In the early days and months after learning we’re living with HIV, some of us feel shame and guilt and retreat into our shells. For some people living with HIV (PLHIV), this experience can leave us feeling isolated and vulnerable. It is usually our friends and connections with other PLHIV where we find support to move through feelings of fear and isolation.
Even after finding our feet, stigma can undermine our self-esteem and impact our newly forming self as we adjust to living with HIV. Stigma is that sense of disapproval about HIV. Stigma can be blatant and unmistakeable or something very slight, a look, a step back, a shake of the head, a word, or silence. Stigma can show up unintentionally in the ill-informed words of a friend, relative or a stranger. It can be found in a poorly crafted piece in the media, in the services we access, and even in our place of education or workplace.
The workplace is a significant aspect of many of our lives and a place where stigma can fuel discrimination. When you have worked towards a career or if you are in a job you love, discrimination based on your HIV causes real fear and anxiety for PLHIV. That said, there are very few professions or workplaces where you are required to disclose your HIV status. There is no need to disclose you’re living with HIV and many of us never tell the people we work with. Some of us feel that telling our employer we are HIV positive is the right thing to do and by disclosing, it provides an explanation for the doctor’s appointments or gives us extra support without being in fear about our diagnosis. In reality, neither of these are required. A medical certificate is enough to attend to your appointments or short periods of time off.
If you disclose to your employer, the response can vary just like anyone else you’ve shared this news with and range from being very supportive to unsympathetic. Sometimes an accidental or intentional breach of your confidentiality can happen. Remember, always remain in control of your disclosure and only tell someone you think will treat this information with respect and care, someone you feel you can trust. Regardless of your reason to disclose, your employer’s response should always be one of support and understanding. Unfortunately, ignorance and fear of HIV is still around, yet this is no excuse for a poor response. This poor reaction in the workplace can leave you scrambling to make sense of things and to be on your own in this battle can be an isolating and frightening experience.
As we all know, there are many negative effects of stigma, even for those of us who are empowered and resilient, can hold painful moments which cut deep and are lasting. Sometimes it is easier to walk away rather than challenge an assumption, or pick a battle. Sometimes the effort to object to a friend’s inadvertent remark is just not worth the drain on our emotional well being. There can be times when stigma turns into unfair treatment, or discrimination, which often poses real threats to our security or personal safety.
Here at Positive Life NSW and also the HIV/AIDS Legal Centre (HALC), we often hear from PLHIV who have struggled to manage workplace HIV stigma and discrimination on their own and haven’t reached out. Even though we understand your reasons for doing so, PLHIV in this situation can end up being mistreated in the workplace, or having alterations to their job description or working under restriction that are illegal. If you are in this position or just need some advice, seek support sooner rather than leaving it to ‘work itself out’.
All workplaces are required to have standard policies and procedures in place to ensure all employees have a safe, protective and secure workplace and ensure everyone within that workplace is protected and treated the same. Employers are required to make reasonable adjustments for all employees where appropriate. It is unnecessary to adjust an employee’s work environment or practices and procedures simply because they are HIV positive, unless they work in one of the very few areas of the workforce where they are required to disclose their diagnosis.
There are severe penalties and sanctions for workplaces that discriminate against employees who are HIV positive. There are many laws to protect us from discriminatory behaviour, or from the disclosure of our HIV status without our consent. These laws give us the power to ensure our basic human rights are protected. As employees we can get support to empower us in ensuring our rights are upheld, especially when it seems the balance of power is in favour of the employer.
If your confidentiality has been breached and your HIV status becomes known within your workplace, or you feel pressured to disclose your HIV status at work, contact either Positive Life NSW on (02) 9206 2177, 1800 245 677 (freecall) or HALC on (02) 9206 2060 immediately for support.
We can advise you on your rights and responsibilities helping you and your employer to negotiate what can sometimes seem like a complex path. The outcome is often better when you have the right support and advice to work out what to do and what your options are.