Allie Cashel talks lyme disease, medical gaslighting, and the power of storytelling. Allie shares her own story and the story of her book, Suffering the Silence, and the non-profit she co-founded that bears the same name.
- Brianne’s TEDx talk: Disease Begins Before Diagnosis
- An explanation about the Lyme Controversy from The Atlantic
- An article about Lyme from The Cut that overlooks the patient experience
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
If you’re listening, I just want to thank you for sticking around during this unplanned and unpredictable hiatus! I am still recovering from a huge setback in the spring and I can’t predictably use my computer yet so, here we are. I have one more interview from last year to release and then I’ve recruited help for the computer stuff that my brain can’t handle. So I’ve got a plan to get back on some kind of regular release schedule, but I don’t quite know what that schedule will look like yet.
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And I have one more plug to make before we get to the good stuff. Back in February I spoke at TEDx Deerfield about chronic illness and the diagnostic process and the video just became available in September. No matter where you are in the diagnostic experience, I hope I’ve captured some part of your story in the talk. You can find the link in the show notes or just search youtube for my name and the title Disease Begins Before Diagnosis.
This week, I’m talking to Allie Cashel about lyme disease and medical gaslighting and the power of storytelling to make sense of difficult experiences like illness. Allie shares her own story and the story of her book, Suffering the Silence, and the non-profit she co-founded that bears the same name.
Allie and I had this conversation almost a year ago, which means that you might notice some weird omissions about current events. I also mention a couple articles about lyme disease that are linked in the show notes but are not quite as recent as they were at the time of our discussion. Anyway, it’s still a wonderful and relevant conversation that I’m excited to share with you.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: I like to start just by asking people, how was your health as a kid?
Allie: So my whole journey with health and chronic illness started as a kid, and it’s interesting. I actually don’t really know if I remember what it’s like to live in a body that hasn’t been impacted by this in some way. And so in times of my life where I’ve been healthier, like right now, for example, I’m doing pretty well health-wise, I’ve never really had a clear point of comparison, back to, to understand like how much better I could be. Yeah, it’s been interesting. I was always… since I was like seven years old, I’ve dealt with this stuff.
Brianne: And so, so seven, and I know like a little bit about your health, so some leading questions, but did something happen dramatically for you or was it kind of a gradual change at that age?
Allie: Yeah. So, when I was seven years old, I was bit by a tick, and I had a very sort of clear classic presentation of Lyme disease. I had a tick bite. I had a bullseye. I had a fever. I had a positive blood test. Sort of everything I need to get a Lyme diagnosis, which a lot of people who are ultimately diagnosed with Lyme do not have all of those check boxes. So I was diagnosed right away. I was put on a short course of antibiotics. I took those antibiotics and everybody sort of assumed that. That was that. And I was fine. And moving on. I’m the oldest of five kids. So, it wasn’t exactly like we were going to pay insanely close attention to every little tiny thing… insane, apologies. So we… yeah. So I sort of assumed that I was okay, and it wasn’t until I started… a few years later when I was about 10, I started to go through adolescence, and some strange symptoms started popping up that became harder to ignore. So I was having a lot of trouble walking. I was having trouble sleeping, muscle pain, joint pain, really consistent, terrible headaches, and… all of which in hindsight, of course fall into, pretty classic presentation of Lyme, but because I had been diagnosed and treated before, we assumed that that was not the case.
Brianne: Right. And I’m sure no doctor would have been going, “Were you bit by a tick and then given antibiotics three years ago?” Yeah.
Allie: Exactly! But I was living in Westchester County. I grew up in Westchester County, which is just about an hour north of New York City, and it’s one of the most endemic areas for Lyme. So Lyme was actually quite top of mind for a lot of pediatricians in the area and things like that. So because of my symptoms, I was… ultimately Lyme was considered again and I tested positive again and was diagnosed again. And that second diagnosis is really what ended up sparking years of treatment, in an effort to try and get symptoms under control. And instead of getting better, things really only seemed to get worse. And if not worse, just really consistent. So all through middle school and the beginning of high school I was on and off of antibiotics, IV antibiotics, oral antibiotics, I did a ton of different, holistic and more natural treatments. I was living sort of in this bubble of the Lyme world at the time where I really didn’t know that there was any controversy and I don’t think my family knew that there was too much controversy around the fact that. It was having these longterm treatments. My dad had also been diagnosed with Lyme and was really, really sick, and had been on antibiotics for quite a long time as well, so it all sort of seemed fairly normal to us. And actually in the, in the place where we growing up, a lot of people had had that experience. There were doctors around who were treating… it wasn’t… it was, impactful in that it was hugely impactful on my life as an adolescent, as somebody who was going to the doctor on a incredibly regular basis and unable to participate in the way that other kids were able to participate. But it wasn’t impactful necessarily that much on my mental health at the time because there were a lot of people around that…it wasn’t… I didn’t feel abnormal.
Brianne: And nobody was telling you that maybe actually you weren’t sick.
Brianne: And was insurance covering all of the antibiotics at that time for… I guess for both of you really?
Allie: No. We actually got lucky in that a lot of our antibiotic treatment has been covered over the last 15 years, and it hasn’t been entirely clear why. I think what’s crazy about, Lyme and insurance is there will be patients who have the same diagnosis and the same treatment, and some people get it covered in some people don’t. I always have tested positive, and I think that the positive blood tests maybe have had a more… a positive impact on the insurance coverage, but not everything was covered by no means, but we were more lucky than other people were, that we knew. But yeah, I was… my junior year of high school, just before my junior year of high school, I was the healthiest that I had ever been. I was off antibiotics. I was really participating actively in my friendships, in school, in the play, like I was rocking it, you know? and I felt sort of for the first time that I was making real progress in my life, I fell in love that year. It was good. I had my feet on the ground in a way that I had, I never had before. In the summer between my junior year and my senior year of high school, my dad found out that he was going to have to relocate to Boston for work. He had been out of work for years… the financial crisis, all that jazz. And my whole family was going to have to pick up and move very quickly that summer. And it was sort of the first time that I was able to find secure footing. It was the first time that I was doing pretty well. And that move felt like it was going to be completely catastrophic to any of that progress.
