Olivia Spring talks CFS/ME, lyme disease, the role of mental health in chronic illness, and navigating school while sick. Plus, she shares her vision for the forthcoming SICK Magazine.
Listen on: Apple Podcasts | Google Podcasts | Spotify | Stitcher | RSS
Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Before we start, I have a very exciting podcast update. Since I’ve been super behind on transcripts for quite a while now, I’ve decided to start a patreon so that I can hire somebody to help me. If you’ve been enjoying this show and you have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. I don’t have any fun perks set up yet, but once I figure that out I’ll make sure that early subscribers don’t miss them. Plus, if you have any ideas for fun perks, please send them my way! Right now I’m thinking about the usual stickers, pins or tshirts, but I’m hoping to get a little more creative soon.
Today I’m talking talking to Olivia Spring about ME, lyme disease, and navigating all levels of school with a chronic illness. Olivia is the editor of the forthcoming SICK Magazine, which you’ll hear more about later during our conversation.
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.
[guitar riff]
Brianne: So hello!
Olivia: Hello.
Brianne: I like to start by asking people, how was your health as a kid?
Olivia: So I was pretty healthy from what I remember. I have horrible memory, so I don’t really know, but I got sick when I was 11, so I do kind of still consider myself a kid at that age.
Brianne: Yeah. Totally.
Olivia: So before that, it was…. I was fine. I can’t remember anything major. I broke my arm a couple of times which ia normal.
Brianne: Yeah, kid stuff.
Olivia: But yeah, I was generally healthy. I was really athletic, really into school. I really enjoyed school. I loved reading and writing. I would always ask my teachers for more homework. I was really into school, and played soccer very competitively since I was eight years old. Yeah. And then just woke up one day when I was 11 and just felt very different, just like things were off in my body.
Brianne: Yeah. I mean, obviously an 11 year old will have probably different language than you might have for it now, but what did that feel like? How did you feel that day? It sounds like.
Olivia: I remember waking up feeling really exhausted and just kind of groggy, I guess. Just feeling like, “Hmm, I don’t feel like my usual self today that’s up and ready to go to school and to have a normal day.” And I remember saying to my mom, I just didn’t really feel that well, and so I just stayed home that day. I think that was a Friday, cause then I remember the weekend on Sunday, I was… I think I was in long Island or Queens for a soccer tournament. I think it was my brother’s soccer tournament and my mom was asking how I was, if I was feeling better for school tomorrow, and I just was kind of like, “Not really, no. I don’t think I feel much better than I did.” It wasn’t like I was in… couldn’t get out of bed. It was just feeling like there was something up in my body and I wasn’t really… it wasn’t clear. It wasn’t, “It’s a cold or a flu or a specific symptom.” It was just kind of like a general fatigue. It did feel a bit like a cold.
Brianne: Like a full-body ache sort of thing?
Olivia: Yeah. And it just didn’t really go away. And I think Monday we had the New York state standardized tests that day. And my mom said, “If you’re not feeling a hundred percent don’t go cause you’re not going to do well on the test.” So then I stayed home that day, and I think by then I was kind of feeling like, “Oh, I could maybe get to school.” But I didn’t feel 100%, and then it just kind of carried on that way. I went to the, to my pediatrician and he just said, “You just have a bug. Don’t worry.”
Brianne: Sure. Good news?
Olivia: I went back a few weeks later, still not feeling better, did some tests, “You’re fine. It’s just a bug. Drink some water.”
Brianne: Do you know now what they might’ve been looking for? I assume any 11 year old that shows up with vaguely cold and flu-like symptoms, they’re probably just checking for typical viruses or whatever.
Olivia: Yeah. The only thing I remember them testing for is mono and thinking… when they said that, and my mom thinking “It probably is mono. It sounds like that’s what you have.” I remember people at school, when I didn’t know what I had and I was going home early a lot of the time, spending a lot of time in the office people would just… when I didn’t know what I had, they would just say, “Oh, she has mono. She just needs to go home and it’ll be gone in a few weeks.” And yeah, it was really difficult at that time to not know I had, and to have people constantly asking me and say… then when you don’t know, they ask, “Well, what do you feel like? What are your symptoms?” And that’s not really something you want to be talking about all the time when you’re not even sure what it really feels like. It was very, very confusing.
Brianne: And also, one interesting thing so me is once you start to learn stuff about what’s happening in your body, you interpret your symptoms differently. So when you have no idea what’s wrong, you’re just like, “Everything feels bad.” And then sometimes you can kind of get more detail and you’re like, “Oh, my lymph nodes are swollen, and I have nerve pain.” Those are just my things. So I’m just telling you my things, but like I didn’t have the language to have even said that much earlier on. And especially as an 11 year old, who I’m sure is not super embedded in that stuff.
Olivia: Yeah, it’s weird. I really don’t remember that much, and that kind of scares me now to look back, and I can’t even remember what I did all those days where I wasn’t in school or I was going home early. It’s just this weird large memory of times.
Brianne: Yeah. Yeah.
Olivia: And it’s very strange.
Brianne: Yeah. When I had mono in high school, which is not quite the same, but this is still pre streaming television. So I think I watched most of the Sopranos on VHS from Blockbuster. The things that you could do to try to make time pass when your body and brain weren’t working were pretty different even compared to now.
Olivia: I remember making a Tumblr, and that really was an amazing outlet for me, to have that online community. I would spend a lot of time on Tumblr and ended up making multiple blogs. And that’s where I started to write and see it as an outlet for writing and creativity. But yeah, I remember making a Facebook one day, I think I was 13 I was like, “Mom, I’m just so bored all the time. I don’t even want a Facebook, but it would just be fun cause I have literally nothing to do.” And that was an activity to upload all these photos, and yeah, I tried to do a lot of work from home, but that was just difficult as well. Teachers weren’t very accommodating and schools in general are really, really, really shitty.
Brianne: Yeah. Yeah. I was really lucky. I went to, a self-paced high school, which I don’t think… I don’t know how many there are, but I don’t think that there’s more than five total ever. And so it’s a completely unique environment where if you are out of school for a month straight, the curriculum is actually designed to be able to catch up later. And that’s. Everybody needs that, that is living with chronic illness. I think it’s bonkers. Ooh, a really loud thing just went by. I’m sorry. Okay. So I want to talk about both of these things. So it’s kind of through… if you were 11 probably middle school, right?
Olivia: Yeah sixth grade.
Brianne: So middle school and high school. I would love to talk more about… was there more medical investigation? Did you learn anything in that time? And then also… the kind of online… what were you up to, stuff?
Olivia: Yeah. so I, I was diagnosed with chronic fatigue syndrome, and I felt… I remember thinking it made a lot of sense, and I felt like this could be good. I took it as a positive. It felt really nice to have a diagnosis, but it also felt really… I felt like the words “chronic fatigue” aren’t… don’t come across very seriously, and that was annoying. Obviously now people are using ME, which is great. Even if people don’t know what it means. That’s alright. Just have something a little more like, “I’m not just tired.” You know what I mean? And it’s not tired. It’s fatigue. It’s different. It’s worse.
