72 - Beyond the Diagnosis: The Invisible Reality of Type 1 Diabetes with Rebecca Hodges
- 18 hours ago
- 16 min read
Stacy Griffin: Welcome back to Autoimmune Adventures, where we navigate the journey of chronic and autoimmune illness with honesty, connection, and hope. I'm Stacy, and today we are excited to welcome a guest whose work truly embodies the power of storytelling to change perception and spark meaningful conversations. Our guest today is Rebecca Hodges, the founder of Hodges Film and an award-winning filmmaker who has spent more than a decade creating emotionally powerful, socially conscious films.
Rebecca's work centers on stories that challenge assumptions, elevate under-represented voices, and invite deeper understanding, especially around health, identity, and human experience. She has earned multiple Gold Telly Awards, a Crystal Real Award for directing, and has collaborated with organizations and companies including Disney, Dolphin Entertainment, Promise, and Women in Film and Television Florida. But today we're focusing on a project that is especially personal and deeply impactful - and it's personally impactful to us because our father had type 1 diabetes. So, Rebecca is currently working on an independent feature-length documentary called Beyond the Diagnosis produced in collaboration with Elizabeth Forrest, founder of Touched by Type 1. This film offers an unfiltered look at what it means to live with type 1 diabetes through the voices of people navigating the condition every day, including athletes, advocates, and individuals whose lives extend far beyond the medical label.
Rebecca, we're so grateful that you're here. Welcome to Autoimmune Adventures.
Rebecca Hodges: I am so grateful to be here. Thank you for having me on.
Becky Miller: So, to start us off, can you take us back to the beginning of the project and what was the moment that made you know that Beyond the Diagnosis was a story that you really needed to tell?
Rebecca Hodges: So, I met Elizabeth Forrest in 2014, and she needed somebody to create awareness videos for her fundraiser, which was uh, Dancing for Diabetes. Uh, when I met her for that very first interview, we ended up interviewing a bunch of little girls that were involved in her dance program. All of these little girls had type 1 diabetes. I came in um, I would say ignorant. I didn't really know what type 1 diabetes was, and um, the disease is invisible. There are a lot of misconceptions that surround it. And when I sat down with these little girls to interview them, one of them started crying. And she was saying, "I wish that I could just be a normal girl and that people didn't have to ask me questions, so that they could understand what I'm going through. I get nervous when I have highs. I get nervous when I have lows. And I'm always scared that I'm not going to wake up when I go to sleep." And it just hit me to the core.
And I knew at that point I was in it for the long haul. I wanted to help in any way that I possibly could to raise awareness around this disease and help people like Elizabeth and these little girls.
Alysia Thomas: Wow. Yeah, we, we had Elizabeth on our podcast. Um, and we loved hearing her story and I loved hearing how she came to be such an advocate for type 1 diabetes. It, her story is very empowering and I love that you guys connected and are working together. That makes me so happy. I cannot wait to see this film. So, um, the title I think is really powerful. I really love the title Beyond the Diagnosis. What does that phrase mean to you personally and how do you feel like it reflects the heart of the film?
Rebecca Hodges: So, a diagnosis changes everything, right? But it doesn't mean that you are your diagnosis. So Beyond the Diagnosis is of course your life shifts and you have to um change to figure out what your new life with this disease looks like but at the same time it is not who you are. So the title is really about holding both truths at the same time that you are more than your illness, but your illness is still a massive part of your everyday reality.
Alysia Thomas: Yeah, that, that makes total sense. We, we end every episode saying um remember you're worthy of joy. Disease does not define your life. You do. And I feel like your uh, the title of your film, it goes right along with that. There's a lot of life to live. And it is, it is a balancing act have holding um like you said two two truths. You can live a great life and and you can have your life completely changed by autoimmune illness. And that's, it's a lot it's a lot to take in, especially for children and this one affects children more than a lot of the others out there. And that brings its own level of um poignancy, I guess, to the film, I'm sure.
Rebecca Hodges: It's an emotional roller coaster.
Alysia Thomas: I can only imagine. I can't wait to see it.
Rebecca Hodges: Yeah.
Stacy Griffin: This documentary highlights themes like identity and resilience and community. Why were those themes so important for you to center on as you shape the story?
Rebecca Hodges: So, I feel like you can't have one without the other. I think that these...so, let's start with identity. Um, when you're diagnosed with something like an autoimmune disease, it impacts your identity. Like, like you were saying, you can hold both truths, but your identity is impacted by your disease. And then because of that, everybody that we've talked to builds up some way to be resilient. Um, whether it's in small ways or big ways. Uh, take Elizabeth for example. She was diagnosed in 1999. She decided to put on a fundraiser and figure out how she could support other people with this disease. And she's still doing it today. She's been resilient. She's been helpful and supportive of other people. And in doing that, she built a big old community. Um, and now that community supports new people coming in and finding their identity. And it's like a little circle of life that happens. Um, so it, it really just started with how do we how do we reach people? How do we make people feel seen? And those were kind of the, the through lines and the themes that, you know, they developed themselves.
