Hermione Hoby, based in Boulder, Colorado, endured a mysterious illness for decades before receiving a diagnosis. Her journey raises a compelling question: could retraining the brain hold the key to managing such chronic conditions?
The Early Years of Uncertainty
At a Croydon secondary school in the late 1990s, a deputy headmistress referred to Hoby's condition as a "mystery illness" in a letter to her parents. This phrase, laden with implication, haunted her for years. At age 11, after a seemingly ordinary virus, Hoby never fully recovered. Instead, she entered a persistent state of malaise characterized by headaches, sore throat, swollen lymph nodes, body pains, fatigue, weakness, and postural orthostatic tachycardia syndrome, causing faintness upon standing.
Listing symptoms as discrete items feels misleading, Hoby notes. Illness, for her, manifests as an oppressive cloud that obscures mental clarity and physical vitality. During severe episodes, reading becomes impossible, television feels abrasive, and even breathing requires effort. For a shy child, articulating this suffering proved daunting, leading doctors to focus on headaches as the primary diagnostic clue, though benign intracranial hypertension was inconclusively considered and dismissed.
Medical Misogyny and Dismissal
Over the decades, Hoby encountered numerous doctors who essentially told her nothing was physically wrong. This experience aligns with the broader issue of medical misogyny, where female patients' symptoms are often dismissed. Though now recognized, this prejudice was less acknowledged years ago. Hoby recalls doctors avoiding eye contact while declaring her fine based on blood tests, with one even questioning her vegetable intake. The frustration of not being believed sometimes felt harder to bear than the illness itself, highlighting the need for validation and a comprehensive diagnosis.
A Turning Point: Diagnosis and Relief
In her early 30s, Hoby's partner suggested she might have myalgic encephalomyelitis or ME, also known as chronic fatigue syndrome (CFS). Initially hesitant, Hoby eventually consulted an ME/CFS specialist in New York City, who confirmed the diagnosis. Learning that her symptoms, like the gluey sensation when standing, were authenticating markers brought tears of relief. For the first time, her condition had a name—a complex neuroimmune disease with unknown causes, often triggered by infections.
While there is no standard treatment, the psychological comfort of diagnosis provided more relief than any medication. After moving to Colorado in 2018, Hoby attributed slight health improvements to sunshine and mountain trails, though love and raised vitamin D levels likely played roles. However, episodes of debilitation persisted, lasting weeks to months, with a severe recurrence in late 2023 that left her bedridden and struggling with basic tasks.
Exploring Brain Retraining
Desperate during a 2024 episode, Hoby sought alternative therapies in Boulder's wellness-oriented community. An energy healer mentioned "brain retraining," sparking curiosity despite initial skepticism. The concept rests on two principles: the mind-body connection, explaining placebo effects, and the idea that conditions like ME/CFS involve the brain erroneously perceiving threat, trapping the body in illness. Brain retraining aims to rewire neural pathways out of these loops.
Hoby engaged Jason McTiernan, a wellness coach, who guided her through exercises like deep relaxation techniques, vision boards, and logging daily achievements. The goal was to activate the parasympathetic nervous system, promoting "rest and digest" over "fight or flight." Though the approach felt corny, Hoby committed, hoping to trick her body into wellness. In May 2024, she celebrated a milestone by hiking a trail, sharing a triumphant selfie with McTiernan.
Setbacks and Reflections
However, subsequent episodes brought disillusionment. When brain retraining failed during another downturn, Hoby questioned its efficacy. McTiernan emphasized the importance of congruent language and mindset, but Hoby's reservations grew, particularly around the individualistic wellness discourse that can imply thoughts alone can heal, a dangerous notion in a profit-driven healthcare system.
Resisting writing about illness for years, Hoby finally penned this essay, not as a triumphant recovery story nor a denunciation of brain retraining, but as a nuanced exploration. She acknowledges that illness is often meaningless and random, requiring ongoing management rather than forced meaning. Recent consultations with new specialists offer hope for more information, though no cure is promised.
Conclusion: Embracing Uncertainty
Hoby concludes that there is no demon to blame—just her and her still-mysterious illness. She anticipates future mountain hikes and inevitable bedridden periods, accepting the cyclical nature of her condition. The journey underscores the complexities of chronic illness, the pitfalls of medical dismissal, and the potential—albeit imperfect—role of mind-body approaches in healing.
