What is the mission of the documentary?
According to Stewart, the public needs to listen to and trust the patient perspective. People with invisible illnesses may “look okay,” but that doesn’t diminish the reality of their experience with illness or disability.
“People living with chronic 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,” Stewart wrote in a press release about the film.
How does the film fill a gap in the conversation around living with chronic illness?
In a phone interview with MedTruth, Lupinacci, who is diagnosed with lupus, explained that there isn’t much content about chronic illness. And what does exist focuses more on the disease than the human living with it, she added.
The Trust Me, I’m Sick team wants to represent the real experience of living with chronic illness, not a “one-dimensional, super tragic portrayal” or a “forced inspiration” about overcoming something.
“We are always going to have this,” Lupinacci said. “'Overcame' is not the correct word to use.”
What inspired the project?
Stewart came up with the idea after starting her own journey with chronic illness. She started noticing symptoms at age 21, but it wasn’t until years later that she was diagnosed with small intestinal bacterial overgrowth (SIBO), a painful, chronic stomach condition that may be difficult to treat.
“It showed me that the complications of illness lie far beyond any physical symptoms,” she wrote in the press release. “Illness affects every part of your life."
What are the biggest takeaways for viewers?
Chronic illness touches everything, from interpersonal relationships to navigating school and work. Lupinacci wants people living with illness to feel seen and to know that others are facing similar challenges. In the simplest terms, she wants people to know they're not alone.
“There is this huge community of people who understand you and want to support you and be there for you, no matter what emotion you’re feeling,” she said.
For those who aren’t living with illness, the team has advice, too. It has to start with a conversation.
“Ask questions, listen," Lupinacci said. "Try to be more empathetic."
According to the Centers for Disease Control and Prevention (CDC), six in 10 people in the U.S. have at least one chronic disease. Though chronic conditions affect the majority of Americans, they are underrepresented and rarely discussed. The Trust Me, I’m Sick team is working to shift the culture and open up the dialogue surrounding chronic illness.
“We cannot cure many of these illnesses right now, but I believe we have the power to change how we treat each other,” Lupinacci wrote, summarizing the intended impact for the film. “And that feels just as important to me.”
If you haven't had a chance to watch Trust Me, I'm Sick, we'd like to introduce you to each of the subjects. Take a moment to read a few of their most impactful quotes.
“I wish all the time that I didn’t have to go through the steps that I have to, the tremendous amount of effort, just to seem ‘normal’ to everybody else.”
“I didn’t care if someone told me that I was dying. I just wanted someone to tell me something.”
“Little by little, it’s like there are these pieces of yourself that are being cut off, just severed from you. Your identity becomes more and more ‘Is this all I am? Am I just a sick person?’”
“I lost a life that I had known for 13 years. It was all of a sudden and I had no preparation, no road map for that.”
“Once we start talking about it, we kill the stigma, we normalize it.”