Episode #128: The Quiet Epidemic with Special Guest, Ally Hilfiger
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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In April I had the privilege of moderating the panel discussion for The Quiet Epidemic at the ReelAbilities film festival.
The Quiet Epidemic (which is available on Apple TV, Amazon Prime and Vimeo On Demand) is an eye-opening film about Lyme disease that manages to highlight the emotional toll of a patient’s journey with the illness and the scientific facts of the disease. Both of these elements are so important as patients and their families still face an uphill battle against faulty tests, slow research and doubt and gaslighting from the medical world.
During the panel I spoke with the film’s Emmy-winning producer Chris Hegedus, who helped first-time directors Winslow Crane-Murdoch and Lindsay Keys (who were introduced to each other by a nurse while being treated for Lyme) bring this topic to light. The panel also included 19-year-old Julia Bruzzese, a patient with Lyme disease featured in the film. Julia was at first hesitant to share her illness with the world, but knew her story could help other patients and bravely got involved in the film. Julia was joined on the panel by her dad, Enrico Bruzzese, who has been her caregiver and biggest supporter, going as far as to take their denied insurance claim to the New York Supreme Court.
This episode also includes my recent conversation with the film’s executive producer, Ally Hilfiger, who you may remember from Episode 33. Ally, who herself had Lyme disease, talks about her own story and how important it was for the film to include both real, digestible science and a patient’s story for the viewers to connect with.
All of these amazing people involved in The Quiet Epidemic remind us how important it is to be educated about a devastating tick-borne disease like Lyme, which is growing more and more common, yet still so difficult to test for and treat.
“Making a film even as a healthy person is really difficult. They were able to pull it off while having bouts of Lyme relapses!”
“We have to make sure that this doesn’t happen to anybody else. This was my way of shining a light on this really, really tremendous issue. If that meant being in an uncomfortable situation and exposing deeply personal experiences that I’ve had, if it’s going to help other people on their journey, that’s all that matters.”
Reasons To Listen:
Hear how both the subjects and the crew came together to create awareness around Lyme disease, and why it was so important to them.
Get a real glimpse of what Lyme patients go through physically and emotionally, and how often they are dismissed by medical professionals.
Learn how to support family and friends with chronic Lyme, starting with assuring them that they are believed.
Become armed with knowledge about the dangers of ticks and the inaccuracy of testing in order to be more vigilant against Lyme disease.
About Julia
Julia Bruzzese is a 19 year old freshman college student in Brooklyn, New York. Ever since becoming severely ill with Lyme Disease in 2015, Julia has been advocating for patient rights. Julia’s primary focus is helping other patients and families find the right resources on their journey to wellness. Julia is also the main subject in a feature-length documentary about Lyme Disease, "The Quiet Epidemic". Julia plans to pursue studies in biology on a pre-med track.
About Enrico
Enrico Bruzzese is a father, husband, Respiratory Therapist, and a Cardiac Diagnostic Specialist from Brooklyn, NY. He is currently a caregiver for his daughter Julia, as well as a Lyme Disease patient advocate. He is featured alongside his daughter and family in a feature-length documentary about Lyme Disease, "The Quiet Epidemic".
About Chris
Chris Hegedus has been directing, shooting and editing films for over four decades. In 2002 she was awarded the prestigious DGA Award for Startup.com. Along with D. A. Pennebaker, Chris directed the 1992 Academy Award nominated film The War Room. Other films include two-time Emmy Award winning film Elaine Stritch at Liberty, Emmy nominated Unlocking the Cage, The Energy War series, Town Bloody Hall, Moon Over Broadway, Depeche Mode 101, and Kings of Pastry. Chris is Governor of the Documentary Branch of the Academy of Motion Pictures.
