I never thought about death until I received my HIV diagnosis. I had made plans to get my degree, start my career, get married, and possibly have children. But I tossed all my hopes and dreams in the trash that fateful day in September 2021.
I was in the lab with a technician in a small hospital. I stared long and hard as the first stripe formed, then the shock came when I saw the slow faint formation of the second, which meant I was positive. Suddenly I was sweating; the room was too small, almost claustrophobic. I was suffocating.
“It took me a year and a half to accept that HIV could not limit me.”
Until you are diagnosed with HIV, you will never understand how that first moment puts you in a state of grief: all of the enthusiasm I had previously possessed for life was suddenly gone. In its place, shame, guilt, loneliness, and shattered dreams overwhelmed me. I thought I would be dead within a few years, so why make any plans at all? Instead of grieving a lost loved one, you grieve for yourself. Denial, anger, bargaining, and depression all take over the smidgen of hope you might feel. Sadly, because of enduring stigma, society has made it so that to most people living with HIV (PLWH), acceptance remains a continuous journey that takes a much longer time than it should.
It took me a year and a half to accept that HIV could not limit me. “Your world is still vast,” my counselor promised. “You can get the career you want, be in that relationship you dream of, and even have children. All you need to do is adhere to your medication.” It took me some time, but eventually I learned that she was right. After my diagnosis, I started taking antiretroviral medication, which at first entailed two pills a day and now only requires one. Within eight months of my diagnosis and after I’d started taking the effective HIV drugs, my CD4 count, which is a measure of the strength of my immune system, was skyrocketing, and my viral load was already undetectable, which meant I could not pass HIV to another person.
But the realities of living with HIV are still grossly misunderstood and stigmatized by others. Before my diagnosis, I was going to travel the world – I planned to become a stewardess for an airline. And I still pursued it a year after my diagnosis. I vividly remember my interview to determine my admission to a six-month training at a local airline. I learned that I’d have to take a medical exam, but “this was just formality,” I was told. I never thought my HIV status would be an issue. A month later after my interview, though, I received my rejection email. It was short and straight to the point: I was not accepted because “I failed my medical examination.” Failed. Failed!? To say I was dumbstruck is an understatement.
When I was told I wouldn’t get my dream job, I wanted to blame someone or something. The person who gave me HIV, these restrictive policies, even myself for getting HIV. I could feel the grief coming back to me. I was fighting the monster of bitterness.
I started digging into why this had happened. Could my HIV status affect many of my other plans of adventure? I learned that it could. Apparently, many countries can deny entry to people with HIV – including Russia, Dubai, and Australia. The internet says these places “may deny entry,” as if there is a choice, but on the ground, the reality is much starker. Officials don’t care if you’re carrying your six-month medication, or if your viral load is Undetectable=Untransmissible. In some countries, you can be deported.
Although countries like the United States don’t have such restrictions, PLWH still face stigma. Some states, for example, still have laws that treat the medical condition as a crime.
And it’s not just traveling. Many countries still require people to take HIV tests to work in certain industries like hospitality, and may not offer employment to PLWH regardless of whether they are untransmissible and asymptomatic. Despite having the qualifications for my dream job, my diagnosis prohibited me from landing it.
Around the same time of getting the devastating news about the job, I was inundated with messages on social media trying to raise awareness of HIV. But the message of those postings was that PLWH are dangerous – that others should avoid interacting with them.
“The fact that it is still highly stigmatized means that HIV rates have been rising in the last decade – something that should absolutely not be happening.”
And that’s when I truly realized that even decades after scientists have found ways to suppress it, HIV remains highly stigmatized. The fact that it is still highly stigmatized means that HIV rates have been rising in the last decade – something that should absolutely not be happening. No country with access to antiretroviral therapy should be reporting new infections. And countries should have reached the UNAIDS 90-90-90 treatment target, which aimed, by 2020, to have 90 percent of all people living with HIV to know their status; 90 percent of all people diagnosed with HIV receiving antiretroviral therapy; and 90 percent of people receiving ARV therapy having viral suppression. But the global community failed to meet all three goals.
I have experienced firsthand society’s hatred toward PLWH, instead of the disease itself. People warn others about us, laugh at us. In most postings about HIV that I have seen online, social media users openly discuss PLWH as people to be avoided and cast out.
But amid the rejection and hatred, I can feel the fear, too: the fear that being HIV+ is a death sentence. It was the same fear I had before I ever thought I could be directly affected. It is this feeling that can keep individuals ignorant of how HIV actually works.
Despite all the stigma, I must say I am luckier than most. My partner is among the kindest individuals I have been blessed to know. He always takes the initiative to continue to learn about the virus as much as he can. I never feel any stigma coming from him; I never feel unloved. We also have plans to start a family soon. “We can,” he tells me. My low viral load would not place our baby or him in any danger, thanks to the freely available ARV medication I take.
As a PLWH, I have made a decision to live – and this means taking care of myself and my partner to ensure no chances of reinfection.
I believe it will take open-mindedness, a willingness to learn, and kindness if we really want to stop the spread of HIV. Choosing to use supportive rather stigmatizing language and policies is how we begin to reach the 90-90-90 goal. My partner has shown me that it is possible to have an open conversation and take initiative to educate yourself instead of spreading fear, hate, and panic. Only then will more people be willing to disclose their HIV status, seek testing, and adhere to treatment without fear of social consequences. It is a pity we have not grasped the enormity of this yet.