Allie: So my parents and I decided that I was actually going to stay in New York and finish school. And they were going to go move up to Massachusetts, and I would go see them whenever I could. And as all these decisions were happening, I started to notice some familiar things. That were popping up, some pain, some headaches, but I was working for the first time I had a… I was a camp counselor, so I was outside all day and it was very easy to sort of push things aside. I think this happens with a lot of people, I was… you know, “Oh, I think I was in the sun for too long” or easy excuses.
Brianne: “Kids have germs, whatever it is.”
Allie: Exactly, exactly. So I sort of ignored it and I didn’t tell anybody about it. And my family moved at the beginning of August, and I started school right after labor day. And in the course of about eight weeks, by the end of September, I had had a whole slew of neurological symptoms come on that I had never experienced before. I pretty much lost my ability to speak without a serious stammer. I lost my ability to read. I was in six car accidents in six weeks.
Brianne: That would be scary.
Allie: Thankfully nobody was hurt or anything, but it became very, very clear, very, very quickly that, something was terribly wrong. And I had never had neuro symptoms before. And so again, we sort of didn’t assume that it was Lyme. There’s like this strange recurring pattern in my life when I look back on… not wanting or not accepting, I think, what this diagnosis can actually be. And so we were terrified. We thought that it was something else. Maybe I had like a brain tumor or… we had no idea
Brianne: Neurological symptoms are very scary.
Allie: Yeah, they’re terrifying. And you just… especially at that time I just lost my sense of what was real and what was not in a way that I don’t think I’ve ever totally, found that confidence in the way that I had it before all of that happened . But we were really… we were very lucky and we got an appointment with the head of pediatrics at one of the biggest hospitals in Boston.
Allie: To try and figure out what was going on.
Allie: And so my mom takes me to this appointment. At this point, I’m like almost entirely nonfunctional, but I remember in the car on the way to the appointment, we were sort of like laughing. It was this really positive energy. Cause we had this feeling like, “Oh my God, maybe this guy is going to know! Maybe he’s going to save us!” right?
Brianne: Yeah, like, “He’s a great doctor and he… we’re in. We’re going to be there soon.”
Allie: Yeah. Exactly. So we go into his office and… he’s seen my medical history before… my treatment history before, and we arrived and he takes my mom into his, into the sort of room and asked me to wait in the waiting room. And I wait there for over an hour, while he is in with my mom. And at the time, I really was struggling to communicate with other people. Being alone for an hour in a strange place was not like the coolest thing at that time.
Allie: And I later learned that when he was… he was reviewing my medical history with my mom. And, basically was telling her that she was a bad parent for having ever considered that I should have been treated for Lyme for that long, that there was really no physical way that a disease like that could persist in the body for as long as it did, and that my parents had basically done serious damage to me, by making the decisions that they made and the treatment decisions that they made over time. And eventually he brought me in. He did a short, very, very short physical examination. And we left the meeting with the diagnosis, that it was physically impossible that I was suffering from Lyme, and that instead I was having a mental breakdown. I was regressing to the point of infancy, and all of my symptoms were a reaction to a mental breakdown in response to my parents’ move. So, losing the ability to speak or read or drive a car… these were all things that were associated with my adulthood or my adolescent life. And that I had lost them because I felt a need to be cared for by my parents. Or I had, I had been abandoned by my parents and that’s why I was reacting in this way.
Brianne: That’s atrocious.
Allie: Yeah. And I think, you know, in hindsight I thought a lot about it since then, of course. And I think that that experience was almost more traumatic than the physical experience itself. Because what it did was it created this sort of fissure in my sense of self and my sense of reality, where the things that I knew or that I believed in, I couldn’t trust anymore to be real. I didn’t know if symptoms were a result of something that was all in my head or, something that I was experiencing truly as a physical symptom. And I think the other thing that happened that was really troubling is that it basically made it so that my understanding of my own mental health was something I almost couldn’t engage with because to engage with the idea that I was, mentally ill… due to that interaction, and honestly, a number of other interactions that followed, meant that I could not engage with the fact that I may be physically ill. And so it created this big sort of schism that I couldn’t understand the way that those two things are sort of inextricably linked, and I think ultimately that was a huge part of why it took me so long to get myself back and heal to the extent that I could.
Brianne: And was that… cause you mentioned earlier that you, you guys had had no idea that there was controversy around Lyme. Was that your first, totally first encounter with that idea that there were doctors who believed what he clearly believed?
Allie: Sort of, yeah. And up until that point, my relationship with most of the doctors that I had had had been really positive. We… there was, there was one doctor who we worked with that pursued treatments that we didn’t necessarily think were the best, or that may have like the environment wasn’t great. But. That seemed to us to be more of a problem… isolated with that person rather than in the whole system. And I think that, that aggressive denial and sort of, the judgment that came immediately having seen my file or knowing that, that I had experienced this part of the medical world, I was treated differently right away because of that and because of experience. And we had never seen that before, or I at least had never seen that before, that experience, so yeah, it was, it was earth-shattering,
Brianne: Yeah. Yeah. And I just think like one thing that really strikes me about it, and I wonder maybe if it’s more likely in pediatrics, I don’t know if that would be the case is I feel like a lot of the times when people talk about this gap between, “My… all of my experiences are either attributed to physical illness or mental illness. And I have been thinking of them one way. And now this doctor is telling me that they’re a different way.” It’s often really subtle. Like people talk about it… you know, not what he just said, but just like, “Okay, but have you seen a therapist? Like before we look more into it, have you talked to a therapist? Have you explored mental illness?” And to have someone be so incredibly confident based on only reading your file, as you’ve said is like, the biggest and most aggressive possible version of this widespread and usually subtler problem. It’s astounding and terrible.