About Ally
Ally Hilfiger is an artist, designer, writer and the daughter of fashion mogul and entrepreneur Tommy Hilfiger. As a producer, she created and starred in the docu-series Rich Girls for MTV, and as a designer, spearheaded the women’s clothing line NAHM that was featured in the documentary “Scatter My Ashes at Bergdorf’s”. Her 2016 memoir, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, explored her chronic battle with Lyme Disease. Ally lives in Los Angeles with her husband, artist Steve Hash, and daughter Harley Hilfiger-Hash.
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Harper Spero (00:04):
Made Visible helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
(00:42):
Hey guys, welcome to another episode of Made Visible. I'm your host, Harper Spero, and I'm so glad you tuned in. This week we have a really unique episode In May I moderated a panel discussion at Reelabilities Film Festival in New York City after the screening of the Quiet Epidemic at Reelabilities Film Festival is the largest festival in the United States dedicated to promoting awareness of the live stories and artistic expressions of people with disabilities. We had the co-founder of Reelabilities, Isaac Zablocki on the show, which was episode one 10, and I highly recommend going back and listening to it if you haven't already. The Quiet Epidemic is an incredibly powerful and heartbreaking film about the reality of living with Lyme disease and how much the medical world dismisses and denies this condition. On this episode, we're going to share the conversation with you from the festival with the three panelists. Be sure to listen to the end as I also interview past guest Ally Hilfiger, who is the executive producer on the film, and we discussed her involvement. Thanks for tuning in.
Isaaac Zablocki (01:46):
I'm gonna introduce our host who will introduce the rest of our panel here. Thank you so much for this important film. Harper Spero is the host of the Made Visible podcast, among other things, which is a podcast that gives a voice to people with invisible illnesses. Harper, wanna take the stage?
Harper Spero (02:02):
Hello. I've been a fan of Reelabilities for a long time, so I'm very happy to be here tonight. I have Enrico Bruzzese, who is the father of Julia, respiratory therapist, and a cardiac diagnostic specialist. Julia Bruzzese is a 19 year old freshman college student and Chris Hegedus is the producer of the film and has been directing, shooting, and editing for over 40 years. I'm honored to be here as the host of Made Visible. I've had Isaac on my podcast a few weeks ago, an executive producer, Ally Hilfiger, was also on my show and she's a delight. I was hoping she was gonna be able to be here tonight, but I'm happy to be here with you. How did the creation of this film come to be? How did you decide to make this and bring it to life?
Chris Hegedus (02:49):
Thank you for having us here. We're really honored to be at this festival. Well, the directors Lindsay and Winslow apologize for not being here. They're actually in Milwaukee at another film festival. Both of them have chronic Lyme disease and they met at a Lyme literate doctor. Basically, they were both at the same doctor but didn't know each other and going through chronic Lyme symptoms, suffering a lot. And the nurse said to Lindsay that, you know, people recover faster if they have a passion. And Lindsay said, well, my passion is filmmaking. And the nurse said, well actually there's this other, I met them about a year or so after they started filming through some mutual friends and I also had people in my family that suffered from chronic Lyme and was really interested to help them. They were first time filmmakers and pretty sick at the time and could really use some guidance and help. So that's how we began this process. We filmed for another five years after that. So it's, it's been a long road. Wow.
Harper Spero (03:49):
And then how did, did Julia and Enrico get involved?
Julia Bruzzese (03:52):
Well, I was being treated at the same clinic as Winslow and Lindsay and they approached my father, well, Winslow did asking if we wanted to be a part of the film. And my dad asked me one day, he's like, there's these filmmakers that wanna make a film about Lyme disease and they want you to be a part of it. And you know, at that point I was newly sick. I was newly in a wheelchair with this new disability. You know, I was kind of embarrassed of everything that was happening to me. I went from a very active member of my community to now, you know, wheelchair bound with a severe illness. I didn't wanna really face people. And so when he asked me that, I was like, oh, I don't know. I don't know if I wanna expose myself in that way. You know, I took a few days to think about it, <laugh>,
Enrico Bruzzese (04:43):
I kept asking
Julia Bruzzese (04:44):
<Laugh>. Finally I came to the conclusion and I wasn't the only one going through this. I kind of came to the conclusion and I think my dad did as well, and the rest of my family, we have to make sure that this doesn't happen to anybody else, to the best of our abilities. And this was my way of shining a light on this really, really tremendous issue. And if that meant being in an uncomfortable situation and exposing deeply personal experiences that I've had, if it's gonna help other people on their journey, that's all that matters.