Brianne: Right.
Olivia: But yeah, I was diagnosed with that, and then… I’m not even sure when, but I was diagnosed with Lyme disease a year and a half after I first got sick. Which I had been tested for that from my pediatrician came back negative, lots of… I think my parents’ friends were saying, “The tests aren’t always reliable. Maybe look for a different doctor.” I ended up seeing this specialist in New Jersey. Looking back on it, she was, I mean, even in the moment, it was very strange. It was just like a… felt like an abandoned house in the middle of nowhere in New Jersey with just stacks and stacks of paperwork. And it didn’t seem legitimate, but she really believed me and really thought I had Lyme. And I think she did the, what’s the one… the better Lyme test called?
Brianne: The American one is IGeneX typically.
Olivia: Yes. Yeah.
Brianne: Do you know what kind of practitioner she was?
Olivia: I think she’s an infectious disease specialist, but I’m not sure.
Brianne: Yeah. It could be. Cause it’s such a range of like, MDs who do this, and then also naturopaths who do this in States where that’s possible, and then like, miscellaneous, other people. It’s an interesting overlap.
Olivia: She felt very miscellaneous.
Brianne: Yeah.
Olivia: But yeah, so she diagnosed me, and basically explained that it was the same test that my pediatrician had done as well, but that I was positive in New Jersey and negative in New York because of where the cutoff was. It was different in every state. That was incredibly confusing.
Brianne: Yeah. It’s still confusing.
Olivia: When I drive 10 minutes I’m still in the same body. But yeah, God, my memory is so bad. I don’t… I mean, I remember going on medication. I had a pick line for a few months.
Brianne: So this would be still in middle school?
Olivia: Yes. This was…
Brianne: It doesn’t matter the precise… but like 13ish?
Olivia: Eighth grade and ninth grade. I’d say 13 to 15, I probably saw her. I was on like 40 pills a day. I was on doxycycline, lots of supplements, and then did the pick line, because I wouldn’t get any better. She would actually say that my test result… that some of the stuff was improving, but I never felt… it’s difficult because in hindsight, day to day you don’t feel better, but I was able to slowly start going to school more, so something was changing. But I don’t want to say it was this treatment. It’s not that clear and easy to to say.
Brianne: Yeah, it’s so hard to tell. It’s so hard to tell if it’s just a normal fluctuation, because there is so much fluctuation, or if it’s something really working. I struggle with that now for sure.
Olivia: Yeah. Yeah. I switched middle schools twice, so I went to sixth grade went to one school, seventh grade another school, eighth grade another school, and that was really difficult. Sixth grade, they basically just hated me and were so unsupportive and totally wanted me to leave because they couldn’t handle trying to accommodate.
Brianne: Yeah. Your truancy?
Olivia: And then I switched to another middle school, which was really, really great to start with, and kind of ended up being the same thing. I was on crutches for a while in seventh grade, and that was a particularly traumatizing experience of kids, other 12, 13 year olds literally saying… telling me I was faking it, and that just being a really bizarre experience. Yeah. If I had a cast my foot, everyone would have so much sympathy, but the second it’s not visible.
Brianne: Yeah.
Olivia: One of my teachers even questioned me and she said, well, if both of your legs are so weak, how do you decide which one to put the most pressure on?
Brianne: You’re like, “What kind of a question is that? Who is that helping?”
Olivia: Yeah. It was really, really difficult there. Most memories are crying in school or going to the nurse saying, “I have this… I have chronic fatigue. And, you know, I’m just trying to not go into too much detail and getting the classic, “But you look fine. You look super well.”
Brianne: Yeah.
Olivia: So my mom was encouraging me to look at another school and I just thought, “Oh my God, I cannot transfer again. I don’t want to go through this again.” But I’m so, so glad she pushed me to do it cause they ended up going to a really, really great school that I stayed at through high school. Even though high school was horrible.
Brianne: Just in general?
Olivia: Yeah. In hindsight, I’m so glad that it was horrible where it was. I was also homeschooled for a bit in seventh grade. Well home… it was through the DOE, so they sent a really lovely teacher to come round three hours every day. That was in the evenings.
Brianne: Oh, interesting.
Olivia: Which is really helpful for me because the evenings I was… was the best symptom wise for me. Again, how many months I went. My mom wasn’t working at the time. We were just hanging out all day, every day, I guess, and I don’t remember what we did.
Brianne: Yeah so much time passed.
Olivia: Yes. So much time. In eighth grade, I was able to start going to school. I missed probably average one day a week, which was a big improvement for me. I had some really amazing teachers that helped a lot, made good friends for the first time in the past couple of years at school.
Brianne: Yeah. And that must make a huge difference on the mental health side of things.
Olivia: Yeah. I remember in seventh grade, I didn’t go to school for a few months. One day I woke up at like 7:00 AM just really randomly and I was like, “I feel great.” I was so, so weird. I didn’t know what was going on and I just felt like I have to go to school cause I’m feeling well enough, so I have to go to school. Even though part of me was like, “But you haven’t been in so long, what are you even going to do there? How are you… you’re not even gonna know what’s going on in all the classes.”
Brianne: Yeah.
Olivia: But I was like, “No, I’m well, and I have to go.” And I remember getting there and my friends, not even realizing that I was back or had been gone, it seemed, they just said, “Oh, hi.”
Brianne: Yeah.
Olivia: My teacher’s saying, “Oh, Olivia I didn’t know you were going to be here today.” And just making me feel much more horrible. Like, “Oh wait, we don’t have a seat for you in class.” It’s very…
Brianne: Like, “you don’t belong here anymore.”
Olivia: Yeah. So I think that year was probably… as I’m talking about it now, seems like probably the worst year. But I was also able to play soccer up until ninth grade,
Brianne: and that was during the Lyme treatment?
Olivia: Yeah. Yeah. And again, in hindsight, don’t really know…
Brianne: Yeah, who knows?
Olivia: …how I did that. It was much more important to me than school, so I did have many days where I didn’t go to school and I would go to practice or have a tournament on the weekends and know that I would be missing a couple of days of school. But that was fully what I wanted to do for the rest of my life. That was way more important to me than anything else, and the team I was playing on just felt like my team… that I had been on since I was eight and it was just something… I think because I was so athletic, it was something that I think could have maybe helped me not get worse than I was, cause I was still able to get exercise.
Brianne: Yeah.
Olivia: I think practice in the evenings was good for me as well cause I felt like every morning I’d wake up, feel absolutely horrible. And then most days throughout the day I would just slowly feel a little bit better. I would feel most awake around eight or nine. Yeah. which isn’t ideal really.
Brianne: Yeah.
Olivia: I was able to go run around. It still was hard. I would still pass out on the side of the field and be like, “What am I doing myself?”
