Think2Speak  What not to say to someone with HIV.

Gscene Editorial Team November 10, 2019


What not to say to someone with HIV.

Lizzie Jordan, Founder and Director of Think2Speak, which specialises in LGBT+ inclusion, gender identity and transgender, puberty, sex and relationships education, is a multi-award-winning social entrepreneur, a mother, a widow, and is HIV+. She is one person with a myriad of possible labels.

More than a decade ago, Lizzie became a mother, a widow and HIV+ all within an 18-month period. In 2012, her life was turned upside down. As a single mother to a grieving child, Lizzie wanted to find resources and training locally for her child’s primary school. She struggled.

Lizzie recognised the issues being faced in classrooms across the UK and wanted to do something about the ‘uncomfortable silences’ young people often felt when discussing sensitive subjects with the professionals involved in their lives. After 18 months of plotting and planning, Think2Speak CIC was founded.

Here are Lizzie’s tips on what not to say, or how to approach someone who has HIV:

  • Don’t bring it up unless they do: Someone’s HIV status is their HIV status and theirs alone – as we’ve seen with Gareth Thomas. He has been forced to share his news because the press were threatening to make this public. There’s nothing wrong with being curious about HIV but there are certain things that should be respected and it isn’t every HIV positive person’s job to educate you.
  • It doesn’t define someone: Just because someone is living with HIV doesn’t mean that’s all they are. It’s a virus, it isn’t someone’s personality, their fault, their ‘choice’ nor is it their identity or the only subject on which they can speak.
  • Use your common sense: There are certain aspects of conversation that are off-limits, but morbid curiosity often prevails. Try to think if you actually need to know the answer to the question you’re about to ask! Or maybe you can search the internet before you ask a glaringly obvious, or even insulting question.
  • Don’t ask how they got it: This is perhaps the most insulting. You’d never ask the same of someone who’s living with cancer or diabetes. A lot of this kind of thinking can be attributed to the ‘blame’ culture that exists when it comes to sexual health and HIV, it is often viewed as a ‘choice’. Blame is never apportioned to other health conditions.
  • Don’t tell them they are ‘looking well’: People often comment in this way as if having HIV should mean you look ravaged by disease. This is often accompanied by a well-meaning, but ultimately patronising tilt of the head. Science has moved on dramatically since the 1980s and people with HIV who are diagnosed, accessing care and treatment, live full, healthy and happy lives.
  • Don’t presume the worst: Many people who ask questions aren’t aware of the fact that someone living with HIV, on antiretroviral medication, can now be undetectable and therefore untransmittable. This is known as U=U. It totally dispels the perceived ‘threat’ of people living with HIV. This will become general knowledge as time moves on, but for now, education and awareness is still needed.

Overall, relax. If someone shares their HIV status with you, respect them for sharing their personal and sensitive information with you. Lots of people living with HIV choose to share their stories to encourage awareness and understanding. Curiosity is fine, being too personal and intrusive isn’t it’s all about respect.


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