Floating above water

Published 27, Jan, 2016

Jason R Cole says “It’s no secret that internalized stigma can surprise you” and make you the “sick person”, once again. How do you combat that? Read on.

Floating above water

One of the first things I am often lauded with is how open I am about my HIV status. I am open about my status for three distinct reasons: I believe my sexual partners have a right to make an informed decision regarding their sexual health, by knowing all the facts; because I believe the best way to educate others is through open and compassionate dialogue; and because I know that the law is not necessarily on our side. By our side, I mean us HIVers. 

That last reason is crucial, because it shines a light upon understanding the basis of internalized stigma: a subject that is as vast as it is painful at times. 

The first circumstance I became aware of my own internalized stigma was when I was given the standard package of info, after my confirmatory HIV blood test. There were many documents inside. Some included information on local support groups, AIDS Service Organizations (ASOs), even a crisis line. One of the most striking documents was on average life expectancy. I will not mention the number, but it made my heart sink. It was 2008 and so much progress had been made in terms of treatment and HIV primary care. I could not wrap my head around this figure. 

I felt like a sick person. I internalized it. It became a part of me, one that would lay dormant - for the time being, at least. 

People living with HIV may have a different source or sources of internalized stigma, but there are certainly a number of external factors that may contribute to this. Social situations can lend to this immensely and it comes in many forms. Perhaps it could be rejection at the bar, after a long, flirtatious and sexy conversation. Maybe it’s after being blocked on a hookup app, after disclosing your HIV status. Or even getting further to the point of the middle of the first date, you disclose your HIV status and there is an awkward silence that seems to last for days (if only for a few moments). 

The effects can be profound. When we feel we cannot speak our truth, because of the barriers we face, where do we go? What do we say? The answers are not so simple, especially since the questions are mired with layers of possible shame and guilt. The stigma can hit you hard, like running into a lamppost, leaving you dizzy with confusion and anxiety. 

It’s no secret that internalized stigma can surprise you, rising up, leaving you feeling as though you are floating above water. 

There are even times when the stigma can be reignited from within, via a very personal and intimate experience with a serodiscordant partner. In fact, most of my long-term romantic partners have been serodiscordant (meaning I am HIV+ and they are HIV-). 

Initially, I have had to enter into a conversation regarding the value of an undetectable viral load and just how low the risk of transmission is during sex. There are times when my former partners have already been informed of this important scientific fact and the discussion is brief. There have been many discussions regarding PrEP, as it continues to gain prominence as yet another choice in protection against HIV transmission. Any of these discussions for myself and my former partners have been valuable, as it serves to break down stigma as a whole. 

But as informed as I may be of the facts, feelings simply are not facts. I remember one particular man I was in love with. I even thought we were going to get married. We were in a monogamous relationship for a long period of time and for a while, quite happy. There were few surprises. I felt quite comfortable. 

"He turned to me and said: “I think we should use condoms next time.”"

One particular night after dinner, we headed into the bedroom and began to get quite intimate. When you love someone and there is a connection, it is hard not to become enthralled in the moment. It is as if time stops. And then it happened: we are having bareback sex. 

After the moment, well the very long moment, had passed - I found myself awaiting my partner’s reaction to a decision that was made in the heat of the moment, albeit consensual of course. He turned to me and said: “I think we should use condoms next time.” My immediate reaction was that of incredible confusion, because we were both there. I thought we shared something beautiful and connected. 

And there it was again. That same feeling I felt, that bubbles up to the surface whenever I feel my own stigma. That same feeling as when I started taking antiretroviral therapy. I was the sick person, once again. Then the questions started swirling around in my head, the ones I think about but rarely mention aloud: did I do something wrong, even though this was a consensual sexual act? How long can our relationship last? Am I better off dating someone else who is HIV+? 

For HIVers who can relate, this is when the guilt and shame can set in and take over - but only if we let it. I believe that we have a warrior’s heart. We are able to move through our days with an innate sense of strength - something that settled after we heard our confirmatory test results. We draw upon it when we need it. It helps us process the difficult emotions that come up related to our HIV status and our connections to others. It is that brave heart that has us greeting each new day with hope, optimism and faith. 

It is not an easy task to combat our internalized stigma. It takes concerted effort and most definitely, faith - faith that the stigma inside of us will lessen in power, each and every time we challenge it by saying “we are loved and we are loveable.” 

As we lighten up on ourselves, we are able to invite others in. The walls around our brave hearts begin to crumble. We owe it to ourselves to embrace the power of letting go. 

By loving ourselves, it becomes easier to love others. Therein lies so many possibilities; so many wonderful adventures as HIVers....