Allie: Yeah. And it’s interesting. I’ve done a lot of work since then. In learning about Lyme… experiences of Lyme diagnosis… but just chronic illness diagnosis in general. And I think that there is this theme of basically a doubt around people’s expression of their own narrative, especially relevant with young women or people of color, where, if there’s any doubt around your experience of the world or the way you move through the world at all, it’s going to be hugely magnified when you come into a medical setting. But there was something so, sort of clean and definitive about his approach to this… diagnosis is really what it was, that, I mean… it caused internal trauma, but it also caused a lot of trauma within my family. And, you know, in the world right now, there’s so much doubt around institution and sort of institutional knowledge, which I find to be very troubling. But even in that experience, like we experienced that in a small microcosm of sort of… you know, “This is the top pediatrician in one of the medical epicenters of the world and who are we… or who am I to say that this person is wrong?” And I think, you know, my parents had very different opinions of how to manage that. When I was able to sort of articulate myself, I had a very different opinion of how to manage that versus the way that my mom did. And it took us a long time as a family, I think, to heal from that. Who do we separate from the actual impact on like treatment of a disease that had to be treated? There were problems that grew from that even separate. And I think it’s something I’ve been thinking a lot about just in terms of the way that we interact with physicians in general. Those interactions have ripple effects, much past whatever that the prescription that’s written down is, or the diagnosis that is. And to be more aware of that, I think is really important.
Brianne: Yeah. And cause like I couldn’t 100%, imagine it even just from him saying like, “Everything that you have done as a parent was wrong.” And everything that that would mean, and every way that someone would have to navigate that information.
Allie: Yeah. Yeah. And just, I think, you know, in having spoken… I don’t want to speak for her, but in conversations since then my mom has had so much… there was so much sadness for her and that she had… she only wanted to do the right thing or be the best parent that she could be. And, to learn or hear that she may not have been, I think was a really challenging experience for her as well.
Brianne: Yeah. Yeah. And I had one more thought, but it’s gone now, so that’s fine. So, okay. So after that, which is obviously like a huge moment… but also while you’re having all of these still basically unexplained neurological symptoms that are brand new… and I’m sure… cause you had been basically caring for yourself at that point and I’m sure that became difficult if not impossible.
Allie: Impossible. Yeah, pretty much. So, I left school, I moved in with my parents, and we were just sort of going… as many people have done, you know, you go from doctor to doctor. Ultimately we saw another Lyme specialist who… I had MRI, cat scan… and I had irregular brain scans and also tested again, positive for Lyme, but this was the first time that I had ever been diagnosed or tested for co-infections and was diagnosed with a number of different tick-borne illnesses as well at the time, that up until that point had never been treated. And I’m sure listeners of the show probably know this, but depending on what type of tick-borne infection you have, you likely need a different treatment. So, the thought was that may be part of the reason why these neuro symptoms had been so intense is that up until that point, they’d not yet been treated. And I was also of course, in therapy through all of this. And I think my relationship with therapy as a whole was really negative because I sort of saw that as the thing that was affirming this narrative, and I’m going to use this word consciously, but this narrative of me being crazy. And I think that the stigma attached to that word… I very much felt that stigma aggressively, in that point of my life, and there were even friends who would say, “Oh, well, like, you know, that’s the time that Allie went crazy,” or “that’s the time…” and I… it’s like… I’m almost… I get afraid to talk about it because of the stigma that’s attached to that perception of variance… still to this day, even though it’s basically my job to talk about it.
Allie: But, yeah, so I was in therapy this whole time and… but it really wasn’t, I don’t think it engaging with the experience of treating my mental health. And it was sort of closed off to the need to do that and the need to understand the trauma that was associated with this and the trauma that I was going through. Both medical-induced trauma but also just purely the trauma of living by yourself for the first time and losing your ability to function at all, and having to like pull out of your senior year of high school. Those things alone, even separate from any trauma that I experienced within the medical system needed to be dealt with. And I was like really closed, to doing that and really closed off to doing that.
Brianne: And do you think in retrospect, that the therapist would have been… whoever you were seeing would have been helpful for that or… Because I feel like one of the things that people talk about a lot, which I’m sure you also know is a lot of therapists are also supporting this idea that everything is say like somatization, psychosomatic pain. And so if you have a therapist who’s supporting that, like they’re not going to be the right person to help you work through this very real stuff that you’re talking about.
Allie: Yeah. So the… at the very beginning, the first therapists that I were seeing were referred through the hospital system that I was initially working in, and I think that that was very real, and very much a part of the problem. Anytime I would bring up other treatments that I was going through or other diagnoses that I was receiving, it was almost like we weren’t allowed to talk about it. And so I noticed myself… and this is a pattern that I noticed a lot in the years after this… is that I would just lie and leave it out or, talk about something else because I knew that that was more convenient for that person or safer for that person to talk to. So I wasn’t painting like a truly comprehensive picture, I think. You know, if I put myself in the other person’s shoes or… from the other perspective, they also wouldn’t have been able to do their job properly without me feeling safe enough to be as open as I needed it to be in that environment. And so there’s a lot of trouble, I think, concerning things happening in the world of mental health treatment. If people feel that they can’t disclose their whole experience, it becomes very challenging to actually treat that person.
Allie: I did ultimately find a really awesome therapist who I was able to work through a lot of this stuff with, and I’m very grateful for that. But I think… I’ve said this so many times, but it’s like in some weird way, the mental health component of this has been way more challenging to deal with. And I’m still dealing with in a very intense way today. And the physical stuff… as crazy as it was ended up having like a more direct line, I think.
Brianne: Yeah. Yeah. I mean, and that makes sense. I think just the level of gaslighting that can happen is so, so intense. I mean, again like that… your story is so obvious and direct about it and it can happen in so many different ways, but of course that makes your experience… your relationship to your physical health and your relationship to your mental health, incredibly fraught. And I know for me, one of the things that was actually a really big deal… because I kind of came up the other way that… I had a lot of weird stuff going on with my health when I was younger, and I thought that it was a mental health problem for a very long time. And a therapist was the one who was like, “You know, this sounds like a physical health thing that you’re describing.” And that was mind-blowing to me that that could be true, but either way, there’s such a stark line where we think that that’s how these things work for some reason. And I don’t know, it’s, it’s bananas in the culture.
