The stigma and mental health impact of a HIV diagnosis

Ewan Summersbey
Ewan Summersbey

Network Investment Senior Officer at Mind

HIV (human immunodeficiency virus) is a virus that attacks the body’s immune system. While the treatment and outcome of an HIV diagnosis have improved dramatically since the AIDS crisis of the 1980s, a stigma still surrounds the virus and many inaccuracies still persist.

Ewan Summersbey, the Network Investment Senior Officer at Mind, discussed his experiences of having HIV, and the impact he has seen it have on the mental health of those living with it.

Many of us know that there is ongoing stigma​Tools for raising awareness and tackling stigma Web page Line managers and supervisors are the frontline of wellbeing management. This resource shows managers in the railway industry where to find information to promote awareness of mental health in the workplace.FreeSign up for free to access By: RSSB View resource associated with mental health. We know that the consequences of that stigma can be broad, keeping people from seeking treatment and contributing to people either experiencing a worsening of their mental health, or at least impeding their journeys to wellbeing.

Many of us also know that mental health can suffer when a physical health diagnosis is received. Imagine for a moment that the physical health diagnosis is one that carries its own deep rooted stigmas. Being diagnosed with HIV certainly falls into that category.

I’m really keen that the convergence of mental health and HIV is addressed

Before coming to work for Mind in 2018, I had worked in the sexual health and HIV field for many years. I have been living with HIV since 2006. I am on treatment and I am undetectable. If you don’t know what that means, read on! As a result of my own lived experiences, I’m really keen that the convergence of mental health and HIV is addressed and destigmatised in life generally, but also in the workplace.

Two men walk hand in hand.

As a condition, HIV is covered by the definitions of disability Disability Confident Disability Confident is a scheme that supports employers to make the most of the talents disabled people can bring. View organisation in the Equality Act 2010. Just as a mental health condition might be classed as substantial, lasting for or expected to last for more than 12 months. This is regardless of the overall health of the individual with HIV. Employers need to be aware that any discrimination against a person with HIV in applying for a position, or in being harassed in the workplace are subject to all the same measures and sanctions defined by the Equality Act 2010 as any other person with a disability.

Most people I know who are also living with HIV would not describe or define themselves as having a disability, however. I don’t. This does not mean that I don’t have the protection of the Equality Act. I do. In my working life, I’ve generally been incredibly fortunate and have not experienced any discrimination based on my HIV status. This is not the experience of everyone though.

One colleague who would not use the same cutlery as them

In my work, I have met people that have experienced both stigma and discrimination in the workplace. In considering other forms of discrimination, one might define some of this stigma as ‘micro-aggressions’. For example, the person I knew who had been open about their status in their workplace, but experienced one colleague who would not drink from the same receptacles, or use the same cutlery as them. In case of doubt, it is not possible to pass on HIV through cups, cutlery or toilet seats!

Fortunately, stories of people experiencing the withholding of promotions, or worse still dismissal as a result of their HIV status are rare now. They do still happen though. That’s problematic, as it stops people from disclosing their status​Talking about mental health problems and dealing with disclosure Web page Not all managers feel confident and comfortable talking about mental health. But it’s important that you do, and the information in this guide should help you.Free By: Bupa UK View resource to their employers and being able to take advantage of the protections they have. It’s also bad for people’s mental health. To live a lie, or at least hold something about yourself in secret, in an environment that you will likely spend a lot of your time can take a toll.

A man is deep in thought.

The person I mentioned earlier who had a colleague that would not share a cup with them was an HIV advocate, so strong enough to challenge the behaviour he experienced. But he had the privilege of being a white man. An African woman living with HIV, who might be generally secretive about her HIV anyway (again, an association of stigma and self-shame) might be far less willing or able to challenge workplace discriminationDiscriminationSometimes people who have mental health problems are treated worse at work because of their mental health condition. This is called discrimination and, if you experience discrimination at work, you may have a legal right to challenge it. [Mind]Find out more. We have to ensure that every workplace is at least aware that discrimination on the grounds of HIV is not permitted, preferably in a way that shows employees that they can be honest with their managers about it, if nobody else. The best outcome is a workplace that challenges HIV discrimination – perhaps through marking World AIDS Day on Dec 1 each year.

A person with HIV in your workplace that has an undetectable viral load is no risk

This all brings me back to one of my opening statements about being on treatment and undetectable. Without going into too much detail, in 2013, one of the global bodies working around HIV – UNAIDS – defined a target. It said that by 2020 90% of people living with HIV should be diagnosed, 90% of those diagnosed should be on treatment, and 90% of people on treatment should be undetectable. Undetectable is a status that refers to the viral load, or amount of HIV, in a person’s body. Being undetectable doesn’t mean that a person no longer has any HIV in their body. It means that the amount is so small that the progression of the virus has been all but stopped. A person living with HIV that has an undetectable status now has the same life expectancy as a person without HIV, all other health being comparable. In the UK, we surpassed the UNAIDS targets in 2018, and edge ever closer to 100% in all three targets.

What’s more, we now know through major medical studies such as the PARTNER study that a person with a sustained undetectable viral load cannot pass HIV on! A person with HIV in your workplace that has an undetectable viral load is no risk to their colleagues. This has been a game-changer for the mental health of many people with HIV. We don’t want to pass our HIV on, contrary to what you might read. Now we know we can’t. But stigma endures.

Colleagues share a drink after work.

To conclude: stigma about HIV is damaging. In the ‘Positive Voices’ survey conducted by Public Health England in 2017, half of people living with HIV reported personal experience of a mental health problem. That’s about double the accepted national experience of a mental health problem. For a person that is living with HIV, stigma might lead them to stop taking life saving treatment – and by doing that, place others at increased risk if their viral load becomes detectable. We also know that HIV disproportionally affects gay men and African communities, populations that themselves report higher rates of mental health problems. To be a gay man or and African man or woman with an existing mental health condition and then to have an HIV diagnosis on top is something of a perfect storm.

We have to make sure that our lives and our workplaces are HIV stigma free as well as mental health stigma free. People like me, people who have been living with HIV for years, who are taking treatment and are undetectable aren’t going anywhere soon. So we need your support to keep our work environments safe and discrimination free. I feel lucky I’ve never faced workplace discrimination. I shouldn’t. Let’s work together to make sure no-one does.

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