David Laurin talks crohn’s disease, the difficulties of building friendships and careers from inside a flare, and the antagonism between western and alternative medicine.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
I hope you’re all surviving the holidays if you’re the type of people who celebrate. I certainly feel like I’m in the middle of a marathon, and I am deeply looking forward to January 2nd when I can sleep for a week.
Before I jump into the episode, I want to share another iTunes review! Over in the Canadian iTunes store, 183daysofaip says “To hear stories about people that connect with me in a way no one else does feels so heartwarming. For someone else to understand the frustrations of life chronic illness feels validating. Great podcast.”
I am so so glad to hear that these stories are resonating with people!
Today I’m talking to David Laurin about crohn’s disease, navigating career and friendship from inside a flare, and the antagonism between western and alternative medicine.
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: Well, we can jump right in if you’re ready.
David: Yeah, absolutely. I’ve never really talked about crohn’s disease or chronic illness with anyone other than my family, so this is kind of a big thing too.
Brianne: Yeah, that’s awesome. Okay, well then first tell me about what your health was like when you were a kid.
David: When I was young my health was fine. It was fine for a kid. I didn’t have any kind of major health issues. But it was never great. I had some breathing problems when I was a kid, but those kind of went away with time and then, yeah.
Brianne: Like asthma kind of stuff?
David: Yeah, I guess so. Like, I had a puffer for a long time, and then all of a sudden I just kind of stopped needing it. But I was pretty young, so I don’t really understand why that happened. But I was fine with it, you know?
Brianne: Yeah, yeah. I had one in elementary school, too. And then I just didn’t anymore. I don’t know how that happened. It’s weird. Okay, so then when you were a kid you had a little bit of breathing stuff, but not much and then it kind of went away. And then when was the first time that you started to notice health things again, we’ll say?
David: I would have been in high school. I was probably 16 when my first initial flare-up happened. I was in grade eleven. I think I had my first semblance of realizing that something wasn’t right when I was on vacation with my family in Mexico and kind of felt a little weird there, but we just chalked it up to the food. And then when I got back it didn’t really go away. And that’s when we started investigating a little bit more. But I also come from a family of people with crohn’s disease, so as soon as the symptoms started showing up, we knew basically what it was immediately and just kind of went in that direction.
Brianne: There weren’t a lot of mysteries.
David: No, no.
Brianne: And when you say “feeling weird,” that’s like, I’m going to guess so you can tell me if I’m right or wrong. There’s kind of a bunch of intestinal stuff that can happen. So some pain, some indigestion, some everything else, or was it in other directions too?
David: Oh, yeah, it was very much just stomach pains and increased frequency of going to the washroom and not feeling energetic enough to go out and do things at first. And that kind of stayed steady for about a year and then it started getting worse. And that’s when we really ramped up the going to the doctor’s. Things were going on for about a year where I kind of tried to just deal with it by eliminating things from my diet in hopes that that might help it go away. But, you know, the whole time we knew that that’s really never going to be a solution, it might help in the day-to-day, but it’s not going to be a long-term way to live your life.
Brianne: It’s not the whole picture.
David: Exactly. Yeah.
Brianne: So at that point had you gone to a doctor yet or were you experimenting with yourself for a year and then went to a doctor.
David: Yeah. I was kind of experimenting with food for a year or so and then just gave up on that because it wasn’t enough. And that’s when we just decided, “Well, we know the path that we have to take. Let’s get this started.” The sooner you jump on it, the sooner that you can live a better life, you know?
Brianne: Yeah. So then for that, so for a crohn’s diagnosis, they do that with a scope, right?
Brianne: So you went in and got that kind of stuff done next.
David: Yeah, we kind of had to fight for that a little bit with the doctor because we wanted to… He wanted to start from the simplest possibility that it could have been some sort of infection or a virus that I picked up while I was in Mexico and just hasn’t gone away yet. And we just had to keep… I want to say “strong arming,” but that’s a little bit of a hard word. That’s not exactly what we had to do, but we had to keep being insistent like “No, this is probably crohn’s disease. Let’s start there and kind of work from there.” Because my brother has it and he was around my age, or rather he was around the same age when he first had symptoms, and it was the exact same process that he went through. So as a family, we knew what it was.
Brianne: Right. Or at the very least, wanted to eliminate that first, instead of spending another however long experimenting with all these other things when you know what the prime suspect is.
David: Oh, yeah, exactly.
Brianne: Yeah, that’s hard. I understand it from a standard of care perspective with doctors, but at the same time, when you’re like, “Excuse me, there is an overwhelming amount of evidence. Please pay attention to it.”
David: Yeah, exactly.
Brianne: So then how long did that process take and what happened next?
David: That process didn’t take very long because my mom basically just said, “Look, this is what we’re going to do. This is what happened to me when I had my diagnosis.” You know, back back when she did and just kind of said, “This is what it is. Let’s not pretend that it’s something else, and let’s just move forward with it.” So the whole process to get my diagnosis only took probably four or five months.
Brianne: Right, yeah. Quick!
David: Yeah. With one scope. And yeah, it was pretty obvious. So it didn’t really pretend to be anything else, and I knew what it was right away.
Brianne: And then from there, that was still in high school?
David: Yeah, that was in my grade 12.
Brianne: Okay. And then what… did you start on medication right away? Like, what did your treatment protocol look like then? And then maybe has it changed over time since obviously time has passed?
David: Yeah. It started with prednisone, which is… everybody on crohn’s disease knows prednisone. Did a bunch of that just to deal with the initial flare-up and get the inflammation under control. And then I was on a maintenance drug for a little while that kind of helped for like, maybe a month and then it stopped being as effective. So I went onto another maintenance drug for a little while, and that one also only lasted about two, three months. And these weren’t… I don’t really know what kind of drugs these were because I was on them so briefly and it was like ten years ago. But then after those two drugs stopped working for me, I got onto a biologic, I got onto remicade when I was 18. And that was really the first time that the symptoms went away and quality of life came back.
Brianne: Okay. And then so that really changed. And were you eating… how were you eating at this point? So you mentioned doing some experiments initially, but once you started taking medication and noticing, we’ll say some impact, and then even it will go up or down. Did those still play together, or did it mean that you could pretty much eat whatever you wanted again?
David: It meant that my diet was widely expanded from what it was before I was on the medication. Because before I was on the medication, everything basically got cut out. I cut out gluten, I cut out dairy and I cut out raw vegetables, nuts, seeds, all the things that are hard to digest and all the things that have nutrients in them.
Brianne: Right. The usual suspects.
David: Exactly. And then once I got onto the medication, I guess I’d say, like 90% of that came back. I still couldn’t really tolerate dairy, which is fine with me now, because I definitely don’t eat milk anymore. And otherwise, once I got onto the remicade things kind of came back and I was able to eat not just raw vegetables, but junk food again, which was interesting.
