Episode 81: Addiction, Lupus, & SIBO w/ Trust Me, I’m Sick

Episode 81: Addiction, Lupus, & SIBO w/ Trust Me, I’m Sick


Trust Me, I’m Sick is a docu-series produced in partnership with nonprofit Suffering the Silence that explores how chronic illness affects the everyday lives of five people living in Los Angeles, California. Ezra (18), Giuliani (29), Henriette (50), Matt (32), and Cassandra (28) share intimate stories about how lupus, HIV, and other conditions shape their relationships, careers and visions for the future. In this episode, Lauren sits down with creators and co-producers Sarah Stewart (living with SIBO), Erica Lupinacci (living with lupus), and one of the subjects of the doc, Henriette Ivanans-McIntyre, who has survived drug and alcohol addiction and had two kidney transplants due to unrelated glomerulonephritis (chronic inflammation of the kidneys). As two women living with chronic conditions themselves, Erica and Sarah realized that while diagnoses and life experiences may differ, feelings of being misunderstood, silenced, and dismissed are often shared across the chronic illness community as a whole. Frustrated with the lack of illness and disability representation in front of and behind the camera, the team was committed to employing and involving people with direct, lived experience with illness in all aspects of the series. Trust Me, I’m Sick was made by an entirely female crew, all of whom have personal experiences with chronic illness. It was crucial that it was made for the community, by the community. It was made while in the midst of a clinical trial, edited from infusion chairs in the hospital, and developed while wearing heating pads in bed. 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 so often stigmatized. And we’re here to talk about why.



Trust Me, I'm Sick Erica Lupinacci Sarah Stewart Henriette Ivanans-McIntyre Uninvisible Pod UP lupus SIBO addiction alcoholism kidney disease transplant

Lauren: All right, guys. Thank you so much for joining us. I am here today with the creators, producers and director of Trust Me, I'm Sick, which is a documentary series about chronic illness that was made in partnership with Suffering the Silence. We also are lucky to have one of the subjects of the doc here with us today. So we've got Erica Lupinacci, Sarah Stewart, and Henriette Ivanans-McIntyre. So guys, thank you so much for joining us. It's a real pleasure to have you on today. So many of us in the community have been absolutely touched by the work that you're doing. And we're just thrilled to speak to all of you.

Sarah: Thank you for having us.

Lauren: Yes, absolutely. So that's Sarah, if you guys hear Sarah's voice, she is the director of the film and brought the idea to Suffering the Silence for partnership. And Erica is one of the co-founders of Suffering the Silence, as well as one of the co-creators of the doc and producer. And then Henriette is one of the subjects of the film. So you guys, this is such a pleasure. I'm so thrilled to have you all on. So, we talked about quite a few questions I have for everyone as we go into this, and we're going to respond here and there. Everyone's going to give a little snippet of their story, so that you guys can all work together in creating this additional platform story for us today. So why don't we start at the beginning. Who wants to tell us how and when you first realized you were sick, and what you've done to control your health since?

Sarah: I’ll go first.

Lauren: All right, Sarah, go for it.

Sarah: Sure. So I got sick back in 2015. I was 20, I was living in London, and I just graduated college. And it's kind of that classic chronic illness story where I went from this insanely healthy 20-year-old to, pretty much overnight, not being a healthy 20-year-old. And through our conversations through the series that we've had in general, through my journey over the last few years, I realized how common my experience was. You go from really knowing nothing … I didn't know what the definition of chronic pain was.

I had no idea what chronic meant honestly, despite graduating college! And very quickly, I found myself thrust into doctors’ offices and hospital appointments.

Looking back at that very early period, it was just a blur. There was of a lot of fear and scariness. I remember I was told by my doctor at the time … every Friday … “Next Friday, when I see you, we’ll know what this is. We'll be able to take care of it.” I got my diagnosis last summer. So that's five years later.

Lauren: On the average … that’s probably about the average it takes for most, women in particular, to get diagnosed with an invisible chronic illness, if not longer.

Sarah: Yeah, I count myself lucky for having a diagnosis frankly. I don't know how many Fridays that is since I first spoke to my doctor, but it's a few. So looking back on it, it’s been a pretty wild five years. My diagnosis is SIBO — small intestinal bacterial overgrowth. Which basically means that my small intestine doesn't play nicely. And I'm lucky that my symptoms now are much more controlled than they were.

Lauren: So have you gone through a process of eliminating the bacteria from your intestinal tract, and sort of reintroducing more nourishing minerals and vitamins and things?

Sarah: Yep. So I've had the joys of doing FODMAP, which a lot of people, I’m sure, know and love. Part of the reason it took so long to diagnose the SIBO is that it's still pretty rare to be diagnosed; they don't know that much about it — in contrast with Crohn’s or other conditions. So for a long time, they actually thought I had Crohn's. But basically, for me, I did every test under the sun. I saw these amazing doctors in Harley Street in London, I was very lucky with that. And still, I just wasn't fitting with any of the things. I've done a ton of work on diet. I actually did a clinical trial at Cedars-Sinai Hospital here in LA last year, and my symptoms got worse. So they concluded that I probably had the placebo. But I'm happy that I still did the trial. But yeah, it's definitely been a long road to get to where I am. And I'm lucky because having essentially flared for over six months straight, and I was in a position where I couldn’t work, I'm now able to work and have found ways to kind of live my life in a way that's less painful than it was.

Lauren: Thank you for sharing that. I was wondering if we could just quickly get Erica to chime in on this one, too. Can you tell us what you live with Erica, and how you've gotten that under control. And how it's been involved in the foundation of Suffering the Silence, and how you got involved in the filming with Sarah?

Erica: Sure. I was diagnosed with lupus when I was 18, which is a little over 10 years ago. It took me three years to get the proper diagnosis. I was misdiagnosed with ankylosing spondylitis at one point about halfway through my diagnostic journey. But even just as a kid, I kind of always felt like I was sick or something was off. I was always sick more than other kids, and missed a little bit more school than other people did. So I definitely always felt like something was off, but I didn't start experiencing symptoms or anything that really worried me and my parents till I was 15. It took me getting very, very ill with fluid around my heart and lungs and inflammation in both of those things, and not being able to breathe and all of that, and being hospitalized for a week — until they finally were able to diagnose me with lupus. So that was that.

I think the first few years, I rode the high of finally having a diagnosis that felt right, and felt like I was being treated properly and I knew what was going on.

And thankfully, I don't know how, I got diagnosed right at the end of my senior year of high school and I was able to go to college at the end of that summer and graduated college in four years — which I feel very fortunate that I was able to do. I had a like okay few years. And then actually when I moved to LA about four years ago, I've pretty much been in a flare since then. The way that my lupus flares is inflammation of the pericardium, surrounding the heart — pericarditis — and that's what eventually put me in the hospital when I got diagnosed. That’s usually how I flare. That's become chronic now. So we've just been trying a lot of different medications and dosages and all of that to figure out how to make me a more normally functioning human. So we'll see. It's been a little bit better the past few months. So that's good.

Lauren: I’m very glad to hear you're feeling a little better right now, especially in the midst of this COVID pandemic.

Erica: Yes, good times. But the founding of Suffering The Silence kind of happened right after I graduated college. Allie, my co-founder and I, we went to middle school and high school together and we were the best teenage friends, obsessed with each other and talked about everything. We're so, so close. But we were both chronically ill and never really talked about it with each other. And after we graduated college, Allie had gotten a book deal to write about her experience with Lyme disease. And I had had some PR experience and was helping her a little bit with social media and all that. And as we started talking about it, we realized that, though we had different diagnoses, our emotional experience was very similar. And if we were the best of friends and didn't talk about it, there were probably other people that weren't talking about it. And we wanted to form this community where people could talk about it and not feel like they have to sugarcoat their experience; that they could just speak openly, honestly, about what it really means to be chronically ill. It's been almost five years now since we started it. It started just as an online community. We turned it into a nonprofit a few years after that. Sarah approached us, over two-and-a-half years, almost probably three now at this point. And that was so exciting to me, because we’ve explored a lot of different photography projects and things online, and a lot of different art forms. But film is a personal interest of mine and a career goal, and having the opportunity to create this documentary series was really a dream for me — and was a natural next step for us as an organization. So it's been exciting. 

Lauren: Very exciting. And Henriette, can I pivot over to you … I know that you're living with multiple diagnoses and you've even written a book about it yourself. So can you tell us a bit about your experience too?

Henriette: Yeah, of course. Thank you so much for this. Well, let me just start by saying I'm 51, and this all started when I was 13. So I'll try to keep it short! When I was 13, I had a series of really, really high fevers over the course of a year-and-a-half. At the time … I was living in Toronto, Canada … they thought that I had an acute kidney infection. And it ended up being, after multiple hospital stays, chronic kidney disease, or specifically glomerulonephritis, which is inflammation of the filters that surround the kidneys. And the pathology that came back was a very unique type of scarring, where I had three different types of scarring happening at the same time. So they never knew how I got it. It was through a virus. I never had mononucleosis, I never had strep throat. I never had lupus. I never had any kind of autoimmune disorder.

So eventually I would lose the function of my kidneys and I would have to have my first kidney transplant when I was 19.

My mother was a match to give me a kidney, which was mind-blowing and extraordinary. You have to remember this was in the late ‘80s. And so all of these immunosuppressants were still really, really new.

Lauren: And probably a lot more damaging to the system, then.

