A couple of weeks ago, I attended a community town hall meeting hosted by a local AIDS organization via Facebook live. The purpose of the meeting was to educate and inform attendees about HIV/AIDS transmission, local infection rates, prevention methods and other pertinent information every person should know. The panel included people living with HIV/AIDS, service providers, community activists and well-informed allies. The overall message of the meeting was "Get Tested" and consider starting PrEP for prevention. As we commemorate National HIV Testing Day today, I am reminded of the bad old days when I had to wait three weeks for my results. Those were the longest, most tedious weeks I had ever experienced. Today, with a quick finger prick and 20-40 minutes, someone can know their status. Although testing and prevention methods have advanced, I feel safe in saying that receiving a positive diagnosis still stings now the way it did seventeen years ago when I tested positive. It is a life altering event that has the power to either destroy or catapult a person into a life they never imagined possible. I have seen both scenarios play out. I have seen people like my mother become so engulfed in and overwhelmed by the shame and fear of the diagnosis that they literally stress themselves to death. On the other hand, there are those who discover an inner strength that pushes them beyond any and all limitations they have ever set on themselves. For these people, a positive diagnosis becomes a fire that ignites a yearning to live freely.
As that panel discussion came to a close, one of the panelists, an HIV-negative service provider, urged attendees and listeners to get tested. She reassured them that the test itself was painless and that knowing one's status is essential to the overall well-being of individuals, families and the community. Her next statement almost threw me out of my chair. "Even if you test positive, it's a breeze. We have everything you need to help you deal with it." "An HIV diagnosis is a lot of things, a breeze is not one of them," I responded in the comments section.
Unless you've experienced the horror of being told you have an incurable, socially unacceptable virus that can potentially kill, you can't begin to understand how dangerous her statement was. I'm sure service providers offer the best care and services they can to newly diagnosed clients but at the end of the day, they go home to their families negative. The client on the other hand goes home to a family and a community that is most times ill-equipped to support a newly diagnosed friend, family member, co-worker. Being diagnosed with HIV/AIDS can be a lonely, heart wrenching experience that I wouldn't wish on my worst enemy.
Sure, we need people to get tested and know their status but wrapping a positive diagnosis in red ribbon and referring to it as "a breeze" is deceptive. I'm sure the service provider thought she was being helpful and is so confident in the work her agency does that simplifying a diagnosis doesn't seem like a big deal. Yet, from where I sit, her statement was problematic at best. Service providers see clients twice a month, if that. The other 28 days of the month, 12 months of a year PLWHA are trying to live the best lives we can while grappling with the stigma, internalized shame, fear and potential rejection that often comes with an HIV/AIDS diagnosis. Just because I have been able to use my HIV/AIDS status as a springboard into a life I never imagined, I wouldn't dare suggest that this is the case for every PLWHA. The only reason my journey has been somewhat bearable is because I have a God, a family and support system who loved me through the grueling process of accepting the diagnosis. Not every person has that kind of love surrounding them and to insinuate that this journey is painless is, in my opinion, irresponsible.
