The spiral of suffering |
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‘The initial weeks of this turmoil were pure hell. I couldn’t eat, I couldn’t sleep, and I had burning in my mouth, throat, ears, and nose 24/7. I want to die just to stop the burning … feels like something is “tearing” into my stomach … I eat, I suffer. If I don’t eat, I suffer. I’m being bullied by my body.’
These words, written by a user of an online community dedicated to reflux diseases, capture something we rarely acknowledge: despite all the scientific and technological marvels surrounding us, pain and suffering can be just around the corner. What begins as ‘mere heartburn’ escalates, for some, into an odyssey of suffering that seems to resist every intervention our information-rich world can offer.
This is the paradox of chronic illness today. Never before have humans possessed such convenient access to abundant medical knowledge, expert guidance, health influencers, and communities of fellow sufferers. Expertise flows across digital networks, promising hope for every ailment. Yet, paradoxically, this abundance can become a source of suffering. Instead of finding relief, many individuals suffering from chronic illness find themselves descending into a spiral of suffering – a cruel journey where each piece of information, whether from expert opinion or laypersons, may offer hope momentarily, but over time deepens their distress.
While diseases such as cancer, AIDS, ALS, Alzheimer’s, multiple sclerosis and diabetes often evoke deep fear, sympathy and collective urgency – reflected in dedicated charities, advocacy groups and public awareness campaigns – there exists an under-recognised class of bodily conditions that also wreaks havoc on human lives. These illnesses often receive little social legitimacy and may even be dismissed by medical professionals, family members and society at large as mere tiredness, laziness or psychological fragility. Conditions such as chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), Long COVID and Lyme disease are often dismissed as trivial, yet they can be profoundly disabling. Though not usually life-threatening, these overlooked illnesses can dismantle a person’s social, professional and emotional world, leaving sufferers severely disadvantaged – often without the sympathy or structural support afforded to more widely recognised diseases.
Reflux diseases are among the many conditions that can trap sufferers in a spiral of chronic suffering. The category includes both gastroesophageal reflux disease (GERD) and laryngopharyngeal reflux (LPR). In GERD, stomach acid, digestive enzymes and other gastric contents rise into the oesophagus, whereas in LPR they reach even higher into the throat, airways and voice box. GERD often produces burning in the chest and oesophagus, while LPR tends to cause throat burning, hoarseness, chronic cough, postnasal-drip sensations and even nerve pain – frequently without any heartburn at all. In severe cases, long-term irritation can contribute to oesophageal or throat cancer.
These brutal conditions are neither mysterious like Long COVID, whose causes and progression remain uncertain, nor urgent like cancer. Instead, they occupy an uncomfortable middle ground: familiar, longstanding and supposedly manageable. Recognised for thousands of years, reflux diseases were formally described by modern medicine in the 18th century, and have recently become especially widespread and disruptive. Some estimates suggest that reflux diseases affect between 10 and 20 per cent of various populations worldwide, with lower but increasing numbers in East Asia.
These treatment-resistant cases expose systemic gaps in how medical professionals address chronic illness
Like some other chronic conditions, reflux may be seen as minor yet it can quietly dismantle lives. Here is a condition that affects hundreds of millions, has well-established treatments, and seems manageable from the outside. Yet our study of online communities dedicated to this disease reveals numerous voices documenting years of failed medical interventions, contradictory and unbounded layperson advice, and gradual erosion of hope and trust in expertise itself. Sufferers can be left with a depressing realisation that modern medicine and the deluge of layperson advice cannot reliably heal something as seemingly straightforward as gastric fluids rising into places they do not belong.
As researchers studying expertise and organisational responses to chronic illness, we bring both scholarly training and lived experience to this investigation. Siddhant, in particular, studies suffering as a symptom of the limits of both professional and lay expertise. This dual perspective led us to conduct a systematic analysis of online communities where chronic illness sufferers worldwide gather to voice and document their journeys of pain, dismissal and desperation, as well as hope, empathy and camaraderie. In examining these digital archives of struggle, we discovered how seemingly ‘manageable’ conditions can become sources of profound, intractable suffering, not just despite but often because of our information-rich environment.
The research focuses on a specific subset of reflux patients: people whose symptoms persist despite standard treatment and who turn to online communities for support. While estimates vary, studies