Caroline Guinness was diagnosed with HIV in 1986, when she had a three-year-old daughter and was working in the music video industry with clients including Queen, David Bowie, and Duran Duran.

After a doctor performed an HIV test without permission during cervical cancer treatment, Caroline initially refused to know the result before ultimately being told she was positive for what was then called HTLV-III.

Given roughly five years to live, Caroline transformed her private struggle into public advocacy by co-founding and leading Positively Women, one of the UK's first peer-led support organisations specifically for women living with HIV.

Her journey spans nearly four decades of HIV history, from the pre-AZT era through combination therapy, whilst navigating motherhood, relationships, and the unique challenges faced by women in a predominantly male-focused epidemic response.

Caroline's story demonstrates how personal experience can become the foundation for systemic change, creating support networks that have helped countless women through their own HIV journeys.

Timestamped Takeaways

03:20 - Unwanted test revelation: "He'd done a test for what was called then HTLV-III... I got angry because he hadn't asked my permission."

04:13 - Initial refusal to know: "I got this kind of icy feeling, but I didn't want to know... whatever the result is, I do not wish to know."

05:18 - Doctor's decision: "I know you didn't want to know the results, but I think you're too intelligent not to know... you are positive."

06:14 - First concern for daughter: "My first reaction was my daughter instantly, could she have it?"

07:39 - Friend's devastating reaction: "She just screamed and said, I can't take another one. Someone I love dying."

08:06 - Feeling of detachment: "It was a bit like a sheet of glass suddenly went down between me and the rest of the world."

11:53 - Music video career peak: "We did everything all the Duran Duran, Elton John, David Bowie... We did Video Killed the Radio Star."

14:31 - First fundraising opportunity: "I immediately thought, oh, there's something I can do. There's something I can be proactive here."

19:26 - Different concerns for women: "Being female with HIV was actually very different. We had different concerns to men."

21:12 - Finding peer support: "I felt like I'd come home... to be with people who are in the same situation."

23:00 - Double life reality: "I was doing a lot of publicity as Caroline Guinness... and then I had a pseudonym called Pearl."

24:27 - Daughter's response: "Her reaction was, oh, is there anything I can do? And I said, well, you could help me with some of the housework."

25:38 - Daughter's courage: "She stood up and said... my mum is positive... can you please come and speak to my face."

29:35 - Health crisis: "Caroline, if you don't start taking these drugs, you are dead. You're not going to walk out of this hospital alive."

30:24 - Combination therapy reality: "I had the Lazarus effect... suddenly back in the world of the living."

32:48 - Women as vectors myth: "One of the hardest ones... was that we were these vectors of infection."

37:10 - Meeting Mark: "I did have this thing... butterflies in my stomach... when you know your life's about to change."

39:55 - Media invasion: "Guinness heiress... married to a famous actor dying of AIDS."

42:38 - Changing the narrative: "We changed the narrative... that turned into a positive thing."

44:17 - Greatest achievement: "Positively Women, without a doubt."

49:06 - Final message: "You deserve to live."

Links:

• Other work from Producer Dan Hall.
• Positively UK - A peer-led organisation offering support and advice for people living with HIV, including women, youth, and migrants.
• The Love Tank - An organisation focusing on wellbeing of queer communities, especially Black and brown people, through projects like PrEPster and The Grass Is Always Grindr.
• Positive East - London-based support centre offering HIV testing, counselling, community outreach, and health services.
• PrEPster - Community-led PrEP (HIV prevention pill) education project. Offers clear and inclusive info for diverse audiences across the UK.
• National AIDS Trust - A UK policy and campaigning organisation dedicated to ending HIV stigma and promoting effective HIV policies.
• aidsmap - A trusted source for up-to-date, evidence-based information on HIV. Great for learning about treatment, living with HIV, and current research.
• Terrence Higgins Trust - The UK’s leading HIV and sexual health charity. Offers support, testing info, prevention resources (PrEP), and education materials.
• In the Key of Q - Podcast celebrating Queer musicians and their stories, also produced by Dan Hall.