Doctors failed to spot my hidden condition for so long I was left permanently disabled
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- Daneka Etchells developed endometriosis symptoms at age 12 but wasn't diagnosed for 17 years, by which point the condition had grown across nerves and ligaments in her legs, causing permanent nerve damage and a lifelong mobility issue.
- Etchells told the BBC Access All podcast her experience was "medical gaslighting," and she now performs in a disabled-led stage adaptation of The Secret Garden in which the medically-gaslit character Colin learns to advocate for himself.
- Unable to get timely NHS treatment, Etchells crowdfunded on GoFundMe, borrowed money, and negotiated with a surgeon's secretary for private excision surgery, which she says made her feel "lighter" — but did not undo the nerve damage already done.
- Playwright Tom Wentworth, who describes himself as "queer and disabled" and has cerebral palsy, rewrote The Secret Garden's ending because the original — in which Colin is "miraculously cured" — did not reflect his reality; he says doctors routinely attribute new symptoms to his cerebral palsy rather than diagnosing them properly.
- The average endometriosis diagnosis takes nine years; for Etchells, who is neurodivergent, it took 17, and Healthwatch England's interim policy director William Pett said women, young people, and LGBTQ patients are "less likely to feel listened to by healthcare professionals than others."
- Etchells now uses a walking stick and told the BBC she has learned to "medically gaslight myself to get through the day" on workdays when she cannot take strong pain medication.
Why it matters: Etchells' case shows the cost of the nine-year average endometriosis diagnosis gap: by the time a neurodivergent woman was properly heard, nerve damage was irreversible. Healthwatch England says women, young people, and LGBTQ patients feel listened to less — and the NHS response (Martha's Law, Women's Health Strategy) is named but unproven against lived experience like hers.