Allie: Yeah, yeah.
Brianne: Okay. So co-infections… they start looking at and start treating for during… and you must have been right around 18 at this point?
Allie: Yeah, yeah. Almost 18… and I started to undergo treatment for co-infections. I went back on antibiotics, and I was able to get a little bit healthier. I went back to New York, and I had the most amazing guidance counselor of all time who helped me navigate disability in the education system in a way that… I don’t think I ever would have made it through without her. And I think there are so many people who experience a need to move through the education system in a different way, or need accommodations or adaptations, and don’t have allies and advocates in the way that I did. And so I was able… she advocated for me to have a tutor who I met with at home for a long time. So I was able to move forward in my studies and I actually successfully graduated at the end of that year somehow with a lot of help from a lot of other people. And I think… with that, I got into college. I was set to go to college that fall, which I did. And I got healthy enough that I could sort of fake it, you know, I could mask symptoms really well. My neuro symptoms were significantly more under control, so… you know, I was hardly speaking for a long time. And I was able to communicate properly. I was reading well. I could drive a car. All these things that were such aggressive red flags weren’t quite there anymore, so things like slips in my memory or small, you know… dropping of words or not having access to language. It didn’t seem like that was that big of a deal. So I was able to sort of move forward, and I think I did so with the desire to just erase that part of my life and sort of never think of it again. and just like plow ahead. So I went to college. I did not tell a single person freshman year about the year that I had had before. I was on and off… in and out of treatment all through my freshman year of college. And had successes and struggles that year, of course, but really kept most of my health a secret that year. I didn’t really engage with my family very much around my health. It was sort of this big open sore that we just put a bandaid on and it was like, “Well, we’re fine now, right? Everyone’s happy and healthy. And we’re good. Everything’s better.” Exactly. And there was never a conversation about the fact that this was likely going to be something that I had to manage for a long time. I really didn’t have the language or the tools to know how to share that I was struggling with people in my life or how to talk about it in a way where I could ask for help or let people know what I was feeling in an authentic way. And it wasn’t actually until like my senior year of college when… I was a writing major and we had to write a senior thesis, and I was encouraged by a professor to write about an experience that I had had. And I really wasn’t feeling well at the time, and so it sort of was a way for me to process that. But I had this completely surreal experience where I tried to write about what had happened that year and it was almost as though I was physically unable to write it down. Or that… it was almost like if I looked back at my memory that there was a Sharpie that someone had sort of blacked out over certain things that I knew that I had access to somehow, but I didn’t have access to right then. And so my professor said, “I think you need to talk to other people who have maybe gone through a similar thing, just have a conversation, and maybe that will help to process or encourage some writing.” And so I started talking to other people who had been diagnosed with Lyme and realized that my experience of having been dismissed by doctors… my experience of feeling that overwhelming isolation and shame and sort of fear around the way that I was perceived by doctors and medical professionals, but also people in my life… this was not a unique experience at all.
Allie: Almost everybody who I spoke to had a similar feeling of being… feeling like they couldn’t talk about it, or they didn’t know how to talk about it, or when they did talk about it, people wouldn’t listen or wouldn’t believe them. And I was devastated to learn this, of course, but it also was so affirming, to realize that other people had gone through this thing that I had gone through and that it wasn’t… you know that I wasn’t this totally huge anomaly. It was something that other people were experiencing as well, and so I became sort of obsessed with collecting other people’s stories. And I did a collection of interviews with Lyme patients from around the country around the theme of feeling as though… of dismissal and of, sort of the silencing of the experience of this diagnosis. And through those interviews, I was able to start talking more comfortably about my own experience. And it was really the first time that I had even said out loud, certain things that had happened. and it would often sort of surprise me. Like it would be a conversation like this, that we’re having right now, and someone would say something that had happened to them. And I would say, “Oh, you know, that reminds me of this time when X.” And I would say… and it would almost shock me. Like “I can’t believe that I’m able to talk about this in the way that I am.”
Allie: I started writing about it. I shared some of the writing with my family, and we started talking about it in a way that we had never talked about it before… in a lot of really, really, really challenging conversations, but conversations that had to happen and… we had to acknowledge this horrible thing that we had been through together that we had honestly never spoken about after we decided that we were going to move on, and it was done. Denial is an insanely powerful tool. But just the process of going… of writing this and writing my own experience and writing down other people’s experiences became this massive healing force in my life, in my family’s life. And I haven’t really stopped doing that ever since. And so that collection of interviews, I had published as a book, which is called Suffering the Silence, which is my memoir of my experience with Lyme, but also very much my experience of learning how to talk about Lyme and learning about the controversy around Lyme and, the many sort of silencing forces that exist in our medical world… in our society when it comes to talking about illness. And after I was working on that book, a very, very close friend of mine from high school and I started talking… she was diagnosed with lupus our senior year of high school as well… and we were very best friends… talked about everything… never talked about the fact that we had this shared experience of being incredibly ill our senior year of high school. And this… the book sort of prompted that conversation for us, and we realized how disturbing it is that these two people… we were so close and even we felt that we couldn’t talk about it. And, just this realization that there are so many people out there who feel that they can’t. And this is why your project is so wonderful and important. It’s just this… to create spaces where we can talk about it. And to say it out loud and makes it real and it acknowledges the struggle and also the strength, I think that comes through a lot of these experiences. So we’ve since started an organization that’s also called Suffering the Silence that creates opportunities for people to tell their stories around illness and disability. And I think storytelling… and I’d love to hear what you think about storytelling too, but I think one of the most amazing things about it… in particular, when it comes to stories about illness is that it creates something outside of us. When we tell our stories or we write our stories it’s something separate from us that we can engage with in a more critical way. So for example, my mom and I never could have talked about what happened if it was just her and me sitting across the table, and me saying, “Mom, it was so painful for me when you didn’t believe that I was sick.” But when I wrote it down in this book that I then passed across the table and she read, we could talk about, you know, “in chapter 13 when this thing happens, that made me think of this.” It creates… it’s almost like a conversation tool or something… that art allows us to engage with these experiences that are so painful and so raw I think in a safer way, and I think illness and disability stories have the power when we collect them together to really change the narrative around people being dismissed and not believed, or I hope they do. And so that’s why I think your project is so cool in that it creates a space for people to do that. So I’m grateful for you for that.