Brianne: Yeah. It’s funny how your relationship to foods can change once you become aware of the impact that they can have on your body. It’s a wild ride.
David: Oh yeah. And food that kind of seems so innocent and wholesome takes on this really dark quality to it. And you’re like ugh. I just imagine what that’s going to do to me and how I’m gonna feel for a week after eating, you know, like a side of fries. And it’s it’s just not worth it.
Brianne: Yeah. I definitely… whenever I fall into research holes. I’m reading a book called the Wahls Protocol right now, which is written by this doctor who has MS and she does a lot of… she basically reversed a lot of her symptoms with diet, and it’s a very nutrient-intensive diet. But anyway, part of reading it is explaining the science around it. And whenever I get into these science holes, I’m like, “Oh god, everything that’s happening inside my body is terrible!” Like one bite of anything and it’s really setting off this whole chain of events. It’s good to know but sometimes it’s also too much to know.
David: Yeah, sometimes you just have to stop thinking about it because it is too much.
Brianne: It takes over. Okay, so you started that medication when you were, I think you said 18, is that right?
David: Yeah. I started that medication when I was 18, with a month before I moved to Toronto for school because I’m from rural Ontario. So then I moved to Toronto and stayed on that medication at my hospital Mount Sinai. And it was great. I felt great. Not only was I able to eat whatever food I wanted to, but for my first year of university I was able to drink for the first time in three or four years because in high school I just couldn’t handle it. And it got to the point that I felt so good that I would kind of forget that I was sick at times. And then, you know, you eat something and you’re like, “Oh right. I’m sick.”
Brianne: “I have this thing that happens.”
Brianne: So it felt… thinking about what normal feels like is always really interesting, especially somewhere like university, where you’re so surrounded by other people doing whatever normal looks like. And so did that continue through university for you?
David: Yeah, luckily I managed to get through all of my undergrad and about a year and a half outside of university without any issues on this medication. I feel really lucky that I managed that much time, and managed that kind of difficult time because stress is such a big trigger for crohn’s disease, that I managed to make it through my undergrad without any issue is pretty good.
Brianne: Yeah it’s huge, without flaring. Okay, so that was like a solid five years then of medication is working, you don’t need to think about it. That’s great.
David: Yeah, it was. It was actually closer to eight years because I started in high school and then university took longer than expected and whatnot.
Brianne: Okay, so eight years. And the way that you’re talking about it, I think that that’s how people think that a lot of autoimmune diseases work. First you’re sick, and then you find out what it is, and then you’re on a medication and the medication does the work, and you don’t have to think about it anymore, you know?
David: Yeah. That kind of was my experience for the most part.
Brianne: Yeah. And that sounds great and pretty manageable.
David: Yeah, and then it slowly became very unmanageable for me.
Brianne: And so what changed?
David: One of the issues with biologics is that your body slowly builds up an immunity to the medication and it stops working for you. And that’s what happened on the remicade that I was on. And it’s a slow process. So it took eight years for my body to build up this immunity to it. But as soon as it builds up that immunity… as a medication, it just stopped working for me. And my symptoms came back over the course of a year. And you know, they got pretty bad during that flare-up.
Brianne: Yeah, okay. And I can imagine that would be really, really frustrating.
David: Yeah, it was. Especially because the process of dealing with a flare-up before switching from one biologic to the next involves a lot of secondary or support medications. Ok ? And that’s frustrating because the window between infusions for this medication was eight weeks at the time. So, you know, you try something, and then you’d wait eight weeks to see if it felt any better before your next infusion. And then you have that infusion, and you’d have to wait another eight weeks to see how that felt. And it just kind of took this protracted amount of time to deal with something, only to find out after about a year and a half of support medications and changing infusion intervals and changing the amount of medication, to find out that I just need to change medications.
Brianne: Right. You have to invest a lot of time in finding out if something is even having an effect or not. So during this time, maybe early in the flare and while you’re trying on different medications, what else were you up to? Like, what was the rest of your life like? Were you working? Were you whatever?
David: Yeah, at the time that the flare-ups started, I was still working and I was playing in a band and I just got to a point where I was getting too sick to even do that. So I quit my job with the intention of taking a month off and getting my health back in order and finding a better job. And I took the month off. After the band broke up, I took the month off. And that month has turned into about two and a half years now of dealing with this flare-up. And yeah. It got substantially worse before it started getting better. Yeah.
Brianne: Yeah. And what does it look like for you to be able to take care of yourself? So, I’ll hypothesize for a second and then stop talking. One of the things that I know I find really difficult with working is partly the schedule. So it’s like you have to show up and be somewhere and be functional for a fixed amount of time. And then also, there’s just the stress of explaining things to people over and over again. So with not working, how does that change and how does it shift the other things that are going on and what it looks like you for you to feel like you can optimize your… I don’t know… experience. I ran out of words there.
David: Yeah. Well, firstly, I don’t really find it all that stressful to explain to people my limitations, I kind of wear it on my sleeve. I’m very up front about it. As for working, getting to places is very difficult, especially given the nature of this flare-up that I had. Even getting up and going to the street outside of my house was really difficult for me for about eight months. I was essentially bedridden for about a year, a year to eight months. So that made working very difficult.
Brianne: Yeah, certainly.
David: Yeah. And I don’t have any kind of marketable skills, so I couldn’t really work from home because my degree is in philosophy. So, you know, I don’t have any skills realistically.
Brianne: Like freelance philosophy on you computer?
David: Oh yeah, I’m sure I could do that, but nobody would pay for it. So…
Brianne: Yeah, creating jobs from bed is a really… I’m excited to see people find more solutions to that. Because there are some really specific ones, and if they’re not for you, then like you’re saying, you’re out of luck.
David: Yeah. So I was just completely unemployed for, I mean, I have been for about two and a half years because getting out from my house to a place to work was difficult. And if I had to stand at the job, I couldn’t do it. If I needed to guarantee that I would be available to people for eight hours at a time, I can’t do that because I never know when I’m going to need to run to the washroom.
Brianne: Yeah, and how much… so, especially during the time when you’re essentially bedridden, how much of that is is needing proximity to a bathroom, which you can talk about as much or as little as you want, and how much of that is also… I can imagine there’s pain involved, and there’s essentially malnutrition involved in something like this that can lead to weakness and difficulty walking or cognitive dysfunction. Like, what did that look like for you?
David: Yeah, for the period that it was the worst during this flare-up, there was all of that. I needed to be at least five steps away from a toilet. Or rather, at most five steps away from a toilet for like, eight months. It was really strange.
Brianne: It happens to people, man.
David: Oh, yeah, it does happen. And thankfully, my roommate at the time was remarkably understandable and would like stop his showers to let me get into the washroom.
