I was on the bus one day and overheard a couple of mature women talking and laughing about “if I knew then what I know now”, and aside from making me smile out loud at their light hearted reverence, I thought about my pre-diagnosed self and what I would say to myself back then today.

Later that day I was checking the news on Twitter and I came across a comment on how “normalizing” U=U is for some, and yet the stigma, silence and shame still reign true depending on where in the world you live, and the culture around HIV in your community. So, to inspire myself and find a starting point, I posed a question on Twitter: What message would you tell your undiagnosed HIV positive self?

In this blog entry, my own perspectives have been enriched by some of the amazing comments and voices I heard from women all over the globe.

I start with myself and the message I would send to my undiagnosed self about what living with HIV would be like, and what would be different if I knew then what I know now. “The stigma and shame will take every bit of courage and strength you can muster to fight back; this is not solved with meds; everything will change! Be patient and kind with yourself, those who are left standing beside you will be there for a lifetime.”

Back then, I thought those around me would simply be supportive or maybe send flowers, like you do when someone you care about gets diagnosed with a life altering condition. Maybe bring soup and talk, or just listen, without asking questions like “How did this happen?” “Where did you get it?” or “What are you going to do now?” Would you ask that of someone diagnosed with a different condition, like cancer?

I didn’t expect the barrage of questions in a whispered tone and then the loss of so many that I had considered friends, as well as family. I would tell myself to not be so needy or to expect to be treated like you were sick, because some people just can’t see past the stigma, no matter how solid the science is.

Many of the responses on Twitter and in private direct messages were about this surprise in the early days of their diagnosis. Shamed and silenced. They expressed how much they have changed since then. I heard women talking about getting tested before it’s too late, because they hadn’t considered they were even at risk. “There is no shame in the game”. “Women often find out at the end of their lives, you're not to blame if you're HIV+, stigma exists - don't let it win

"When will we just learn that love is love? Really, truly, I mean that. It never sounds different or writes differently, or for that matter reflects differently, or dances differently. When will we all look in the mirror and want to see ourselves, love back and learn more about each other rather than judge each other, and just fucking love each other?"

I heard women expressing that it's all fine and dandy getting a full sexual MOT after a relationship breakdown, and I had to ask what an MOT was!! Funniest part… “It does take two, you’re also missing a vital part of this safer sex checks”. So fu**ing funny to know it had to do with Muppets! This simply stands on its own.

I think the things we learn are dependent on our ability to actually listen and change. It’s not fair, this thing called life. Nothing like a life altering condition to get you moving for water and medicine. And yes, what if you were born that way?

“To have been born with HIV in my country very few have any fu**ing idea what this means”.

And love.

“To my undiagnosed 11 year old self (I had actually been diagnosed since I was 3 but my status was disclosed to me later) you will learn wonderful things about yourself, you will be happy, you will love and be loved. Friends will understand and support you, you are loved as you are.”

When will we just learn that love is love? Really, truly, I mean that. It never sounds different or writes differently, or for that matter reflects differently, or dances differently. When will we all look in the mirror and want to see ourselves, love back and learn more about each other rather than judge each other, and just fucking love each other? Oh right, that’s still a question in the climate of politics living with HIV. (Why isn’t there a much bigger question mark behind it?)

“Undiagnosed but HIV+ was a 3 month period for me...looking back from there would be to tell myself to always insist on both sides getting tested before any relationship. Looking forward from there - HIV stigma seems to be more in me than in those around me.”

Not all stories of women living with HIV are positive.

“Only 6 weeks between the sex and diagnosis. I would tell myself....dump him, get as far away from him as possible. He is toxic. You do not need to stay with him just because you are positive. “

But some are.

“You will find your inner strength to get through all that your diagnosis will throw at you - stigma; discrimination; rejection from your mother; the deaths of your partner and friends; ...and you will become a long term survivor….”

So, just for me, I feel, and I think, and I remember, and when I feel really brave, I write. Although, given the choice, I would always rather dance. But I did write, even then. To share something I wrote then …yes, I could do that.

This is a collaborative poem that I wrote around the time I was diagnosed, 2008. This was for a dance and theatre live performance at the time. It felt so raw to read it again and again, so far from where I could have imagined myself to be now. Stronger for it.

The Destiny of Stone
(... SAND...)

This
this is,
this is the way...
so, this is the way it works?
It works like this.

May 30, 2008.
I was born

shot out of a cannon into a wall
the other question, always,
the other other
and now this side,
and this is,
(this is, this is - echoed live)
the way it works,
it works like this...

The heart is a reversible organ, in that it both beats and can be beaten.

And as it is beaten
it beats, (beat, beats - echoed live voice fade out)
Inside, outside, inside, (looped ?...extended sound)
under, over, around,
counts measured,
the hope of cells
Positive in irreversible time
in stone....

The longest journey, a single step,
say everything is fate
say so,
So
one fate (fuck – echoed live) of a drop,
does not answer where to fall, or rise
rise and fall?
Say so

What place of this vast body shall i head?
My heart thickens under its labour
waters climb, rush and rise further

flush, a band, abandon
let hope drain
Underneath the skin
through the muscle, in my blood
in the marrow
fighting deeper inside the bone
separated, severed, broken
tossed into the big world of this body
Evidence, sure and neglected, like a kitchen cloth...
dry moulded, and colourless,
i am a mathematically significant drop,
and so, i rise
inexplicably with the blue green dawn.
I rise and rise
and rise
up,
and somehow all of the singularities rise up...

If i stepped very, very careful now
i could keep time with my heart,
unalarming it's sensitivities,
twisting impossibly and floating on the temporary
out here notes, proof of seconds passed
without and within, measures counting
one on top of the other, and the other other,
and all fall, fall fallen
reducing to memory even deeper in the sand.
the destiny of stone of
this dust unknown
One on one
i am tied down
with no more thought to second chances
for infinite force has rounded me down

With no middle ground,
i am flexible
out in the open
See, i am flotsam,
and therefore i wave
with no flag to defend,
and, still, still the next and the next, and the next
far little time to mean it.
Chip on my shoulder
reducing this particular stone to memory
deeper in grains of sand.
And so, say so, so this is
this is the way, this is the way it works,
it works like this.
The heart is a reversible organ
in that it both beats and can be beaten
and as it is beaten
it beats...
Underneath the skin
through the muscle,
in the blood,
to the bone.

Proof still Positive
we are the all and all,
and the next, and the next,
and the all, moving
clearly determined, forever unsettled
utterly resolved with revelations pending
anything can change but this

And so, Say so,
so, this is
this, and this is and this is

this is the way it works
i was born May 30, 2008
and
the heart is a reversible organ
in that as it beats, it both beats,
(beats, beats – echoed live)
and that even as it is beaten
it beats...
(it beats, beats, beats – echoed live)
for all that is written in stone
can be changed
with breath
for the destiny of stone is dust
and breath makes dust dance

When will we just learn that love is love? Really, truly, I mean that, it never sounds different or writes differently, or for that matter reflects differently when we all look in the mirror and want to see ourselves. Love back and learn more about each other, rather than judge each other, just f***ing love each other.

Thank you for reading this far. We are calling out for more writers for Life and Love with HIV. You know you have it in you. I truly hope you do, the experience will change your voice in the most profound way.

Thank you so much for this opportunity to learn and trust and share, just a little bit more,

And thank you to the amazing global community of survivors who shared words that powered this piece.

WynneST.