- Strangers often ask me online,
they'll find my Instagram profile.
They'll be like what's wrong with you?
This doesn't happen.
People don't just get sick and don't get better.
[Gentle Music]
- At 14 it seemed like overnight I got sick.
- I lost fifteen pounds in a matter of a week.
- I was burning up, body aches, everything.
- I was in the hospital for two months.
They put me on an oxygen tank.
I had chemo for six weeks.
- I didn't care if someone told me that I was dying.
I just wanted someone to tell me something.
- My name is Elanor Wheeler.
I have a rare genetic connective tissue disease
called Ehlers Danlos syndrome.
It affects my joints. I can walk a little bit.
I use a wheelchair most of the time.
[Gentle Music]
- My name is Cassandra, I have Lupus.
It's an autoimmune disease.
It affects my kidneys and other organs.
- My name is Giuliani Avaringa.
I'm HIV undetectable.
I have worked really hard to stay undetectable now
for almost two years.
Undetectable equals untransmittable.
- My name is Henrietta Ivanez-MacEntire.
When I was thirteen years old I was diagnosed
with chronic kidney disease.
I'm a two time kidney transplant recipient.
- My name is Matt Taro, I have type one diabetes.
Your pancreas completely stops making insulin.
From waking up in the morning,
the first thing I think about,
whether or not my blood sugar is in range or out of range.
- It's almost a relief for a second.
Cause you feel like okay I wasn't crazy.
Something was actually wrong with me.
But then now that you know what it is,
now what are you going to do?
How am I supposed to live my life now.
If I'm single, how do I tell people I'm gonna date?
If I'm married how do I get my partner to adjust to the fact
that now I'm gonna be sick forever.
How do I explain to my friends that I can't go to dinner
because I'm too tired.
How do I get my family to not chronically worry
about if I'm gonna die suddenly or not.
[Gentle Music]
- When I first got sick my only experience
with doctors really up until that point was
you go to the doctors office, they instantly know
what's wrong with you, and they can fix it.
- It's a tall order to try and convince people
who've only had short lived physical experiences
to ever truly understand what we have gone through.
- There's a vast understanding of diabetes
and most people are only shallow into it.
Words hurt tremendously.
It seems like you're just lazy
like you've inflicted this disease on yourself.
- Maybe you're just depressed.
Maybe you should just see a therapist.
- Just try harder, just get up.
You're fine.
- Well you look great.
Well you look great.
But you don't get it.
You don't get it.
[Gentle Music]
- Illness, especially illness that is incurable
and lifelong is really hard to talk about
because we've been trained not to talk about it.
We've been trained and told to be ashamed of it.
- My grandmother is a very private person.
She told me keep it to yourself unless someone asks.
Nobody has to know what you go through except you.
And something in the back of my head clicked like
no everybody's gonna know.
I'm telling everybody.
- Once we start talking about it
we kill the stigma, we normalize it
and we allow people to feel more comfortable with
talking about what's going on in their lives.
- And the more you talk about it
the more it creates an understanding.
Everyone is given the chance to thrive better
because they're better understood.
- I want people with invisible illnesses to feel seen.
- This is my life.
This is my normal.
I am not ashamed of my story.
I am proud of my story, all of what it entails.
The sad parts, the angry parts, the happy parts.
The triumphs, the failures, all of it.
[Gentle Music]
- It's a hard juggling act
when one person's sick and one's the caregiver.
When I was thirteen years old I was diagnosed
with chronic kidney disease.
And when I was nineteen I had my first kidney transplant
donated to me by my mother.
[Gentle Music]
I met my husband, Kevin in Toronto.
I was in my second year of theater school.
I remember thinking, how can he have this capability
of making me feel so protected and safe?
And it's um,
it's a role he really owned.
He really just owned.
- I was 39 when I was diagnosed with kidney rejection.
I literally looked like I was dying,
and I literally was dying.
So they knew I was gonna lose the kidney.
- I picked up the phone and the nurse,
she just said how are you?
And I said, eh I've been better.
And she said well that's great news,
you're the match.
And I remember just going, oh my god.
- The fact that he was a match to give me a kidney was
kinda mindblowing.