Harper Spero (05:21):
What did you each learn along the way?
Julia Bruzzese (05:23):
You know, it was hard to ignore from the very beginning that we got stuck in a mess. We got the wrong disease. And you know, at every turn I was just really shocked about what I was seeing and what was happening to us. You know, in the film I, I said at a certain point I felt like I had to start recording for me, even though we were both embarrassed, nobody knew Julia was sick in our circle. We didn't tell our friends, our extended family, we were hiding all summer long cuz they were accusing her of, of faking it, of being crazy. But thinking about it and trying to convince Julia, I said, this is a way of recording everything we need to get the word out and what better way to do it with this film. And I think it's getting the word out. I think we accomplished our goal
Chris Hegedus (06:10):
Well. I always learned so much from making a film. I mean it's a real privilege to kind of be dropped into the world of somebody else and let them share your life. And I'm really grateful to this whole family. More of them are here tonight and they've supported this film so much. But along the way I've, I've just learned so much about this disease and you know, when we show this film, there's usually several people who also have Lyme disease and feel very seen by this story and all the people sharing their stories. Also, I've learned that almost everybody I talk to know somebody that has chronic Lyme disease, that it's really prevalent and that just so much needs to be done. The tests are so faulty and you know, I know that also the treatment is, and doctors need to be educated. I mean there's so much research and information that needs to go on with this disease.
(07:01):
Just last fall, two people in my family were diagnosed with Lyme. They got Lyme disease, they went to a doctor, went to one clinic and got the standard three week regimen of doin and the other went to a clinic and got one pill, which is kind of based on a faulty graduate student study that kind of traveled around the internet and doctors started using because nobody wants to overuse antibiotics and I understand that. But at the same time, this disease is life threatening and they'll give you a year's worth of antibiotics for having acne. Things are just really out of scale in terms of treating this disease and and really understanding what it is. So we're really hoping to get the word out to people to pay attention to it and can go on our website, the quiet epidemic.com and share your story and find out information about what to do if you get bit by a tick.
Julia Bruzzese (07:53):
What I've learned is that, I mean Dr. Neil Specter asked a very good question. The question isn't why me, but how do you move beyond that? And I guess this was my way of learning how to move beyond it and try to use it for good. And I've been to many screenings so far and the most satisfying and reassuring part of it for me is to see the people in the audiences who are asking really important questions. They see what we are seeing and what we are experiencing and they're asking questions and they're becoming aware. You know, I think that's the most important part.
Harper Spero (08:28):
I was sitting behind you during the whole screening and watching the two of you sort of interacting and looking at each other and just going like, how do you go through this? It's just so complicated and you're so lucky to have each other and to have the dad that you have really, that's very clear. As you said it, your sweet 16 while sitting there. Is there anything that you observe new each time?
Julia Bruzzese (08:48):
Yes, definitely <laugh>. They did a really good job of informing people and there is so much information because this disease has been around for a long time and so much has happened with the vaccine and the testing and it, it could be very complicated and I think they put it in a way that was easy to understand given the information. So yeah, every time I've watched it I kind of learned something new.
Enrico Bruzzese (09:14):
I think it took me like four times to get everything <laugh>
Harper Spero (09:18):
Enrico. In watching this and going through this process and these screenings, have you seen the care for Julia change over the years since you started filming? Since this came out?
