- Take your meds and you'll be undetectable-- sounds simple,
doesn't it?
But taking meds every day is really hard.
It's ironic, you feel well, and then you take your pills
and then you start to feel ill.
- I've never had any problems with them.
A lot of people don't get any side effects.
- They're lucky.
Mine taste like cement.
I hate the scent.
They make me feel so sick.
I can't eat.
I'm in pain-- can't sleep, I vomit, spend
hours in the loo or crying in my room.
I'm thinking, am I going to be in this state
for the rest of my days?
This is my fate.
Just let me fly away.
- Sometimes I switch off my alarm.
If I miss one day, what's the harm?
I know I shouldn't but if I'm in a bad mood-- feeling blue--
I flush them down the loo.
Oh God, if my mum knew--
I had no control over anything at the time except my disease--
well, that was mine.
I didn't believe life could fulfil me.
I just thought let it kill me.
- I started to get abdominal pains.
My stomach would clench and quiver.
It was affecting my liver.
I was rushed to hospital as quick as you can.
It was doom and gloom.
But in the waiting room, my dad held my hand.
He said, I love you.
It was the first time he ever said that.
- Moving-- I see things moving that aren't moving.
Occasionally, I get hallucinations.
I'm losing the plot.
I haven't told the doctors what I got--
suffering from fatigue, aggression, suicidal thoughts,
and depression.
- You might not realise that what you're going through has
nothing to do with you.
It might just be a side effect of what you're taking.
The doctors are insistent about being
consistent because if you miss them then
the virus builds resistance.
And then they switch you to something new.
And if you miss those too, then your options reduce
and it's a slippery slope to a position without hope.
- For some healthcare professionals,
it's all about the science--
an obsession with compliance.
They tell me the same thing every time I go--
stuff I already know--
scare stories about people who missed their meds.
- When you can't sleep at night and your head's not right--
when you feel sick from the tabs, and the tests,
and the stabs--
when you're debased by the stigma you face-- when
you have low self-esteem and your medical team can't see
that you're struggling because they're judging your adherence
and ignoring your experience, it's very troubling.
- When I was moved from paediatrics to adult care,
they didn't know who I was or why I was there.
I was 16.
It wasn't easy.
I was sent to the ward for sexual diseases.
- But you can change your meds and find the ones
that work best for you.
My doctor's great.
I mean, if there's something she doesn't know,
she's not scared to say so.
She doesn't judge my inconsistency
but works with me on a strategy.
At first, she rang me every day at home.
And then she set an alarm on my phone.
And when the meds made me sick she said,
this will do the trick, and gave me anti sick pills
that worked real quick.
She asks about me and all the things I do.
She says, you can do this, I believe in you.
I like the way she listens and shares all the decisions.
She's the only one I confide in.
To everyone else, I'm hiding.