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Personal story: Dembe

If I had not gone for the test, I would be in the grave, but now I am happy in my third year on ARVs

Portrait of African young man smiling happy with colorful wooden wall in the background
Photo credit: ©iStock/Juan Alberto Casado. Photos are used for illustrative purposes. They do not imply health status or behaviour.

"I found out my HIV status after getting very ill with a lot of lymph nodes on my neck. I had a lot of questions on my mind about where I could have contracted it from. I shed all the tears I could.

The illness was claiming my life, to the extent of developing abdominal TB. I became more ill and bedridden. I couldn't do anything on my own, not even eating. I thought I was going to die simply because I was HIV-positive – a misconception I’d had ever since childhood.

But when I was enrolled on ART, I got much better. I joined a peer support group and now I cope with this new life, to the extent of advocating for it.

All this happened because my mother gave birth to me in the village, not the hospital, and from then I never tested for HIV. So, for 17 years I have been living with HIV in my blood. If I had not gone for the test, I would be in the grave, but now I am happy in my third year on ARVs and represent Young People Living with HIV/AIDS in Uganda."

What we say

Lots of people have misconceptions about what it means to have HIV, but with the right treatment and care, people with HIV can expect to live just as long as those without HIV. Getting support is also really important when you have HIV, whether it’s talking to your friends and family, or other people living with HIV. Joining a peer support group, like Dembe did, can help you to meet other people who are going through a similar experience.

Do you have your own story to tell? Click the link to share it with us!

These personal stories have been submitted to us anonymously by individuals who use our site. Some of the stories have been edited for clarity purposes and names have been changed to protect identities.

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  • Last updated: 14 November 2022
  • Last full review: 01 March 2022
  • Next full review: 01 March 2025
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