Brianne: Thank you. Yeah, I mean, I agree. I think these stories are super, super powerful and they matter. And I think one of the things… because even before I… well, I’ll say before I got sick… before I realized that my health didn’t work the way that other people’s health worked also, I used to do a storytelling event in Toronto which still exists. It’s called Stories We Don’t Tell, and so it has a broader focus, but the same mission, which is like, “how can we create spaces to talk about whatever it is that we don’t feel comfortable talking about in our normal lives?” And it’s like grief and shame and loss and those are the big ones, and sex and dating too, which are kind of tied up in those feelings, but sometimes not. And I think that’s one of the things is like, when you go through this process of turning it into something like, extracting it from your brain and from your heart and putting it out so it’s standalone. It is… you can engage with it really differently. Both you as the person who experienced it. And you’re like, “Yeah, this was hard.” But also here’s this self-contained explanation of one piece of it that I can now… instead of talking about my experience directly which can be difficult as you’ve said, but I think it also like… one of the really, really hard pieces of all of this is how it makes other people feel to engage with these ideas. And I think that’s what you’re talking about with talking about your mom… about it with your mom is other people maybe who haven’t been through whatever the tough topic is… so in this case illness get so uncomfortable because they want to fix it and they don’t want you to be in pain and there are so many other things loaded in there. And when you can extract a piece of it and be like, “Hey, instead of us talking about what you could have done differently, I just want you to know what it was like, and then you’ll know that. And that’s it. That’s the only agenda here.” And it totally transforms the conversation.
Allie: Oh so much. And I think it’s… I love what you just said. I think there’s something really important about just saying what it is like, or just painting that picture and not having somebody comment or change it or ask if they could have fixed it in hindsight. It’s just that this is the experience. This is what happened. And to be able to say that, I think for me, at least helped me believe that it happened, which is a trouble always. and yeah, also I think has allowed other people to understand that it’s not their job to make everything perfect or fix everything all the time, that we’re all going to be playing different roles in each other’s lives as we move forward. Hopefully supportive roles, but probably not all the time and to just acknowledge that there is struggle. And this is something that, that we all likely at some point will face in our lives, some type of pain or illness or something, to be able to acknowledge that as a thing that happens, is important I think. And I think storytelling helps us to do that.
Brianne: Yeah. Yeah. And I want to say one more thing about it, and then I also want to get back to your story in particular. But it’s also like… it’s a thing that happens and it’s a thing that we can talk about. Like you’re not the only one who’s been through it. And if you’re… when you listen to a story or you read a story, it also gives you permission to talk about it. Cause I think that’s also kind of where… what you were saying when you start interviewing people. It unlocks all of these other things, hearing other people’s stories and that… that is also transformative. So it’s like, “How do you engage with the people who had… maybe were around you at the time, or who need to understand this?” And then also, “How can other people with this experience who are also silent learn that they’re not like… lift that isolation?”
Allie: Yes. It’s so crazy to think about. I’m sorry. Apologies. It’s really strange to think about how many people around me and around all of us likely are experiencing something really similar to what we’re experiencing at any given moment. And this is just the human condition, right? That we think that our experience is incredibly unique and all of this. It’s probably not, but the fear that comes with talking about some of this… of loss, of pain, of struggle, of illness… we’re so afraid to engage in that conversation… only further isolates us from those who could potentially connect with us or empathize with us. And if we can start to break that fear, we might realize that there are people around us who could be there for us, even if we didn’t realize they could in the moment
Brianne: Yeah. Yeah, it’s a big deal. And so I’m interested in how also this impacted… as you were experiencing that for the first time… now… I guess it sounds like in your senior year of college when you start reaching out to people, you talked a little bit about kind of the emotional experience of it and how it changed the conversations. And obviously led to a lot of really cool stuff, but separately, I’m wondering since Lyme disease… it sounds like was still… your understanding of it must’ve been shifting a lot around this time. Especially from something that had previously been seen as very treatable and had… was now causing new things, but this like… the hope roller coaster, basically.
Allie: Yeah. It was… my understanding of my body was shifting so, so much, and I think where my health is today, I’ve… and at the time too, a lot of this was changing, there’s this realization of when you’re treated for a very serious illness… I underwent years of antibiotic treatment and sort of, regardless of where you are on the Lyme controversy spectrum, years of antibiotic treatment is really challenging for any body to experience. And I was starting to grapple with the damage that that treatment was doing to my body, with the damage the illness itself had done to my body with potentially flaws that already existed in my immune system from the very beginning that nothing that I was going to do was going to help that or manage that over time. And I think… I did… I started learning about actually the diseases themselves and the way they interact with the immune system. I started learning about my brain in a different way than I had ever learned about it before. And it was… all of that knowledge was wonderful and really empowering to better understand why symptoms ebbed and flowed in the way that they did and why emotionally triggering events, like my parents moving, could cause this huge onset of physical symptoms and the interaction between those things. But it was also hugely overwhelming and sort of terrifying to know that I was living in a body that was just not going to be on my team all the time. And to have to accept that and accept the limitation that comes with living in a body like that. And I think we, we all have limitations in our physical bodies, but some of us maybe more so than others. And I had not wanted to accept that for a long time, and I think it was also really challenging to accept that, especially once I was able to get the Lyme and the tick-borne disease under control the fact that I was still having health problems that were never going to go away and weren’t going to be fixed by a dose of antibiotics, or an Advil or whatever it was, that this was something that I was going to have to manage forever, was really hard. And I think the people around me in the community that I was building were so helpful and valuable, in seeing role models of people who had come to that acceptance maybe earlier than I had, and had learned ways to push themselves in a safe way, and take care of their energy and manage their energy so that it wasn’t just sprints and crashes, which is basically what I had been doing for a long time. And I think having had the opportunity to have many of these conversations and to engage with people who were dealing… regardless of what their diagnoses were but… were dealing with their health in a really active way was so amazing for me because I was able to see what they were doing and sort of learn from them in real time. Because I had a lot of catching up to do, because up until my early twenties… and I had spent the last… the 12 years prior living in this place of experiencing intense illness, but not accepting the way that that was gonna impact me long-term, and not integrating that into my sort of daily life or daily care of myself outside of going for treatment at the doctor. But there was not acceptance of how that was a part of me or a part of the person who I would be moving forward. And I think that was the biggest and most important realization that I ultimately had. I don’t know if that answers your question.
