This is what not to say to somebody who is HIV-positive

Gareth Thomas

On Sunday, September 15, the former Welsh rugby captain Gareth Thomas was “forced” to come out as HIV-positive – revealing that the stigma against HIV-positive people is sadly alive and well.

The rugby star bravely decided take control of his story and use the opportunity to correct the common misconception of HIV positive people as “weak” or “close to dying”.

His experience has prompted others in the HIV-positive community to share what the diagnosis really means, and how people’s reactions can often indicate a lack of understanding.

Lizzie Jordan, founder and director at Think2Speak, is a multi-award-winning social entrepreneur, a mother, widow and is HIV-positive. She is one person with a myriad of possible labels. 

More than a decade ago, Lizzie became a mother, a widow and HIV-positive all within an 18-month period. 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.

18 months of plotting and planning later, Think2Speak CIC was founded.

Lizzie Jordan, founder of Think2Speak CIC (supplied)

Lizzie’s tips on 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 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 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 is all about respect.