Brianne: You’re like, “That was too much.” Yeah. Exercise is so hard because obviously post exertional malaise is totally real and exercise can push people over the edge, but also when you do have the energy and you are able to do something, that feels good, too. And so it’s hard. Which I feel like is exactly what you’re articulating. It felt like the right thing to be doing at the time.
Olivia: Yeah. And I loved it. It was my favorite thing to do. I mean, I developed… I got depressed pretty quickly after I got sick, and obviously I had lots of doctors saying that the illness was depression, but then I would argue back that I didn’t wake up with depression. I woke up with pain, and then because of that experience, I developed depression and anxiety. So yeah, it just felt like something I was able to hold on to. And all the doctors said that it was really good that I was playing and to try to keep it up and yeah. But I had to stop in ninth grade. I had made, I had tried out for a much higher level team. I felt like at that age, if I wanted to pursue this as a career, I really needed to take it more seriously, which was really hard because I loved my team so much and it was just my team. I didn’t want to leave. I went to these trials and I just had crippling anxiety. It was just horrible. I made the team and I didn’t even want to get to play on the team. It was just so terrifying. The girls weren’t particularly welcoming. I just felt like I wasn’t good enough or that I wasn’t wanted. But I knew it was something I had to do. And that quickly I think really took a toll on me mentally. It was really, really hard for me to fit in there and my anxiety. I just got the worst anxiety I think still to this day that I’ve ever experienced was going to those practices and sitting in the car and thinking, “I cannot, I cannot go out there and play. I can’t do it.” I always did and I never… I still feel like I never played the best I could have for that team. I just wasn’t able to because of how much anxiety I had, and the end of that season was when I got my pick line. And so I didn’t play for the end to that season. It was just horrible. And then at the end of that, I was like, “I have to… I have to quit.” It was the hardest decision I think could made was saying “I can’t play anymore.”
Brianne: Yeah.
Olivia: But yeah, emotionally very, very difficult to get that up and something I’m still struggling with. The women’s world cup is on now. Every game I watched just, “It’s not too late. I’m gonna get my first cap for the U S women when I’m 30.”
Brianne: Yeah. You’re like, “Soccer, I’m coming back.” Yeah. That’s so hard.
Olivia: It’s so hard. I also feel like I have really accepted that that’s just not my thing anymore, but it’s still very sad. And to have that what if is what’s the most difficult thing.
Brianne: Yeah. It’s still in there.
Olivia: Yeah. To know that I’ve never given it the full 100% of trying to see if I was good enough to play in college, to see if I can make it professionally. I just wanted to… cause I believed in myself so much and I just wanted to see it, do it. So not having been able to even try is really difficult, and I still identify as a footballer, and I’m not, I haven’t played in years, but I feel like that’s just part of who I am. I still have a drawer of all my soccer clothes.
Brianne: Yeah, no, that’s so relatable though. I think of like, somebody that I talked to… Liz in episode five, I want to say… she was a competitive swimmer, at the college level. D1 athlete. Whatever. And she got sick in between seasons. And so she talks a lot about a lot of this same stuff of being like, “This was my thing and I was into it and I was good at it and I knew what my body could do and then my body couldn’t do it anymore.” And it like… that fight. I don’t know if fight’s the right word, but that’s struggle. It doesn’t go away. And I don’t know if this was your experience on that team, but as you were talking about the anxiety of it, it was just making me think about how I think a lot of athletic culture in general is also about pushing yourself past your limits all the time. And I mean, I’m sure there’s an argument to be made that that’s kind of damaging for everybody, but when you’re chronically ill and don’t have the tools to put that all together, that’s a really fucking ableist message that…
Olivia: Yeah, for sure. You don’t know what your limits are. It’s not… knowing what it felt like to be a healthy athlete and feeling… this feeling of the end of a weekend tournament or whatever, then suddenly I start feeling like that from walking five minutes and then trying to… and then playing again and having that feeling… and then it’s just this feeling isn’t related to just this one trigger anymore.
Brianne: Yeah.
Olivia: So yeah, it was very difficult and, and scary. I remember hearing about people who’ve died from Lyme disease, and I really got it in my head that that’s how bad I was. That I could die from this, and I really needed to be careful and because it felt… that disease felt so unknown and not understood. It’s just, there’s no clear path of, “This is my diagnosis and this is what my life can probably look like.” There wasn’t that clear vision, which was really difficult, but I mean, having… when I got diagnosed, I was so relieved. I was so happy. I felt that my illness was real. I felt like, “Okay, I’m not just this dramatic, whiny obnoxious teenager.” Which I still have to remind myself cause it’s so, so ingrained in me that this is just me being dramatic.
Brianne: Oh man. I feel that’s so hard.
Olivia: It’s so ridiculous, and I get so angry at myself, you know? I’m like, “Come on Olivia. You’re not like, you know that you’re sick.” And then there’s still this part of my brain that’s like, “No, you’re not. Just get out of bed. You can do it.”
Brianne: “Just decide not to be. Stop indulging.” That’s what my inner voice is like. Yeah.
Olivia: Yeah. It’s horrible.
Brianne: It is. Okay. So let’s say… so tell me about after you were working with the New Jersey practitioner. So you had been working with this one person for about two years, it sounds like, on… focused on Lyme, and then what was next to the best of your memory?
Olivia: I think it was towards the end of ninth… I could be so wrong, but she basically cancelled me as a patient.
Brianne: Oh, cool.
Olivia: It was something about wanting to put me on something. Well, backtrack a little bit, I was given some, I think it was just water… cause I wasn’t drinking enough water that I had to do through my pick line once a day or something.
Brianne: Yeah. Saline or something?
Olivia: Yeah, saline. And I had a really bad experience with… I had air bubbles in the line, and was suffocating. And I didn’t know I was suffocating. It was just this bizarre sensation in my chest and throat. And I was just like, “This is bad. This is not a safe.” And we didn’t realize until after the fact what had actually happened. I had another experience where I tried to do the pick line on my own, and it just filled up with blood. Just because I hadn’t held it up high enough or whatever, and I’m just freaking out. “I’m going to bleed to death.” I was alone with my brother and I just felt really let down by this doctor for not really explaining enough to me and just kind of letting me kind of figure it out. I mean, she would tell me what to do, but not… Clearly not well enough.
Brianne: Yeah. If this stuff was happening, it would have been great to have had more kind of coaching of like, “Here’s some of the ways that… without being dramatic, here are some of the things that can go wrong and here’s what you could do about them.” Yeah.
Olivia: Yeah. So those are really scary experiences, and lost a lot of trust in her. So I think it was something along the lines of her wanting me to try a new treatment or to go on a diet or something that I didn’t want to do. And so she said, “If you’re not gonna listen to me, then I’m no longer your doctor.”
Brianne: Yeah.