Brianne: That’s great.
David: Yeah. I don’t know how I could have possibly gone through this without a roommate as accommodating as he was. Yeah. And then, you know, I was eating a slice of bread a day because not eating and being hungry was better than eating and having to deal with that feeling. So, malnutrition was definitely part of it. And when I was at my worst, I was also losing a lot of blood. So I was tired and could barely focus on things. And would watch tv and kind of, you know, fall asleep in the middle of the day for two hours. And that was basically all I did for about eight months. Other than take a cab the two blocks over to the hospital for my medication. Then take a cab back. Because walking from my house to the hospital was just not possible.
Brianne: Not gonna happen. Yeah, I think that the tv thing really really strikes me because I’ve had different issues, but I’ve also been there where you’re like my life is going maybe from my bed to a couch if I want a fun and exciting change of scenery where I’m going to be doing the same things. But this is where I do it in the daytime. And this is where I do it at night. And it’s left me with a really weird relationship with tv. Like, I don’t like watching netflix when I feel well because I feel like I’m, I don’t even know, robbing my body or like I’m going to trick my body into getting sick again, just from the soothing introduction of Criminal Minds or something.
David: Yeah, and just the guilt that comes along with feeling unproductive was really what got me more than anything. Like I’m lying in bed, barely awake, watching The Office for like, the eighth time in a row. And feeling like, “You don’t feel that bad today! You should try to do something! Like try to find a job that you can do from home.” And then you’d stand up and be like, “Nope! You’re gonna pass out or something. You gotta lie back down and guess what? You’re watching tv again for the next four months.”
Brianne: Yeah, I’m so interested, and there are more conversations about this happening I think on the internet now, about that thing. That needing to feel productive and tying your human value into your productivity. But it’s so real and the self talk of like, “You’re not as bad as you were last week!” Even if going out and doing the thing might make you sicker. And then also, I already know part of this and you mentioned Toronto. So healthcare is covered, so that also must… just because I’ve talked to a lot of Americans. So how much of this is covered by OHIP or is everything covered?
David: The basic stuff is covered by OHIP, but my medication is covered by the trillium drug plan because my medication is just, like, ludicrously expensive. When I was on remicade, it was five grand an infusion, and I would do that every eight weeks, and I did that for eight years. And I’m on a new biologic now, and I don’t even know how much that one costs because I’ve never seen a receipt. It’s a new one that there’s a very small clientele that uses it. Even using the word client tells a weird word there, but anyway.
Brianne: It’s a luxury product.
David: Yeah, right? There’s a very small group of people who use this current biologic, so I can only imagine it’s more than $5,000 an infusion. And I couldn’t imagine having to do this, going through this in a place where there aren’t these kinds of social structures to help people with these issues. Like I come from a reasonably middle class background. But even that, like I would not have been able to cover this. It’s a whole other salary. I need a whole other salaried position just to pay for my health care.
Brianne: Yeah, yeah, that’s exactly it. I’m really interested in the financial components of it in general for this kind of stuff, because I think so many people do… there’s an explanation. It’s not available to everybody. And so you have to qualify, or you have to be working, or your family has to be able to afford it. like there’s always something to even get access to these things that are letting people survive.
David: Yeah, it’s kind of a grim thought if you let yourself think about it too much. And it can be hard to come to terms with.
Brianne: Yeah, and I do understand that new drugs are expensive to develop. I don’t have, like, a big trust and faith in the pharmaceutical industry, but I understand when it’s for a small audience and they’re constantly researching that there is a cost associated with that. But it’s complicated. So it sounds like you’re describing this one period at least as something that is in the past for now. So things have been improving from there since then. Are you at a new plateau? Like you found a medication that worked? What’s been going on?
David: Yeah, I’m on this new medication. It took about a year to switch from the old one to the new one. And I switched to this new medication, it’s called entyvio. I switched to entyvio about a year and a half ago, and I started improving right away. But I also started a secondary medication at the same time, I started a steroid. Not prednisone, something new. And so now I’m at a point a year and a half later where I’ve improved, but not really enough. I’ve kind of plateaued again. And I’m trying to get off the steroid to see if the biologic has helped or if it’s just the fact that I’ve been on a steroid for the same amount of time and maybe the biologic hasn’t really done anything. This is one of my concerns right now, you know, trying to find the right combination of medications that work. And yeah, I’m at the point where if this biologic, if entyvio doesn’t work, then the only solution left to deal with this flare-up is surgical. So that’s what I’m considering now.
Brianne: Yeah. It’s so hard when you obviously want to do the most that you can to feel better as quickly as possible. And then you’re left in that position of like, “Okay, I did three interventions or five interventions…” And whether that’s changing your diet or starting drugs or whatever. And then you have to sort through it and possibly feel worse by removing something in order to find out if it’s working. Like, ugh. That’s how that feels.
David: Yeah, it’s weird to be like, “Okay, I’m going to make myself feel worse, I think, or risk feeling worse to find out if something else is working.” It feels like two steps backward to try and take one step forward, but you know, it’s what you’ve got to do.
Brianne: Yeah, totally. And then you’re kind of on a plateau, and you’re basically at a point where you’re going to start tinkering again. So what… Okay, I’m trying to go through all of the things that I like to cover, and my brain gets scattered. One, we have talked about diet. Is there anything else that you have tried that is perhaps more out there when nothing seems to be working and you just want to be doing something?
David: Ah, I wouldn’t really call it out there, but I’ve been vegan for about four years now, and I think that’s helped? I don’t think it’s hurt in any way. The thing with crohn’s disease is that it’s always, the only thing that doctors ever say about diet is diet as tolerated. So my diet will be completely different from another person with crohn’s disease, and those two different diets will work for both of us. And if we were to try each other’s diet, it would be a nightmare. So it’s something that I’ve kind of tried and tried to figure out. I’ve cut out all the major crohn’s triggers like nuts, seeds, raw vegetables. I don’t eat deep fried foods. And that seems to help. And that’s something that you can definitely do while avoiding animal products. So I’m pretty happy about that. That’s really the only dietary intervention I’ve done over the last few years. Cutting out the usual suspects.
Brianne: And like following what feels good, or feels less bad, to be more accurate probably.
David: Yeah. I did a lot of blended food for a while when I was at my worst, I drank a lot of blended bananas.
Brianne: Yeah, that’s fair. I’ve been getting really back into smoothies lately because I’m trying to get more vegetables. And it’s good, but also cold, which was a planning error on my part. I think I should have gotten more into soups right now.
David: Yeah, I guess that’s really what blended soups are, just savory hot smoothies.
