- There's different disconnects
when people wanna talk about an illness.
People feel scared.
They feel uncomfortable.
So not a lot of family members know I'm HIV positive.
My siblings do know.
I'm sure that they've told my parents.
I don't really talk to my parents though
because it's also that preconceived notion
that it's a gay virus.
I don't really want them to know.
I don't even wanna talk to them in the first place
if they're gonna keep assuming these negative things
about my sexual identity.
When I first came out on social media,
I need to like make this a second coming out, you know.
Like I come out as gay in high school
and I'm gonna come out now as HIV positive.
And I had a lot of friends on my side
supporting me during this moment.
I spoke to Johnny and I told him one day I was like,
"I'm HIV positive."
And he said, "Oh, okay.
"What are you wearing for tonight?"
- First of all, like I was like,
I didn't even know how to process it, you know.
I was like, should I cry?
Should I like say I'm sorry?
Should I like ask him how, what?
In the moment it was very characteristic of like him.
Always abrupt, always does something like
says it very bluntly, you know,
so I was like, fine, maybe this is his way of like,
like just coming out, you know like.
I'm like, all right fine, fuck it.
- But I didn't wanna make it a big deal.
- It's never been like a full like,
okay so tell me like, you know.
No, it's never been like an...
'Cause it never, out of respect I still feel,
like I never wanted it to be
like an interrogation, you know.
'Cause I love him, you know.
Like I've always like, I don't know.
I just want him to be well, you know.
- I've never seen him cry until today.
- That's a lie.
- I'm not saying I have 100% control of it,
but I definitely have more hardness now
to just start talking about HIV.
- I feel that like everyone that you meet
you inevitably learn something from them, you know,
and I've learned a lot from Giuliani.
Like whether I want to acknowledge it or not.
- I'm glad, I'm glad that there's not this fear, you know.
And I'm glad that he also started taking prep
because I told him too.
He's taking care of himself and that reassures me
because I also wanna make sure that my friends
are taking care of themselves
and that they can learn from like my situation too.
It's challenging but I'm stubborn enough to keep going
and keep talking to people about HIV
and keep bringing it into light
and bringing it into the public.
- I think one of the biggest challenges to a family
when one of the kids is sick is on the parents.
All my mom wanted to do was make me better,
and she couldn't and she can't.
I have two brothers.
We live with my mom.
She's been a single parent pretty much all my life.
- Ellie was really bossy.
That hasn't gone away though really.
In some ways she's so the same
as she was when she was little
and in some ways she's a little different.
- Ehlers-Danlos Syndrome, or EDS, is rare
and rarely diagnosed.
For two years, doctors just didn't really know what to do.
I underwent month-long hospitalizations,
three probably unnecessary surgeries,
a lot of stomach pain, not being able to walk suddenly.
It was really difficult at first.
My mom had to take a leave of absence for work
because all of her time was devoted to trying to figure out
what was wrong with me.
I lost a life that I had known for 13 years.
It was all of a sudden,
and I had no preparation, no roadmap for that.
And you have to let yourself grieve for that.
You have to let your family members
and parents grieve for that because they also lost
what they envision as your life.
- For a long time, I was waiting for something
that was going to get her back to normal.
I was torn between listening to Ellie
and believing what she told me
and listening to doctors who said
that there wasn't really anything wrong with Ellie,
that it was in her head.
It was really hard to know what to do next.
- I remember this moment in the hospital when I was 13
and I had tried to walk to the bathroom
and I'd fallen and I couldn't get up
and the nurse was like, "You just have to make her.
"Just make her get up, get up, get up, get up."
And then I was like, "Please just be my mom."
- I just decided that I was gonna listen to her,
and I was going to advocate for her,
and I was always going to support her
in advocating for herself.
I think things that have made it easier for me
have been understanding that it's a new normal.
This is Ellie's life.
This is our life now and I know that I have to trust her.
I can't be in her body.
I don't know what it's like.
The only thing I have to do is believe her and trust her.
- There's never in one moment that I doubt her love
or her support for me.
Did you keep any?
Man, this is real middle child syndrome here.
- I think it's difficult for any family to understand
what one person is going through with diabetes.
I was born and raised in Rhode Island.
I am the second youngest of eight children.
I get a lot of, "How are you?" And, "What's going on?"
But I really don't get the detailed questions
about my diabetes.
I'm currently packing to travel home
to the East Coast to see my family.
There's five things that I carry around daily
that I need to have with me:
glucometer, insulin, insulin pumps, meters, test strips.
Your blood sugar is your constant thought.
Anytime you go to eat something, to drink something,
to go for a walk, if you're gonna go to sleep,
what is my number?
How many units of insulin have I taken recently?
Having Type 1 diabetes be such a major part of my life
and my family not understand it, hurts.
It feels like it doesn't matter.
It feels like it's not as important.
I love my family an incredible amount.
I love them to death,
but I wish that they knew more about me,
who I am, what I do every day.
It's still pretty uncommon to have a service dog for Type 1
and I'm very blessed to have the opportunity
to work with this dog.
Diabetic alert dogs have only become more mainstream
I'd say over the last five years.
Now that I work with a dog,
when Forrest senses that my blood sugar is too high
or too low, Forrest is trained to smell the chemical change
in my body that I cannot feel
and then alert me to that happening.
He's there when I wake up.
He's there when I go to sleep.
He'll wake me up in the middle of the night
if my blood sugar is low.
He has no idea what he does for me.
Forrest is my rock.
I get to wake up and have a best friend
who's gonna fight diabetes with me every single day.