Olivia: Just kind of in one email like that. And I don’t think I saw anyone… Well in 10th grade, I started seeing a therapist. I’d seen a few therapists before that were just not helpful or understanding or didn’t seem to care about me at all whatsoever. But I started seeing someone new, and I still see her now. And she, I think since I saw her, I really was able to learn how to deal with things that were more in my control and just kind of live… I was lucky enough to be in a place where I could just live with the symptoms and still be able to do enough.
Brianne: Yeah, like it was a life.
Olivia: Yeah. I was able to go to school, for the most part. Enough to graduate and do my homework and all that stuff. And I really just focused on anxiety and my depression and “What I can do to deal with this?” things. My anxiety would get had gotten really bad in high school. I had a phobia of eating in public. I would… I remember just locking myself in bathrooms during lunch and just like shoving a slice of pizza down my throat like it was this crime. I became really, really terrified of the subway. My brother had to take me to school for a year, and then my dad would have to drive me to school for a year. Sometimes after school I would just freak out at the thought of it and have to wait for someone to come get me.
Brianne: Yeah.
Olivia: And those are really difficult things to deal with. Living in New York City and just having all this chaos constantly around you and times when you’ve… when I’ve had to go home early, and the woman in the office is… I remember one time I had to go home early, and the office lady says, “What is your problem, Olivia? I have chronic Lyme disease too, and I’m here every day.”
Brianne: “Cool! That’s super helpful. Thank you.” Jeez.
Olivia: And I just remember being on the subway home that afternoon, just sobbing.
Brianne: Yeah.
Olivia: And then it being worse because everyone on the train was staring at me. I had to go… I had to transfer trains, and it just… everything about it just made the situation so much worse.
Brianne: I was just gonna say, do you think that some of that was also maybe a sensory overload issue? I know… yeah, not to say… I think mental health and physical health are so connected, but…
Olivia: For sure.
Brianne: I know sometimes when I’m not feeling well, being in a crowded environment is… it’s just so overwhelming to even process. And so worrying about that can really amp it up. I don’t know.
Olivia: Definitely. I mean, I wonder a lot about what growing up in New York City… what kind of effect that has had on me. I lived in London for three years, and now I live in a really, really small city, and since I moved here this September, I have felt generally better. And it’s one of those things again, that’s hard to really pinpoint.
Brianne: Yeah.
Olivia: But, yeah, I wonder. I think air pollution, noise pollution, this type of thing, even just the energy of New York, I just find really negative, and here it’s more like people actually enjoying their walk from point A to point B, not sprinting to go to a meeting that they don’t want to go to and buy some overpriced juice.
Brianne: Yeah. There’s not tension hanging everywhere. Yeah. I live in a village now, and I relate to that also. Okay. So that was high school, basically, and if there was more, go ahead. I don’t want to cut you off, but…
Olivia: I mean, God, high school, I really, it was really, really, really, really horrible for me. I was very suicidal at points. I feel like the only thing that really kept me going was my family. I’m super close with my parents and my brother, and it’s just having… that was really my only positive for a long time was my family, and I’m so grateful for them. Especially for my mom, for taking me to all those doctor’s appointments when I first got sick and advocating for me and not just being another voice saying, “Get over it and go to school.”
Brianne: Yeah. Not saying it’s all in your head.
Olivia: Yeah.
Brianne: That’s powerful.
Olivia: But somehow I was able to get through it. I really wanted to drop out many times. I was always searching for some alternative thing I could do, a different school I could go to, a semester abroad. Could I move in with my aunt in Maine, my aunt in London? Constantly trying to think of something else cause I just felt like every day was so unbearable. And it was just so hard on my body. I mean, everything was… I used to really want to go into education reform just cause I think regardless of having a disability or chronic illness, I think the environment of education these days is extremely harmful and unhealthy and just puts so much pressure on young people that are just trying to figure out who they are and trying to have relationships and hobbies. And I just don’t think there’s enough space for them to actually do that. And it’s, yeah, really, really horrible. But when I was about… I think I was a sophomore. I got it in my head that I was going to go to college abroad and that was just my thing since then. That was the what really made me able to go to school every day and have that in the back of my mind that I’m going to get the grades I need to go to this school, and when I get there, that will be my life. It won’t be… you know. I just hated New York. I had to get out.
Brianne: Yeah.
Olivia: So I don’t think I saw any other.doctor in high school.
Brianne: Yeah. Sometimes also you just don’t. Your like, “Honestly, what are they going to do? I’m just trying to survive and have other interests besides telling my story to doctors and then trying their protocol over and over again.” Sometimes you need a break from that. It’s a lot.
Olivia: Yeah. And I really felt that prioritizing therapy for me, obviously, specifically, was a good choice for me and to just focus on taking things one day at a time and things that I can handle. Giving myself permission to do what I needed to do and not feel guilty about it. Every day I would stay home sick, I was just filled with so much guilt that I couldn’t actually have the day off that I needed. And trying to learn how to force yourself to have those days where it’s like, “It’s fine. I’m not in school. School really doesn’t fucking matter anyway, so let’s just take this day.”
Brianne: Yeah just take care of yourself. Don’t feel bad about it. That’s really hard. Everyone needs to learn that.
Olivia: Yeah. I got into the school that I really wanted to go to in London, and senior year was just counting down. I couldn’t believe that I was a senior. I really, really could not visualize myself graduating. It seemed like something that just wouldn’t happen. I was sure it wouldn’t happen, even though I knew it was going to happen.
Brianne: Right.
Olivia: And that was really one of the most amazing days. I think it probably will be for a long time. It’s just my high school graduation, what an achievement!
Brianne: You got there!
Olivia: Yeah. And then I moved to London in… almost… will be four years ago, this September. And my health was probably the best it had been since I got sick for that first year of university. And I think… I’m so interested in the connection between mental health and physical health and what your brain can do. And I do think there’s a lot to be said about how I so strongly visualized what this year would be like and thought about it for so long. And it was almost just like I executed it perfectly. It was exactly what I thought it would be, and I was so happy. I went on a holiday by myself, flew to Berlin for a few days, stayed with some strangers, flew to Paris, and I just felt like, “This is who I am now. These are the things I’m going to be choosing to do and I’m able to do them. And I’ve made this new life for myself, and I don’t have to carry around any of the things that I dealt with in New York.” And it was really great the end of that year wasn’t so great. And it felt kind of a similar… high school, middle school vibe of doing okay for some time and then crashing, and then going to my summer house in Maine and just being in bed and sleeping a lot and kind of like recharging. And then I would go back to school and be okay for maybe three, four months and then I would unwind a bit, and then it would happen again. And it just kind of felt like that really, and I went back to Maine for the summer and just totally crashed. And I was just so unbelievably fatigued, sleeping like 15 hours, just could not get out of bed. And that’s when I was like, “I really feel like I need to see someone again.” That it became… when it comes to a point, where I felt like I couldn’t do the things I needed to do.
Brianne: Yeah.
Olivia: …to feel like I was living, that I need to see what can be done, but it was just so… it’s so hard to find a doctor.