Brianne: Yeah, like it’s a good idea. There’s just so many extra steps. Because I do… it’s funny because I absolutely agree. I believe that diet is super personal in terms of what just works. And so I used to barely eat meat, I was effectively vegetarian. And then once I started cutting all this other stuff out of my diet, which for me included beans at one point because I really needed to get rid of a lot of carbs. And I was like, “I guess I do need to start eating meat and figuring out how to prepare meat, and buy the most ethical or the most whatever, like, figure out how my values play into it.” And then that’s been a transition too. And so I think people go in all these different ways based on like, okay, red meat isn’t working so I have to think about other good protein sources. Or grains aren’t working, so I have to think about how to be full. Like it’s such a puzzle.
David: Yeah, yeah. I guess one of the things that this flare-up has kind of helped me learn is how to be okay with not feeling full. Which is kind of a blessing in disguise, I guess.
Brianne: Yeah, that’s a super different thing. Eating to satiety. And then, well, it’s interesting. So since, like you talked about at the beginning, this is something that has been in your family. So it seems likely that there’s a genetic component we’ll say say.
David: Yeah, they call it a familial link. They as in scientists who study crohn’s disease. They’re not willing to call it a genetic link just yet, because the research is just not there yet. But yeah, for people living with it in a family, it’s pretty obvious there’s a family link.
Brianne: And like. I mean, I understand the science hesitancy. It’s like that could also be environment because everybody’s living in the same house. So whatever that might look like.
David: Yeah, and the area of Ontario that I’m from has a slightly higher than average or higher than probable occurrence of crohn’s disease as well. So they’re trying to figure out – they, again, scientists – trying to figure out why that might be.
Brianne: That’s super interesting. So related to that, do you have any unproven theories based on your own research, or like what do you think is going on in terms of what turns this stuff on or what triggers it or what causes people in the same area to get it? That’s super interesting.
David: The only real theory that I have as to why, at least, why people in my area have a higher than average occurrence of crohn’s disease is I’m from a small kind of isolated French Canadian community that’s been there for hundreds of years. So it’s a very close-knit family up there, and I think that’s really what it is, is just, you know, we’re all a lot more close family genetic-wise than most of the population.
Brianne: Yeah, I see what you mean. So, you think probably genetics has a part in it, which could certainly make sense. I mean, when it’s everybody in an environment and autoimmunity is so weird. I got a lot of wind noises happening here, I’m sorry. So then how, so it sounds like your brother is older than you. Is that right?
David: Yes. Yeah, yeah. He’s about six years older than I am.
Brianne: Yeah. And so how have you seen… Because you have these two people in your life and your family who kind of went through this a little bit before you. How are they doing? And how does that impact your own experience of living with this?
David: That’s… wow. That’s a…
David: Yeah. That’s a harder question to answer than I thought it would be. It’s nice to know that I have people with whom I can kind of relate about the experience of crohn’s disease, even though we have very different lifestyles and different symptoms and we’re all on different medications. So that’s also interesting. I think the real benefit is just having that kind of support group of my family. You know, whenever I’m not feeling well if I call my mom, he kind of says, “Oh yeah, I know what that’s like.” And that’s a comforting feeling to have somebody say, like, “Yep, I’ve been there.”
Brianne: And it’s true.
David: It’s always difficult to convey symptoms to people who have never lived with these symptoms. So having somebody who can just kind of nod along and say, “Yep, I’ve been there,” is a very easy, comforting feeling.
Brianne: Yeah, yeah, I totally believe that. One thing that I talk about all the time is how difficult it is with language, because the words that we have to use to describe symptoms are the same as words that we use for other things. And so people aren’t necessarily able to map that onto their own experiences if they haven’t.
David: Yeah, yeah, like I often say, “Oh, my stomach’s not doing well right now.” When during this flare-up, it’s really not been my stomach that’s been the issue, but trying to explain that, “Oh, my lower intestines and upper rectum is very inflamed today. And I don’t feel well because of that.” Is hard to get across to people because they just don’t know what that feels like. So you just say, Oh, my stomach hurts.”
Brianne: Yeah. Yeah, it’s a proxy. And so what do you think… Like, what does next look like for you? And one of the reasons that I’m asking is I think there’s a grieving process around, “Oh, the way that I thought that life looked like for people who have careers that go a certain way and work themselves to death in their 20s and 30s.” If that doesn’t look as possible, which, from a flare it certainly doesn’t. Like for me, it’s really reshaped the way I think about the next ten years of my life. And so what do you, how is that happening for you? I guess is my question. What do you want that to look like?
David: Yeah, that’s something that I really struggled with when this flare-up first started. Because ever since I was in high school, my only goal in life has been to play in a band and be a musician. And things were going in that direction for a long time, and then I had this massive flare-up and realized that life on the road is basically impossible for me. Unless, you know, some major changes happen. So I kind of had to give up on that. And now I’m trying to reimagine what a career might be like as somebody who’s been sick from the age of 25 to 27, prime career starting ages. Yeah, it feels really grim and it’s difficult to imagine life on the other side of this illness and being able to go to work on a daily basis is kind of hard to think about it at the moment. So yeah, I don’t really have a good answer for that.
Brianne: No, I don’t think there is one.
David: Yeah, I’m still trying to get to that point where I can think about what after means. Because it’s entirely dependent on if I end up going in for surgery or there’s another medication-based solution. Because those are two different lives that I could lead.
Brianne: Yeah, totally. Well, then. Okay. A different question is because you talked about it like there was eight-month period that was especially bleak. And now you’re somewhere in the middle at a plateau basically. What does that look like for you? What do you get up to these days?
David: Okay, yeah. These days I’ve gotten… my brain fog is gone now because I’m eating properly and I’m sleeping well, and I’m not losing blood on a regular basis. So now I’m able to do things like, you know, I’m reading again because when I was at my worst, I just couldn’t even focus on a book. So I’ve started reading again. I’m trying to figure out what kind of career I would like afterwards, you know, trying to learn some skills, which is kind of hard when you’re still kind of stuck at home. I’ve got some mobility back, but, you know, I’ve only recently started using public transit again. For about two years there, the only way I could get around was through cabs because if I needed to stop and get out, you can’t do that in a train. If the train gets stuck for even ten minutes, that could be really bad for me.
Brianne: Yeah. Oh, yeah. I think in one of the episodes with my friend Stuart, he talks about that. About taking a cab to the hospital because he knew that he’d have to throw up on the way. And he grew up in the Beaches, and he’s like, “I can’t just throw up on this streetcar at two o’clock in the afternoon!” There are many great things about public transit and access to a bathroom is not one of them.
David: Yeah, that’s actually something that I’ve been thinking about a lot more lately is accessibility and chronic illness and how that’s kind of unique to issues with people with chronic illnesses and how that’s different from chronic illness to chronic illness.
Brianne: Yeah, yeah, definitely.