Henriette: Yeah, in fact, one of the medications I take is cyclosporine because I can't actually tolerate one of the newer drugs, tacrolimus, or Prograf. This transplant lasted me a good, I would say, 21-and-a-half years; I was really, really fortunate. And then around that time, I went into chronic kidney transplant rejection. And at that time, I ended up becoming … now I believe I was always an alcoholic and I believe I was born that way … but I turned to drugs and alcohol to cope with that.  And that's a whole other part of my spiritual and mental and physical healing. 

Lauren: Which is, in and of itself, also an invisible chronic condition.

Henriette: Absolutely, 100%. I a hundred percent believe that. It's actually listed in the American Medical Association as a physical and psychiatric disease, because it has symptoms and it's progressive and it responds to treatment. And then in 2011, my husband … it’s almost been 25 years now that we've been married … he was a match.

Lauren: I just want to say for everyone who's tuning in right now, as Henriette is saying that her husband was a match … Erica and Sarah, who know this story well, are here on Zoom with us, clapping! It's just amazing because, what luck to not only have your mother be a match, but then your husband. So you've never had to be on a waiting list for an organ?

Henriette: I follow so many younger people actually that need a kidney, and they've been on dialysis for years. I've only had two short stints on dialysis. I'm extraordinarily fortunate. It is no way to live. Oh my gosh. It's poetic, it's serendipity, it's all of those things. I mean, he really is, on so many levels, my soulmate. I'm in recovery from drug and alcohol addiction. I've had two kidney transplants as a result of being on these immunosuppressants for so many years now … I guess it's 37 years or something. A few years ago, I developed what we think is a combination of a neuropathy and some kind of damage to my nerves.

Lauren: And this was likely caused by some kind of virus, in terms of root cause?

Henriette: No, the root cause was never determined, unfortunately; this was about five years ago. It was actually a rash that I got, and it was some kind of fungal infection. Nobody really nailed it down. Years of doctors; years of Eastern, Western medicine. Three different series of dermatological investigations at UCLA and Cedars and USC. And as a result, there's some kind of damage to my nerves.

I'm in a constant state of … like an electrical current going through my body.

It vacillates, and I've definitely discovered that diet can help that. Then, I also live with chronic migraines.

Lauren: And when you say this electrical current moving through your body, it's chronic pain, just so that we're clear with everyone who's tuning in. It’s not just like a fun electrical current! This is something that's causing a burning sensation in your limbs pretty much all the time. 

Henriette: The heat of it and the burning of it is less now. But yeah, it's in combination with a kind of tinnitus. It's some kind of neurological damage; it’s constant.

Lauren: It's very interesting because you're now straddling the lines of living with diagnosis, and living outside of it. So you've got that sort of dual existence. But in the meantime, you've been able to heal from addiction and get into remission, and sort of peel the layers back on your own work, haven't you? 

Henriette: Absolutely. In fact, I kind of divide my health journey into two categories  — pre-sobriety and sobriety. I handled being sick very, very, very differently when I was younger and didn't understand what alcoholism was. And today, a spiritual solution is very much a part of how I heal every day. It's daily work, for all of us, I think. We have to make the choice every day to start all over again, and decide … are we going to sink into a place of depression and apathy. I’m sure you’re going to discuss this later in the podcast. Or, are we going to make certain choices to deal with this?

Lauren:  Absolutely. Well, I think what's so beautifully done in the documentary, Trust Me I'm Sick, is that there's no wallowing. Which is a big part of this journey to better health — mental, physical, and spiritual as well. There is a certain amount of sitting in the sadness, but we also have to move on with our lives, which is very clear in the message of the documentary. Which is something that I, personally, really related to. So we've heard from you, Henriette, about your husband stepping up as a donor; your mom had stepped up as a donor. We know from Erica that she had a best friend throughout this whole process. I'm wondering about personal advocates for the three of you. Did any of you find along this journey to health that you needed a personal advocate, and has that impacted your relationship with the individual?

Henriette: I can certainly speak to that if they don't want to jump in?

Lauren: Go for it. 

Henriette: No, 100%. I had a really significant experience with my mother when I was younger and I had been transferred from the Children's Hospital in Toronto to the adult hospital … and I met my nephrologist, my kidney physician, right before my transplant when I was about 18 years old. And you know, as all teenagers did in the ‘80s, I was all dressed up with my hair and my makeup and my big shoulder pads, and I went into my appointment.

Lauren: And you probably looked like you really didn't look sick!

Henriette: And I remember trying to explain — it was the first time I was meeting my nephrologist — how tired I was, and that I was sleeping 12 hours.

And he completely dismissed me and said, “Oh, all teenagers sleep 12 hours.”

And I lost it. I just started sobbing and I could not get my words. I felt so incredibly frustrated that I was not heard by this. 

Lauren: And this is a very common story, particularly among women living with chronic illness. 

Henriette: 100%, 100%. And so my mom had to finish the conversation. She tried to explain — she’s so hilarious — and she’s, like (in foreign accent) “You don't understand. My daughter is a fighter."

Lauren: Where’s your mother from? I'm trying to get that accent now!

Henriette: Exactly right. She's born in Denmark, but learned English in England, and then lived in Canada. So you figure that out.

Lauren: There’s our moment of levity. There we go!

Henriette: There we go. And on the street car ride home, she turned to me … I remember this … and she said, “You look too good. Stop wearing makeup.” 

Lauren: Oh, very early understanding! 

Henriette: I never forgot that. I mean, I could speak for literally hours about how my husband was my advocate when I was super, super sick with addiction and renal failure and rejection.

Lauren: Something that he mentions in the film, which I think is quite poignant, is the difference between being in a relationship and being co-dependent. Which is very important to understand that distinction when you're in a relationship with someone who is living with chronic illness — be that romantic or otherwise.

Henriette: 100%. That's a very, very hard distinction for people to make, especially when you're dealing with addiction. At one point, once I got sober, Kevin and I discussed it, and he said, “Well, what was I supposed to do? You're on dialysis.” And I would drink beer on dialysis and have a Xanax. And he’s, like, “What was I gonna do … kick you out?” It's very, very hard. But I should probably let these lovely ladies talk to you!

Lauren: You're doing great, Henriette, thank you. Erica and Sarah, do either of you have anything to chime in here about advocacy and personal advocates in your journeys?

Erica: Well, throughout my life, but at the beginning, my parents were very involved in my health journey. And I was very fortunate to have their support and have them always advocating for me and pushing me to see the next doctor and helping to explain my history, and all of that. My mom is a nurse; she’s a psych nurse, but she obviously went through general nursing school, and having her has been invaluable. She's basically my triage nurse. I feel bad, because anytime anything is wrong … the poor woman in the past few weeks with COVID has had me text her every day because I'm terrified.

Lauren: Well, I think that feeling of terror right now is something that a lot of people across the board are feeling in the Spoonie community, and I think it's important that you bring that up, too.

Erica: Yeah. And trying to distinguish what is your normal chronic illness symptom and what could be a symptom of the virus is very confusing.

Lauren: Especially for something like lupus, which can really manifest in numerous ways and affect various systems.

Erica: And I have chronic chest pain and shortness of breath.

Lauren: Sounds like COVID, yeah.

Erica: So that has been really fun.

But having my mom there to discuss medical things and having her expertise has been just so helpful.

Especially just because it can be hard to get in touch with a doctor and you don't always want to call your doctor any time anything is wrong.

Lauren: Although tele-health exists for just that reason.

Erica: Yes, which is very nice.

Lauren: There’s something to that!

Erica:  But having her has been so helpful, and my dad has been incredibly supportive, too. Doing the work with Suffering The Silence has changed me 100% as a person in so many ways. Because I think at the beginning, because I was so happy to have a diagnosis, I was just, like, oh, it's fine, it's gonna be fine; it’s fine, everything’s fine. And when I graduated and I started working and seeing what real life was like, I realized how much lupus affects everything about my life and everything that I do. Starting Suffering The Silence and talking to other people in the community, and becoming an advocate has encouraged me to speak more openly about it with other people in my life — which helps them to better support me and understand my experience. 

Lauren: And what a concept that as soon as we open up to others, our relationships are strengthened … when we tell people what we need and what we want, it reinforces our relationships.

Erica: Yes. And it’s hard. I mean, every day it's hard, and talking about it is difficult. And sometimes you feel like people still don't get it and you're like, why don't you get it? I'm trying to tell you about this. And I mean, honestly, in this pandemic, it's been really frustrating. I was really frustrated at the beginning when people weren't taking it seriously.

Lauren: Oh, at the beginning … you mean that's not still happening right now!

Erica: Well, we know that people are still hanging out with friends, going out. But especially at the beginning, when people three days in were complaining about being bored, I wanted to scream. I was, like, this is my life; this is so many people's lives. I stay at home all the time and do nothing, and you're gonna be fine. If you are at home and you're bored, you are the most privileged right now. If you are not in the hospital, and you are not sick and you are not out of work or out of a home, you are so lucky. So yeah, that has been really frustrating. I mean, there's so many things about this that are heartbreaking and so frustrating and crazy.

Lauren: Particularly for the Spoonie community watching from the sidelines, as a high-risk community which is so often brushed aside socially and has all these stigmas attached to our conversation around our illness, right. The minute we start saying, “And now we have to be very strict about protecting ourselves” … people judge us once again, and it's this constant repeated cycle, isn't it. 

Erica: Yes, absolutely. 