Brianne: Yeah. Yeah. Somebody who…
Olivia: It’s so sad.
Brianne: Yeah. Somebody who 1.) Is able to listen and not automatically say, “Oh, this is just your mental health. This is all mental health.” And 2.) Someone who is willing to say that they don’t know, and they’ll do the research or that they can direct you to people. God. Yeah. Yes. Yes. And were you looking in the States or were you looking for a doctor in the UK?
Olivia: So I was looking in the States, cause I was in Maine. I was hoping I could see someone while I was still in Maine. I had a few phone calls with… calling the local doctor explaining my situation or I called a few people who I knew were infectious disease specialists and they were saying, “Oh well, they don’t have any availability until… for two years.” And I’m just crying down the phone to them, like, “What am I supposed to do? Just tell me what to do to get seen by someone. I’m losing my life. Something has to be done.” And they just have no answers. I was recommended to see, I think she’s a naturopath… no, I think she’s a homeopath. And I went to her office by myself, and I felt a bit… I don’t know what the right word is for someone that you don’t necessarily trust, that maybe it’s a bit sketchy in their practice, you think. But then fully believes you, listens to you and then tells you… we did these very odd tests for all these co-infections, but they were all co-infections that I had previously tested positive for and she didn’t know, and I just was like, “Well, of course. This is… she’s so right. This test is so amazing.” I just fully believed it.
Brianne: You feel really validated.
Olivia: So validated. And then I get into this mindset, which I always feel like before I started treatment of like almost the… it’s like a sport. “I am going all out. I’m going in on this. My whole life is going to change and I’m going to like kill it. It’s going to be great. It’s just going to… I’m going to be just full of all this energy devoted to getting rid of Lyme disease.” And that’s not realistic.
Brianne: And like, “It’s worth it for me to put everything else in my life on hold. To like put all my energy into this thing because it’ll pay off. So every time I’m just going to completely stop my life.”
Olivia: Yeah,
Brianne: Yeah. Yes. I’m with you.
Olivia: Yeah. So I went to another appointment with her, talked about like… we did some blood work and stuff, and then talked about what the treatment would be, and it was a bunch of different vials for each… for the Lyme, all the co-infections under the tongue. It tasted horrible, and then a bunch of pills on top of that. And then the diet, it wasn’t even, you know, gluten-free, sugar-free, dairy-free. It was… she gave me a single piece of paper with all the things that I could eat on it, which was nothing. And the only thing I could drink was water. I couldn’t even have tea or seltzer, it was literally just water.
Brianne: That would be really… that’s so depriving. The feeling of deprivation with these diets can be a huge fucking issue. Yeah.
Olivia: I so I got, again, feeling pretty like, “I can do this.” I drove home with my mom and just cried the whole way. And in my head was like, “I told myself this was the last treatment I would try, that this was my, my last turn at getting better.” My mom did the diet with me, so we were on our own in Maine, just eating carrots basically.
Brianne: Yeah. Carrots and water.
Olivia: And God… and went back to London and my second year of university still… which was more difficult because I was living with three housemates who could eat what they wanted and going out to the pub where people would drink beer that’s full of gluten. But I did really well, and I was really proud of myself for sticking with it and felt like… just was trying to really visualize myself getting better. But I didn’t, and then my doctor would just not respond to my emails. She would say, “Let’s set up a Skype.” And I would say, “Okay, I’m free this day.” And then nothing.
Brianne: Yeah.
Olivia: Send her a followup email. “I’m running out of this. Should I get more?” No response. And then just kind of slowly, again, that feeling of, “The doctor doesn’t actually care about my health. Are they just doing this to make money? Do they even believe in their treatment?” I mean, this woman had told me she was 100% sure that I would get better from her treatment. That everyone she’s treated with Lyme has gotten better.
Brianne: Yeah.
Olivia: And you want to believe that obviously.
Brianne: And I do think that some, at least of these people do believe it, but in this extremely busted way of, they believe that the protocol works, and so whenever the protocol doesn’t work, it must be the patient. I think that some, at least some practitioners, that’s where the breakdown is, which is just as bad. That’s just as bad as misrepresenting how helpful you think you are.
Olivia: Yeah, so I don’t… I just stopped seeing her. That was a pretty rough year, just for other reasons, not health-related as well, but I was able to be okay generally.
Brianne: Yeah.
Olivia: Yeah, I did have really good accommodations at university. My tutor was really, really helpful from the first time I met her. I just explained to her what my situation was, and she just got me the accommodations I needed for extensions on anything, and if I wasn’t able to make it, there was no guilt or anything, which was really refreshing. So I’m really glad I was able to have that positive experience in education of people willing to accommodate and… not made to feel like you’re asking for too much. Yeah. And then third year… when? God, this memory.
Brianne: Yeah, I hear you. It all kind of bleeds together, even when it’s really recent.
Olivia: I had started seeing another person in London, who I had interviewed Dr. Richard Horowitz in third year for… I studied journalism, so it was a feature I was doing on Lyme disease. And our conversation was really interesting, and I would… I told him about previous treatments I had done. And one of the interesting things he said about people who just aren’t able to get better, it could be some emotional trauma or something. Your body’s programmed to not be well. And I really kind of felt like that could be something that I’ve been dealing with because I don’t remember what it’s like to really be well. Even when I have good days, it’s still… it’s just not the same because it’s just a day. And it’s… I still don’t ever feel like I have a day where I fully have no symptoms. It’s always there in one way or another that I’m so used to, I might not even realize.
Brianne: Yeah.
Olivia: And another doctor I interviewed in London said that he followed Horowitz’s practice, and I really believed in his practice from the research I’d done and his first book, I think it was, that I read. I just felt like it made sense to me. It felt legitimate and refreshing and coming from like a scientific place that was legit. So I decided to see the person who said he followed that practice. I ended up not actually seeing him, but someone else at his practice, which is actually at London clinic of nutrition, and she is a naturopath. And again, the exact same experience of, “Do I trust this woman? Oh, but she totally believes me and promises that I’ll be well and is full of all these ideas and you just… okay, I can do this again. Here we go back to gluten-free, sugar-free, dairy-free,” and I was all for it. Like, “I can do this. I’m going to feel so amazing. I’m just going to be full of vegetables and it’s going to feel great.”
Brianne: Yeah.
Olivia: Obviously it doesn’t because I lost weight and you’re not eating what your body is saying, “I want to eat that.” And how is that healthy to just constantly not give your body what it clearly needs?
Brianne: Yeah.
Olivia: So that was really harmful for me and I was just more tired because I wasn’t eating.
Brianne: Yeah.
Olivia: And she would tell me how green tea, if I was hungry.
Brianne: That’s, yeah, that’s super problematic.
Olivia: Dangerous.