Stacy Griffin: I love so much that you say that because one of the things we talk about a lot is the importance of having community and having people that understand you. And I think that's why what Elizabeth does is so beautiful is because she's providing a place where people can learn that they don't have to live in fear. That there's so much beauty left in their life and that they just need the tools to take care of themselves and understand that this disease does not make them any less than what they were before and they are still who they are, and they're still wonderful the way they are. And I, I love that that you're focusing on that um, element as well.
Alysia Thomas: There's a beauty in in losing yourself in service to others, right? That, so when you're stuck in this mindset of, "Oh my gosh, I have this new diagnosis. It's so scary. I don't know what I'm going to do. I don't know how to manage. It's definitely, we are huge advocates of educating yourselves and um learning how to manage your disease, learning as much as you can about it. But I love that Elizabeth turned this her whole experience into serving others, because you do you it's hard to hold space for fear and love at the same time. You know, when you are motivated by love to do what you're doing because you know how hard it was for you, and you want others to have an easier experience going through it. I feel like that is a powerful, powerful way you can give back and create community and do all the amazing things that she is doing and that you are helping her do.
Becky Miller: Yeah.
Rebecca Hodges: Well said.
Becky Miller: So, when you're telling stories about invisible illness, stories that are deeply personal, how do you balance being honest and raw with the people that you're interviewing while also protecting and honoring their experience that they're trusting you with?
Rebecca Hodges: That's a hard one. Um, so honesty and transparency. I am here to gather the stories. I'm not here to push you into anything that you don't want to talk about. Um, and I want the stories, the stories that are shared with me to be useful to other people, to be supportive in some way. I'm not here to manipulate the story or to create drama. That's just simply not what I do.
Um, I will share that one of our families that's involved in the documentary, um it's Jamie and Josh Terry, the parents of Kaisy Terry, who um she was misdiagnosed with strep throat when she was five, and she had type 1 diabetes. She was diagnosed very late in the game, went into a DKA coma. um when she came out of the coma she had brain damage and then eventually passed away from complications. So, in having that family involved, first of all interviewing them is so hard because even talking about the story now is so emotional. Um but they want to share their story because they want people to know the signs and symptoms of type 1 diabetes, so that misdiagnoses like these don't happen again. So, we often have conversations of "what feels good to you right now to share?" "What are you willing to share?" Um, and if any time this doesn't feel right, feel good. Let me know and we can circle back to it or we can not. Um, so I just think honesty onset and communicating through development is critical. Um, and we always just are transparent with one another.
Alysia Thomas: That makes sense to me. And I'm I'm a chronic oversharer. And so I like to I, I mean I don't have I'm an open book. I feel like when we share our stories, it connects us. And I know that there are people out there who need to hear the stories that these families are sharing with you. These, these people that are living these experiences are sharing them and you're putting them out into the world for people that need to hear them. And I think there is such power in simply sharing a story. And when you are honest and open like that, that vulnerability, it creates connection with people you might not even know. When they see how vulnerable and real somebody is being, they feel validated in their own experience. And I think that is a priceless, beautiful thing that you are doing.
So, you have had a a long creative relationship with Elizabeth Forrest now going back for over 10 years. How did that relationship influence the direction and tone and and the trust behind this film?
Rebecca Hodges: So, Elizabeth's narrative is the narrative of the film. Uh in meeting her and working together so closely to create awareness campaigns, um the film almost wrote itself. I think that I um, so we started working together in 2014 and probably five years ago, maybe six years ago, I was like, "Hey, I think this should be a feature film." Um, and she was like, "Tell me what you think." We went out to coffee uh with her right-hand woman, Kelly. They've been best friends. She's been there since the beginning of Touched by Type One. Um, and we just talked about all of the people that we had interviewed, how Elizabeth has created this what started as a small um, fundraiser in her driveway to now a nonprofit that is huge and supports so many people. Um, so if we were able to create a story by telling her narrative, um, which actually all circled around the 25th annual Dancing for Diabetes, which was just this past November, if we were able to focus on her story and then connect with other people that have come in um, through this timeline and share their stories as well, then we get a a broader picture of what this disease looks like and we're able to um, explain many different facets within just this one story.
Alysia Thomas: Awesome.