Lauren: But it sounds like you've really made the transition from having parents as advocates to becoming your own advocate, too.

Erica: Yeah, I think so. And I'm working on it. 

Lauren: Yep, constant work.

Erica: It’s a daily thing.

But yeah, the community has just really inspired me in a lot of different ways to try to be better. And I'm very grateful for that.

Lauren: That’s wonderful. Sarah, do you have anything to chime in here about the advocacy question? Have you had personal advocates in your journey at all? Or has it been you stepping up as your own advocate?

Sarah: I think it's been a combination of both. I mean, I'll keep saying this throughout, and as Erica said … I'm more so now than ever so aware of how lucky I am in many different aspects of my life. And I guess it kind of also works in with what Henrietta was saying before about the makeup thing … that I'm lucky in that from the get-go, my parents believed me. They saw this, they got me to the right doctors. And even though I could see in the doctor's eyes that they kind of knew they had no idea what was going on, I still had the faith that they would try their best and that they saw what I was going through. Obviously, still I've had some ups and some downs with being believed by medical professionals. I've had people tell me, “Have you heard about something called IBS?” Yes, I have. But I think one thing that especially our series brought out for me, and one of the many, many things that, like Erica, I feel like I've learned so much … I've only been doing advocacy work for I guess a couple of years and Erica has been doing it much longer … but my God, did I not know things then, and I still don’t know now … but I feel like during that process … because we spoke to, I think I interviewed upwards of 50 people or something for the series … we only filmed with five. But you have a ton of just unbelievable conversations, many of which were with Henriette. But I think a lot that came up with me is a huge amount of guilt that I still carry around from the idea of not looking sick enough. Which I'm sure comes a lot.

Lauren: Oh yeah, that’s big. And do you think especially as a female?

Sarah: I do. And I think that for me personally … it immediately brings to mind certain moments … like, I remember when I was really sick and I was on the subway in London. I happened to look 12 months bloated, but I was in so much pain I genuinely felt I was gonna pass out.  And in London … typically, it does not always happen but you’re supposed to stand up when someone is pregnant. And I remember having this horrible moment I immediately felt guilty for … I wish I looked really sick. I wish I had looked very obviously pregnant, or like something was horrifically wrong, because I'm gonna pass out and no one can help me.

But then I also immediately felt this smack of … how dare you want to look more sick than you are, or claim that space for someone else?

And it's been something I've been kind of going back and forth with, because it is one of the core things I've learned from this series — that there is huge privilege. I'm essentially well-passing — in the sense that you can look at me and not think anything's wrong. So there's not that my sensation of other people judging me immediately before I even open my mouth. I'm really aware of that and I'm more aware of the weight of that privilege than I ever have been — thanks to Trust Me, I'm Sick and thanks to Erica and Henriette and everyone else involved. But I also still carry some guilt because there have been moments — thankfully, less so now — where I have genuinely wanted to look more sick than I am. I guess having thought this through a lot, I think it's essentially that to me, the world does a really reductive view of illness … if you don't present as sick, you're not sick. So by understanding that, that kind of allowed me to feel a bit less guilty about that kind of feeling.

Lauren: Do you think that’s related to the fact that the healthcare systems that we're talking about today — the NHS in the UK, and the US healthcare system — do you think it's because they're really better designed for acute care than preventive care? And that's why there's so much of this reductive behavior?

Sarah: For sure. I also think it’s linked to a lot of different things. Because if you look at the history of medicine, we've leant on this kind of model … at least the 20th century diagnostic model, the idea almost that the body is a machine kind of model … that is, we’re like an engine and the patient and the doctor are taught to refer to us in parts… this thing is not working, this part is not working. I think it creates a really, really unhealthy paradigm of what our bodies are. It’s like a predestined thing that we're supposed to automatically work. And therefore you only deal with it when that part is broken. I could talk for hours on this. 

Lauren: But that's exactly why people with chronic illness struggle to get appropriate levels of care.

Sarah: Yeah. And for anyone listening who hasn't read about it, I found it fascinating when I first read about the ideas of where that came from … it came up basically in the 20th century with the rise of machines and factories, and that kind of bled into how doctors referred to patients, and vice versa.

Lauren: That industrialization of healthcare, the commoditization and industrialization of the human body.

Sarah: Which, spoiler, hasn't gone well. So, yeah, but as a final kind of shout out … obviously, especially now during COVID … I also had tons of advocates … as well as family members, we count the NHS as one because where I come from in England, we have the National Health Service, and it's not perfect. And it's really, really under a lot of stress now. But having spent extensive time here in the US … I'm also half-American, despite the accent! … I'm kind of seeing experiences of people on both sides especially, through Trust Me, I’m Sick. I’m so grateful to have that kind of safety net there. So hopefully things get better here, too.

Lauren: Yeah, absolutely. So what does a typical day look like when you're living with chronic illness? Who wants to jump in on this one? I'm wondering how you balance the demands of work and life? I know that Erica has got something to say about this. So Erica, go for it.

Erica: I do. I think I'm incredibly lucky to have kind of figured out a way to primarily work from home. And I think, thankfully, a lot more remote work opportunities are being created now. But I just kind of fell into doing social media for a variety of companies. That's primarily what I do for work, and I can do that all from home.

And it's a way to be able to take care of my body and make sure that if I need to work from my bed, I can work from my bed.

That's amazing. But also for my larger career goals … I'm an actor and now producer and want to do a million things, but those things and the entertainment industry require a lot of energy and physical ability. So being able to work from home to save my energy for when I do book a shoot, or I am shooting a docu-series for two years, is a privilege. But that's just how so many people living with chronic illness have to live their life and make their decisions, by saying ‘no’ to things that, I guess, are lower on the priority list … to save yourself for things that really matter to you. Sometimes you save yourself for a day that your body still doesn't feel energized or feel like it can be at its best, but you try. I've been really lucky to be able to do that. Even when I'm so sick, I can't fall asleep early, so I usually go to bed kind of late. I wake up around 9, and then usually assess: Am I feeling like I'm dying today?

Lauren: I mean, I want people who don't have chronic illness to understand that question that so many of us wake up in the morning and have to say: Do I feel like death today or not? And that will determine whether or not we're functional. I mean, this is the kind of situation that people living with chronic illness go through day by day.

Erica: 100%. And also, you can wake up feeling fine, and then two minutes later you feel awful. So it's that constant checking in with yourself throughout the whole day about what you can do.

Lauren: So hyper-vigilance, which is, in and of itself, a full-time job. 

Erica: Yeah, absolutely. And again, I feel so privileged that I mostly work from home so I'm able to work from bed and work from the couch and take a break and pretend to nap; I just can't nap. So I lay in my bed, pray I'm gonna fall asleep, and I don't usually. But having the ability to have my home be my office, and work from places that can help me, or have an ice pack on or a heating pad on while I'm working, is a huge privilege — and I'm aware of that. But really just checking in with myself all day about what I can do as the day goes on.

Sarah: Having spent two years watching Erica work from home … and by the way, I have this big apology in my head because I famously emailed Erica two-and-a-half years ago, whatever it is now, saying, “Can we have a quick chat about chronic illness?” And it escalated wildly!

Lauren: Two-and-a-half years later, you're still having the conversation. Quick chat indeed! 

Sarah: As Erica was just talking, I was visualizing the things I've seen us do. Like, Erica and I have worked from hospitals … we were in the middle of a meeting, and Erica needed to go get her infusion for lupus. So she literally had her laptop on her lap. She refused to stop the meeting.

We drove to the hospital, we edited from the suite where she was having her infusion.

But we've also been having really intense conversations about production while Erica is holding heating pads, massage … what’s the thing you put on your back?

Erica: Oh, I have a really weird massage hook.

Sarah: There you go. She’s just produced it!

Lauren: It's one of those acupuncture pressure point massage things. 

Erica: Yeah, S-shaped things. 

Sarah: But the reason I say that is just … Erica’s work ethic. I know that she kind of tampers this down by saying that she does what she can. But it’s unreal, her ability to work during pain — in the cause of pain — is incredible. And she's also very good at listening to her body. So well done!

Lauren: That’s really sweet. This is the other wonderful thing, that here I am with a group of three other women and you're all so supportive of each other, and of each other's health and of each other's work. And yeah, big group hugs. It's really wonderful to see women come together to create something like this — that will help other people, too. I know, Erica, you talked about the fact that you've been able to find work that's adaptive. But what about people who have that 9-to-5? I know that there are people who are in the documentary who talk about the fact that they have to stay employed to get health insurance, to get insulin and things like that. What’s our take on this 9-to-5 grind?

Sarah: So one thing that's important to explain, I guess, is that we consciously made our series thematic. Because we wanted to provide  … you know this because you produce an incredible podcast series about it … but there's so much to talk about when it comes to illness. And so one of the many, many solutions that we came up with was to make sure that even if we couldn't discuss it all, we would try in these short films — the series is made up of five 5-minute films — to look at different elements of everyday life and how that works with illness. So one of the things we talked about was work and illness. And for that, as with all the other episodes, we wanted to make sure to represent as broad a spectrum of experiences as possible. We had people in that film who had very, very different experiences when it came to work and school/university with their different illnesses. And again, we also have five contributors with very different life experiences, illnesses, experiences with those illnesses. The idea was to try and create — even if it was a baby one — a little tapestry of that. So the film that we made about working and illness was a really, really important one to all of us. Not least because I think it’s, for some reason, not talked about that much. I think, when we're allowed to talk about illnesses, which is not often in the scheme of things …

Lauren: Except here on the pod, we can talk about it all we want!