Brianne: I’m all for people experimenting with elimination diets because they can make a big difference when you figure out stuff that is a problem. But like, “Just don’t eat, and drink tea.” I understand that’s not a direct translation, but that’s super problematic, and there’s so much difficulty around eating and culture and all this stuff that the wellness industry diets can really exacerbate, and that’s scary. It’s scary when practitioners don’t think about that for some reason.
Olivia: It is really scary. I recently read a book called Just Eat It, and it was all about intuitive eating, and I really identify with a lot of stuff in there. It really opened my eyes to, obviously personal to me of, how diets I feel were much more harmful. I mean, I didn’t have anything good, I don’t think. I didn’t feel any better whatsoever, and it was just… I still haven’t gained the weight back, even though I’ve been eating normally for almost a year. So it’s just… I’m never going to do that again.
Brianne: Yeah, that was not for you. Definitely.
Olivia: Not for me. But I don’t even… I can’t even remember what I did with this woman.
Brianne: Yeah. Probably other…
Olivia: I was on supplements for sure and drops and stuff, and just the same thing of no improvement and just so much… the treatment is so much effort, even though it seems like small things like, “Oh, you just have to tip this vial under your tongue.”
Brianne: But like, away from food, four times a day. Yeah.
Olivia: Yeah. And it’s just, you know, “Take these ones before you eat, these ones while you eat, these ones after you eat. Don’t mix this with that, have only this for breakfast.” It’s just a lot to think about, a lot to deal with when you’re trying to just navigate a fun, social, young person’s life.
Brianne: Yeah.
Olivia: And I had a really weird experience doing this body scan with her that I still don’t really understand what it was. So it was like body scan basically, but I’m scanned by their hands.
Brianne: Hovering over you?
Olivia: They would touch one part of my body, and then she would hold hands with the other person, whose eyes would be closed, and they would test the strength in their hands based on where they were touching on my body. And sometimes they would be really firm, and other times they would be super weak, and they would then be like, “Oh, it’s definitely Borrelia right here.” And that’s really intense, to have an experience where people are so confident, they know what’s wrong, but also a lot of it made sense. They were saying that there was something in my jaw, and they couldn’t figure out what it was. And when I said I had gotten my wisdom teeth out, they… it was this aha moment and they were like, “You have Babesia trapped in your wisdom teeth, and that’s why you can’t get better. Your medication does not… cannot reach your brain, and your brain doesn’t know what’s going on.” So, I mean, that’s a lot of information at once. That sounds ridiculous, but then again, it sounded at the time, totally reasonable.
Brianne: Yeah, no, I hear that.
Olivia: And you think, “Oh, okay, this is the reason why none of my treatments have worked, and now that I know this, we can fix this and then I can get better.” And she prescribed me all this tapping, which I had never heard of before. That seemed very strange to me, but the more I did research on it, the more I was like on board with it and felt like, “Why not?” To basically almost anything.
Brianne: Yeah. And as far as things to try go, tapping… I mean, it takes time, but it’s like, you know, it’s not invasive.
Olivia: It’s free.
Brianne: Yeah. It’s free.
Olivia: So yeah, I did a few more months with her. I did a vitamin C IV one time, didn’t really feel much from that.
Brianne: Yeah.
Olivia: And then I would email her… same thing that happened with my other doctor. I’d say, “I’m running out of this. Should I order more?” And she would say, “Oh, well, you need to schedule an appointment to go over these things with me.” And I was like, “Well, we’re not due for an appointment. I don’t want to pay a large amount of money just to ask if I should order more.” A few different things like that happened. “We need to have an appointment, let’s do this day.” And then she would just never get back to me. And I’m like, “Well, you know, I’m suddenly out of my medication now.” I don’t have any more. I don’t know if there’s going to be side effects from suddenly stopping. Everything is completely unclear. And then all the trust is lost and then it’s over. And that was my last experience, for treatment.
Brianne: Yeah.
Olivia: So, yeah, it’s. It’s frustrating. I also did acupuncture in third year. And I did have a positive experience with that. But again, nothing super impactful where I felt like, “This is making my quality of life so much better.” It’s just little things. Yeah. And I do kind of believe that you have to do… or for me, at least, do all these little things at once to really feel something. And that costs a lot of money and time and commitment and energy.
Brianne: Yeah.
Olivia: So it’s just not doable really for everyone.
Brianne: Yeah. Or not doable all the time. And yeah, it costs so much time and energy to throw so many things at it. And you can’t… and then when you’re throwing lots of things at it, you can’t actually tell which ones are helping. So if you want to save time or energy, you’re not like, “Oh, well this one of these things is the one that’s the dud. So I’ll just cut that out.”
Olivia: One thing that did really help me was CBD oil. I had an amazing reaction to it. It was so clear. It was… I took it, and I just had energy, and I could walk and walk and walk, and I felt like I was not high, obviously, but I was in this higher place almost where everything was just felt clearer and better. And I was so happy and felt like this could really change my life, but that wore off.
Brianne: It’s not as effective now?
Olivia: It’s not effective at all, and I had spoken to some people who make their own CBD oil and was asking about the one I took, cause it’s… I don’t know if this is how you say it. It’s like liposomes and they interact with like…
Brianne: Like a liposomal… whatever? Yeah.
Olivia: Yeah. Like they’re supposed to more efficiently transport it throughout your body.
Brianne: Yeah.
Olivia: And these people I spoke to said that they know people where that wears off, and that it’s better to just take the straight CBD with nothing in it. So I started taking that recently and haven’t felt anything.
Brianne: Yeah.
Olivia: So that’s really, it’s disappointing to feel… you know, have a little taste of this is something that works, and then just kind of lose that.
Brianne: Yeah, I bet.
Olivia: So, yeah. Right now I’m not… since I’m… I guess for the past year, I haven’t done anything. I’ve been pretty good.
Brianne: Yeah. Like stable?
Olivia: Yeah. I’ve been working part time, and that’s been pretty doable for me.
Brianne: Do you go somewhere to work or do you work from home?
Olivia: Yeah, I work at a pub. I was trying… I really wanted to have a remote job, and I just couldn’t find anything.
Brianne: Yeah, it’s hard.
Olivia: I just felt like, “Oh, surely I’ll get a remote writing job.” I have a journalism degree. I have a good amount of experience that I did at university, which I was really proud of myself for being able to do that. And also lucky that I was physically able to do more than just get to uni. But it was just no opportunities. I mean, there’s nothing really where I live now.
Brianne: Yeah.
Olivia: So that was really disappointing. But I worked at a little brewery in London and I would just work one day a week, and that was really good. I still had to call in sick of fair amount of time, and that was really frustrating and still dealt with all the guilt, which was really horrible. But here it’s… I dunno, it is kind of nice sometimes to have this routine that forces me out of the house and be on my feet. It is… for me, I consider it quite active.
Brianne: Yeah. I would.
Olivia: And it’s nice to have people to talk to. Everyone I work with is really nice. So to just get out of the house, even just to talk to the customers, just have something outside of my bedroom, can be really nice. And then obviously you have the opposite of some days where I just think, “What am I doing? Why do I think I can work at a pub?”
