A Decade and a Half of Being Ignored: Daneka Etchells’ Journey to Diagnosis

Doctors failed to spot my hidden – For seventeen years, Daneka Etchells navigated life while medical professionals repeatedly dismissed her suffering. What began as an alarming onset of menstruation at age twelve eventually culminated in permanent disability. Unlike peers who experienced typical cycles, Etchells endured overwhelming bleeding accompanied by debilitating agony. Even after physicians prescribed contraceptive pills, her symptoms persisted without relief. Through numerous visits to general practitioners without resolution, her condition deteriorated to the point where daily functioning became nearly impossible.

Speaking with BBC Access All podcast, Etchells characterized her prolonged experience as “medical gaslighting.” This phenomenon occurs when healthcare providers minimize or invalidate patient concerns, leading individuals to question their own perceptions of pain and illness. The underlying culprit was endometriosis—a condition impacting approximately one in ten women globally. By the time physicians finally identified the problem, it had progressed extensively, causing permanent nerve damage that Etchells describes as growing “so vast and so wide and for so long, on nerves and ligaments that are attached to my legs.”

The Turning Point and Career Crisis

Etchells’ path to proper treatment involved a female general practitioner who initiated appropriate medication and arranged a referral to a gynaecologist. While the average diagnostic timeline for endometriosis spans nine years, Etchells—being neurodivergent—waited seventeen years. The critical moment arrived while performing as Lucius in Titus Andronicus at Shakespeare’s Globe, a prestigious London venue that many performers aspire to reach. Rather than celebrating this career milestone, the experience revealed that continuing her work was no longer feasible.

Shortly thereafter, Etchells required six months away from her profession. “I was using my walking stick pretty much all the time at that point and I could barely get up the stairs,” she recalled. “I felt so under the weather, so fatigued and in so much pain.” Her mobility became severely restricted, with periods so intense and accompanied by such severe bladder and bowel complications that she remained confined to her home for extended durations.

Private Treatment and Lasting Impact

Unable to endure further delays within the National Health Service system, Etchells accumulated funds through personal savings, loans, and a GoFundMe campaign. She even negotiated directly with the surgeon’s secretary to secure favorable terms. The excision surgery, designed to eliminate endometriosis lesions, provided significant relief. “It made her feel lighter,” Etchells noted regarding the procedure’s effects. However, the prolonged period of being overlooked by medical professionals resulted in enduring consequences, including permanent mobility challenges.

Today, Etchells continues to experience constant pain and relies on a mobility aid for movement, yet she has returned to theatrical performance. Her role as Martha, a maid character, in the disabled-led stage adaptation of The Secret Garden at Theatre Royal Bath holds particular significance. The production explores themes of medical dismissal through its portrayal of Colin, who similarly faced being unheard as a child.

A Story Reimagined: Tom Wentworth’s Vision

The adaptation also mirrors the experiences of playwright Tom Wentworth, who created this new version. Wentworth, who identifies as “queer and disabled,” harbored cerebral palsy and endured urological complications that physicians frequently attributed to his existing condition rather than investigating thoroughly. Like the original character Colin, Wentworth spent considerable periods bedridden during his youth.

The classic narrative, published 115 years ago, follows ten-year-old Mary Lennox as she discovers a concealed garden and her disabled cousin Colin within her uncle’s grand estate. In Wentworth’s interpretation, Colin does not experience a miraculous recovery. Instead, the children develop the vocabulary and confidence to advocate for themselves and secure the support they require. This revision reflects Wentworth’s own reality, where disability remains a constant presence rather than something to be overcome.

Etchells observes that her personal journey of being medically ignored resonates throughout this reimagined tale. Both she and Wentworth demonstrate that disabled individuals possess deep knowledge of their own bodies, even when healthcare systems fail to recognize this expertise. The production stands as a testament to the importance of listening to those who have been dismissed for too long.