Enrico Bruzzese (09:29):
If you mean through mainstream medicine, there is no change. We're dealt with as much indifference as we were in 2015 than we are today. The key is to see the right doctor and unfortunately those doctors don't accept insurance. It's very simple, but they know about Lyme and tick tick-borne disease and they also know about other common diseases that mainstream doctors would know about. So you need to go to a doctor if you want the right care who has all the information. If you go to a doctor who doesn't because of insurance company policies, I mean you're not gonna get the right care.
Harper Spero (10:06):
So for each of you, I'm curious to hear what is the one takeaway that you want people to have in watching this film?
Chris Hegedus (10:13):
I'd like just to get the film out to the public. We're going to be just releasing it on v o d on Amazon and Apple iTunes and some other platforms ourselves. And we'd like to take it to medical schools and doctors and universities to show it. And we have a campaign that we're kind of raising money to go out and do that as well as to go to congress with it and bring awareness to Congress and get more money from the n NIH to be put towards research and the money that's been given cuz they have increased some money recently for Lyme that it goes to new forward thinking doctors as kind of is said in the film, pass this information on. I think that's what's really important is just to get the word out about Lyme disease and chronic Lyme.
Enrico Bruzzese (10:59):
I'm gonna leave the best for less, but I agree with Chris's just spreading the word. If you have social media, put it out there. It's just getting as many people as possible to hear this and to be aware and to know the symptoms and knowledge is everything.
Julia Bruzzese (11:13):
Yeah, I mean exactly what they said. It's just about being aware. Ticks don't discriminate so literally anyone can get it, you know, it's in Brooklyn, it's in the city. We know people who've gotten bitten by tics on the subway. Just be aware of the signs and symptoms. Be aware that the tests aren't reliable. So if you test negative, that doesn't mean you don't have it. Just know the basic misconception that we're explained in the film. The goal is just to inform
Enrico Bruzzese (11:41):
Also the website. There's a, a way of sending letters to your legislators and politicians
Harper Spero (11:47):
And that's thequietepidemic.com in case anyone didn't get that.
Chris Hegedus (11:51):
One thing to add is if you do get by a tick, save the tick. You can send the tick in. There's various labs, you can find them on our website and a few other of the Lyme organizations' websites tell a lot of information because the tick will tell you exactly what it has in it. So it's a really good way to know on the websites. There are other labs which unfortunately are expensive. Some of them are up to a thousand dollars for a test. If you're a senior citizen like me, you can get them covered by Medicare, you know, there's some that are cheaper, but they will give you a test that have those bands kept in them so you'll get more of an accurate test if you're positive or negative for Lyme.
Harper Spero (12:28):
Thank you. One other question before I open it up to the audience. So my podcast is made visible about invisible illness. You name the, the film, the Quiet Epidemic. Where did the name come from? Quiet, invisible. It's just this really depressing thing that so many people are living with all these different conditions quietly and invisibly. So I'm curious where the name came from,
Chris Hegedus (12:50):
Mary Beth, you know, who says it at the end that it's a quiet epidemic that people are struggling with it and it's not really known, but I think it's getting more known. I mean, ticks are spreading, you know, because of climate change because we've moved into their environments. You know, there's a lot of different reasons why we're coming into contact with them. I think a lot of older people here would say, well you know, I never saw tick, you know, when I grew up or whatever. You know, that's really true for most of us, but you know, it's changing. Now we have to come to grips with that reality.
Harper Spero (13:19):
Thank you. I'm gonna open it up for questions.
Audience Member (13:21):
You obviously got some threatening, I would call them threatening calls from the cdc d c and I know that the last time I saw you, you said you were going to testify in front of the New York Supreme Court. I would love to know what the reception to the film has been from the medical community. Have you been getting more threatening calls and also how did it go at the Supreme Court?
Enrico Bruzzese (13:41):
So no one, no one's reached out to us about the film or lashed out to us about the
Julia Bruzzese (13:47):
Film only with only with positive feedback.