Stacy Griffin: Well, during filming, was there anything that surprised you? Something that you didn't expect to learn, feel, or witness while you were listening to these stories? We always love to ask questions like this because you go in with a plan. What surprised you in the midst of your unfolding with this um, particular documentary?
Rebecca Hodges: Um, there were some great surprises, especially at the Dancing for Diabetes event. Uh, being able to see the reactions on people's faces in the audience, um, and hear their stories as they share them back in front of the camera. like you're not anticipating that and it was very exciting. Um, I will say that the biggest surprise, uh, which not to be pessimistic, but, uh, when I interviewed Elizabeth, she's always so stoic and she's put together and she rarely expresses extreme emotions. And I think about 15 or 20 minutes into her interview, she just started crying and she couldn't stop it.
And it turned from um you know a celebration of 25 years of dancing for diabetes into she's been fighting this disease for over 25 years and she was told when she was diagnosed that the cure is right around the corner and she's been fighting for that cure and supporting other people this entire time. Um, and I as the producer had always been the biggest cheerleader of you know, "this is so important. Look at what you've done. look at what you've created," and was very heavy on the positive and all of the impact that she's creating. And I didn't see the mourning that was happening on the other side. So, I think that that was a surprise and it, it was a tone shift that I think is actually necessary in the film. Um, but it was, you know, I myself don't live with type 1 diabetes, and so I'm still learning through all of these experiences what it's really like.
Stacy Griffin: I think there is a heavy grief that exists with these diseases. There is so much lost that people on the outside maybe cannot see. But it is hard to know that you are no longer in control of your body. That there is this disease that can take your free agency to do what you would do with your life away from you at times. And even though we try to be positive, we don't believe in toxic positivity. So, we keep it real. And um, I can understand how that would have been a bit of a surprise for you, but also that as a filmmaker, I, I, I would think that that empowered you a little bit to say, "Hey, here's both sides of that coin." Um I think there's real power in that. So, I'm I obviously I don't want to hear about Elizabeth crying. That makes me sad. But but I understand why she did.
Rebecca Hodges: Yeah.
Becky Miller: Yeah. Well, type 1 diabetes is often misunderstood, I think, by the general public. And I know, like we said, growing up with our father, it's come a long ways. But he was a professional. He was an accountant and he was like embarrassed to even let his co-workers know about the fact that he had it because it was, you know, it was very misunderstood.
Rebecca Hodges: Mhm.
Becky Miller: And um I guess after watching, after somebody watches Beyond the Diagnosis, what do you hope that they can come away understanding um differently maybe than they did before this?
Rebecca Hodges: I would like people who watch this film to be able to define what type 1 diabetes is, to know that it is an autoimmune disease where your beta cells attack your pancreas and you are no longer able to pres to produce insulin, which you need to live. So without daily injections or not even daily, you know, moment to moment, without monitoring and injecting yourself with insulin throughout the day, you won't be able to live. Um, I hope that that helps to alleviate some of the stigma around it, helps to decrease misdiagnosis, and I hope that this increases fundraising in the search for a cure. Um, I think that the time to explore this is now.
And like you said, you know, it's an invisible disease. So there's also a very heavy mental weight placed on the shoulders of people living with it. So for those people, I want them to be able to watch this movie and feel seen. And that's the end goal.
Alysia Thomas: I love that. I love that so much. It's I think that you from what I understand you intentionally feature a wide range of voices on this in this film, right? From professional athletes to just kind of everyday individuals. Why do you think that diversity was, of experience, was an essential part of telling this story authentically?
Rebecca Hodges: I think because no diagnosis is the same, no person is the same, the way that they deal with the disease is not the same. Um, also the fact that here in the United States of America, you may have health care, you may have access to insulin, you may not, you may um be in a, a different culture with additional stigma and which creates getting care harder. Or you may live outside of the United States where type 1 diabetes is still a death sentence. So, including various voices, researchers, endocrinologists and people who can speak to the global effects of this disease. It was necessary.
Alysia Thomas: Yeah, because it can happen to anybody. It It doesn't respect your person. It just anybody can h, it can happen to anybody. So that that makes total sense.
Stacy Griffin: Understandably, this project is deeply um personal to you, but I also understand it was independently produced. So, how did working on Beyond the Diagnosis differ from other projects that you've done throughout your career?
Rebecca Hodges: So I would say that when I was working for a different company it differed from that because that was just kind of any project that I landed on I was in charge of. But for me personally, when I started Hodge's film in 2016 my goal is to I have my mission here. Our mission is to create meaningful visual stories that influence positive change to transform important experiences into powerful narratives that inspire action. So, it doesn't actually differ from what what my um my purpose is for my own company. And I think that that's why making this film feels so important to me and something that I have invested all of my time into is because I'm so aligned.