Brianne: Yeah.
Olivia: But I have been able to do it. I’ve been there I think seven months now, so.
Brianne: Yeah.
Olivia: But I just work 16 hours, and they’re pretty short shifts, so I’m quite lucky. And I don’t start early in the morning, so that’s good. And I don’t finish that late. So it’s really a good balance for me.
Brianne: Yeah. Yeah, that makes sense. Figuring out what are the best ways to like mitigate harm, kind of. As bad as that sounds, to phrase it that way. But yeah, like, “How do I avoid early mornings and late nights and commitments over five hours?” Or whatever it is.
Olivia: Yeah. It’s not easy.
Brianne: Yeah. No, it’s… yeah. And I feel like even one of the things with writing, just cause you were talking about that… so when you’re first starting to write, I worked as an editor for like five years or something before I stopped working, so it was kind of on the other side, but I know intro writing jobs don’t pay well, and if your energy or your cognitive ability is not reliable, then that effort to compensation relationship is not super great, especially when you’re starting out. So that’s, yeah. That’s freaking difficult. Yeah. So that’s the present. I would love to hear about how Sick magazine came about.
Olivia: Yeah. So that I had that idea in second year. I was working at a pizza restaurant just waitressing part time. I really enjoyed it at first, and then had to call in sick a few times, really last minute, which is of course, completely out of my control. I’m very aware that restaurants rely on humans to show up and wait on tables, but there’s only so much I can physically do. And if I’m well up until 10 minutes before I have to leave that’s… I have no choice but to give that amount of notice. Obviously that wasn’t enough for them, and they pretty much fired me. They were like, “Have the month off and then we’ll talk.” But obviously we never talked again.
Brianne: Yeah.
Olivia: So that day where I had… we had that conversation over text and he kept using the word “reliable.”
Brianne: Yeah. It’s… ugh.
Olivia: I went back into my room and I was just so, so upset. I feel like I had made such a life for myself that was really independent, and then all of a sudden I just kind of felt like, “Actually, I’m living in this like false universe. It’s not possible. There’s no way I’m going to be able to maintain this beyond university. I’m not going to be able to support myself. Like if I can’t work full time, how am I going to live on a part time salary? What if I can’t work part time? What if I can’t work at all? What am I going to do? Am I gonna have to move back to the States and live with my parents forever? Am I gonna have to constantly rely on other people?”
Brianne: Yeah.
Olivia: When I wanted to be able to… I knew I was capable. I was capable of going to university. I was still able to do… it was this in between space where you are able to do things, but you need accommodations and flexibility to do them.
Brianne: And they’re not the kind of accommodations that we typically think about or that are explicitly sometimes, written into law.
Olivia: Yeah.
Brianne: Yeah.
Olivia: So I was just thinking what I could do. “How am I gonna make my life work?” Because I didn’t want to just… I didn’t even know what I was… I didn’t know where I was going to go. I was just like, “What can I do to make myself work?” And I was… I felt like I had to be my own boss, and then I thought “I would actually be a really good boss because I’m understanding and I would know… I would know how to make people not feel guilty and to give them the time and space they need.” And I love magazines. I’ve always loved magazines. I’ve always loved writing. And throughout uni I really pictured myself working at a magazine in London being… working features, which I don’t know why I was so confident that I would… the full time working thing never really registered in my brain. But quickly realized that I wasn’t gonna be able to do that.
Brianne: Yeah, like Anne Hathaway in The Devil Wears Prada, that career path. And you’re like, “Oh, yeah, that looks terrible actually.”
Olivia: Yeah. So it just all came to me at once from that conversation. I was like, “I’m going to start a magazine, and it’s going to only employ people who are chronically ill and disabled, and it’s going to be called Sick because that’s a sick name, and this is going to be amazing.” And I just started planning it from there. So that was over two years ago. I didn’t really want to launch it yet. I really wanted… my plan was to work as a journalist for a few years, get as much experience as I could, and then once I actually had more experience as an editor, I would be able to call myself an editor. I felt like, in a way, “Who am I to do this magazine? Who am I to call myself a founder and editor of something?” I felt like people would just laugh at me, and just think, “You don’t have the experience to do that.” But I kind of felt like I had no choice, and I felt like I was in a good place to do it. Working 16 hours, I had time. Where I am now, I feel like it’s a nice place to do it. And I just had a conversation with my friend about it and I was just like, “Why don’t I just do it now?” I don’t… I couldn’t see anything coming along that… a job offer or opportunity that I would put it on hold for. There was just… I feel like there’s no opportunities. So I just went for it, and it’s been really, really terrifying. It’s been so fun, but every day I think I’m like, “What am I doing?” But then, you know, five minutes later, I’m like, “I know exactly what I’m doing.”
Brianne: Yeah like, “I feel great and I’m so excited.” And then like, “Oh God, I’m so overwhelmed.”
Olivia: Yeah.
Brianne: Yeah.
Olivia: But yeah, I really want it to… my ultimate goal is to have a actual office space, and obviously have people work remote, but have that space as well to have people with completely flexible contracts. So a full-time salary or a part-time salary, but not have it be a set hours thing, but just the job needs to… you need to do the work in whatever way you can. And something I didn’t really think about, but I’m thinking about now because I was originally, it was like, “Okay, it will be a yearly.” And now I’m thinking, I just want it to be a deadline-free kind of magazine. And not even like… even as I’ve been commissioning pieces for this first issue, and people ask me what the deadline is, I’m just like, “It’s just around this time. If you can’t do the article in time, I’m not gonna say you can’t be in the issue. I’ll just push it. There’s no rush. This doesn’t need to be out in the world as soon as possible.” And I think it’s really nice to have this space where magazines are really associated with deadlines and, “You have to get this to print. This has to be right on time.” And just take a step back and be like, “This is just going to be a slow process, and representative of our lives kind of being this way.”
Brianne: Yeah.
Olivia: But I would really love to have an office and just be full of people who are sick and disabled and just don’t have to worry about their boss understanding or asking for time off or going home early or anything. And I just think it is so needed, and there are so many people who would love to work for a place like that.
Brianne: Yeah.
Olivia: I just feel like I should make it happen.
Brianne: Yep.
Olivia: We’ll see. I need money to do it.
Brianne: Yeah, that’s always the obstacle, right?