David: Yeah, it was kind of amazing to just see my world shrink as I got sicker and sicker. And all these things that people take for granted, that I took for granted beforehand, are now kind of these cherished and almost sacred things now. Like walking to the end of the street is this wonderful experience for me. And you know, it’s interesting how the world changes after these kinds of big experiences.
Brianne: Yeah, totally. And Ii think accessibility is a huge thing to talk about with chronic illness, because obviously chronic conditions are incredibly common. I think more common than we realized because people are stuck at home so it’s easy not to see that it’s happening. But because, like you just said, they’re so different from person to person. It’s hard to think about how to accommodate or what accommodations might look like. Like from where you are right now… So you just said your brain fog has really improved, and I am also in that position. I got my brain back about six months ago, and it’s awesome.
David: Yeah, mine was about six months ago too.
Brianne: Yeah, so that’s a really great feeling because it’s so distinct. But I don’t know that my body would support a normal job, whatever that means. So, like, what would accommodations even look like in order to be able to use your brain? And I hear what you’re saying about looking at how to apply it because you weren’t thinking about your career trajectory in this way before. But with that part aside, let’s say you knew what your dream job was. What would need to be true about the environment, the work environment or the schedule, in order for your current self to do it?
David: Yeah, I would need a pretty flexible schedule, and I would need a job that doesn’t have hard time commitments. Where I can step away from work and go to the washroom for, you know, 20 minutes whenever I need to. So that kind of stops me from having a variety of different jobs, right? It needs to be something where I can sit down, or stand up if I need to at times.
Brianne: Like physically flexible.
David: Yeah, physically flexible too. Yeah, exactly. And it needs to be a place where there are a number of washrooms. That’s my main concern. I couldn’t work in an office where there’s only one toilet available because if somebody’s in there and I need it, I don’t really have any other options.
Brianne: Yeah, that’s creating a real crisis. Yeah, it’s like this stuff is hard to capture. I think I’m starting to ask people about it more. But it is. It’s like the flexibility piece is super important. And it’s true that working from home has become more common. I think. Like more people are able to do that in desk kinds of jobs, or like in the tech industry, which is super flexible, it’s happening more. But when on top of wanting to be able to work at home sometimes, you also need to go, “Okay. And my deadlines need to be super flexible because I just can’t promise that my body will be working on a specific day.” I’m incredibly interested in how people, we, capture and convey that value. Like I’m good at something, let me do it on my own time and still get paid for it.
David: Yeah, that’s even only something that I need part of the time. Like when I’m healthy, I can accommodate any normal working situation. But then when I’m not healthy, all of a sudden, I’m like, “Oh, yeah, I need these flexible contours to work.” And that seems pretty difficult to ask from an employer, especially in a job market where there are other people who aren’t sick, who won’t need these accommodations, that they could hire. So it feels kind of like “How do I compete with other people who don’t have this issue and these requirements?” It’s…
Brianne: Yeah, yeah. I think it’s like a whole other way of working. Like it would need to be jobs that were not set up to be competed with by someone who doesn’t have those limitations. I’m just obsessed with this question, but I understand that nobody has the answer yet. Yeah, and so then how… you talked about this piece with your family, that it’s incredible that your family is basically able to empathize. How has this impacted other relationships that you have? And you can talk about that however you want, but…
David: Yeah. Yeah. When I got really sick, I kind of just instinctively started letting my friendships go to the side. Yeah, that’s a strange way to put it, but that’s basically what happened. I just needed to kind of focus more on my health than maintaining friendships, and my social circle really retracted from that point. And now that I’m starting to feel better, I’m trying to figure out how to reconnect with friends and reach out to people. And it’s a very strange thing to try to talk to somebody that you haven’t seen in two years and say, “Hey, I know I kind of let our friendship fall apart, but that’s because I was really sick! But how about we hang out sometime soon?” You know, like, “Oh, you want to know what I’ve been doing for the last two years? Nothing. I haven’t done anything in two years. Tell me more about yourself.” You know, I understand that it can be really hard to stay friends with somebody who was in the situation that I was in. When I couldn’t go hang out in places or to somebody’s house, you know, my friends had to come to me. And it’s a weird balance to be understanding about my situation and be empathetic to my friends while still wanting to hang out with my friends and see people. You know, it’s tough.
Brianne: Yeah, I definitely hear that. It’s true and it’s hard. It’s hard to explain to people when you’re like, “Well, I want to see people, but also…” I mean and for me, sleep was really important, and I was sleeping a lot in the daytime, so it’s like, “But I also can’t guarantee that I’ll be able to have a conversation with you.” Like there are only some people who are in that friendship zone where you’re like “I’d love it if you came over. It has to be the middle of the day. We might not be able to talk. Do you wanna hang out with me?” Like I understand that that’s not a super tempting proposition and that it also doesn’t… like it’s not a reciprocal friendship.
David: Yeah, yeah, and then you kind of feel guilty about always saying, “Come over to my house. Come hang out with me. Come see me. I can’t go out there. So you have to come to me.” At least I felt guilty about that for a little while. And then, you know, you kind of have to say, “Well this is the only way that I can see people, so you should try not to feel guilty about it.”
Brianne: Yeah. And like, I mean, I think the thing about reaching out to people afterwards that you were describing at the beginning of this little tangent is that it’s hard also to make it not about… gosh, I’m thinking about language. So I think people understand certain kinds of illness. So cancer comes up on here all the time, but I’m going to use it again. People will understand if the time period is mysterious and it maybe is going to be really bad, or maybe it will have a happy ending. And then I think that pulls on people’s emotions in a certain way, which is totally understandable. Like, this isn’t a criticism. But we have an idea of how to react to something like that. But when you’re like, “Okay, I have this chronic illness and it’s flaring, and I don’t know how long it will last for, and I’m not especially worried that it will be fatal. But I am worried that the rest of my life is going to be on this couch.” It’s not something that people have a script for how to engage with.
David: Yeah, and I guess that’s where I was really thankful that I have social media because I could kind of stay in contact with a larger group of people, even though I couldn’t see them, on the internet. So yeah, I guess I’m one of those internet-obsessed millennials, but it’s more out of necessity than anything, you know?
Brianne: Yeah. I mean, it totally changes… we end up talking about it on this a lot too. Like for me, I had really bad nerve pain in my forearms for a while, and I didn’t use my laptop because it was too uncomfortable. But so I stopped using facebook because I was like, it’s too much. But I loved using twitter because you could just put stuff out there and humans will respond. And that’s great. That’s a great thing to have happen. Compared to just whatever you’re watching on netflix. I had a question… Oh, yes. Okay. I had a question in that realm. Do you… So this might also be different because of your family, but do you find yourself engaging with support groups or chronic illness communities or anything like that? Is that something that you’ve looked at?
