gone; only the output remains. Nothing I do now is for joy; I remain active and productive not because I feel well, but because I cannot afford the silence required to face what I have lost. Turning pain into productivity is one of my few remaining strategies. It is grief disguised as passion. What is praised as resilience is merely redirected grief and anger.
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They do not believe my pain, my limitations, or my grief. However, they cannot dismiss my output. My accomplishments are undeniable, even when they cost me everything. This is not strength, and I would never have agreed to this. This is not resilience; this is having no choice. I am congratulated for enduring my own collapse, with my productivity used as an excuse to ignore my suffering; it must not be that bad if I can do all of this. What I once loved – being active, reading, writing – now becomes evidence that I am not suffering enough. They point to the remaining shreds and call it resilience, but I know what I have lost and the exact cost. Sometimes, function is not healing; it is simply survival. I am praised for the production coming from my cage and how nicely I decorate the exterior, but no one asks why I am held here in the first place.
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I was honest the first few times I filled out mental health screenings after the onset of myalgic encephalomyelitis. Of course I was depressed; I had lost the life I had loved and nearly all of my plans. I felt like I had influenza every day, like I was emerging from anesthesia every minute. Of course I was anxious. I wondered what I would lose next and how much worse I might become.
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I quickly realized my mistake. Once mental health diagnoses appeared in my medical chart, they began to shape every subsequent clinical encounter. Physical symptoms were routinely reinterpreted as psychological ones: exhaustion became depression; tachycardia became anxiety. The illness was no longer located in my body but in my mind. What initially felt like recognition became a mechanism of dismissal, as distress was used not to deepen medical investigation but to justify its end.
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By the time I recognized the trap, it was already too late.
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I learned how to walk the narrow tightrope in medical encounters, becoming skilled at making my illness socially tolerable and worth taking seriously. Show emotion, and it is all in our heads. Show composure, and it cannot be that bad. Either way, we are discredited and blamed.
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Even as I fell apart, I learned that signs of progress or resilience must accompany suffering. The emotional labor of appearing deserving of care becomes the patient’s responsibility. We cannot be too miserable; misery is inconvenient and depressing. Whatever crisis we bring with us, reassurance must come too, not for our sake but for theirs. Regardless of the pain, we are expected to smile.
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The medical system operates through a narrow dichotomy: We are either healed or we are healing. If we exist outside of these categories, we have failed. We are permitted to be broken only if we are also actively being fixed.
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There is no space to share what living with these conditions truly feels like. I do not want to live. That is not a crisis; it is a rational response to living like this every day for six years without a break, to being abandoned by every system that was supposed to help. However, if I admit it, I become dangerous and unstable. I must be out of my mind. So, I fake hope and positivity to retain access to medical care and remain credible.
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In a world that demands my performance, I have found my method of resistance: rage. I have used rage to survive the pain, but not without consequences. Anger makes us unsupportable; soon, it is the cause of our symptoms. Rage becomes proof of pathology rather than a rational response to harm. However, rage is not inherently the enemy. For some, it is a form of clarity that validates what we experience when no one else will. Of all the emotions I have experienced since the onset of myalgic encephalomyelitis, rage has been the most consistent and the most honest. It does not ask me to reframe, to forgive, or to search for meaning; it does not require performance. In a world that repeatedly denies the reality of my existence, rage is one of the few responses that refuses that denial.
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There is no heroism in survival, only strategy and desperation. I do not survive because the system works; I survive despite its neglect and abandonment. I refuse to hope. I refuse to conform. This is not a story about getting better. It is a refusal to allow my experience to be erased. I survive on competitiveness, just as I did when I was an athlete. I survive out of spite. That same drive that propelled me to the podium now pushes me onward. I do not know how to quit, even when the game was rigged from the start. When winning becomes impossible, the only remaining strategy is refusing to lose. Survival becomes its own form of resistance.
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They want a narrative that makes it all worth it, that converts damage into meaning, that ends in growth. They want me to explain how I overcame my struggles. I am here to refuse that ending. Redemption stories do not just exclude us; they justify our neglect. I am still sick and angry and coherent - and that is the whole story.
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Six years in, I offer no success story or reassurance, only an account of what we have chosen not to acknowledge. For many of us, there is no upward trajectory, only a rupture: a before, an after, and the body and mind that must live in the space between. Are things getting better? I envy those who still have the luxury of wondering.
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Extraordinary. I am very envious of the author's ability to articulate so much of what I myself have struggled to express with any degree of eloquence or clarity. I also envy their rage. I used to be driven by rage, yet all to often find myself too tired for anger. Simply a passive, broken thing, unable even to summon a whimper, let alone a bang. It is humbling and beautiful to see all of this expressed so well and with such passion.

I have multiple graduate degrees, a clinical license, and a growing publication record. by conventional metrics, I am on an upward trajectory. In reality, I am destroyed. My productivity is not a measure of wellness; it is simply the residual trace of a life that no longer exists. The purpose and satisfaction are gone; only the output remains. Nothing I do now is for joy; I remain active and productive not because I feel well, but because I cannot afford the silence required to face what I have lost.
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Aside from the fact that my career is not on an upward trajectory by any measure (and that I am a humanities scholar rather than active in a field requiring a clinical license), I could have written this myself, had I but the eloquence. As one of the few pwME who is still able to work (to some limited capacity), there is always the sense that I ought to be grateful for what I have. To a certain extent, I am, or at least I am mindful of it and try (though often fail) to be circumspect in my whinging. This hits at a particular flavor of devastation that I feel when I am at my best.

There is no space to share what living with these conditions truly feels like. I do not want to live. That is not a crisis; it is a rational response to living like this every day for six years without a break, to being abandoned by every system that was supposed to help.
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Yes.
They want a narrative that makes it all worth it, that converts damage into meaning, that ends in growth. They want me to explain how I overcame my struggles. I am here to refuse that ending.
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Perfect. The refusal to learn whatever lesson the universe has taken upon itself to inflict upon me is one of the few forms of resistance I find I have left. It is a spite I hope never to lose.
 
ME Research UK:

In an article (behind paywall), published in the journal ‘Disability & Society’, Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – reflects on “the myth of recovery”, and how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp
 
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