Olivia: Yeah,
Brianne: Yeah. That’s the number…. well, when I stopped working, I was also in a really bad flare where my brain wasn’t working, so I functionally couldn’t edit, no matter how many awake hours I had. But as that started to clear up, my brain’s been really good for the last… I don’t know, year and a half maybe in terms of how often I have really bad cognitive fatigue or brain fog, but the deadlines for editing are the number one reason that I haven’t started looking for even part time work in that way. Cause I’m just… especially online with online publications, you’re looking at 24 hour turnaround time often and 24 hour turnaround time is not happening. It’s just not happening. Sometimes I don’t check my email for a week because that’s just how long it takes to get enough brain power to answer emails. So, yeah, it’s so needed, and I’m so excited about all experiments on figuring this out because at this point in time, I feel like we have… with the internet and ways to connect with people and distribution channels, it’s there. The network to make this kind of thing possible exists. And so it’s figuring out the mechanisms, which is totally what you’re talking about. Of like, “Okay, what needs to be true for me to be able to pay people for providing… for doing all of this emotional labor or creative work or whatever, however they’re able?” It’s an exciting question.
Olivia: And I’ve proven it myself. Since I’ve started working on the magazine, I’ve been working, I’ve been logging the hours I’ve spent, and I work basically full-time on the magazine plus my part-time bar work. And I am able to physically do that, but I need to be able to work from bed. I need to be able to take a nap at random times. Sometimes I work from 11 to 1 in the morning, on my couch where my boyfriend’s watching TV, and you need… everyone should be allowed to do things in the way that works for them, and I am able to do good work. I’m able to do the job. And I know there are so many other people that are in the same situation, and I don’t see why employers can’t be more accommodating. I think a lot of the time it doesn’t actually affect anything. I did an internship at Marie Claire, and it was only two weeks, and it was really great, but basically sent emails the entire time, didn’t even speak to who was sitting next to you. And I was like, “I could be doing all of this from home.” And you know that if you ask, they’d be like, “No, no, no. You need to be here in person.” There’s no reason why. It’s just that that’s the way things are. The same with working hours being nine to five. It’s just the way things are. A two day weekend. Why is that the way things are? It’s not great. It’s not… I don’t think it’s healthy.
Brianne: No.
Olivia: I think three day weekends should be a normal thing, just for sanity.
Brianne: And not just for people living with chronic illness either. The whole structure is obsolete. .
Olivia: And our culture is just about overworking, I feel like. And you know, the hustle, and going to the gym before you go to work when your work starts at nine. I’m like, “How do people do this?” But is that something to be jealous of, or to admire? And I think… I mean obviously, whatever makes you happy is fine. I just don’t think there should be this one model of what everyone strives for because we’re all so completely different. There shouldn’t be a normal, or, “This is the way you’re supposed to live.” Or, “Now that you’re an adult, these are the things you’re supposed to do.”
Brianne: Yeah. And “This is what a healthy schedule looks like,” even. The sleep police who are out there telling you to get off all your devices four hours before bedtime or whatever. I’m sure that that helps people. It’s the same as diets. I want people who are having trouble with sleep to try that, to experiment with sleep hygiene, but I don’t want the sleep police running around telling everybody that it’s their own fault that their bodies are unhappy or whatever.
Olivia: Yeah.
Brianne: Yeah. That’s awesome. I’m excited. Do you know… so the first… you’re doing a zine first, is that right? A smaller issue, and then planning a larger issue later?
Olivia: Yeah, so my plan is to kind of be like, “Here’s what Sick is going to be like. If you want to see this happen, please donate to us. And let us pay all of our creators.” So I’m tentatively planning it to be published in July. And then I’m also hoping to do a launch event here in Norwich. And then I’m planning on having a fundraiser in New York City in the fall. And launching a GoFundMe, and kind of all of that based around raising the money for the next issue, which I am confident that I’ll be able to get. And I have lots of people that I plan on reaching out to personally. And, I’m just… yeah, I’m trying to go all out on it and raise as much money as I can, and I want it to be big. I want it to be powerful and important and really heard. And I’ve received a lot of really positive feedback, which has been really, really nice. So yeah, I’m really excited about it and I’ve just really, really enjoyed working on it. It doesn’t feel like working. It feels like what I’m supposed to be doing, and it’s really rewarding.
Brianne: Yeah, I believe that. I feel that way about the podcast. These interviews are intensive, and they take up some energy as you can imagine, and the administrative work is different, but kind of in the same vein of making a thing that involves a lot of internet stuff other computer time happens, but it’s just like, “Fuck. I love having these conversations, and I love sharing these conversations, and I love talking about them with other people.” And I feel like… I know you’re collecting kind of a variety of… maybe perspective is the wrong word, but styles or whatever. You’re looking for all kinds of different outlooks on this stuff. But this needs to be out there, our stories or our whatevers need to be out there for sure. And it’s really exciting.
Olivia: Yeah. And I also am not just publishing stuff that’s about illness and disability, which I’m excited about. I just think it’s interesting to see how your perspective, as someone who’s dealt with certain things, influences your outlook and the way you speak to people, the type of questions you ask, the way why you write the way you do. So I’m hoping… I would say like 95% of submissions I received were about illness and disability, so I feel like I might try to make it a bit clearer that I do want a mix and a balance.
Brianne: Yeah.
Olivia: Especially, cause I feel like there are quite a lot of places that are just focused on that. And I just want it to be a bit different and a more unique space. So I’m hoping to have more of a balance.
Brianne: Yeah. That’s great. And also, hopefully whoever’s listening to this can know that for if they want to pitch, I guess official issue number one, the 2020.
Olivia: Yeah.
Brianne: Yeah.
Olivia: I’m kind of mad at myself cause I… this is called issue 01 and I was like, “The full issue is going to be called one,” and then I was like, “That’s so confusing. I can’t have an 01 and then a one.” No, I just have a one and now I’m going to have to do two and it just doesn’t make any sense.
Brianne: Yeah. It’s what happened.
Olivia: But yeah, whatever
Brianne: I hear that. Awesome. I think we’ve covered all of my main topics on your timeline. Is there anything that’s in your brain about any of this stuff that we haven’t covered yet? It’s okay if the answer is no.
Olivia: I mean, there’s probably so much stuff I didn’t say, but no.
Brianne: Okay. No, that’s good. I feel like, we’ve been talking about all kinds of things, so that’s a normal, but I like to check with people. Awesome. Well, thank you so much for talking to me and making the time and all of that. I’m excited to share this.
Olivia: Oh, thank you for having me.
[guitar riff]
Thank you for listening to episode 40 of No End In Sight!
You’ll be excited to hear that the intro issue of SICK Magazine is now available for preorder at sickmagazine.co.uk, and it includes a piece written by Mairi from episode 33. You can also follow SICK on twitter and instagram @asickmagazine. You can find Olivia on twitter @oliviaspring8 and on instagram @olspring.
And of course you can find me on instagram and twitter @bennessb and you can find this show on instagram @no.end.in.sight.pod. I’m still slow on posts because I’m still behind on transcripts, but that’ll pick up again once those pick up again, which should be soon. In fact, that’s the whole reason i’ve started a patreon account! Which I’ll go ahead and plug again: it’s patreon.com/noendinisght.
Next week I’ll be talking to a woman with ehlers-danlos syndrome, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’ve got a few fall patterns in the shop that are about to be seasonal, so I’d love it if you checked us out at digitalartisanal.com.