Brianne: No, no, it does. Cause I think like one thing, and this is true for me, even when I started… I started doing these interviews now two years ago, so I started releasing them a year ago, but I did my first couple two years ago. And at that point I was like the sickest I’d ever been. And I’ve really… I really didn’t know still that so many people… that it looks like symptom management and energy management, the way that you just described it. I think one of the reasons that that kind of like sprint and then crash thing happens is that, I mean, doctors are telling us that like, once… “You should be pushing harder! Use your energy to get more energy! And if you have it, then great! Keep pushing yourself!” And it creates this cycle and we don’t… we do not see stories in the bigger culture about people living this way. It’s completely erased from media, and the impact that that has on… on all of us, I think, is profound. And that process of realizing that maybe there are people who are doing something different because they’re actually managing a chronic illness, and that maybe that’s something that you’re allowed to do, you don’t have to push and fight and push and fight all the time is like, it is a lot.
Allie: Yeah. And also… or just that the pushing and the fighting looks different, maybe. I think there’s a big, acceptance again… that’s a big word for me… but that comes in terms of thinking about what success looks like or what a career looks like. Even potentially what a family looks like. You have this picture in your brain of what you’re supposed to be. Especially, you know, in your twenties, you’re supposed to be… have some huge job and work 14-hour days and do all these things that were just never gonna be possible for me. And it’s been really interesting. I now… I work from home. I don’t work full time. I don’t have a full-time job. I work for a number of different organizations, so that I can sort of flex my hours. And there are so many people I know who do the same thing, but that was never something that was presented as an option or as like a respectable path. And I think there are just so many of us who need to find a more accessible lifestyle or accessible way to live life. And the fact that we’re so erased, and those experiences are so erased, only makes it harder for people to find them when they realize or they accept that they need to and that’s frustrating.
Brianne: Yeah. Yeah. And I think one of the things that’s kind of in the middle of that… you talked a little bit about working with somebody even in high school, your senior year, getting basically disability accommodations. And I think another layer to this as we look at careers is that I think also in the larger culture, when we think about disability, we’re thinking about static disabilities, and we’re thinking about static accommodations. And if that doesn’t apply, which like, “Oh, I need flex hours because some days I am performing just like what I imagined the healthiest version of myself would be performing, and some days I can’t read.” And when that’s the range… right now, I think this is starting to change, and like you said, you know a lot of people who are working this way now. But we don’t… we still don’t see a ton of conversations, or they’re just starting these conversations about like, “What do dynamic accommodations look like? What is it like to have a dynamic disability?” These distinctions aren’t being made that often and I don’t mean to separate, to say, “Well, there’s those disabled people and those disabled people.” I mean we have to expand our definition from just this one static definition that is still what the culture at large is thinking about.
Allie: Oh, absolutely. And I think that any efforts being made to do that don’t only help people who need that right now, but they help everybody because regardless of where you are in your current health or where your family is in their current health, serious health setbacks are a part of life and changing ability is a part of life. And to create a culture, especially a work culture I think, that acknowledges that will empower people like me to be able to succeed, but will also empower the able-bodied person who I work with, who maybe four years from now ends up… has a car accident and need some extra support. It’s going to support all of us. And I think… I’m thinking a lot about ways that we can really include people more, use more inclusive language because a lot of the asks and the needs… it’s not… they’re not just going to benefit the disability community or the illness community. They can uplift everybody. They can uplift the whole workforce, and the more we can realize that, so as not to further alienate people, I think, the better.
Brianne: Yeah. And I do see more discussion about this, but even just working parents as an easy example of people who need a lot of accommodations. And we don’t call it that for some reason, but like that’s what it is. Yeah. And so for you… cause you just mentioned that you have some different flex jobs, how was the transition from college to work and… cause you described like the interviews and the writing and the book, which I intentionally have not read, but I look forward to reading the future… and how did all of… how did your health play into all of those changes, and what was that transition like for you?
Allie: Yeah. So I actually found out that the book… that I was going to be publishing the book very soon after I graduated, so I had lined up a job. I was gonna be working in marketing in New York City… got an apartment, all the things that I thought I was supposed to do, and when I got news about the book, I had only been working there for about three weeks and already was having a ton of trouble. When you’re taking 15 minute naps in the bathroom, every couple of hours, it should be a red flag for… [laughter]
Brianne: Not everyone’s doing that.
