Living with HIV: to disclose or not to disclose?

When Jackline was sexually abused and infected with HIV, the health professional who diagnosed her, disclosed her status to her family without Jackline’s consent.

When Jackline Kemigisha was sexually abused at the age of 15 and infected with HIV, the health professional who diagnosed her, disclosed her status to her family without Jackline’s consent.

This was a result of a policy requiring parents’ consent before initiating antiretroviral therapy for someone  who is under 18.

As a result, Jacqueline suffered stigma and discrimination from her family. Her father refused to pay her university fees arguing she was ‘’a moving corpse”. She finally left home when she was 19 years old and supported her education with incomes from petty jobs, including working in local gambling shops.

Fear of disclosure fuels spread of HIV

When Jackline disclosed to her boyfriend and suggested they go and see her parents – as a step towards getting engaged – her boyfriend put an end to their relationship. This is the third time this happened to her and she finds it frustrating.  She felt ‘like being off the list of those falling in love’. Jackline believes her failure to get married is because she is honest about her HIV status.

Fear of rejection or frustration out of rejection can lead people living with HIV to not disclose. For Jackline this is one of the reasons behind current HIV infection rates.

Jackline, 29, lives in Uganda and has written an open letter addressed to heads of states of the USA and Uganda, as well as to the executive director of UNAIDS, PEPFAR leadership and other HIV stakeholders, which she also posted on Facebook. She says: “Check the current infection rate and see if I am not in that age group. Mainly between 15 to 30 years. It’s a reality. This is the reason behind the current new infections. We are tired of disclosing and being frustrated afterwards.

“When we are treated like this, most young people make very bold decisions of never disclosing again and as long as they are happy with their husbands and wives, the results will be found out later after even having children. Most young people are already frustrated and not ready to talk about it anymore. But when we try, this is what comes out of it.”

Jackline’s advocacy message

People living with HIV go through many situations where they are faced with the decision of whether or not to disclose their status. In a number of circumstances they find themselves trying to balance honesty with protecting their right to privacy.

As an HIV activist, an advocate and a youth mentor, Jackline takes advantage of her experience to provide advice to her peers. To young people living with HIV she says: “Do not allow anyone to take advantage of you because you are HIV positive. But when such happens, have faith in your heart that this one wasn’t meant for me. Mine will accept me regardless of my status, when the right time comes. But, do not revenge!’

And to young people who are HIV negative she says: “Guys and girls, please, be very careful. You will fall into the arms of someone already frustrated like I am, who has sworn never to disclose their status again and by the time you discover, you will already have more than two babies. That’s why you must be either faithful or have all the information before you engage in any risky behavior. I love you all and I love your lives. I want you alive without this kind of frustration. That’s why you must take care. But then, you have to support each other regardless of status to stop new HIV infections.”

Jacqueline concludes: “Remember, the choices you make in your life today determine the lifestyle you will live tomorrow, so be the change you want to see.”

Read more about HIV and young people

Photo caption: An HIV anti-stigma co-ordinator brainstorming ideas at a workshop in Zambia, 2006
© Nell Freeman/Alliance


  • comment-avatar
    Alice 4 years

    Wow! This is a very powerful story! This lady is such an exemple of strength and courage. Well done to the KC for this beautiful story.