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A mother of four, Fellow of the Royal Society of Arts, and one of the UK's most influential HIV advocates - diagnosed in rural Louisiana in 1999 when an immigration doctor told her she had about seven years to live.

Summary

Susan Cole-Haley had recently married her second ex-husband - she collects them, she says, like shoes - and moved to rural Louisiana. The immigration HIV test didn't cross her mind. The doctor said: the good news is you don't have syphilis. The bad news is you're HIV positive. He gave her about seven years. Her children were five and seven. She didn't know anything about combination therapy. Back in the UK, her mother sent Aidsmap booklets across the Atlantic, and Susan realised the doctor was wrong.

Her own GP had previously refused to test her - oh no, dear, that doesn't affect ladies like you. When she told her father, his first words were: make sure you don't tell anyone. Years later, an oncologist treating her for triple negative breast cancer asked how she got HIV and circled HIV POSITIVE on her blood test notes. Susan changed hospitals.

She went on to work for Aidsmap and the UK Coalition of People Living with HIV, posed naked on a magazine cover while heavily pregnant to show that women with HIV could have children born free of the virus, and co-founded the Phoenix Health Movement to address health inequalities affecting Black women. Her son James now works for the National AIDS Trust.

Key Moments

• [03:04] Rural Louisiana, January 1999 - an immigration test, no syphilis, and about seven years to live
• [04:27] Tombstones and icebergs - all she knew about HIV was the 1980s campaigns, and children aged five and seven
• [07:42] "Make sure you don't tell anyone" - her father's first words, rooted in Jamaican stigma and a desire to protect
• [08:50] The GP who refused - told it doesn't affect ladies like you, and warned it could stop her getting a mortgage
• [12:54] Triple negative breast cancer - a second diagnosis, an oncologist who circled HIV POSITIVE, and the decision to change hospitals
• [18:14] Telling the children - years of silence, and children whose only complaint was that she didn't tell them sooner
• [21:16] The naked magazine cover - four-inch heels, sheepskin, airbrushed cellulite, and a woman who saw the article and chose not to have a termination
• [24:04] Health inequalities and Black women - pain not believed, concerns dismissed, and a grandmother whose hospital notes read "why bother"
• [29:33] Phoenix Health Movement - co-founded with Dr Vanessa Appiah to address inequalities in healthcare for Black women
• [33:57] Seven years to a fellowship - from a death sentence in Louisiana to Fellow of the Royal Society of Arts

About Susan Cole-Haley

Susan Cole-Haley was diagnosed with HIV in January 1999 in Louisiana. She is a writer, broadcaster, Fellow of the Royal Society of Arts, and co-founder of the Phoenix Health Movement. She has four children, all HIV-free, a white German Shepherd, and a Romanian rescue dog. Her son James works for the National AIDS Trust.

Resources

• Phoenix Health Movement
• Positively UK
• National AIDS Trust
• Aidsmap

Mentioned in this episode:

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