- Yeah.
[Gentle Music]
- Transplant rejection was very much, I feel,
a triggering point for my addiction that had been there
all along.
For a long period of time I was only abusing one medication,
and then everything just escalated.
Every single time I did it I'd swear to him
I won't do this again, I'll just take them as prescribed.
And I couldn't.
I couldn't.
He never left my side,
and still fought and fought and fought for me
and was an advocate.
He was this incredible caregiver
who paid the mortgage,
drove me to every appointment,
and had very little for himself.
- When I was 42 I went into rehab.
It's easier now because I got sober, truthfully.
It's a choice every day to walk the steps together,
like walk those steps together.
- I don't even like the word caregiver because
you're partners you're not giving care in the sense
that it seems like it's a job.
And it's really not it's a part of being in a relationship.
You learn how to be helpful but not codependent.
- You know, I mean look.
Long term relationships, there's always things that come up,
always.
And we've worked really really hard to get to the place
we're at today.
Going through what we have gone through,
not just with my transplant but with me,
as an active addict.
It's been extraordinary.
What are we at, 26 years?
We're in a pretty good place today.
- I haven't met anyone in a while that I've been like
wow, like let's sit and let's have this conversation
and let's like be into each other.
It's hard to trust that someone would understand
what it's like to be with a sick person.
Prior to me being diagnosed with Lupus,
I never wore makeup.
It's kind of the illusion that I look a lot better
than I feel.
I think a lot of people, mainly, when they hear Lupus,
they think of some other disease that's curable.
It's an autoimmune disease which means
that my system attacks itself.
For most of us we have a lot of the same symptoms.
Brain fog, joint pain, fatigue.
Mine specifically affects all of my organs.
I am in pain every day, all the time.
Every minute of every day.
For the last six years.
I have had a hospital stay at least every six months.
I feel guilty if I am like with someone,
or interested in someone,
knowing that there's going to be a lot of my life
spent in hospitals, in doctors offices.
It seems unfair to ask another person
to love me enough to be okay with all of these things.
Do you tell them four weeks in when they've already
invested their time?
Do you tell them immediately, and give them the option
to make a decision, but not even really knowing
what that decision entails?
I was with someone for two years,
and I felt like she didn't believe that I was sick.
As the trust disintegrated, so did everything else.
She came to see me in the hospital.
I think maybe a part of her felt like she needed to see
that like I was telling the truth.
I have not been in a relationship since then.
It's not that I think that I don't deserve
a long term relationship,
love is asking someone to choose to be with you.
And I don't feel like I've reached a point
where I can ask someone to do that with me.
- I think HIV is more stigmatized than other conditions
because it's associated with sex.
And sex is such a taboo subject.
[Gentle Music]
- From what I've heard from long term HIV survivors,
who lived in that era,
people were scared.
People did not talk about it,
like people didn't even have a proper goodbye.
[Gentle Music]
I remember being as a kid, just passing by this park
with my dad, I never knew what this meant until I got older
you know?
It means a lot to me to be here,
and just to read the names of some of these people
that are no longer with us.
But we still honor them by coming back to this space.
I'm HIV undetectable.
When you're undetectable, it means that the virus
is dormant.
It's not attacking your body.
Science has proven that undetectable means
you can't transmit it to someone else.
And what we may start doing now that we have
science on our side is getting you know,
the social science aspect of it now.
I've had weird situations like online with some guy
that wanted to shame me.
It's easier to shame someone than it is to
critically think about the situation.
I'll be on Tinder of Bumble, they see all the work I'm doing
with HIV, and they ask, are you HIV positive?
And I say yeah, I'm very honest about it, you know?
Rip the bandaid kind of thing.
I want to be able to be with a partner
where I can just be myself.
I'm aware that I have HIV but I also am aware
that I can give so much more to someone.
I know the value of my worth.
I would tell someone who thinks that they can't have
a healthy long lasting relationship because of their status
to reconsider those thoughts.
I know that it takes time and it's a process,
but love is unconditional.
They're going to find someone who's going to
want to get to know them and see something deeper than HIV.
[Gentle Music]