“This is your life. You need to be educated about HIV.” Connect to Care – Patrick

“This is your life. You need to be educated about HIV.” Connect to Care – Patrick

October 2, 2019 0 By Ronny Jaskolski


♫ Intro Music ♫ Everybody’s story of living with HIV is unique. My name is Patrick, and I was linked to
care in December of 2011. So after I was diagnosed, I was just given
a sheet of paper with a list of providers. And so I was ready to get into care. I
wanted to get into care because I knew, based off of already being acclimated to
insurance and having providers before, that treating an ailment or an illness is
very important right out of the gate. What I did is I just went right down the list on
the sheet I was given, and it was problematic because I would call one
provider’s site, and I would set up an appointment, and I would show up, and
they wouldn’t have me in their books. I would call and try to reach a front-desk
receptionist, and I would be hung up on, or I would have to leave a message and
no one would ever call me back. And so after about a week of trying to get
into care, my self-advocacy just started to dwindle. I wanted to give up. I just didn’t
care anymore. I was sick. I was tired. My energy levels were low, and I didn’t care
anymore. One of my friends, a very dear friend of mine, is HIV positive. I had the
strength to disclose to him, and he said, “Oh, boy. We have to get you to the
doctor. Come on. Get on the metro. Meet me in DC. We’re going to go to a clinic
that I go to.” I did that. I got on the train. I got into
DC and met him at a metro station, and we walked to the clinic. I went in, filled out
the necessary paperwork, and minutes later, they took me to the back. And I met
with Benefits, a legal team, I met with my medical case manager, and most
importantly, I did my blood draw to get a baseline of where I was at. The second most important thing was I
met with my provider the same day, and I will never forget his name. His name is
Dr. Maddie. What’s very unique about him is that he’s all about being an advocate
for yourself and being educated. And so, when I walked in the room, he was like,
“What do you know about HIV?” I kind of told him what I was reading and what I
kind of knew, but he was like, “You need to know more.” So he gave me a website.
He gave me a list of information. He was like, “On your follow-up appointment, all
of these definitions like T-cell, viral load, percentage, resistance, HIV: what the
definition is, what the transmittable fluids are, what AIDS is, what defines an AIDS
diagnosis,” he wanted me to be able to throw back that information without
hesitating, because his point was, “This is your life, and you
may not have me as a provider for the rest of your life, so you need to make
sure that you’re educated on what it’s like to be living with HIV so if you ever come
across an infectious disease doctor or specialist who is not knowledgeable, you
can know right from the gate.” That was empowering for me because I
found the doctor who cared about me but, most importantly, he wanted to educate
me on what it was like and what I needed to know in regards to living with the virus.
That really set the precedent, because now every time I have to go to a new
provider, I want to make sure I’m going to a doctor who is knowledgeable about HIV,
more particularly, doctors who are knowledgeable about co-infections and
issues that arise from living with HIV down the line as we start to age. So getting into care was, for me, very
difficult, but through the help of friends but most importantly a doctor who
wanted to see me get better, who wanted to see me be an advocate for myself, who
gave me the necessary tools to be able to be who I am today. Share your story. #mypositivespin Learn more at positivespin.hiv.gov