Trust Me, I’m Sick is a documentary series chronicling the lives of five people from Los Angeles, California. The series analyzes how chronic illness affects the everyday lives of people living with lupus, diabetes, and HIV—to just name a few. The people in the film share intimate stories about personal struggles with their condition and how it affects their relationships with partners, family, and friends.
The filmmaker—Sarah Stewart—abruptly became very sick shortly after graduating college. She began searching for a diagnosis with the help of doctors; however, her health began to stagger. It was in these moments of hardship and fear that she came to understand the processes of living with a chronic illness. She would soon meet Erica Lupinacci, co-founder of Suffering the Silence and future collaborative partner.
Suffering the Silence is an organization dedicated to leveraging the power of art, media, and storytelling to raise awareness around the life experiences of people living with chronic illnesses and disability. This organization has worked with the documentary to raise an important message through the art of film.
It was such an honor and learning experience to work with Sarah and Erica on this documentary series. I am one of the five subjects—talking about HIV and the stigma we may face in public spaces. HIV differs from other chronic illnesses in that it relies much on social construct. In other words, stigma, fear, and lack of education are what sometimes lead the discussion around HIV. As a subject in the series, I knew I had to be ready to fully expose myself in front of a camera, talking about very personal stuff. However, a year after the project, I saw the documentary put together—much like a jigsaw puzzle. This was my first time working on a film project, and these young women taught me so much. In hindsight, I am very happy to be part of such an enriching and telling video series that wants to showcase the story of some brave and strong folks out there. There are so many brave and strong people outside of this film living their best lives, unapologetically.
It was a pleasure chatting with Erica and Sarah a year later about Trust Me, I’m Sick. So without further ado, let’s begin the conversation.
Giuliani Alvarenga: How did you get the idea for the series?
Sarah Stewart: I first came up with the idea for what would become Trust Me, I’m Sick back in 2015. I’d just graduated college in London when I suddenly got sick with the first, six-month-long episode of my (then, undiagnosed) GI [gastrointestinal] condition, SIBO [small intestinal bacteria overgrowth]. Scared, overwhelmed, and feeling pretty isolated, I remember thinking, “There must be more people out there going through this. How on earth are other people coping while living with this?”
After doing some research online, I struggled to find stories that candidly reflected what I was experiencing emotionally. So, I decided to do something about it. Flash forward to 2017 when I discovered my incredible co-creator Erica Lupinacci’s nonprofit, Suffering the Silence, which does an amazing job of creating space for people to share their illness stories. Premiering over two years later, Trust Me, I’m Sick is our joint attempt to share some of our communities’ experiences with the world.
GA: Why did you have different illnesses featured in the film? Why did you focus on emotional experience versus physical illness?
Erica Lupinacci: Though we may have different diagnoses, so many of us have experienced similar stigma, misunderstanding, and hurt. Featuring different illnesses and focusing on the emotional impacts allows more people to relate and connect to the series. It helps more people feel seen and heard.
There is amazing work being done by researchers and scientists to cure these conditions, but what are we supposed to do in the meantime when so many people feel alone? The emotional implications of living with a chronic illness can often be as painful as the symptoms themselves. Improving how we interact with each other and how we can improve each other’s quality of life is just as important.
GA: What does the title, Trust Me, I’m Sick, mean to you?
EL: We need to trust people, their bodies, and their experiences. People living with illness deserve to have their stories seen and heard, to have platforms to talk about the things so rarely discussed and often looked down upon. Trust Me, I’m Sick aims to challenge perceptions of what it looks like, feels like, and means to be chronically ill. This series hopes to inspire more people to share their stories and to find community and empowerment amongst others who have similar experiences. It will hopefully encourage people not living with illness to engage with those that do, ask questions, and try to better support and care for them.
GA: What were some of the things you were looking for in a person living with HIV? What was it about Giuliani that made you reach out?
EL: Giuliani was so unapologetic and open about their experience with HIV and so many aspects of their life. They are not afraid to be real and honest about the realities of living with HIV. Giuliani is also someone who is incredibly empowered and constantly working to make change in the world. Their passion is palpable, and I immediately knew they were a perfect fit for this piece.
GA: Prior to this project, did you have any knowledge about HIV? Do you have friends or loved ones who you have learned from?
EL: I went to Hampshire College, which is a unique institution in that you can design your own major. I focused my studies on HIV prevention and education during my four years at school. Prior to college, I knew very little about the epidemic, and that’s what made me so passionate about studying it. Why weren’t my communities talking about this? Why weren’t we doing anything about it? I learned so much about the history of HIV/AIDS and the stigma and misinformation surrounding it. I worked at a nonprofit in New York that provided housing for people living with HIV and AIDS as well as a camp for families impacted by HIV. I felt so lucky to work with Giuliani on this project. I got to learn more about the nuances of their experience and what we can do to support those living with HIV and AIDS today.
