My decisions about disclosure

I have had nearly three decades to ponder and fret over the issue of disclosure.

It is mind bending to be aware that I work with clever young people whose whole lives span a shorter period than my life with HIV, and that I was older than many of them when I acquired the virus. Jeez.

Across the years my attitude towards many HIV related matters has shifted and transformed depending upon my circumstances and the changing fields and layers of context. Some things though, seem not to have changed for me at all.

Front and centre is ‘disclosure’, with its direct relationship to overt and the more insidious covert stigma. My disclosure decisions are predominantly clear-cut situations that present an obvious choice, and it is rare for me to disclose. However, right now I am reflecting upon the blurriness – those tricky bits around consideration of the big revelation that create a conundrum for me.

My sometimes immovable position of non-disclosure sits uneasily with the fact that I’ve also grown tired of the need for caution, and any HIV disclosure I enact these days is likely to be spontaneous rather than much thought through. Regardless of occasional clumsy disclosures, I do always give at least a moment’s thought to a lesson I learnt early on. Mindful of having to live with myself after any disclosure, I firstly look to the motivation for why I am considering disclosure  – here at least lies clarity! Then should follow a risk assessment, and after weighing risk against potential gain, landing cleanly on a decision. Voila! (Oh, ummm then…now where did I stash that damn crystal ball?)

Okay, more on motivation. Mine always seems to be about either, A) aiming to obtain superior health care, in both traditional and non-traditional fields, due to my holistic beliefs around wellbeing, or B) seeking deeper connection – and this is where my focus lies today and primarily where the conundrum pops up – more skin in the game.

The recent COVID-19 pandemic has starkly accentuated the impacts on wellbeing when people are separated. Listening to a podcast, I recently heard a psychologist say that humans are the “groupiest” species on earth. We need togetherness and various kinds of human connection to survive and thrive. I experience enjoyment through social and work activities, and I am often surprised by lovely, unexpected, shared moments with people who have no idea that I have HIV. But still, these days there’s that niggling…missing…feeling of belonging? Or is it missing being fully seen? I’m not sure. They are probably connected. I do know that both concepts require other people knowing me more than most do.

While HIV does not on its own define who I am, my HIV story is woven into the shaping of me over 29 years. Intertwined with all the other threads and bindings that make me, it is inextricably interwoven with how I am in the world – how I move through it, and face up to it. It is a colourful, tragic, magnificent and terrible part of my life. Can’t ignore it. It changed the direction of my life, and it continues to figure in decisions, big and small. But most of the time it is hidden, ignored.

Here I hit the double-edged situation, that is, the conundrum. Of course having HIV is private. It’s considered variously as an illness or a condition, and it sucks for sure. People can be weird about it, and judgey. They can hold themselves separate from you – GRRRR. You can be sick, or not, and basically no-one can get things right for you a lot of the time. And I’ll freely admit to being hypersensitive to judgement, pity, aversion, rejection, or diminishment of any flavour, and maybe I have read things wrongly at times. I could go on…

and yet…

…getting HIV is also an occurrence – and to ignore it wipes out one of the most profound influences in the trajectory of my life. HIV has forced me to stare down my greatest fears and shortcomings, to mine previously unexplored strengths, to learn how to live with vulnerability and constant ambiguity, and to hone, deepen, and clarify my values. Seen like this the experience is not unlike a crazy, life changing, badly-prepared-for overseas backpacking trip into volatile countries, full of potential hazards, illnesses, unexpected disasters, thrills and wonders, and concluding with fabulous dinner party stories. Sigh, I know that living with HIV is not a holiday. I also know that when I’ve risked sharing my HIV status in the right context and with the intention of enriching a friendship, it has usually been well worth it. Without weaving my HIV storyline through the complexity of my greater life story, many of the wonderful, meandering, intense conversations I share with close friends would not be possible.

Essentially, my decision about disclosure rests on whether to remain superficially engaged, which is sometimes the right choice, or to cross the gulf. Taking the awkward middle ground means I am diluted, particular other events don’t make sense, and I am always on watch remembering to be consistent with previous conversations. Although sometimes unavoidable, I find that road exhausting and unfulfilling.

The common adage that you are the sum total of your experiences seems a little relevant here. A viewpoint I prefer because it offers more choice, is this: at the end, the sum total of all the things that you have paid attention to will have been your life.

I take this to heart. I will muddle along with my conundrum, paying attention to the good things – all the moments of delight, tiny and grand, to be found in ordinary days. I will notice and offer kindnesses and generosity. I will listen and share. I will fail constantly at all of this and many other things, and that will make me cranky. I will expect a lot of myself and laugh at my ridiculousness. I’ll pay attention to and show up for those people who do see me and love me regardless, and sometimes we’ll get out of tune. I will take care of myself, keeping an eye on how resourced I am, from where I can draw strength and nourishment, and where I can offer it.

There will always be pros and cons to disclosure. Conundrum or not, I will continue to take risks when it feels right because inviting deep connection with others is something I will always prioritise. And if it all goes belly up, it turns out I do have people to call on. Glad I took the risk.

– Maria

Published in Talkabout #209 June 2024