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A young woman diagnosed with HIV at 21 in 2018 on her 1,199 days of silence, the book of lies she kept to track her cover stories, and why being called brave is part of the problem.
Summary
In the summer of 2018, Ellie Harrison was 21, working in London fashion, and ordered a routine STI test because she thought a break-up was coming. The clinic called it a false positive. It wasn't. She found out for certain on a Monday lunchtime, walking towards a Greggs in Birmingham, when 40 missed calls from an NHS number lit up her phone. She never made it to the sandwich.
What followed was 1,199 days - a number now tattooed on her arm - during which Ellie told fewer than ten people and kept a physical notebook of lies to remember which cover story she'd given for the daily tablet she took at lunch. She showered in water so hot it blistered her skin. She convinced herself she was the only woman in the world with HIV. When a boy she'd drunkenly told at a freshers' party spread her status across the university, it felt like the whole of Birmingham knew. Nobody came back with anything useful. They just said: that's really shit.
On World AIDS Day 2021, she filmed a video in her bedroom with a glass of wine, got too scared to post it, went out, got blackout drunk, asked a room full of people at an afterparty to watch it, and then put it on Facebook. By morning, her phone was unusable with notifications. She went on to work with the Terrence Higgins Trust and volunteer at the George House Trust in Manchester, where she met Paul Fairweather - the first person living with HIV she'd ever knowingly had a conversation with, four and a half years after her own diagnosis.
Key Moments
- [01:37] Summer 2018 - a routine STI test ordered as a precaution before an anticipated break-up, and the habit of regular testing that meant Ellie was checking for chlamydia, not HIV
- [04:28] The false positive - a clinic that reassured her it was probably a transport error, and the night out where she joked about her 30 seconds of fear
- [06:39] Walking towards a Greggs - 40 missed calls on a Monday lunchtime, the moment she didn't need the clinic to tell her what she already knew
- [08:12] "I didn't carry any of that knowledge with me" - taught about HIV at school, armed with none of it when it mattered. All she remembered was people dying in the 80s
- [10:04] The long corridor - the nurse who kept looking back to check she was still following, the refusal to sit down, and six panic attacks in the room where the words were finally said
- [13:42] Ringing mum and dad - parents hung over at an 80s festival in Levi's T-shirts, a mother who kept insisting it would be something else, and a three-hour drive to Birmingham
- [27:17] 1,199 days - the elapsed time between diagnosis and activism, the book of lies, and showering in boiling water because nobody said it would be okay
- [30:26] Freshers' week and the boy who told everyone - a drunken disclosure, a status shared across the university without consent, and the chaotic pub-to-pub mission to find out who knew what
- [36:03] The video, the wine, the afterparty - filming a disclosure video in her bedroom, being too scared to post it sober, and waking up to a phone full of missed calls that wasn't about a death
- [39:52] "Don't call me brave" - why Ellie believes the word reinforces the idea that HIV should be kept secret, and why talking about a thing that happened to her shouldn't require courage
- [41:53] The George House Trust and Paul Fairweather - volunteering before she'd ever accessed a service herself, and meeting the first person living with HIV she could sit across a table from
About Ellie Harrison
Ellie Harrison was diagnosed with HIV in August 2018 at 21. She is an HIV activist and peer mentor based in Manchester, working with the Terrence Higgins Trust and the George House Trust. She was inspired to speak publicly by the Gareth Thomas documentary, It's a Sin, and the work of Nathaniel Hall.
Resources
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