GA: What do you see as a necessity before we can fully understand how we can end the HIV epidemic (e.g., housing, ending stigma, etc.)?
EL: Addressing stigma, access to treatment, prevention, education, housing, decriminalization—there is so much to be done.
GA: How were you trying to thread these powerful stories? What skills as a filmmaker did you use to honor the film?
SS: I always knew I wanted to share these stories from an emotional place. I’ve had several moments myself where I’ve felt like as soon as people hear that I have an illness, they shut off a little. Unsure of what to say next, by sharing my story I’d somehow shifted in front of them from being a person—to being a “sick” person.
When it came to directing the series, I was really eager to find creative ways to encourage the viewer to see our subjects as individuals living with different illnesses, not just as “sick people” they could feel sorry for. For starters, I decided to make the episodes short and thematic. Illness can be a pretty heavy and dark topic (understandably!), and I felt that the more concise the films were—and the more rooted they were in parts of life that everyone can relate to—the better chances we had of engaging with a broad base of people online, both within and outside illness communities. Each episode is paired with a different aspect of everyday life: work, relationships, family, mental health.
From a visual standpoint, I chose to use character-centered interview shots where the subjects could talk directly to camera about their experiences, in their own terms. Instead of using experts to speak on their behalf, we interlaced those interviews with intimate, hand-held vérité camerawork, courtesy of our brilliant DP [director of photography], Luisa Conlon. Working closely with our editor Carla Roda, we opted against the traditional way that many character-led series are edited: with one hero character featured in each episode. Instead, we decided to weave in between our characters’ stories, thereby creating a sort of tapestry of their illness journeys.
Finally, tone was a huge priority for me when it came to creating music for the series. We were unbelievably lucky to work with Starr Parodi, who created the most incredible original score for us. Starr’s work both communicates the emotion of each scene beautifully, while also helping to give each character a strong sense of power and autonomy in sharing their own stories.
GA: What do you wish to do with this documentary? How will you use this as a learning tool?
SS: From the start of this process, Erica and I knew that making the films as accessible as possible was a huge priority for us. That’s why we’ve decided to release the films online—all at once—on Jan. 27. Once the films are out, we’re really excited to visit medical schools and organizations across the U.S. to talk to junior doctors and medical professionals about the films, and to consider new ways to improve patient care. If anyone reading this would like to inquire about setting up a screening of the films, please reach out to us!
GA: Why was representation behind the camera so important to you?
SS: One of the first decisions I made when Suffering the Silence came on board was that our crew would be as inclusive as possible of people living with illness and disability. The lack of representation in TV and film of people living with illness and disability—both on- and off-screen—is more than unjust; it’s affecting our ability as filmmakers to portray stories about our diverse communities authentically.
I’m immensely proud of the fact that Trust Me, I’m Sick was made by an all-female crew, all of whom have illness experiences, from our producers to our editors. On-set, the results were magical. Despite how challenging a given shoot day was, having a room full of people—all of whom had direct personal experiences of illness—discussing complex ideas around illness—it was incredible. I’ve learnt an immense amount from my crew, and I’m certain that the quality and sensitivity of the films we’ve made was transformed by the experiences we shared as a team.
GA: What do you hope people walk away with?
EL: There are so many people, especially young people, who feel like no one understands them. When six out of 10 adults in the U.S. are living with chronic illness, why aren’t our stories in the media? Why don’t we get to tell our own stories? People deserve to see they are not alone. They deserve to watch someone say things that they may not be able to articulate themselves. So often our experience is reduced to absolute tragedy or used as inspiration for “overcoming” hurdles. I want people to see that we are whole people and living with illness is more than going to the doctor a lot or taking a lot of medication. It is heartbreaking that along with physical pain, financial struggles, insurance battles, so many of us don’t feel heard or understood in our day-to-day lives. That needs to change.
SS: Getting sick with an incurable condition was, to put it mildly, a massive eye opener for me. It was a window into the world of millions of other Americans who also live with chronic conditions. It showed me that the complications of a chronic illness extend far beyond just its physical symptoms. It showed me that illness can affect every part of your life—and that human kindness and a willingness to listen, to really listen, can have a huge impact on a person’s mental health. I’d love to think that our films are the start of a much needed, more nuanced conversation around illness.
Watch Trust Me, I’m Sick online at www.sufferingthesilence.com/trust-me-i-m-sick.