Personal Blog PLHIV ALI with Art
Hi, I’m Raza, a young non-binary from Pakistan. I have completed my post-graduation and am planning for a PhD from a PLHIV friendly country because I am from the PLHIV community. I am not embarrassed to disclose that but it wasn’t always like this.
There were bad times when I was not well mentally and physically. I remember that it was a kind of normal thing for my family to take me to the Emergency Room because of high fever even after getting medications. Sometimes it disappeared for a few days and sometimes for months. It was not just the fever, there were also other complications like bloody diarrhea. I was afraid of eating or going to the toilet as medications were not helping for long.
I remember the day I was diagnosed with HIV. It was in April 2019. I wasn’t afraid of it at first until I witnessed a 15-year-old young boy dying of AIDS in the HIV/AIDS department of the hospital during my first visit to get ARVS. His body was dark, dried and lean on a bench 3 feet to where I was sitting. I did not want my life to end up like that, nor the lives of other young people. The death of this boy could be prevented if diagnosed and treated on time with support of the community. I spent months wondering from where I might have contracted HIV but never got the answer. Thinking about that was a burden on mental health as there were multiple instances where I might have contracted it, so I eventual left thinking about it.
I came to know after 4 months that my ARV formula wasn’t working because of high viral load in my reports. These were the days when I told my close ones about my HIV. To my surprise, they were supportive. Here in my city it takes almost a month to get viral load results as the ART center sends blood samples to the capital city and reports come back only after 15 to 30 days. I don’t like these delays not only for my own but also for other PLHIV for whom this time can be critical. I still have marks of blisters I got on my body due to high viral load and reaction of my 2nd ARV formula which I had to leave after a week. This was the time I needed support from my family and friends and fortunately, I had that, unlike other PLHIV people who beg for support on online support groups. Becoming part of online PLHIV community groups gave me a deep insight on how difficult it is for PLHIV, especially young people, to get support. I tried my best to support other PLHIV by talking to them using online platforms.
Most people believe that people living with HIV just have to take one tablet a day but that’s not true as I have to take six tablets a day; 3 in morning and 3 in the evening. This is the 3rd ARV formula. I have been taking these for more than 9 months. It seems to be working as I have gained my lost weight and there are no more complications. However, I’m not sure because the viral load test report can prove that but in this COVID-19 situation ART center has delayed my viral load test which was supposed to be taken after six months.
I had worked only part time as an SRHR youth advocate before knowing my status but devoted my full time and changed my field of work after knowing my status. As my previous workplace didn’t have a friendly environment for people with special needs, I left it and am now working for HIV/AIDS prevention in my town. I’m working in a community-based organization openly as PLHIV to contribute my part to stop new HIV cases among young people. I openly talk about HIV and AIDS and how we can end discrimination and stigma associated with PLHIV on which many SRHR activists also feel shy to talk. I believe my open discussion can help, directly or indirectly, to prevent a new HIV case. As the 1st day on my ARV I made my mind to work to prevent any other young people from dying of this preventable disease I started to make my work more sustainable by using online digital and social media for advocacy of HIV/AIDS among young people. I’m writing blogs and starting conversations among young groups as it may prevent a death in future as close as 3 feet to me.
-Ali Raza Khan (PAKISTAN)
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