Enrico Bruzzese (13:49):
Yeah, we've gotten a lot of positive feedback, which is great. And not in the medical community. <Laugh>, I know nobody from the medical community that we know or deal with.
Julia Bruzzese (14:00):
Well it was screened at my brother's school at nyu. Oh yes, yes. And you know, there was doctors there that were hosting it
Enrico Bruzzese (14:07):
And s it and scientist
Julia Bruzzese (14:08):
And scientist mainstream people from nyu and they were very, I feel like
Enrico Bruzzese (14:13):
They came for my son Adam cuz they knew his sister was in the film. He's also in the film, he's sitting right there <laugh> and they came for him and they were really riled up by the film and at the end they were angry. How can this be allowed to go on, you know, that sort of thing. So thank you Julia <laugh> for reminding me of that. I forgot. And the Supreme Court thing was because I was trying to get Julia Care that can show some benefit, but it's outta state, it's in Louisville, Kentucky and our insurance company denied us. So I, I fought and we got three denials and then I had no other options. So I found out I could sue the state of New York with an article 78, but I couldn't find an attorney who knew what an article 78 was or one that would be willing to take us on pro bono. So I did it by myself and I won. So now we're gonna go to Kentucky.
Audience Member (15:07):
I'm still unable to wrap my head around is that this bacteria, this SP key has so many different patents on one bacteria. How is this possible and how is it going to be possible to make any medicines? Because the cost you have to pay every single company who owns a piece of this bacteria. How are therapies being made and how can pharmaceutical companies learn from the researchers? Where's the money going? I mean I've seen the movie a few times now and I go back to these facts that you displayed and I cannot wrap my head around it how this can continue to cost so much and what are these new therapies? How can they really exist with lack of real information because of all of these prohibitive things that have happened in the past?
Chris Hegedus (16:00):
Thank you for that question. I mean, a lot of it, as you know, it's a for-profit healthcare system and when you have that system, you know, it falls into all these type of things and that bacteria is patented by so many people. I mean, you're pointing out what a lot of this is about. It's all about money. You know what that one researcher said, it's what it all comes down to is that people wanted to profit off the making of a vaccine and then they still wanted to profit off of it after it wasn't effective in 2000. So we've waited all this time with this faulty test and they're putting out vaccines. I think there's three that I read that are coming out soon. One of them I know was in trials when we first released this film and Martha's Vineyard last summer happened to be the weekend they arrived there with their testing truck trying to get people to be volunteers to take this test. I heard very little about it. It also supposedly went to the Hamptons and I didn't hear much about it there. So I don't know what's happening with that test. And the other two tests are slightly different kinds. I'm not a biologist so I can't really comment on them. But yeah, I mean for-profit healthcare we end up in things like insurance companies only paying for 10 minute visits.
Enrico Bruzzese (17:16):
I also just want to point out that even that test that you can get that includes those bands that is expensive is inaccurate and there's more than one reason why the testing for Lyme is inaccurate. You know, it's an antibody test and it highly depends on a healthy immune system. The bacteria does not like to live in the blood and there are other reasons. So even spending that money, it's not a reliable test and that's just something to keep in mind. Well,
Audience Member (17:41):
How would you tell someone to avoid getting Lyme? What would you tell them?
Enrico Bruzzese (17:45):
I would tell people to check their bodies. Of course these ticks like going places, I can no longer reach <laugh>. So you know, you, you have to really pay attention to the symptoms and the signs and just, I think knowledge is everything, body check. And you have to be careful, like know your surroundings, know the areas you're in and
Julia Bruzzese (18:04):
Tick repellent. You could also treat your clothes with, there's certain repellents that are sold for your clothes because a lot of people don't even realize they were bit in, they don't develop a bullseye rash at all. And that's why they get so sick because they don't know they have it and it festers for years until like they're fully disabled. So I think it just be aware of the signs and symptoms of the disease clinically. And if you see that you are getting symptoms and there was a chance you could have been bitten, you get treated as fast as possible.
