I recently "came out" with my HIV status on Facebook even though I've been quietly doing the advocacy thing in the background for a while now. Caring for my patients, using my writing, some small speaking engagements and such. Not hiding it per se- just not shouting it out. I just decided it was just time. I got things to do, stigma to fight and goals to accomplish. Things better done out loud and front and center. Can't even lie. It was emotional. Not really scary after all this time, but there was absolutely some anxiety. I am so grateful it was on my terms and not some foolish, petty human trying to control my narrative and tell my story. I have such empathy for women who get that choice taken from them. It's a choice that should come when you are ready.
I refused to stay stuck in guilt for having sex like a billion other people on this planet and I damn sure wasn't going to let people make me feel ashamed for something that could just as easily happened to them.
Early on in my diagnosis I had several, ummm, talks... meetings... summits... uh, let's call them "Girl, Get it Together Meetings" with myself. Not just about my diagnosis, about all the things I had going on in my life, but it seemed like all roads led back to IT. Most definitely in the beginning, HIV (and the idea of AIDS) was an "it".
It was the situation. Those damn acronyms. Calling it HIV was making it too real. Calling it "the virus" seemed to me like I was trying to downplay it on some level which felt like denial - the flip side of which was calling it my condition, or my HIV, was giving it too much power and presence in my life. That may seem confusing or indecisive because really- it was! HIV was some sort of twisted lesson I was supposed to learn from. It couldn't be MY anything because I didn't want it! If you can't define something you can't deal with it.
An HIV diagnosis is complex because it's layered. Worse, the layers are some of the most difficult emotions to process. Guilt and shame. Acceptance vs denial. Societal stigma and internalized stigma. Wrestling with being enough for your damn self, let alone good enough for someone else. I always try not to cuss when I write these, but hell, that's enough to justify a cuss word or two, don't you think?!
Initially I couldn't figure out which terms I wanted to face HIV on because I couldn't even decide if I believed all the people telling me I wasn't going to die at that point. That was the stickler - until I came to terms with the mortality of HIV, my mortality within the HIV diagnosis, naming and claiming it was moot. Getting it together was about learning to live without worrying about dying. You can't live a fulfilled life worried about dying. Mortality is not everyone's primary worry. For some it's the layers of guilt. For some it's shame, and for others it may be remorse. Getting stuck in any of those emotions is traumatizing and can take years to work through and people process differently. For example, I refused to stay stuck in guilt for having sex like a billion other people on this planet and I damn sure wasn't going to let people make me feel ashamed for something that could have just as easily happened to them. I don't even entertain or waste emotion on people who try to take me down that road. I know people who have given up sex for a myriad of reasons leading back to their diagnosis. Shame, fear of transmitting to someone, punishing themselves; while I understand the emotions and thought process behind it, that's not my path. That's a healthy part of connections and intimacy between people and I choose not to give that up.
Ladies: don't get so caught up in the anxiety of disclosing your status to someone that you miss the fact that they don't even deserve your story.
Yet and still, for a time I struggled with the anxiety of disclosure. It felt like trying to sell the good parts of myself while sugar coating the bad. What I had to learn was that disclosure is a continuum. It's a sequence that should be linear, but isn't. Sometimes it's easy and sometimes it's hard; it often doubles back on itself and ebbs and flows.
When I disclosed on FB a man I had been "talking to" (getting to know), decided he didn't want to deal with me anymore. Mind you- he KNEW my status. We had already talked about it. Already talked about U=U, my having an undetectable viral load and therefore the HIV virus being untransmittable. He was good with that. Except now that what he perceived to be everyone knowing- he couldn't handle it. He was worried about people thinking he had "it", or what they would think about him being with me. [Insert side eye emoji here] Red flag much? Glad I saw it now and not later. That's an important side note of disclosure. *Ladies: don't get so caught up in the anxiety of disclosing your status to someone that you miss the fact that they don't even deserve your story. Our goal needs to be that we are loved WITH HIV NOT DESPITE IT! Your worth is not based on their acceptance or rejection of your truth!*
As far as this particular dude - I don't even have the energy to waste on that kind of foolishness. Boy, bye. That's his growth path, not mine. I am not about to let anybody take me 10 steps back from the strides I've made. In the beginning I had hold-my-breath-anxiety about telling someone my status. Thank the tiny black baby Jesus I have gotten over that. Those changes came over time as I subconsciously and gradually just started LIVING. Not worried about dying, not worried about who might find out, not worried about acceptance- just choosing not to let MY diagnosis change MY vision of me.
I was understandably preoccupied with what my diagnosis meant to and for me. You may be too. The reality of it is that like most everything in this life, what you will it to be, is what will be. Things don't always come together in one big epiphany. Consider dealing with a breakup; the hurt, anger, and loss of trust don't all heal at the same time. One usually follows the other and sometimes you have to trace back to one or the other to close the loop. At this point "It" is HIV. It's mine. My little symbiont virus that has made me stronger, a little smarter and a lot more patient with myself and other humans. It didn't kill me or ruin my life. Coming out is not for everyone and that's okay. Even though humans are exhausting and sometimes mean, I feel a certain amount of freedom. She/me/her and hers, this girl? This girl is getting it together.
I had a fear of dying in the
I had a fear of dying in the beginning. I was pregnant and terrified I wouldn't see my baby grow up. I didn't believe them either when they told me I would live just as long as anyone else. Matter fact I was angry lol I was felt like they were lying to me trying to make me feel better. It wasn't until I started taking trainings and seeing the facts and numbers for myself that one day I FINALLY felt like, I'm going to be ok.
I admire your strength and confidence. I'm also not necessarily hiding it but not out with My status completely either. I hope one day I can get to the place you are. Thank you for sharing!
Thank YOU for sharing that with me. Truth is, even if you never go "public" - that's OK! I tell people quite a bit that if the only person you ever speak up to about your status to is your personal doctor, you're still an advocate. What you say about your care translates to the next woman they take care of. It matters! <3