Becky Miller: You've received significant recognition for your work as a filmmaker, and what has this film taught you about storytelling that you'll carry with you into your future projects?
Rebecca Hodges: I think that this film has taught me that listening is invaluable. that you never know everything when you're going into a film, especially with documentary, things change on the fly so quickly. Um, but, but listening and developing stories that are pertinent to each person's experiences, um, there's just so much power in it. And so once you listen and the the story begins unfolding, that's when the true work starts.
Alysia Thomas: What kind of impact do you hope this film is going to have not just on audiences but on conversations around chronic and invisible illness as a whole?
Rebecca Hodges: I hope that this film uh well, we're we've talked, Elizabeth and I, multiple times about whether you're a viewer with type 1 diabetes or a viewer without type 1 diabetes. And so for the general audience, I just hope that we create um awareness and more compassion and urgency. And then for people who have type 1 diabetes, I hope that we create um, more education for ways that they can live their lives. Um, help to show them that, you know, there are no boundaries they can push on uh, creating their identity and finding their community. And then also that, you know, there is a very large community, and you, you know, you can lean back on them however, however you wish to. Um, but just making that known and and spreading our reach as far as we can to impact the most people that we can.
Alysia Thomas: I think that's so important, because type one is so often um it's children that are diagnosed and it is it is a diagnosis for those parents as well. Like that is a whole it is a radical lifestyle change. It is not something that is just oh you take a pill and you're done. This is this changes everybody's life in that family, but the parents have this immense responsibility now on their shoulders. And um I can see how, I'm I'm and you know they they're not the ones with the diagnosis but they are living with the diagnosis in their child. And so I think that's important. I think that's super important what you're doing.
Stacy Griffin: I think it's also interesting because it so deeply affected us, and we didn't realize how um powerful our maturity kicked in because we were living in an environment where someone could go into a diabetic coma, could go into insulin shock, things that just didn't even phase us because we were raised in an environment where our father had this disease, and he was brittle, and it was before insulin pumps. So, we had an environment where this loving, wonderful man would sometimes get really, really, really happy and he, he would go into an insulin shock that was pretty intense. And our friends, if they happen to be around when it happened, would of course panic. And meanwhile, we're just calmly getting him something to eat and telling him it's all good. And we never thought anything of it.
But now, as I'm on the other side and I'm having friends with children being diagnosed who are coming to me and asking for advice, I realize that it really is, as Alysia said, a life-changing thing. It's a life-changing diagnosis. So, we're believers that if you educate yourself, the world becomes a much easier place to manage. So, thank you so much for being someone who is fighting the good fight. We really, really appreciate that so much. So, tell us a little bit about when the film is going to be released, because we'd love to know when people come and see it.
Rebecca Hodges: We are currently still in production. We have filmed about 70% of the film and we are continuing to fund raise to film the rest of it. Then we will enter post production and the projection for the final film is currently January of 2027. We are hosting a fundraiser February 21st in Orlando, Florida called the Evening of Impact. It's my first big fundraiser. It's Elizabeth's, you know, 500th. Um, but I'm very excited for it. We're putting on a gayla style event uh where people can come together and that will be our trailer premiere. Um, so we're hoping to engage a much larger audience at that event and hopefully bring them all forward to seeing the the film once it's completed. You can follow along BeyondTheDiagnosisFilm.com and then that is the handle for all of our socials as well. Uh, Touched by Type 1, you can find by that name and Hodge's film.
Becky Miller: Fantastic.
Alysia Thomas: So, can people donate? Can, can and where would they do that? On your website?
Rebecca Hodges: People can donate on the BeyondTheDiagnosisFilm.com. There is a a button where you can donate. It brings you straight to our one cause crowdfunding campaign. And you know, every dollar counts. So, you can you can track there how much money we've raised already, and donate any amount that feels good to you.
Alysia Thomas: Perfect. Well, Rebecca, thank you so much for sharing with us today. Your heart and your perspective and the work that you are doing Beyond the Diagnosis is such a powerful reminder that people are never defined by a condition or a disease. storytelling really has this ability to create empathy and connection and real change. We're so grateful for the work that you're doing and we can't wait for our listeners and our viewers to experience this film and the voices behind it. We Elizabeth. Oh, why couldn't I think of that? Okay, we love Elizabeth. She is a delight. We loved talking to her. We loved hearing her story. and I am so excited to hear um and to watch how you put it together.
To everyone listening, we'll make sure to include links so that you can learn more about Rebecca's work, watch the teaser for Beyond the Diagnosis, and follow this project as it continues to unfold. As always, thank you for being part of Autoimmune Adventures and part of our community.
Remember that you are worthy of joy. Disease does not define your life. You do.
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