Audience Member (18:33):
I, I feel bad how little I knew about this for sure. It's very heartbreaking to just see at such a young age, you know, you're dealing with doctors not believing you, you know, you talk about just how bad you felt when your father left his job wasn't making money, like just this whole disability is evolving. Can, can you talk just about how, what was it that kinda kept you going and fighting and not get into that, you know, really like deep depression for all of these factors here at such a young age there.
Julia Bruzzese (19:04):
Thank you for your question. I had people there to kind of advocate for me, my family definitely, you know, it was still very hard. There were times where, you know, it felt very easy to give up and lose hope. But no, it was definitely my family that really carried me through it. I think back to that time and like when I watched the movie, the things that were done in those hospitals, you know, I was a child that could have been so damaging to me. It has damage in my trust in our medical society and just to be accused of those things, you know, it is damaging, but it could have really gone down such a, a hard road, a such a dangerous road if I didn't have my family. Because I know people who have been down that road who have been put in mental institutions. Allie Hilfiger was one of them. I thank God every day that I had my family and years ago I couldn't imagine trying to live a normal life. And now I'm in my first year of college, I'm just finishing up. So thank you. But I I wouldn't have been able to get here without the support of my family.
Isaaac Zablocki (20:07):
Folks, we're out of time, but I wanna thank you all for being a part of this. Thank you so much for moderating this beautiful conversation, for joining us for this important film. It's really a film that hopefully you'll spread the word about. Thank you all so much.
Harper Spero (20:27):
Now that you've heard my conversation live from Real Abilities in New York City, here's my conversation with executive producer Allie Hilfiger. You can hear her whole story related to Lyme disease on episode 33 of this show. I highly recommend going back and giving it a listen. Now here's Allie. Allie, it's so nice to see your face and I'm so happy to have you back on Made visible. Thank you for doing this.
Ally Hilfiger (20:51):
Thank you Harper. So nice to see you again.
Harper Spero (20:53):
Always. So as you know, I moderated the panel about the quiet epidemic and real abilities back in April and we missed you there, so I figured why not get your 2 cents about the film. How and why did you get involved As executive producer,
Ally Hilfiger (21:09):
I was connected with Lindsay Keys through a mutual friend of ours, Simon Hammerstein, gosh, I wanna say about seven years ago I met with Lindsay and immediately our energy is totally aligned and I really understood what she was going for and, and what she was exploring was really fascinating to me. And she was just very genuine and authentic and I was excited about the path that she was choosing toward telling the story about Lyme disease in a little bit more of a science-based way and factual, but also following a story I thought that was really important to keep people engaged. So I, I wanted to come on board right away and I started helping connect with other people to bring in money, et cetera. And the film has been through so many iterations, so much footage was taken and you know, poor poor Lindsay and her code director Winslow were both really sick with Lyme disease as well.
(22:01):
And that's how they met in the doctor's office. I had so much compassion for them being so dedicated to making the film, making a film even as a healthy person is really difficult. So the fact that they were able to pull it off while having bouts of Lyme relapses. So I just kept being like, just take care of yourselves as much as you can. I felt like very maternal <laugh> wanting to say, don't let it stress you out too much. And, and every, every film has sort of like its own energy around it. I, I always think it has like a guardian angel with every film and it either reaches the point where it needs to be or people get stuck and they give up and they did not give up and I'm really, really impressed with that. It was a really difficult story to tell, especially with Julia and her family and the doctors. I mean it's real, real stuff. So I was just really proud to be a part of it and help them out.