Allie: Yeah, exactly. Turns out not everybody’s doing that! So I quit I about three weeks in, and right away…. so I start… I was nannying. I was doing some online social media work for people. I started getting into this sort of gig work right away because I had to finish writing the manuscript. There was a lot of work to be done, and then, ultimately I did a long tour with the book, after it came out. So my schedule was right away, pretty flexible. Just due to everything that was happening around the book, which I think allowed me to start shifting the way that I was thinking about what my work would look like and what my schedule would work like, or look like. So I was building in time for, you know, a nap in the middle of the day, which I still do every day, or… in and out of doctor’s appointments. That was a part of my regular schedule. I still think I’m… love to be busy and I’m a very active person, and as amazing as the gig world has been for me in terms of building flexibility so that I can take care of my body, it’s also really easy to take on much more than it makes sense to do. And so over the past… I’ve been out of school for just over five years, and over the past five years, there have been times where I’ve taken on much too much, and I get into the sprint/crash routine again. But I think, instead of it happening, sort of every single day, in my day to day, I’ve been able to successfully build in a way that allows me to care for myself, and in a really healthy way, but in the big picture, sometimes I lose sight of that. And I’m still very much learning how to manage that and manage my own expectations for myself in terms of what I deem to be successful or enough, or, the things that are… we have our weird, tied up preconceptions of what that means… that I’m still trying to figure out how to work on. But I think that I got very lucky in that the publication of the book sort of forced me right away, right out of college to reframe what my life was going to look like, sort of separate from illness. And then illness played a huge part in writing the rules of what that was going to look like, but it wasn’t necessarily the determining factor, if that makes sense. And then also just because so much of my work was related to speaking about my experience with Lyme, and talking to other people who are experiencing illness, it’s very top of mind all the time. And it’s been helpful for me, as I mentioned that community piece… I have a tendency to just not want to engage in it, and I don’t think that would necessarily be obvious given my work, but it helps me a lot to engage in it in authentic way for myself. Cause there’s… as wonderful as it is… when you write, when your story becomes something outside of you, you can engage with it in a healthy way, but you can also stop engaging with it past just the thing that you made, or the story that you tell. And I think, there’s still so much more work to be done for it. There will always be work to be done, to understand how to care for myself long-term. And, you know, as I move through different phases of my life, symptoms are different and energy is different. And I need to be consistently checking in with myself, I think we all do, about what we need in order to be truly healthy. And I… whatever that looks like is going to be different at different points… as healthy as we can be, I think. And even in times where my symptoms are terrible, people would disagree with me, but I still try and think of like, “What’s a healthy version of this version of myself?” And that’s gonna look a lot different certain days than other days, but it’s something that I try to think about.
Brianne: Yeah, cause I’ve definitely tried to like take away some of the guilt and negativity. I don’t… I’m not like a big, positive-think person. I’m not very new-age-y for a variety of reasons, but because of the pressure to be productive all the time, and some of the stuff that you’re touching on, it can make it really hard when you are more symptomatic and need to take a full rest day or need a longer nap or whatever. And I feel like a lot of the work that I’m doing right now is just trying to pull the negative feelings back from that. And just be like, “This is rusting. All that it means is that you need rest. You don’t need to feel guilty. You don’t need to feel bad.” I’m not saying I’m perfect at this, but it’s something that I’m really consciously trying to reframe. And it makes a huge difference for what it feels like to be symptomatic, but still okay.
Allie: Yeah. And I’ve noticed, I don’t know if you experience this, but I’ve noticed that when I think about other people. And I see them rest… like taking time to care for themselves or, I see them acknowledging, “Today’s just a really bad symptomatic day, and so that’s just that!” I’m always saying, “Wow, like that person rocks, I love what that person is doing.” And then when it comes time to bring that back to myself, I’m not always as generous. and I think that a lot of it… we all have to combat these, feelings that have really been ingrained in us just because of expectations and society in general. I think your work with ableist language is so important in that this is something that is… it’s sort of burned in the way that we see the world, and we have to be… as we care for other people and sort of shift the way that we think about other people, we should be doing the same for ourselves.
Brianne: Yeah, and we have to, but it’s hard.
Brianne: And speaking of the outside world, I mean obviously talking about Lyme specifically has remained a kind of a part of the work that you do. How… do you find that you need to engage the Lyme controversy very often? Or are you able to kind of… cause I don’t think that it’s what your work is about at all, but I imagine that for some people that’s always going to be an issue. I don’t have a better question than that, but how is that for you?
Allie: Yeah, it’s so frustrating, honestly. Lyme is of course a huge part of my work still. I just worked on another book that came out this past summer that’s about Lyme and the controversy around Lyme in countries around the world. It’s something I’m thinking about all the time. But the heart of my work is really just on the experience of illness in general and the importance of building community and sort of strengthen our own narratives as we talk about it, right? But I find that because of the controversy around Lyme… especially when it comes to conversations with medical professionals, not even in like a patient/practitioner conversation, just in general… it often comes back to Lyme, and to sort of this mainstream medicine versus whatever else… this like Wild West of medicine is what is often being referred to. And what I find upsetting is that that narrative dominates all of the really wonderful, amazing work that people are doing, to speak about their experiences, separate from whatever controversy is happening in the medical world. And I also think that it overvalues the conversations that are happening between doctors and how to treat this or what to call this or whatever… on our actual experience of the world and our actual experience of this disease, and disease in general. And so while I think this controversy is hugely important, and to engage in it is hugely important, and to talk about it is hugely important and, all of the… there’s so much cool research right now, that’s happening about it. It’s just not the focus of my work, and it… I get frustrated when it often circles back to that because what I want to talk about is the life experience of… yes of Lyme, but of all of these conditions. And the way that we think of ourselves as human beings and the way that that identity is sort of shifted by a diagnosis or by longterm health challenge or whatever by disability. And I don’t often get to talk about that. I get to talk about that with people all the time. Especially other patients, but I don’t always get to talk about that with big decision-makers because we so often get sidetracked in this conversation about Lyme. And that… I just want to side note that I think the conversation about Lyme is vitally important, but it’s just interesting how loud it… that often is.
Brianne: Yeah. And like, I don’t want to go further down that rabbit hole necessarily, but that article in The Cut that came out this summer, which I feel like you were mentioned in, so you must know about it. It’s like, one of the things that was hugely missing from that story was like, people are actually sick. If you didn’t know anything about any of this and you read only that article, you might think that the problem is just doctors looking for people to sell expensive treatment to, and that’s so far from what the problem is. Like. It is a huge problem that there are definitely some practitioners who are maybe not super ethical, who are definitely taking advantage of people who are selling them… now I even forget the word that we have, that is a normal word in English for a treatment that is not… snake oil, snake oil salesmen, like 100%. That’s a big part of this problem. But the bigger part of this problem is that people are sick and they can’t get help.