David: I’ve looked into it, and sometimes I find it useful, like I’ll go onto the crohn’s disease forum. I don’t really remember the name of it, but, you know, it’s just easy to find. But I’m always a little skeptical about that because there’s often a lot of unsolicited medical advice that gets thrown around on those places. And I understand that it’s coming from a good place where people want to help, but some of the things I find very intrusive and difficult to deal with, like people who say, “You should get off your medication and try this diet.” Ugh! You shouldn’t be saying that on the internet to people who are desperate and sick and just want to feel better. It’s not a good thing to do. So I’m always wary about treading into these spaces because there’s a lot of misinformation that I don’t wanna have to filter through.
Brianne: Yeah, that’s totally fair. I’m so interested in the unsolicited advice thing, which definitely happens on the internet, but also in real life. Have you run into that with with real life people that you know very often?
David: Yeah. Before this flare-up, I worked in a health food store so I got a lot of unsolicited advice about how to deal with my autoimmune disease by strengthening my immune system. And you know, they’re people that are trying to help you, and you can’t just stand there for ten minutes explaining like, “No, my goal is to kind of weaken my immune disease because that’s the disease. That’s what’s causing the issues is my immune system. So please don’t tell me how to boost my immune system to fight my immune system?”
Brianne: Like vitamin c is not going to help.
David: Yeah, it doesn’t matter how many vitamins I take in. It’s not a vitamin deficiency that I’m dealing with, it’s my immune system that I’m dealing with.
Brianne: Yeah, it’s confused.
David: Yeah that’s a light way of putting it, yeah.
Brianne: Yeah and I think the stuff related to diet is so frustrating for me because there’s like a lack of credibility on every side. So when someone comes in and they’re like, “Oh have you done this thing?” Which could be diet, which could be yoga, which could be whatever weird thing people want to suggest, there will be people on one side who are so skeptical of the pharmaceutical industry and the medical community. And then on the other side there are people who are super skeptical of anything relating to diet and other interventions who are like “No, you thinking that you can’t eat raw vegetables is just a myth and you’re believing those internet whackos and you should stick to your medication and then eat whatever you want!” Like somehow it comes from both sides. And that blows my mind.
David: Yeah, I got more of the like, “Hey, don’t trust big pharma” kind of stuff at the health food store.
Brianne: Yeah, sure. That would be the place for it.
David: But yeah, I’m sure there are people who say, “You don’t need to even consider diet.” Which like. I guess maybe more for other conditions, but for crohn’s disease, I’ve never had somebody say, “Hey, you don’t need to worry about your diet.”
Brianne: Yeah, it’s more obvious when it’s in your digestive tract, I guess, that your food is going to impact it. But it’s just funny. It’s like people are helped by all kinds of things, you just never know.
David: Yeah. And it seems like a very strange impulse to me to go up to someone and be like, “Hey, let me tell you how to feel better.” I couldn’t imagine doing that.
Brianne: The biggest part, the place where I fall into this trap – not in these conversations, because I’m able to identify that it’s happening – but like things that have helped me, I want to know if they would help other people. Which is basically the same, but like the smallest most obvious thing is that I eat gluten free now and it makes a huge difference. And I’ve known since college at least that I have a problem with gluten, it gives me skin problems. But I’ve been in this denial cycle about it. I was in a denial cycle about it for probably ten years. And that’s partly, I think, because there’s so much backlash media about it that’s like “Non-celiac gluten sensitivities aren’t really. And it’s just whoever trying to take advantage of people.” Anyway, whatever. It makes a difference for me. And so whenever someone has a problem that maps to what was going on with me early on, which is like eczema and other skin problems, I absolutely want to jump on them and be like, “Okay, but have you tried a gluten-free diet yet?!” Which I don’t do because it would be incredibly annoying. But I want everyone to read all of the books that I’ve read so that we can talk about them, which is my personality in general.
David: Yeah, I guess I probably have done some of that before, to undercut my own self-righteousness from earlier. No, I mean, yeah, I’m sure. I’m sure I have totally been like, “Hey, you should try cutting out raw vegetables.” To people who have had digestive issues. There’s a lot of literature out there that people always suggest to me. And I’m always really skeptical of it because unless it’s coming from somebody who has crohn’s disease, I don’t really want to take their advice in mind. I don’t know if that’s being dismissive, but that’s just kind a defense technique that I’ve developed.
Brianne: I think that’s fair. I mean, I have read a lot of paleo related stuff, for example, and I don’t identify as a person who eats paleo, but I’m just interested in health related books. And some of them are people who were pretty healthy before, and then they still noticed some changes, and now they feel empowered to give advice to people who are really sick, and that really gets to me. I’m like, “Oh, really?! Like your hair got shinier?! You think your shinier your hair is equivalent to not being able to walk?”
David: I mean, the shininess of hair is a major issue for people with chronic illness, for sure.
Brianne: Yeah, because of like malabsorption but also aesthetics. But like that’s why… so the Wahls Protocol, which I’m reading right now, which I don’t… I’m not like “Everybody should read it and then do it!” Although I do want to talk about it with people. But anyway, one of the things that I really like about it is that it’s written by somebody who specifically had the disease that she’s talking about. And so because she’s an MD, she is doing a lot of legitimate studies in order to explore if this is something that could help more people. So she’s like, “Hey, I do recommend these changes. Like, cut gluten cut dairy, eat more vegetables in this way. I think you’ll see a difference, if you don’t here are some other things to try. But in addition to writing this book to get this out there, I am conducting clinical trials.” And that part, I think, is really great, instead of like, “Well, now that my nails are stronger I wrote this book and everyone should follow my diet.”
David: Yeah, that sounds great. I’m on board with clinical trials for different diets. That sounds like something we need a lot more of. Because a lot of the diet recommendations I get are from people who only really have their own personal experience to recommend things on, which at times can be very useful. Like, I’ve definitely taken recommendations from the people in my life I know who have crohn’s disease and it’s helped or it’s not helped, you know. But I like the idea of being a little bit more methodical about it and having tests and trying to show why these things help. That’s great. That sounds really interesting.
Brianne: Yeah, the why is so compelling. I get superstitious of like things that when I’m at my wits’ end and so I just want to experiment with something while I’m waiting for other information or whatever. And it’s like, okay, well, I cut rice or something. And then at the same time as cutting rice I did a bunch of other things, but then it’s like, “Oh, I can’t eat rice anymore because it might have been a part of the problem.” And that is just an example. But it happens with all kinds of stuff. Like I have an intense water filter or I keep all my food in glass containers now, because at one point I’ll have heard something, and I’m like, “I might as well try it.” But the things that I might as well try really start to add up into an absurd amount of superstitious unproven habits I would say.