Harper Spero (22:51):
Yeah, and you bring up a really good point about the combination of science and storytelling because I think so often you can get one or the other and as a viewer who didn't know so much about Lyme, aside from obviously hearing your story and others on the podcast, it was such a good combination of really learning the data, the stats, the scientific research behind it or lack thereof and then follow this girl's story and see all the challenges. It's so clear that there was determination in that family to get answers and also as you are saying, determination to make this film even with everyone going through their own experiences with Lyme.
Ally Hilfiger (23:30):
Exactly. One of the goals, and we talked about this a lot while making the film, is to make sure that, you know, there's a lot of legitimate information, legitimate people delivering the information in a very absorbable way. There are people out there who might spew off information that's not really research or factual and, and doesn't have a strong backbone and can come off as a bit wacky. There is an assumption sometimes that all these wacky Lyme disease people and, and there's this stigma around it. And that really upsets me as a very legitimate science-based serious person so to speak. I really was very hellbent on the information being delivered in a very, very serious way that everyone could accept.
Harper Spero (24:15):
Yeah, I think that's really important. What is the message that you want people to take away from this film?
Ally Hilfiger (24:21):
The message I want to be taken away is the power of self-advocacy and not taking no for an answer when you know in your heart that there's something else wrong. Sometimes you just cannot believe doctors, they are humans also they're human beings that may or may not have the correct information. And there is also so much inaccuracy in terms of the blood testing. So I think that there's an element of, again, determination within the patient and the families and I think that was a huge takeaway. And also the, that Lyme disease is, is everywhere now and that it has so many different symptoms that could be very easily ignored. And so just, it's, it's sort of like an eye-opener. I, my my goal was for it to open up people's eyes and to educate. And for me that was the point of my book also is to educate and mine was educating through storytelling and weaving in science-based facts, et cetera, but really, really educating people who knew nothing about Lyme disease and keeping them engaged at the same time because it can get, you know, dark or maybe even a little bit boring to people.
(25:28):
But if you can keep them engaged and have them really able to understand what Lyme disease is and why it is so serious and why we really need to be paying attention and why we need to really be standing up and fighting and advocating for ourselves and others who are suffering. And I really do believe that once you've overcome or gotten to a place of remission with Lyme disease, it is so important for us to reach out and help others who are suffering as well.
Harper Spero (25:55):
How can people who do not have Lyme disease be supportive of those living with Lyme disease? How can they advocate for them? I
Ally Hilfiger (26:03):
Think a lot of it has to do with compassion. There's a compassion element that helps Lyme patients because there's a point when you're sick where you just, sometimes you just need to be validated. Cuz I mean, in my experience I just thought, oh my gosh, am I like totally blowing this out of proportion? I mean, am I going crazy? Is this just ridiculous? I'm tired of myself. And to have the emotional support of the validation and the compassion is really key and saying, just don't give up. Don't give up. Don't give up. Don't give up. Don't give up. Keep asking questions, keep pushing the doctors, keep pushing the medical community. This disease is so persistent and it can sneak up again on you and sneak up again and attack you attack. And it gets really exhausting. Again, the emotional support from family and friends is so important to say, you know, this is a real thing, you're gonna get through it. Keep going. Maybe we should find another doctor or, or stay on the protocol you're on. I mean, I think it's really difficult for people to stay consistently on one protocol and finish it through because halfway through you're just like, oh my God, I still don't feel better. It's like, don't give up yet, just keep going. And you need that cheerleading, you need that support. So that, that to me is the, the most helpful thing.
Harper Spero (27:17):
Yeah, and I also think that's really relevant in general to people with invisible illnesses and having friends and family members and people that love them to provide that level of support. Did you learn anything new about Lyme disease and the diagnosis from the film? I
Ally Hilfiger (27:33):
Did, I learned more about the reasons why the vaccine took away the titers and why the testing is so inaccurate. I understood that, but it was explained in such a visually strong way that I understood why they were missing those levels. And, and I, and I had these same exact experience when I was tested. I mean a few times when I was young, very, very young when I was first bitten and also again when I was 13 and I remember the doctors saying, well, it might be ms but you almost have Lyme disease, but there, but it's not quite there. And I knew that there was something up with that. So I, it was really clear to me because of the history of the vaccine, which I didn't do a lot of personal research on the, the original, original Lyme vaccine and, and how it affected the testing today. So that, that was really interesting. It seems silly that I wrote a whole book and, and didn't quite grasp that fully, but I'm a visual person, what can I tell you? I needed to see it visually explained in this way. And I think the film did such a beautiful job and really clearly getting people to understand just, it was just as simple as that.