Allie: Debilitatingly so. Yeah, I mean, that experience was an incredibly challenging experience, and brought up. So many old feelings, I actually spoke to the reporter for a long time before that piece came out, we had close to a 45 minute conversation, and after our conversation, I honestly thought that the article was going to be very, very, very different than what it was. And she’s a journalist, she’s doing her thing. She wrote the piece she wanted to write, but I think that… I’ve thought a lot about this in general, as somebody who writes about patient experience as well, when someone shares their story with you, It’s so important to understand the difficulty that comes with that process. And I did not necessarily feel that that was respected or acknowledged, and it brought so much of my old feelings up. It was very triggering, honestly. So personally it was troubling, but it was also so troubling because it didn’t… exactly like you said, it didn’t acknowledge the heart of the problem and, it didn’t allow, I think, to have a conversation about what this actually is and what’s actually happening. But that’s, you know, that’s going to happen. And I think, yeah, the more that we can, continue to have the conversations that matter, and that paint an authentic and true picture, the better we’re going to do. It’s of course sad that that came out in such a well-respected publication and, there’s weight to that, of course. But I think there’s also weight to our own stories and the conversations that we’re having, and I don’t want… I don’t want pieces like that to take away from so much of the progress that’s been made.
Brianne: And I will say just… if anybody who’s listening is not familiar with what we’re talking about, I’ll put links in the thing. But also right after that article came out, an article came out in The Atlantic by Meghan O’Rourke, which did a much better job. Of like, acknowledging these… this very real controversy. And like you say, that conversation does need to happen, but it needs to happen in the context of people are suffering.
Allie: Yes, I think so. I think for the most part too, physicians… they’re not evil, you know, they want to help and they want to help people get better and they want to find the right answers and there’s work being done to find those answers. And I think that’s the conversation that needs to be happening, but that we’re not having, because it’s not as sexy or it’s not as dramatic or…. There’s amazing research being done that is helping to figure out why people are so sick and why they’re staying so sick and what can be done about it. And that’s the hope, right? Is that especially as the number of cases is going up every year, we have to figure out a better way to care for people, and help people get better faster because, at the rate that people are becoming completely debilitated by tick-borne illness, it’s not a bright future, I think for those who are affected by it, but for the medical world either. Because we need to figure out a better way to take care of people who are infected and dealing with these conditions.
Brianne: Yeah, and I think like… on top of that, I agree. I think doctors want to help people. I think one of the reasons that the standard of care across chronic illness is so bad right now is that in a lot of cases, doctors don’t know how to help, and it just creates like a freeze response. And the whole system doesn’t give them time to research and do… like there’s so much more, and we don’t need to have a huge systemic breakdown, but like, yeah, this problem is building right now, pretty rapidly. And it’s breaking systems like. It’s a problem.
Allie: And I think that the more that we can talk about solutions, and the things that are working, that’s what I’m interested in. Rather than… there’s all… there’s so much negativity and there’s so much, dismissal happening already, both inside and outside of the medical world. It does not feel valuable to me to focus there when there is so much positive work being done, that… those are the stories that I want to hear from in the mainstream media.
Brianne: Yeah. And I think this is a good thing that Meghan O’Rourke is doing, but this is also a good thing that… this is the reason that these stories matter is that people are finding… maybe not getting better, like maybe not a full remission, but these are stories about people who are figuring out how to navigate this and cobble together their own treatment plans. And like keep living and… against the backdrop of… now, like Lyme ends up being a punchline in a lot of stuff right now… as like a fake disease punchline in a way that I think chronic fatigue syndrome used to and M.E. isn’t as much anymore.
Allie: And I think that this has happened with a lot of diagnoses, and I think… I’m hopeful that we’ll look back on this time period with a lot more acceptance and understanding, hopefully not too far in the future. But it breaks my heart for all of us who find ourselves in the middle of it and in this moment of dismissal and lack of belief, and we deserve to be cared for better than we have been. And I hope that in the future, people won’t have to go through the stuff that we go through. And I look to that. And I think about that every day, but it doesn’t make it any better for people who are dealing with it right now.
Brianne: Yeah, totally. So back in your own life, are we, we’re more or less caught up to the present in terms of…
Allie: Yeah, pretty much. Yeah. The last few years have been fairly consistent. I’m doing a lot of work, still with Suffering the Silence. My friend, Erica and I, started the non-profit a few years ago, and have been really committed to telling stories of illness and disability through different kinds of media. So we do storytelling nights. We do retreats. We have a documentary series coming out in January called Trust Me, I’m Sick, and yeah, it’s really fun. And I think people are all the time like, “Oh, this work is so sad.” And it’s really not sad at all because there’s so much incredible, strength and, bravery and sadness and grief and all of the above that the whole life experience, I think, ends up in a lot of the stories that we hear and the stories that we get to tell. And I feel so fortunate to be in a place where I’m healthy enough that I can help to get those stories out into the universe. And my health is not perfect, but it is so much better than it has been in the past. And I use the energy that I have, I hope, to move towards a world where we feel safer to be able to talk about the things that impact us every day and make us who we are. And I hope that… I hope that someday people won’t have to feel the immense fear and sort of self-hatred that I experienced for such a long time because of my experience with illness. And it has shaped so much of my life, and I’m not happy that that happened. I am the person who I am because that happened, but I hope that one day people will feel safe enough to articulate their stories and articulate their experiences without that shame or stigma because that stigma did so much damage. And it didn’t have to. So that’s sort of where my focus is these days in terms of work.
Brianne: Yeah. And I obviously love that. And I’m excited about those exact things. We’ve covered all kinds of things. Is there anything about chronic illness or the storytelling about chronic illness that’s been on your mind that somehow we haven’t gotten to?
Allie: Well, I don’t know. This has been a wonderful conversation. I’m very grateful for the time and for the opportunity to get to talk about it. It’s always, it’s always special for me to be able to recount it because there were just so… it was a long time before I was able to do it. And I’m always grateful for safe spaces to talk about it, so thank you for creating that.
Brianne: Yeah, thank you so much for taking the time and the energy and the everything to share with me, because I know that these conversations are not free.
Thank you for listening to episode 68 of No End In Sight!
You can find Allie on instagram and twitter @alliecashel and you can find me on instagram and twitter @bennessb.
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Thanks for listening.