David: Yeah, yeah, especially if you’re doing elimination dieting like that. At least for me I know when I have a bad experience with something I’ll eliminate a lot of things all at once. And then I’m like, “I eliminated too much! I have no idea what it was that was causing the issue now.” So I have to reintroduce it again and slowly be methodical about eliminating one thing at a time. But when you’re not feeling well, you just kind of push everything away in hopes of finding some relief.
Brianne: Yeah. I’m terrible at being methodical about elimination diets.
David: Because sometimes, especially if you’ve been on a really stringent diet for a little while, you just kind of have that urge to just break it and eat something that you might enjoy for once. And then you feel bad afterwards, and you’re like, “You know what? Life is like this I guess. I have to sometimes eat things that I enjoy, even though I feel horrible afterwards.”
Brianne: Yeah, and then try to manage the part of the horrible feeling of guilt, like I’ll end up getting moral feelings too.
David: I haven’t even considered that. I might have to think about that next time.
Brianne: Yeah, I don’t have an answer for it, but I just notice it. It’s like sometimes I’ll also feel bad because I’ll turn eating whatever it is, eating this cookie, mentally it becomes like an act of self harm. And it creates this other cascade. Not all the time, but sometimes, depending on what my brain thinks is happening with food, which varies week to week. Man, bodies.
David: Yeah. Yeah.
Brianne:Okay. So is there anything that you’ve thought of either from I know you’ve listened to a few other episodes, or while you’ve been thinking about this, or while we’ve been talking that hasn’t come up yet? Just related to any of this stuff?
David: Yeah. I mean, the only thing that I find super interesting that we’ve only kind of a little touched on was the natural health industry. Because I’m very skeptical of it, and I find it really difficult to get on board with. But there’s a lot of people with crohn’s disease who have these remedies that they like to use. Or, you know, there’s people who subscribe to this whole idea that if you just change your diet, everything will get better and you don’t need medication. And I think it’s strange because my experience has been the exact opposite, that I’ve only ever found relief from medication and from pharmaceuticals. And it’s a weird kind of co-vilification that we have of each other where I’m like, “These people are just peddling oils and ointments for dealing with something that’s a lot deeper than that.” And these other people see me as some shill for big pharma. And it it feels wrong to be that antagonistic with each other because there’s got to be some overlap. And I’m interested in trying to figure out how to get past the antagonism to something a bit better. Trying to take back the word holistic medication from the crystal healing people. It’s something that I find myself thinking about a lot of the time because I want to partake in things like meditation and yoga for helping me deal with my illness. Or, you know, certain dietary trends, things like that. But also have them integrated in a larger format where you’re not telling pharmaceutical companies that they’re pure evil. They’re only mostly evil, you know, like the products that they produce do help people. And we shouldn’t vilify people who rely on medication to deal with these issues.
Brianne: Yeah, yeah. Totally. And I wonder about what the future of the medical industry looks like and how it plays into that, because right now, part of it feels like it’s all so divided. Like I could go to my primary care practitioner, and this has been in my experience with a lot of doctors that I’ve seen, and they are going to be completely disinterested in anything related to diet, anything that feels like it might be on the alternative medicine side. And so you’re like, “Okay, well, I have to choose.” Either I’m going to follow the instructions of my doctor or I’m going to find an alternative practitioner, which is maybe a naturopath, or maybe like a functional medicine practitioner in the States. And there’s way more to unpack there, frankly, because in different jurisdictions, these kinds of practitioners have different powers, we’ll say. So in some states, naturopaths can do testing and they can prescribe pharmaceuticals so they can actually take what I will call a more holistic approach. But in Ontario that’s not true. So seeing a naturopath in Ontario could be really helpful for some people, but they aren’t going to have access to that full picture either. And it’s like, it’s weird to me that it feels like before you even get to try or learn about the options available, you have to pick which camp you’re going to be in. Does that make sense?
David: Yeah. And I guess I find myself being maybe a little bit to antagonistic to the naturopath way of going because it seems from my experience to be less effective. But I guess you know, whatever works for somebody is what I really want to support. I want people to feel better. I don’t want to be right about this. I guess that is kind of difficult because that often spills out into like this kind of sectarianism of people who are like, “Well, naturopathy works for me, so it should work for everyone!” And they start coming up to people and saying, “No, no, you don’t need your medication!”
Brianne: “Put down your medication!”
David: Yeah. And I guess trying to figure out how to bridge that divide is something that I think about a lot and I haven’t come up with much.
Brianne: No, no. And I think there’s also a part of it is that with, I’m going to say most, chronic illnesses, we still don’t -when I say we now, I do mean the scientific community – still doesn’t know a lot about the pathology. So, like with autoimmune conditions, they’re named after what your immune system is attacking, basically, but they don’t know why it’s attacking that. And so, in the absence of a really clear pathology, it does make sense to me that different people would be helped by different things. And to look at a couple other autoimmune diseases for a second, with hashimoto’s disease or type one diabetes, which are both autoimmune diseases where your autoimmune system is going after something that makes something that you need. So like with diabetes it goes after your pancreas and maybe you won’t even be able to make any insulin because it gets that far before you find out. Or with hashimoto’s disease it goes after your thyroid and so you can’t make thyroid hormone anymore. And those are things that you need. And so if you catch it really early, it may be true that a dietary intervention will really slow down the damage and you don’t need a lot of medication. But if you catch it at a different stage, no amount of kale is going to make up for the fact that your body can’t make insulin or can’t make thyroid hormone anymore. Simultaneously, these things are both true and different people’s bodies are in different places. They’re doing these things for different reasons. I don’t know. Does that make sense? That’s not an answer but it’s how I’m starting to think about it.
David: Yeah, that’s a good way of thinking about it. Almost like a dialectic between pharmaceuticals and naturopaths. Some sort of synthesis of the two, I don’t know.
Brianne: Yeah, like I mean, when you talked about how you eat, like not eating nuts or seeds or not eating raw vegetables, things that irritate you. And it seems like a lot of autoimmune diets, that’s kind of where they’re at. They’re like, “If you need to cook vegetables, cook them, but probably try to eat them because the nutrients are good. And less grains, because we find that grains, nuts and seeds, which are all slightly different but overlapping in their function, because we find that they irritate people.” Like, find out what irritates you. I don’t know, it’s hard.
David: Yeah, it’s tough when the advice you get is “diet as tolerated.” And then you’re left in this world of a variety of different diets that claim to help. And you kind of want to try something and stick to it for a little while, just to see if it actually will be helpful. And then, you know, you don’t feel as great as you think you might. And so then you give up on that without giving it a full try or something. You know, dieting is…
Brianne: It’s super hard.
David: It’s a mess.