Harper Spero (28:39):
I feel like I knew a level of information and then watching it, I'm also a visual person and seeing it in front of my eyes and just going like, how is this just disregarded in such a major way? It's so right. Sad. And you don't hear about any other condition that's treated this way to this extreme.
Ally Hilfiger (28:57):
I know there, there's so much of the medical community that just turns a blind eye or denies, denies the symptoms. Ugh, no, you're just making that up. You just have to go on antidepressants, you just have to start exercising. You're trying to get attention or whatever crazy thing it is. It's like this is insane. And there's so many people that are so sick all saying the same thing. I mean, come on, they're, they're, they're not teaching this correctly in medical school, which is just so infuriating to me. And, and that's something that I would love to change is the way that Lyme disease is really pushed through the educational system in the medical community. I think that's key because if one nurse has gotten a proper education in Lyme disease in the office, she can kind of start to recognize, and that's what happened to me really when I was in the hospital and the psychologist or psychiatrist thought, gosh, she's got all these symptoms, they all point to Lyme and because she was familiar with the disease and she knew. So education within the medical community I think is probably the most important thing that could happen right now.
Harper Spero (29:56):
And it's also such a reminder that it could take one person to get you a diagnosis and get you the treatment. I mean, I think about my own story, which is that I spent 10 years looking for answers and it took one immunologist to do one test and go, Hey, you have this immune deficiency, but all these other doctors didn't. So really if there's more education and more knowledge around this condition, more people can diagnose it more easily.
Ally Hilfiger (30:24):
And also the the testing just needs to change full stop. There just needs to be new tests. I mean, if, if now if I got bitten by a tick right now, I would not know really like what to do, where to go. I mean, I have to order an iGen X test and pay thousands of dollars to get the test and get a doctor to approve the test. I mean it, you have to jump through hoops to get an accurate test and pay so much money and, and the amount of money that needs to be spent to get cur it, it makes me so angry.
Harper Spero (30:51):
Given that information. I appreciate all that you do for the Lyme community and invisible illness community as well. And continue fighting the good fight and hopefully more people will be seen and supported in the Lyme community because of this film and your book and all the work that you do. So thank you.
Ally Hilfiger (31:09):
Thank you Harper. I, I wish I could do more. I'm so grateful that this film is here and I'm so grateful for your podcast and thank you for watching and listening and everybody out there. I really, really appreciate it.
Harper Spero (31:23):
I hope after listening to these two interviews, you'll check out the Quiet Epidemic. It's now streaming on Apple tv, Amazon Prime, and Vimeo on Demand. It's a great way to educate yourself on Lyme disease and learn how to be a better advocate for those living with this very challenging disease. More information about the film is available@thequietepidemic.com. I also encourage you to check out Readabilities and see how you can attend and get involved in future screenings. Their website is real abilities.org. Also, check out episode 33 of the podcast, which was Ally Hilfiger's original episode. And you can pop over to Instagram and watch the replay of our Instagram live from early this year where she gave updates on her life and her health that's made visible stories on Instagram. And finally, we're gonna take a little summer break from the show. We'll be back in the fall with all new episodes. If there are topics or stories that you want us to share about, please email hello made visible stories.com or DM us on Instagram made visible stories. This is a great time for you to go back, listen to previous episodes and share them with friends and family. Have a great summer and thanks for listening.
(32:41):
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