Sarah: But for some reason doing the research, it just felt like I hadn't heard that many people talk about it. So we have, in the film, Cassandra, who is one of our wonderful subjects. She describes really, really beautifully how challenging it's been for her, basically handling a 9-to-5 alongside her illness. There’s this really beautiful scene where she explains that essentially she wakes up and, like Erica said, she assesses: Is this going to be, I wake up and I can do my makeup before I go to work and I get ready and I go? Or is it going to be: I wake up five minutes before I need to leave the house, go deal with it, come back and I sleep the entire rest of the evening. Obviously, in a five-minute film, you can’t encompass all that there is around illness and work. But I think one thing that felt really important was to consider how supportive … because you know, you could work in two very similar organizations … but it's also so important how your boss and your colleagues view you and your illness, and how seriously they take it. Cassandra, I'm sure, would say that she's definitely had a range of experiences in that department. So I think it was important to us to really shed light on that, and the fact that, like Erica said, in a lot of ways if you were able to adapt — that is a privilege in itself. And I think especially when you have a really long day and you know that you do not have a friendly work environment to be walking into, the additional … not even just the pain of your illness and whatever else is going on with your health … but the psychological stress of … if I don't go to work, what will that say? What are the repercussions if I do, but I don't do a good job? I think that psychological element … even if no one actually says anything … is still a huge component of your day in a way that someone else in the exact same role as you wouldn't have; it’s enormous. That's one thing that I really wish people understood, that illness and work is the same work experience; you’ve got to deal with your 9-to-5, but you’ve also got so much more to bring to the table with it. So all the more reason to have supportive workplaces.

Lauren: Absolutely. And adaptive ones, as we're seeing during this COVID epidemic again. So, Henriette, I know earlier you mentioned the story about the makeup and the shoulder pads! I'm wondering about situations that you guys have been in perhaps, where you've been in that situation where you've had to justify or validate to someone else that you had a chronic illness that they couldn't see. And what those situations have looked like, how they've played out?

Henriette: Oh, my gosh, that's a great question. I don't know that I can think of anything right now. Because I've never worked in a traditional environment. I'm an artist; I acted for long periods of time. And after my first kidney transplant, I had many, many years of very good health. In fact, I would say, ignorance was bliss. I was young. We didn't have the Internet. We didn't have this kind of accessibility to information, and even the way that we talk on social media. I have hashtags with all kinds of young kids who've had kidney transplants. it's a really interesting creative time for me to look back on, because I really just kind of ran with the gift horse that was my health, and didn't look back. I didn't look it in the mouth, so to speak. So, honestly … I don't want to drag this out … I think I do run into stigmas with alcoholism. Really what I refer to … I’m more of a drug addict; it’s an addiction. And what I think I've learned is that I can't really explain this to people. I can't really change people's minds. And this is not to take away from trying to do it.

But I think the thing that I would ask people to do is just listen — just listen to people that have chronic illness and invisible illness.

I don't want this to sound cynical or disheartening or anything, but I'm never really going to understand what it's like to not have water. I can take something like that for granted. I can't imagine what it's like when I hear that people walk for miles in Africa to get a bucket of water. I can't imagine. It’s so annoying when the city turns your water off for an hour a day, right? So, this is not to sound cynical, but I've been around the block now with my health for a long, long time. And I've had to kind of find a place of acceptance, that unless somebody goes through it themselves … and this kind of ties into what Erica was saying … it is really frustrating to hear how bored people are because they're stuck at home. I think people with chronic illness and invisible illness, just over time, develop an appreciation for the little things that "The Healthy” will just simply never understand. I'm just looking in awe and wonder at social media and just wondering … do people not know? Like, just read a book. I don't understand. I am literally flabbergasted. 

Lauren: You’re talking about empathy and compassion, which I think we're seeing every day more and more. That it's a struggle to get some people on that bus, right? There are helpers. But then we're seeing this rise of really mad idealism that's paired with individualism and really rampant selfishness. It's these two sides of a very strange coin, and we're trying to find something in the middle, aren’t we.

Henriette: Yeah. I spoke about this in the documentary. My experience now … I’d get so incredibly frustrated when people would just say, “Well, you look great!” Because when I'd try to have conversations with people about how I was feeling physically and emotionally and the toll that it takes, I'd either be shut down with the “Well, you look great,” or something similar to that. Or, “Well, you know, what can I do??” That I found equally abrasive, too, because it felt like a kind of dismissive thing. What I try to focus on more than anything is building the community of people that are going through the same thing that I'm going through. And that's where I found a lot of healing through, which is essentially the main spiritual principle of a place like Alcoholics Anonymous — one alcoholic talking to another. And, again, I know I keep talking about this, but the people that I'm finding on social media who've had kidney transplants, who live with chronic pain, who live with tinnitus, who live with the pain of migraines … I’m finding a great deal of comfort in that. And also, it's deepening my gratitude for what I have. In fact, yesterday was the nine-year anniversary of my kidney transplant with my husband.

Lauren: Oh, congratulations. That's huge!

Henriette: It’s phenomenal. And that has really been relatively uncomplicated. All the other stuff — getting sober and the chronic pain —  has been happening at the same time. But there's a young girl who I'm following, who’s in her late 20s and she's on her second kidney transplant. They're trying to not keep her at Cedars because of COVID-19. She went into acute rejection, she's at home, she got a kidney from a man who overdosed in jail. She has to take it, because she's been on dialysis for years. Anyway, I’m probably rambling off course! 

Lauren: No, not at all. I think what you're talking about is the fact that sometimes we're forced to make these very difficult decisions. And sometimes we have no choice. But the other part of that is, I wonder … if it's not helpful for someone to say, “But you look fine.” And if it's not helpful for someone on the outside of chronic illness to say, “What can I do?” … How can they help? Is it that those of us in this community can only commune with others in the community? Or is it that we actually just need you to sit with us and be, like, "Yeah, that sucks.”

Henriette: The ladies can probably speak to this better than me. Again, I don't want it to sound cynical at all. But for me, that's where the majority of my healing is coming from it.

I wrote a whole book about getting sober.

Lauren: We're going to link to it on the website page for the episode.

Henriette: I completely believe, 100%, in the power of telling our stories. It can educate, and it can enlighten, and it can empower people with this information. But I also understand and accept that not everybody is in a place where they're going to be able to hear our stories, and be able to know what to do with that information. There will be people that we can reach. I am finding in the writing of my book, that there are an extraordinary number of people now writing to me saying, “I never understood addiction that way. I never understood that you really do lose the power of choice.” And it is very much a medical memoir, too. It details a lot about kidney transplantation and the medications that we have to take, and how the side-effects are so painful. I try not to generalize about humanity; I try to take humanity on a case-by-case basis.

Lauren: I think you’re allowed to be cynical then. Look, I’m with you a little bit on that one, too. I'm going to throw it to Erica and Sarah … any instances where you've been confronted and forced to validate the existence of your illness for those who couldn't understand?

Erica: I think I have a lot of experiences where I feel like people didn't understand. And I think the hardest times, and the times that come to mind immediately, are situations where I feel like I was almost forced to be super vulnerable and disclose — because someone really wasn't listening to me, and then I was shut down. And those are the experiences that feel the most painful. I have this situation where I was home a few years ago over the holidays, and it was a little reunion holiday party with my old dance school. I was a competitive Irish dancer for 10 years.

Lauren: Thank you for admitting that!

Henriette: I can’t tell you how much joy it gives me to remember that, Erica.

Lauren: I’m wishing now that we could have a demonstration! That’s your next film, Sarah!

Sarah: Don’t think I haven’t proposed it.

Erica:  I do have to say there's a great documentary about Irish dancing called Jig, and I think it deserves a cheer.

Lauren: Oh my God, this is what I'm gonna watch tonight. Fantastic.

Sarah: I thought you were going to say there is footage of you out there, doing it. And my brain blew!

Erica: No, I quit too young. And I wasn't good enough. But I was at this reunion with my dance school, and I was in the midst of a flare, and I deeply missed dancing and performing, being in more physical situations — very much. I was able to dance a little bit. And then I had to sit down. Some of my best friends in the world are from Irish dancing, and they were there and backing me up.

But I sat down and I remember my teacher was, like, “Erica, get up and do a step.”

Lauren: This is a form of dance that's very tough on the joints.  And it’s very high cardio!

Erica: Oh, I was in the best shape of my life when I was 12 — like, six-pack amazing, great. We'll never be there again. It's amazing exercise, but it's very difficult. So my teacher was, like, “Erica, get up.” And I said, “I can’t." And she rolled her eyes and was, like, “Come on, everyone is doing it.” And I was like, “I have lung issues right now. I can’t.” I was on the verge of tears, and she just kind of dismissed me, and whatever, But just the rolling of the eyes. They know I'm sick.

Lauren: Also being met with dismissal every time. This is what happened to you, it happened to Henriette. It's that being met with someone who’s tough enough, everyone else is doing it, but not acknowledging the fact that we're different from everyone else.

