I was recently at a community meeting where various leaders in HIV services gathered to figure out, among other things, how to end HIV stigma. Whereas the working group’s other agenda items were more concrete, the attempt to end stigma struck me as a rather awkward task to get my head around. After all, I have been working on various anti-stigma endeavors for the better part of a decade and I still don’t have an easy answer to what HIV stigma actually… is.
It’s always been difficult to fight HIV stigma because it is an ever-changing foe. The prejudice and misperceptions about what it means to be living with HIV have changed as quickly as the drugs that are used to treat it. So, in the age of PrEP and U=U, exactly what impact does HIV stigma have today?
In my observation, it is the misplacement of sympathy, or worse, pity, for those living with HIV and the impact and ramifications it can have. Stigma isn’t just committed by those who are negative but by those who are positive themselves. Self-loathing is often one of the biggest symptoms of a person’s diagnosis that is often left untreated. There is no reason whatsoever for a person to feel ashamed or guilty for contracting something that virtually everyone has been at risk of at one time or another. Still, it is often an inevitable by-product of the systems of care we have in place.
It isn’t enough to tell someone they are going to be “OK.” Being just OK is not something that anyone aspires to be. It is my ultimate wish that every person who is newly diagnosed is immediately told they are fabulous and flawless, and that this won’t stop them from being the best person they can be.
I can only imagine the many ways I could have used my own diagnosis as an excuse for being too afraid to go after what I want.
I see this in so many who struggle with overcoming the weight that HIV can be. To this day, I remember the first time I told my best friend about having HIV, to which she replied, “Phew! At least it’s not cancer!”
As odd a response this may have been, it’s the only one that stuck with me. I told countless others after, but I adapted her approach instead of my sobbing ones. In doing so, it didn’t just help me, but it helped the people I confided in. It took the air out of it, because the truth was that my health was totally fine, and I was going to be fabulous.
Someone who feels like they are undeserving of love or too afraid to open up to their friends and family can easily slip into a place of self-pity. This type of stigma can be somewhat of a crutch that can hold so many back from living the life they absolutely deserve. A life with HIV is now limitless, but the failure to recognize this reality is a direct result of stigma. Whether it is a caregiver who treats a patient as a victim, a friend who walks on eggshells, or an HIV-positive person who benches themselves in the game of life when it’s only just begun, this is how I view the stigma that keeps us from moving forward in the fight against HIV.
HIV is now highly manageable and easily treatable. Full stop. So many want to argue that this isn’t the case, but when only discussing the virus, it absolutely is. However, such barriers like a lack of resources, racial inequities in care, and the misplaced perceptions of severity are keeping so many from getting their limitless life back.
People don’t need you to feel sorry for them. What they need is stigma-free access to quality care that is delivered by people who understand them. That is how we fight stigma. That is how we end HIV.