Brianne: It is. It’s totally a mess. And it’s understudied for sure. And then I also think that a piece that plays into this that can be really interesting is that everybody’s diagnostic experience is different. And so, some people might feel sick for years before they get a diagnosis and that means that’s before they have access to medication. And so I think that there’s a real, a real desperation, frankly, but also a real market for things that you can access yourself, so we can call them over the counter but I don’t necessarily mean drugs. Like that’s where diet is. That’s where a ton of this alternative stuff is. And so if your doctor can’t tell you what’s wrong, but something’s not working, you don’t actually have access to pharmaceuticals, not really. And so you’re left to choose from this other marketplace of some things that I think really do help people and some things that are probably garbage. And then trying to figure out what works from those offerings. And that really muddies the waters.
David: Yeah, I guess I’m coming from a position of having known what my disease was before I was even diagnosed so that probably colors my perception on this quite a bit.
Brianne: Yeah. I mean, I don’t think anybody is clear on this stuff. I think it’s super interesting, and I’m definitely into both, I experiment with my diet all the time, and there are some pharmaceuticals that have really helped me. Like, both things are true. I think both things are true, but I definitely find myself getting trapped on one side or the other all the time, depending on who I’m talking to probably and what their attitude is.
David: Yeah, totally.
Brianne: It’s easy. I don’t know. One thing that I keep saying that I should learn more about but haven’t actually done is I think that Germany’s healthcare system specifically is a lot more integrated. So I think that they have, like, more studies about supplements, or how vitamins impact people and even nutraceuticals like herbs and stuff. Like, I think that they are a country that is actually studying this and and hopefully parsing out some of what’s valid and what’s not. And then in their medical system you can go to one doctor to get a more diverse variety of recommendations. If that makes sense, that’s my impression. I could be wrong or I could be misinterpreting, but I think it’s Germany, and I think it’s more like that, which is super compelling to me. Like, what’s the future… This is an answer that neither of us will have. But like, what is the future of the medical industry for even accommodating… I think a ton of people just kind of vanish because they give up.
David: Yeah, there was, I think it was the CBC that put it out recently, an article saying that biologics are the largest growing medication prescribed in Canada, and they’re super expensive, and we don’t know how to deal with it. And especially with the way that the Ontario government has been going lately. My access to this medication feels threatened because it’s so expensive and more people are getting on these medications, increasing the expense. And how do we maintain a healthcare system when people keep getting these diagnoses and these expensive medications? Like something’s going to give at some point. And, you know, we gotta hope that it gives in a good way, in the good direction. Because otherwise, there are a lot of people who are going to be very, very sick.
Brianne: Yeah, yeah, totally. And I think it’s currently an under-documented demographic. Which is just interesting. But yeah, and I think it matters both on the healthcare side because of the cost of healthcare. But it also matters on the employment size, like, we can’t really nail down what accommodations would look like or what a job would look like where someone could participate. And not because I think that everybody has to earn their place in society, but because I think a lot of people are trapped in this middle zone where they want to be doing something and also want to be generating income, and that option doesn’t isn’t really clear right now.
David: Yeah, it’s hard to feel productive when productive for you is getting out of bed in the morning and getting dressed. Like it’s hard to feel integrated in the larger society when you can do so little everyday.
Brianne: Yeah, yeah, and and I’m all for creating more awareness and acceptance about that. Like I don’t think we all have to do the same amount of labor all the time or whatever. But there’s definitely a middle zone where you’re like, “You know, I feel pretty good today. I would love it if I could contribute to the world around me in some way, and I’m at a loss for how to do it.” Or like, “I would like to buy something for myself. And I am at a loss for how to earn the money to make that happen.” Or ease the burden on the healthcare system. Like, there’s a bunch of places where I can imagine cultural shifts being needed.
David: Yeah, yeah, I think about that a lot, too, and I come up with no answers. It’s tough. It’s a big question that we can’t answer individually that we need to answer in a larger group, in a larger context. But yeah, it’s tough. It’s tough to think about.
Brianne: Yeah, and then okay, I have one other way that I want to phrase that question. Then we can leave it hanging open. One way that I’ve been thinking about it right now is that I’m transcribing all of these episodes. And so I use amazon web services, which has a machine learning thing that will convert the file into text. But what it spits out is a giant paragraph for, you know, an hour, an hour and a half long conversation, all in one paragraph. None of the Is are capitalized, which makes me nuts, but is an easy thing to fix. And so it takes a long time to edit that file. And I’m like, “Okay, well, that’s a thing that I’m doing right now because accessibility is important and it makes it searchable and there’s a whole bunch of reasons.” But it would be really cool if one day somehow I could pay somebody else to do that for me to clear up my brain space a little. But if I wanted to do that, I would love to pay somebody from the community, so somebody who is disabled or has a chronic illness or whatever. And then I’m like, how would I – I’m looking for not an employee, but a subcontractor – how would I structure it to even model this? Like there are kind of hard deadlines, but maybe I could do a whole bunch at once, but someone could work on their own schedule. Like I don’t even know when trying to create a small job. I don’t even know how to structure it in a way that would be supportive, because I don’t know what I would want if I were doing the work. Does that make sense?
David: Yeah, it’s trying to imagine something that’s kind of radically different from the way that society is structured right now. It’s hard because when I try to think about what I’m going to do when I’m not sick anymore, it’s hard in the same way because you’re trying to think about something that is almost unthinkable, right? Like you’re trying to break through these hard walls of thought that we have that are structured in our society. Like how do you have a business that accommodates people with your own issues when the bare fact of accommodating the issues due to chronic illness kind of run contrary to the structure of a business? It’s hard to think about. It’s hard to consider and even imagine. It’s tough.
Brianne: Yeah, and I will say, not that I have budget right now, but if anybody’s listening and they have ideas for how to do it, I would love to hear them because it is something that I’m thinking about eventually. Like some of the transcripts take me three full days and I do have a couple other things that I’m trying to do right now that might generate income. So I might be able to pay somebody else to get those days back. In which case, how the heck do I structure it? I have no idea. So I’m open to suggestions about that for the vast future from now, when I can afford to pay someone for like, three days of work, which is much. Although it probably doesn’t take that long. That’s also my own brain getting stuck in stuff. But, you know, yeah. Well, I think that is the full scope of things that I have to ask about. If there’s anything else that you have in there, go ahead. But if not, thank you for talking to me!
David: Yeah, I don’t really have a whole lot else to talk about.
Brianne: We covered lots of things.
David: I think so. Yeah.
Brianne: Yeah, we absolutely did. That’s wonderful. Okay. Thank you!
Thank you for listening to episode 13 of No End In Sight! I’m excited to share even more stories with you in the new year, so make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts.
If these stories have been resonating with you, then I would absolutely love to talk to you. At this point I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives. You can get in touch by visiting NoEndInSight.co or by contacting me @bennessb on Instagram and Twitter.
I also just made a dedicated instagram account for the show if you want to connect with me there! You can find it @no.end.in.sight.pod.
And don’t forget I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.
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 just started working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.