Erica: Right. And it's embarrassing. All the times that I can think of are these times where you're forced to say, “I can't do this." Which is often just so painful, because you probably really want to do the thing. And then being met with that dismissal is so heartbreaking. I don't know how to fix that. I agree with Henriette on a lot of the points that a lot of people are not going to understand it if they haven't experienced it. I think that's true for the most part, and it's really heartbreaking. But I do think our storytelling and being honest does help. I can say that I haven't really experienced addiction in my life with a family member or friend or myself. Reading Henriette's book, I was really able to understand it in a way that I hadn't before. I think that is so beautiful, and I think it does show that if you want to, you can be empathetic.

Lauren: Henriette’s doing lots of thumbs-up over this one. Because that's actually true. There are so many stories out there, that it's on you to actually do the work and make the documentaries.

Erica: Yeah. And though I'm not going to know what it feels like to be an addict, I can empathize with that. And I can listen to people like Henriette speak about her experience, and want to be a support and want to listen. I think the listening aspect, like Henriette said, is huge.

And I think the people in my life that I feel have been the most supportive are just there to listen.

And for me personally, as someone who is open to talking about my experience, to have someone ask follow-up questions or ask more specific questions … like, “Oh, what does it feel like when you have chest pain? Do you get scared? What are you most worried about?” Things like that, that show that someone is actually genuinely interested in your experience, can mean so much. And someone just saying, “Oh my God, that must suck.” Friends that are texting me now, “Oh, this must be really extra scary for you with COVID.” Yes. And that makes me feel seen.

Lauren: Yeah, absolutely. I think that's beautifully said. All three of you have mentioned privilege throughout this conversation, and acknowledging the privilege from which you speak. I'm wondering, if you'd all presented differently … if you'd all been women of color … if you'd all been men, maybe … do you think that your experiences would have been different in the medical system?

Sarah: I think from everything … I mean, I have eyeballs so I can read and I have done a pretty big effort in the last couple of years, listening as much as I can. Firstly, I think in terms of … it’s almost like these guys have been saying in terms of illness … I'm never going to resolute, apart from me, what I've come from, and what I've gone through. I think if you look at the numbers and the statistics of how, especially women of color, are treated in the medical system, it is abhorrent. So I think from a statistical point of view, there's pretty solid backing that you can say yes, it would be very, very different.

Lauren: On the flip side, do we think if we were white men with these illnesses, we would have gotten the diagnosis four years sooner?

Sarah: Arguably, I don't know if it would have been four years earlier, but I do know that if you could have removed the inherent “Oh, they're being hysterical" element from the room, I'm sure all of us could have had experiences where maybe the intend of the conversation might have been slightly different. I can't speak for everyone else. I think it links me back to what these guys were saying about … can you ever truly expect a doctor, regardless of how you present, what your illnesses are, how hysterical you are, to really understand what you're going through. To me, it’s really important to point out that I don't see it as a red light/green light/ding/they understand. I think that's a false paradigm. I totally understand where Henriette is coming from. One of the major things I learned from Henriette, who has gone through this way longer than the rest of us have … she's absolutely correct that the majority of people will never understand, even with a similar condition, what you’re going through.

But I think that doesn't mean that it's not worth trying to educate and encourage more empathy from other people.

Even if you get 20% greater education from what was known before, that's probably going to help people say less stupid stuff to you. 

Lauren: That moves the needle quite significantly. 

Sarah: Yeah. And again, going back to your question about if you presented differently, throughout society itself — it's not exclusive to illness — we know again, statistically, that people, especially people of color, are treated differently. I think it's up to us to uphold their stories, to share their experiences. That was something that we spoke about really, really candidly — especially with Cassandra in our series — and that was something that was important for her to raise with us as well. Because she pointed out that we are two white women who have declared ourselves advocates. I think she was such an important force in our documentary, constantly reminding us to check ourselves and to check … are we just pushing a narrative that works for us. I'm really, really grateful for her contributions and everyone's contributions, in showing us different perspectives. The same with Giuliani, the same with Henriette … they all gave us different experiences. I think we need to make extra space for people whose stories are really, really not heard and those are often people of color.

Lauren: I don't think you could have said it any better. And I can see Erica snappin’ her fingers back there, so we know we're on the right track there. We've talked about a few different health care systems as well today. We’ve talked about the health care system in Canada, the healthcare system here in the US, the healthcare system in the UK. Given the experiences that all three of you have had, in what ways are you seeing those systems that you've experienced work for patients? And in what ways are you seeing them needing to change immediately? I know we've talked about the acute versus preventive care models. But what else can you point out for us specifically?

Sarah: I’ll start with the UK. Parentheses … I have not lived in the UK for three, four years now. I think, like I said earlier, ultimately, to me, the benefit is that just some form of safety net exists there. I definitely think there's a lot of conversation in the UK right now about needing more preventive care and assigning economic value to providing preventive care. I think obviously relative to large parts of the US, there is more support there. That said, the NHS is hugely underfunded — which is a massive issue for its staff, for people who desperately need the care that those staff provide. So I don't think by any means it's leaps and bounds perfect. But from my experience and my personal experiences there, the very presence of an entity like that is, I think, a really important one for society to have. It's the idea that we care about people enough to have a place for them.

Lauren: To make health care a human right. You care enough about them to give them health care guaranteed.

Sarah: And also, I think it's a huge … again, I'm not going to paraphrase every person's perspective on the NHS … but I think there's huge sense of pride in it as well. This is something we've had for a very long time. And there's extra focus on it now as there is everywhere, for the amazing work that people within the NHS do. I'm hoping that coming out of this COVID situation, maybe more funding is put into it.

But I think across the board that there needs to be more focus on preventative and on psychological support for people with chronic illnesses.

Lauren: Absolutely. I think that's really well said. Henriette, have you got something to add here?

Henriette: Yeah, I do! (laughs) Look, I’ve got to preface this by saying I'm a Canadian and an American citizen, and I absolutely loved the 22 years that I lived in California. I had my first transplant in the Canadian system, and then I had my second transplant in the American healthcare system. During that period of time, when I was diagnosed with chronic kidney transplant rejection, I was unable to work. At the time, I was acting; I lost my insurance through Screen Actors Guild. I was thrown on disability for one year and then Cobra. And then I had to find my own group health care plan. And my premiums, they just completely skyrocketed. It's such an ass-backwards system, because you're sick and you need help and you need support — and then you find yourself in the situation where your premiums have gone up and you have to pay … they went up like 800% or something like that. It was absolutely insane. So this financial component to it … and it was years … I’m not even talking about the one year of the transplant. It was years and years and years of every single dime that Kevin and I were making was out the window before it even got into our hands. He was a very successful headshot photographer in Los Angeles. I had some disability for, I think, it was seven years, and all they would do is cover my monthly premiums. Nothing else was covered — co-pays, medications, special diagnostic tests; nothing was covered. We were spending on average, I think it was between $18,000 and $26,000 a year just on health costs. And like I said, if that had been removed, we would have had a very nice life, a comfortable existence. So in addition to that, just the spiritual draining of being in a situation where you're sick, and all of a sudden every aspect of your life is being taken away from you. When I got increasingly sicker, I wasn't able to go to the gym; I had to stop acting, I had to stop … even just going for a walk with my dog was incredibly draining and stressful and exhausting. And then you add that financial stranglehold, it's just like an albatross. Not only around my neck, but around my husband's neck — who was essentially my caregiver at that time. And it broke us, it completely broke us. There was no reprieve. Every single day you are physically broken, and you're financially broken. And as a result, you become emotionally and spiritually broken. I can safely say … and absolutely, addiction was mixed into all of this … but I can safely say that we didn't laugh for years. This is a system, as Sarah has so beautifully articulated … it's not a preventive system. It's so overburdened and broken. It's just not set up in a way that actually helps a sick person. And so we ended up making the decision last year to move back to Canada, pretty much for that reason. It was a frustrating decision on some level, because in a way we felt like we were being pushed out of America — and nobody wants to feel that way. But again, to tie in to this entitled theme, or this privileged theme rather, not entitled … I feel incredibly grateful, so profoundly grateful, that we had the option to do this, to move back to Canada. In fact, we're now in a city called Winnipeg, which is my husband's hometown. And the cost of living is very low here. We have a wonderful quality of life. Quality of life is not just about your physical health; it’s also about your emotional and spiritual health. And when you're dealing with a financial strain like that … and we're not the only people … I mean, there's thousands, if not maybe millions of people … 

Lauren: Definitely millions. 

Henriette: …going through the same thing. Where it's just a constant trudge that increases your physical burden. I'm incredibly grateful to be in this position today. And the system here, as soon as I got back into the system here, they're sending me … do this poop test. I mean, it's like a colonoscopy thing. They're sending me all of these things. Come have a free breast exam. Come have this, come have that.

Lauren: They’re offering you preventive care.

Henriette: They’re offering preventive care.

Because they want you to stay healthy so that you don't become a burden on the system when all of a sudden everything collapses. 

Lauren: So that to me sounds like the first version of socialized healthcare that's working in this discussion so far! So that's great news.

Henriette: It’s certainly not perfect, as Sarah was saying. But honestly, I happened to land in a city that has the best transplant center in Canada, and for that I'm infinitely grateful. We've only been here for 10 months, and I've already been there three or four times now, and they send me monthly requisitions for blood work. Kevin was in a subway around the time we were leaving Los Angeles, and some young man had hit his head and it was visible — you could see he was badly bruised and bloodied. And he said out loud to his friend that he wasn't going to go to the hospital because he didn’t want to pay the money — because he simply didn't have the money to pay for it. That’s reprehensible, and I don't have the solution for it. I'm not gonna say that I have the solution for it. But our solution was to leave a system that didn't work for us anymore. It was killing us.

Lauren: I think that's perfectly said.

Sarah: So, to follow on from that … What Henriette says, I think is shocking to all of us. And obviously familiar to a lot of us. But I think it's important to point out that it's not just this Utopian idea that in the future that won't be a thing. Right now, in countries like Canada and the UK, it is insane to conceive of the fact that if you get into an ambulance, you're going to be potentially ruined financially. I remember when I first moved here, and I found that you’ve got to pay to give birth, and you’ve got to pay to have an ambulance … Obviously to all of your listeners, I will sound incredibly privileged and like … how does she not know that's a thing; in England, it's not the case. If you get cancer, you're dealing with the idea of having cancer. The financial strains of maybe losing our work. For the majority of people in the UK, it’s not a thing that you've also got to even begin to think about this — the cost of this, let alone, they’re going to ruin me. And I think it's important just to remember that. I'm so thrilled for Henriette, because obviously we've been with you before and since your move  — that you had the option. And it's just it makes me so angry, especially in a country with this amount of wealth, it should not be a thing that everyone’s, like, “Yeah, well, that's the reality.” Right now in real time and in other also successful industrial countries in the world, that isn't the situation. So I think it’s just extra challenging to hear that when you know it's not a given … “Oh, it's a big country.” 

When people are going through illness, they should be just focusing on getting themselves through the illness. They do not need that additional crazy cloud of finances. 

Lauren: Yeah, beautifully said, all of you. So, let's talk about your advocacy work. You're all advocates now. And I'm wondering about the ongoing work of Suffering the Silence; the ongoing work with documentaries that perhaps you guys will be doing; ongoing writing, Henriette, that you might be doing. What's next for all of you, and how do you think, as chronic illness patients, you were called to advocacy yourselves?

Erica: Again, I fell into it, just in my conversations and experience with Allie and talking about what we had gone through. I've always been involved and interested in social issues and politics, and those kind of things. And for a while, thought I wanted to be a nurse; I’ve always been interested in health care, and all of that. But I never imagined myself being an advocate for this, and I didn't really think there was an opportunity or know that this community existed. Finding it has been incredibly empowering, and something that I also found myself feeling empowered by was finding these words of ‘chronic illness’. Like Sarah was talking about, not even understanding what that means, but realizing this is a thing, and this is something I identify with … the Spoon Theory. Or even realizing that I could identify as disabled. That is something that a lot of people don't want to be identified with, or don't like that word. When I got involved with this organization called Diverse Ability, which is a disability …

Lauren: A wonderful organization, yeah. 

Erica: They’re great. I realized that I could identify as disabled. Again, I realized my privilege and in not presenting as such, so that in certain job situations, or auditions or just social situations, that it is not perceived right off the bat is a privilege. But finding that word made me feel really empowered, because so much of our experience is dismissed and is looked down upon. So acknowledging that, yes, I am disabled, there are things that I cannot do, and that is the reality of my experience, felt … again, I keep saying empowering, but felt really empowering for me. Making art and obviously working with Suffering the Silence and what I've talked about before has been an incredible experience for me. Some of the work that we've been doing in the past few years is hosting retreats, specifically designed for people with chronic illness. We have had, for the past four years, a retreat at this wonderful place called Zeno Mountain Farm. Basically if you've watched the new Netflix documentary, Crip Camp, it's like real life Crip Camp. They host a variety of retreats and camps for a bunch of different communities, but mostly for people living with disability. We host a yearly retreat there, which is four to five days of about 30 people living with chronic illness. The whole program is designed for people with chronic illness, and it's like the most beautiful, amazing thing in the world. We are starting to create more in different cities because there's a really high demand for it. We had to put 70 people on the waitlist this year for the Vermont one. We were supposed to be hosting a new one in June in upstate New York. We are not going to be doing that, but hopefully when we are able to, we will be hosting more. But this opportunity for people to connect with people that have gone through similar things in person is so, so beautiful. And is an opportunity that I think a lot of people deserve. So that's something that we're focusing on for Suffering The Silence. For me personally, Trust Me, I'm Sick was a life-changing experience in a lot of different ways. It was really hard working on something that's so close to home. Poor Sarah had to deal with my anxiety of properly representing the community; I was so, so nervous.

Lauren: I think we all go through that kind of guilt/shame spiral because that's so naturally connected to being chronically ill. But then representing others, as you say … absolutely, it’s an additional burden.

Erica: There’s so little media that has to do with our communities. So putting something out there, especially something that is made by people with chronic illness … which I'm so proud of, and more things need to be done that way. But I was so nervous about people being offended, or feeling like we didn't represent them properly, or making these broad generalized statements, or anything like that. Thankfully, for the most part, that was not the case. But I do want to do more with the community art-wise, as an actor; I would like to do something like a narrative piece that has to do with chronic illness. Because I think, again, nothing like that really exists. So that's something I really want to do, whether it's someone else's or I figure out how to write something. That's a dream of mine. I think just seeing where life takes me and where these projects go to next, and all that. Sorry I talked for so long.

Lauren: Not at all. Don't you dare apologize!  It’s wonderful what you're saying. Henriette, what about you? You've written your book. Are you continuing to write about your experiences?

Henriette: I do have another book that I've started to work on. But truthfully, this whole experience of writing about getting sober and addiction and kidney transplantation … I self-published this book … and what I have done is work really, really hard at promoting it, primarily on social media to be truthful.

And I'm finding it's beyond my wildest dreams, truthfully.

It’s selling very well. But what's happening is that people are writing to me through Facebook, they're writing to me through Instagram … essentially, kind of what Erica was saying, too … saying that they understand addiction now in a different way. And I can't even tell you how empowering that is, and how exciting that is, because my own father died of alcoholism at 38. I was 10 and I never understood how could that be possible. Why? You had a beautiful wife and two young healthy kids at the time, and you were a doctor — and how is that even possible? So to be creating relationships with people and fostering discussion about what addiction is … I also have an author page on Facebook, and I post these pieces about addiction, about illness, about coronavirus — all of these things and my musings and reflections on it. I've been having a lot of discussions with people. Some people are more abrasive than others. But what I'm trying to do is just from a very, very honest and open and tolerant place … There’s a lot of people that come to me and they’re, like, “Well, it’s not a disease.” It's not this. It's not that. And instead of simply dismissing them, or deleting them or banning the user, trying to have a discussion with them about it. So my point is, slowly but surely I'm building somewhat of a decent author platform. And my dream, really, is to get into medical schools — somewhat to honor the death of my father, but to speak at that level, to medical students, about what addiction is, and that it really is a tri-fold illness. It's like a physical allergy, that once you've crossed that line, that power of choice line, you really just lose the power of choice; your body can no longer … I simply could not take one pill or one sip anymore. And then it's coupled with this kind of mental obsession that we have to keep trying to keep justifying and rationalizing, finding a way to justify taking the pill or the drink. And we really believe that it's somewhat of a spiritual deficiency. Sarah was speaking about this earlier … how Western medicine tends to compartmentalize. It’s very diagnostic by nature. This is just what you are. You're just your physical condition. The spiritual malady is very much how I treat my addiction, my alcoholism, whatever you want to call it. But it's also how I treat my skin pain. It's also how I treat my nerve pain. It's also how I treat migraines. I do a lot of things that have been around for centuries, man — like prayer, meditation. Your listeners can’t see, but I have a sauna behind me. It's how you eat. All of these spiritual things really do contribute to our overall emotional, spiritual and physical health. And I do not think the medical establishment, in my experience, understands that, that we are mind/body/spirit and that's what has to be treated. So if I can get to a place with my platform, and go in and speak to medical students about that … about really what addiction is, and chronic illness and living with chronic illness as someone in recovery, that's really what my dream is. And my next book, and Sarah will be happy to know that her boyfriend is sitting next to me … that happens to be Walter White, my basset hound … is about the healing power of dogs, essentially.

Lauren: Sarah’s like, hands up so excited right now! I'm quite excited, too. I love anything about pets and chronic illness — because so many people come on the show and say, “Get yourself a pet!”

Henriette: 100%! I can't tell you how I have been on my knees … I pray … I don't know what it is that I pray to, but Walter’s there with me. I'm crying. I've a migraine. He's curled up with me. When I would have really brutal skin pain, he's sniffin’ my pain.

There’s just something otherworldly about them. And it just sort of transcends when they're around.

Lauren: I think if you have trouble connecting to spirituality, pets can help you channel into that, too, because they exist on an additional plane. 

Henriette: 100%.

Lauren: Sarah, what about you? What's next for this documentary filmmaker? Are you continuing to partner with Suffering the Silence? Do you have more chronic illness projects coming up?

Sarah: Before we even launched the project online, we had a lot of questions from people saying they wanted to see it. And I remember Erica and I in the depths of the edit process, responding, “But we also want to see it.” Basically, I think for us, going into this, we knew that making a documentary would be challenging. And I can say, hand on heart, that I'm so proud of everything that we did. Both the final product, but also just everything that got us there. And so when other people would ask us, “When's the next one coming out?”, I think it’s still only about two months or three months since we launched it, so I think we're taking a little bit of a breather. At the same time, we're working behind the scenes to get it seen in more places. I've been really lucky that a couple of different universities have reached out and want us to speak, so we're going to be hopefully speaking at Oxford in the fall. Which will be good, if that still happens.

Lauren: That’s very exciting! I hope you'll be able to get over there. 

Sarah: Yeah. Thank you. So I'm a filmmaker. It's my day job. I'm very lucky to be able to do that, especially right now. So since completing Trust Me, I'm Sick, I produced a series for The New York Times, short documentaries, I'm on another season for them. I, for sure, want coming back to stories around illness to be a permanent in my career. Obviously, not every project I do, I think, will be specifically a link to that. But even in a meeting I was having last week about a completely separate subject I was doing for the Times, a story came up about someone living with HIV. And it was just such a beautiful example of the massive knowledge … there’s a lot still to be learned … but that I've gained from doing this series. I felt a lot more powerful in my ability, when we're talking about this … I made it clear that if we were to do a subject that involved that kind of angle, that we addressed it properly, and that we really made sure that we were using the correct terminology, that we weren't referring to someone with AIDS, or this kind of stuff. I think I learned volumes from Giuliani in our series who is living undetectable with HIV. And so I think that whether or not I'm doing a story that specifically focuses on illness, what we have built with Trust Me, I'm Sick on a personal level, on a professional level, on being less of an awful person level … I think I'm really going to carry that with me. I would love to keep working with Suffering The Silence; Erica and I are somehow still best friends throughout this process!

And I really, really value that, because I think anyone who's made any form of art, especially documentaries, knows that it's really, really tough.

And I'm just so grateful that moving forward, we still have great ongoing relationships with all of our subjects, Henriette included. I genuinely squealed, if my audio wasn't on, when I saw you on camera for the first time! I think in terms of me, it's just trying to get Trust Me, I’m Sick and to get the word out around that, trying to do more stories that feel important. And similar to Henriette, I don't have a personal platform. Which is probably for the best. But I think using what I happen to do as a job, which is documentary filmmaking, to make sure that not only are we telling stories, but we are listening to the people that we’re telling stories about. And approaching it from an angle of … Let me listen to what you're going to tell me — as opposed to, I have a narrative in my head, let’s go. 

Lauren: Well, reality TV has really skewed that kind of production. hasn’t it.

Sarah: Exactly. I could not be more grateful to have done this project, especially the beginning of my career. But yeah, I'm very, very thankful for everyone involved.

Lauren: It’s wonderful. And it's amazing, throughout this conversation, how many fists-up there have been, how many claps, how many little dance parties from our seats. You guys are all cheering each other on, and it's so wonderful to see, and it's so, so nourishing as a fellow female with chronic illness to see this. I really want everyone tuning into this episode to know … this is what community looks like. And it's a really beautiful thing when you find the right ones. So, I like to close out my interviews with a couple of Top Three Lists, and perhaps you each have a top tip that you can offer in these lists. First, I want to ask top three tips for someone who's living with chronic illness, be it invisible or otherwise. Maybe they are undiagnosed. Maybe they have a diagnosis. What would each of your top tips be for people who are in the Spoonie world with us?

Sarah: I guess the first one is to know … which I wish I knew at the beginning of my journey … to know that there's a community out there. Like we've said repeatedly, no one is ever going to really know what you're going through. And frankly, what you're going through is going to keep changing day by day, year by year, minute by minute. But to quote Henriette, I think a big part of that is understanding that there are other people out there, and to connect with them. I wish I knew about the Spoonie hashtag when I first got sick. And I think that's one thing that is a real positive of where we're at right now  — that if you have an illness, you are able to engage with people. Whether it's something like diabetes, which in theory is more commonly understood. It’s often not. Or something that's really, really rare, and there’s no way, statistically, that someone in your neighborhood could have it that you could meet. I think it's just … know your community and reach out to them. And also if you don't want to reach out to them. I realized through this process in making Trust Me, I'm Sick, that there's such a element of this, which is saying that you're only valid if you talk about your experiences. I think there's also room for people that want to listen and absorb, and they don't feel like they need to share it themselves. That's okay, too. And the second one, is to steal from the title of our series — to trust yourself.

I found that the more that I trust myself, in general -- not always -- the more it encourages other people around me to trust me, too.

If I do say so myself, there’s a really beautiful scene in our series where Ezra, one of our subjects who was 18 at the time when we filmed with them … the mom sat down to kind of discuss what their experiences have been like as a parent and child going through Ezra’s experiences with EDS, Ehlers-Danlos Syndrome. And their mother shared this beautiful moment where she realized that essentially … and there's a kind of a story behind it … but she could never be in Ezra’s body. So all that she could do is just trust Ezra. And trust Ezra’s experiences. So I think, just that ability to realize that you are the only one that knows your body. And the more in tune with that, and the more comfortable you are in acknowledging that, I think the more that you can help other people support you. And a third one, I'm going to directly quote and steal from Henriette, because she's here! And it's honestly my favorite quote, I think, of the entire series that made it into the films … which is right at the end of the series … if you watch them the whole way through, you'll see it …

Lauren: And it only takes about half-an-hour to watch them all through. It’s a quick watch.

Sarah: That was, honestly, part of it. We knew it was difficult subject matter and if we gave it to you in these little chunks, it might be easy to digest. But Henriette says something so beautiful, which made me cry at the time and always since, which was: Just take it minute by minute. I think we have that terminology of taking something day by day; but truly, especially with illness, almost irrespective of what illness you have or illnesses, it is constantly changing. You can wake up and even if your pain level's the same, you can feel furious with it, or you can feel fine with it. I think … learning to not accept that as the norm necessarily, unless that speaks to you … I think just understanding that it's okay just to deal with the next hour. It's okay to deal with how you get through this day, and how you get to bed at night, and not putting pressure on yourself to constantly be thinking about it in a really big global ‘what's my life gonna look like’ way. I think there's a lot of safety and sanity that can be found in really just taking it moment by moment. In my own health journey, I have referenced Henrietta's line in my brain. So thanks, Henriette. And sorry for stealing your quote!

Lauren: She’s become your conscience! What about the rest of you, Erica, Henrietta, do you have anything to add to these top tips?

Erica: That was beautifully said, Sarah. I agree with all those. But I'm also gonna quote Henriette!

Lauren: I love this. The constant support and reaffirmation within this circle is gorgeous.

Sarah: Well, one of the great things about making a series about chronic illness, you get some real great tidbits and tricks.

Erica: Also, I think that both Sarah and I, at this point, could recite not only the entire published series, but people's full interviews — because we've watched the footage and listened to it so many times. But Henriette, in a point that didn't make it to the series, talked about forgiving herself. Sarah touched on that a little bit, at the end, but I think … this sucks.

For me, I do feel like chronic illness is so much a part of me, lupus is so much a part of me, that I can't separate from it.

It has given me a lot of beautiful things, and it's made me the person that I am, so I'm grateful for it in a weird way. But I, 100%, understand people who don't feel that way about their illness — because yeah, it sucks. And so if you have days where you are just full-on so depressed and hate this, and are so mad and heartbroken that it has affected your life in so many ways, that is fine and you have to let yourself feel that — or I don't think you can push through for other things or find acceptance or find moments of peace. If you don't let yourself have those moments of anger and upset and all of that, because so much of this is unfair, and so much of it is just totally heartbreaking. So, yeah, forgiving yourself and letting yourself feel whatever you feel. Or having those moments where you feel like you wish it was more visible. That is real and that is valid, and that's okay. Ezra says, I think at the end of the first film, that embracing those beautiful, horrible, heartbreaking, tragic, great … all of the moments … embracing that is okay, and that's good.

Lauren: Beautifully said. Henriette, do you have anything to add?

Henriette: They said it so beautifully!

Lauren: Well, you're all saying things so beautifully.

Henriette: Soaking up love! I think what I would add is something that’s really changed my life. And there's been some pretty dark days, I would say over the last few years, as I've articulated today … kidney transplants, addiction. But I think the thing that really brought me to my knees was needing to live with chronic pain, which was different from renal failure in sobriety. So I didn't have the option of having a glass of wine at night, looking into medical marijuana as an alternative, nothing. I really had to find a spiritual solution. And I was able to find, as I’d mentioned, prayer; I mentioned meditation. But I think there's something very powerful about gratitude, and cultivating a practice of gratitude. 

Lauren: And there are scientific studies that would agree with you. 

Henriette: 100%. 100%.

And gratitude is a very hard thing to find when you're overwhelmed with physical pain and financial strain and feeling isolated, and all of those things.

But I really believe it is a practice that you can cultivate. If you do something simple, as I do this with many women now — some of them are my sponsors, my friends, my sister-in-law — we do a train at night, through our emails, and we find three things that we're grateful for. And three things that we did well. What it does, it really forces you to look at your day. And even if you are completely overwhelmed with pain, and there have been days where I've been like that, I can still find gratitude for Walter White, the basset hound … for a comfortable bed that I can lie in and rest in when I'm sick. The only drawback to moving back to Canada with the very long winters, which we're still experiencing, is to have that wisp of air on my face if I crack open the window. Just get down to the basics, and and repeatedly do that night after night as a way to remind yourself that there's always, always, always, always, there's always something to be grateful for. A doctor that listens to you, a friend like Erica was saying that texts you and says, “How are you doing? You must be really concerned about your health at this time.” You simply can't stay in a completely negative state if you cultivate that gratitude. So that's the thing that I would encourage people to do. But make it a tangible practice, not just go … oh, I’m grateful for this bowl of ice-cream … or whatever it is.

Lauren: You can get friends involved, as you say, who have chronic illness or who don’t. It's good for everyone.

Henriette: You can create your own little community. There's something about accountability, too, that can be empowering when you feel so helpless at times in your own illness. I look forward to it at night. It's changed things for me on those dark, dark days. It saved me, to be truthful. 

Lauren: Beautiful. All right, final Top Three list. Top things that give you guys unbridled joy, that despite lifestyle changes you may have had to make working around treatments etc., three things that you're just unwilling to give up because they make you so happy. So this could be guilty pleasures, it could be a secret indulgence, a comfort activity — just anything that makes you wildly happy.

Henriette: Well, I discovered, honestly when I got out of rehab. It was only a few months after my kidney transplant, and I was on an incredible amount of medication at the time, and I had a lot of side-effects. I discovered three things that, for me, were what I call deal breakers — and they're still my deal breakers today. If I can do these three things I feel better. One is … and I know it can be challenging when you're in a physically compromised state … but somehow getting endorphins from exercise. Right now we can't do very much. Unless you have a full-on gym in your basement — and congratulations if you do. But I go for a walk every single day; I power walk, I listen to ABBA.

Lauren: Oh, you're my kind of woman! ABBA is the best pump-you-up music ever.

Henriette: Still fresh, still fabulous. There's something about … especially given the conditions we're in now … just getting outside and taking it all in, and and just endorphins, 100%, changed things for me, even if it's just the tiniest little bit. The other one for me was writing. When I first got out of rehab, I would write a blog every single day — which ended up becoming a book, which ended up becoming what it is today.

But I completely believe in the nourishing power of art, the healing power of art … whatever it is.

If you want to take up painting, drawing, puppetry, music, trumpet from when you were in high school; there's a part of our body that responds to that and is healed by that, and I think you escape into that. And that is also healing. And then the other thing for me, from the program Alcoholics Anonymous, was getting to a meeting and and essentially one alcoholic talking to another. But that's the principle of community — somehow connecting to somebody else that understands the way you think, that understands the way you feel, that understands what you're going through. And I'll tell you, I also separate my two transplants. When I had my first transplant, I was a 14-year-old girl in Toronto that had to go to the library downtown to look up what all these medications were, what kidney disease was. There was no Internet, there was none of this. Go hashtags! Because #kidneytransplant, I have found this incredible community. And what it does is, it deepens my gratitude for where I'm at with my transplant — because it's going beautifully. But as I mentioned early in the podcast, there are people struggling, and if I can offer support to them, and they in turn are supporting me by reminding me how fortunate I am … So that's what I would say. 

Lauren: Beautiful. All right, Sarah, can you give us your top three joys?

Sarah: I’m about to sound hideously English — as if that hasn't happened in the last hour-and-a-half. Also I’m a copycat of Henriette, because it's similar  — dogs. Straight up, anyone you ask. I have an issue; I adore dogs.

Lauren: That’s not an issue. That's a great thing!

Sarah:  I'm very lucky to be quarantining with a dog right now. And similar to Henriette's experience, especially when I'm flaring, and even when I’m not.

Lauren: There he is! Henriette is showing us Walter White. 

Sarah: I’m sorry for all of you listeners who can't see a basset hound in front of you. 

Lauren: He's very sleepy, as well. It’s very cute.

Sarah: So dogs! Secondly, eating great food. I finally started cooking. I made horrendous carrot cake muffins this morning, which just kind of sat next to me and were, like, “Why did you do this to me?” But I think an English roast — making it, eating it‚ is a favorite. And finally, walking. Especially when I first got sick, and because I simultaneously and in tandem, as that happens, went through a lot of mental health challenges throughout my teens … I remember someone once saying to me, probably one of my therapists throughout the years … that even if the idea of going to the gym or exerting yourself too much is just more than you can handle … Most people, I say most people with again, a degree of privilege, can —even if it's like a tiny stretch in your apartment right now. In general, there's something about the satisfaction of having just gone out and stretched your legs, even for five minutes. I'm lucky with my amount of health that I'm able to go for a nice hour-long walk, or whatever it is. I think, giving yourself … as opposed to, especially if you're not in the pattern of having a ton of exercise, and even if you are, frankly … I think there's just something so healing about getting outside, walking at your own pace. I stick on a podcast. Now I'm gonna listen to ABBA, and visualize basset hounds.

Lauren: That's a pretty good way to go. I love that. And Erica, give us your top three joys.

Erica: I will agree with the food thing. I have always been a foodie, I guess … I kind of hate that word. But I am, and thankfully I've tested a bunch of different diets and all that, and diet hasn't really affected my health. So I've just really allowed myself to enjoy the food that I want to eat. It's just been something that is always very exciting to me. When I lived in New York, I was so obsessed with restaurants and trying new places, and I've done that a little bit more so here in LA. But I'm just cooking, and I've gotten into baking — I’m not that good at it. But when you are home and you know there are sometimes times when you feel like … when you're living with chronic illness and you can't live life “normally” … doing something where you can create something and see the end product is very satisfying and makes me feel very good. So that has been something that's really nice. And then I guess, in general, and I think this is something I've learned as I've grown up … is not fighting what's considered a guilty pleasure. 

Lauren: I almost hate to ask and use that language. Your comment is good. 

Erica: I know you don’t mean it that way.

Lauren: Thank you for understanding that.

Erica: Yes. I remember when I was in seventh grade, and I pretended to like Led Zeppelin. I did not like Led Zeppelin. I only listened to musicals, but I really wanted to be cool. So, I think just accepting that. My interests are those of a 13-year-old, and that's what it is. 

Lauren: And you’ve got a Harry Potter banner behind you.

Erica: Oh, yes, I have a Harry Potter banner behind me.  I convinced my girlfriend, when we started dating, and who had never read the books. I'm a huge Harry Potter fan. And I finally got her to read the books. And now she's a bigger fan than me.

Lauren: Oh, I get it. I just read them this year, this past year, for the first time — and I'm obsessed. 

Erica: Welcome.

Lauren: And to anyone who hasn’t, start reading them.

Erica: Re-reading those books, and I listen to a podcast called MuggleCast every week. I love it. I look forward to it every time and it makes me really happy. And finding my weird nerd-out things … like, I'm a really big Disney World fan. So I watch YouTube videos of people's trips to Disney World!

Lauren: Well, have you heard that during COVID, you can go on, I think, the Disney website and they do virtual things of you being on the ride. I’m imagining a lot of parents with their kids, pretending you're on a roller coaster. 

Erica: Things like that, and listening to podcasts; I listen to three podcasts about The Bachelor. It is what it is. I am in Bachelor Nation, unfortunately.

Lauren: You’re not the only one of the people who's been on the podcast who's like that!

Erica: So just really leaning into those things, and especially as someone in the entertainment industry, I watch a lot of TV. Theater was my first love. It is one of the things that makes me the most happy in the world. I really hope that one day I will be physically well enough to do it.

That is my biggest goal of goals. I could cry just talking about it.

That is something that just makes me so happy. Pushing myself to go see live things. My favorite music is Taylor Swift, and One Direction RIP, so now it's Harry Styles. And there were a few concerts where I was really not feeling well. But my girlfriend was, like, “You need to go. These are your people; you must go to the concert.” We had evaluated that I wasn't going to hurt myself by going to the concert, but it was going to give me joy.

Lauren:  The joy outweighed the physical issues. 

Erica: Yeah. And that's something I've learned this year … just kind of figuring out when it's not unsafe or dangerous for you to push yourself a little bit. If that is going to give you so much joy, then it's worth it — and trying to figure that out.

Lauren: Beautiful. Well, Erica, while I've got you, can you tell everyone where to find Suffering the Silence?

Erica: You can find our website at SufferingTheSilence.org; on Instagram @sufferingthesilence;  on Facebook, facebook.com/suffering the silence; and our Twitter is STStogether.

Lauren:  Beautiful. Thank you, Henriette, can you tell everyone where to find you and your writing?

Henriette: Yes, absolutely. My memoir is called In Pillness and in Health.

Lauren: The best title!

Henriette: I wish I could take credit for it! It was my cousin, and I have to give her credit.

Lauren: You’re very kind!

Henriette: It is available on Amazon; and I'm on social media, on Twitter and Instagram @hennybird, and with my very unusual name you can find me on Facebook, and I have an author page there, too. 

Lauren: Wonderful. And Sarah, can you find us finally … to what's brought us all here together today: Trust Me, I'm Sick.

Sarah: Sure. So our website is TrustMeImSick.com. We are on Instagram @TrustMeImSick, and as I said, on Facebook. Also, all of the films are available on Suffering The Silence ID TV; like we said, they are five minutes each, very easy to watch. And you can watch them on Suffering the Silence, Facebook, and you can watch them on YouTube. Which, if you just type in Trust Me, I'm Sick on YouTube, that’s where you'll find them.

Lauren: And they're all linked on the website as well. Ladies … Erica, Henrietta Sarah … it has been such an absolute pleasure and honor to speak to all three of you today. What an amazingly eye-opening, illuminating conversation ,and I'm so excited that our listeners are going to get to hear from you all as the people behind the camera and in front of it. And I encourage everyone tuning in to watch Trust Me, I'm Sick, to get involved with Suffering The Silence, to read In Pillness and in Health. There's so much rich content out there for you, and if not for you, it's probably for your loved ones, too. So, ladies, thank you so much for being on the show today.

Erica, Henriette, Sarah: Thank you so much for having us!


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