Episode 2 – Erica

A stylized purple hexagon with the text "No End In Sight" in the center over a green background.

Erica talks crohn’s disease, well meaning friends, and the challenges of working with a chronic condition.

Transcript

Erica: My latest is nut allergies, which I never had my entire life and it’s only when I feel the worst. So, when my immune system is fighting the inflammation in my body. If I eat a pecan, my mouth just explodes. I don’t have anaphylaxis, fortunately, but it’s a reaction. 

[guitar riff]

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

Today I’m talking to my friend Erica about her experience with Crohn’s disease. We talk a lot about well meaning friends, adapting to your new reality, and navigating a working world that was not designed for people living with chronic illness.

We actually recorded this interview almost a year ago, right after I stopped working but before I found out that there was toxic mold in my house. If you want to hear more of that story, check out Episode One.

I apologize in advance for all of the background noise. My in laws have a surprising number of chiming clocks in their home, but you’ll only hear those in one other episode. I’m brand new to the production side of podcasting, so please bear with me while I learn how to make a clean and even recording. It’s a work in progress!

And of course I’ve got a quick 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: Hello Erica! You, I believe, did you get sick in high school? Is that right? Or was it earlier?

Erica: It was earlier. I was sick when I was 11 years old. Along with moving to a new town, which at that age is a huge deal. That same year I got really sick with this horrible virus, and then slowly the next year after that a lot more symptoms started to manifest themselves. So yeah, the whole thing was probably my seventh grade year.

Brianne: Okay, so you first got sick with something theoretically unrelated. And then did you go and get treated for that, and keep not getting better, and have to keep trying to explain that you didn’t feel better, as a kid?

Erica: Yeah.

Brianne: And try to negotiate that? Because did it take a while to figure out what was going on, or did they think that it was other stuff?

Erica: Oh yes, for sure. So the virus was one thing, and the only reason I mention it is because my mom thinks it’s connected to my body fighting off a really bad infection. It was really bad. It was a virus and I had it for about a week and I just had sores all over my mouth and it was basically the sickest I’ve ever been. For me, I think that what I have has been in my body since I was a child, in all honesty.

Because I remember being in first grade and my parents thought that I was lying when I said I had a stomachache, so they gave my teacher these fake peppermint pills. So I thought they were tums, but I would take them and I wouldn’t feel better, you know? And they thought I just had an anxiety thing about being away from home and I was just, you know whatever. But looking back on it now, I think that I really was not feeling right even then. And I didn’t know exactly what it was.

Brianne: Yeah, as a six year old.

Erica: Exactly. But that kind of faded away as I got older. But then when I was 11 or 12, the issue that made us all question what was going on was that I had really high fevers and I was losing weight. And those two things were enough for my parents to be concerned and to ask doctors what was going on. So it starts with a general pediatrician, they don’t know, they send you to someone else. They thought I had bone marrow cancer, leukemia. It could be I was just anemic, there was a huge range of possibilities.

Brianne: Did you get treated for things, or were you tested and tested and tested?

Erica: Lots of tests at first to rule certain things out, and then it came back and they figured it out. At the time I didn’t really feel sick in that way, the way that they had told me you have this disease that attacks your intestines specifically, or your digestive system, makes it inflamed. And I thought, but my stomach doesn’t hurt right now. So me and my mom didn’t know if it was right, but then as I got older it has definitely made itself known, yes this is exactly what it is. And at the time it was not so clear exactly.

Brianne: It didn’t feel any more obvious or true than any other diagnosis that you’d been given. And for Crohn’s is it with a scope?

Erica: Yeah, they had to do a down-my-throat type thing and they take tissue samples and then they test them.

Brianne: Yeah, and they’re looking for tissue damage I think, because it’s similar to a celiac test.

Erica: They take the samples and then the samples come back and they tell them it’s inflamed is basically what it is so there’s inflammation.

Brianne: And then for autoimmunity, do you start on immunosuppressants? You’ve probably tried a lot of drugs by now, but at the time?

Erica: I think I started on some pills and that was all I had to do was take three pills a day or whatever. And that was maintaining it and it was fine, and then as things got worse I started to have to look into things like immunosuppressant drugs. So until two or three years ago I was on a chemotherapy drug for over 15 years or 16 years. I mean I didn’t notice the effects, it’s not like when you actually get a huge round of chemo, when you’re nauseous and all that stuff. But that’s the level of medication that is common.

Brianne: So that’s that’s such a long period of time, and in addition to the nut allergy we were just talking about, you’ve been hospitalized before. So does it operate in flares, is that typical?

Erica: Yeah.

Brianne: So you’re fine, you can eat whatever you want without a problem, and then sometimes it’s sensitive and you have to do something about it.

Erica: Yeah. For me when I was younger – I think until I got to grad school – it was pretty well under control.

Brianne: And were you always taking the same meds?

Erica: No. It’s been a moving target. The problem with the medications I take and what my body does, because I guess not everyone’s body does this, but mine tends to get used to a drug and then it builds up antibodies to it and then it no longer works anymore. So I have had, I don’t know, six or seven different types of drugs that they’ve tried. And things have worked and then they don’t work and then I’ve had ones that I tried that didn’t work at all. I would call those the bad years.

Brianne: And is it pain? Mostly pain, indigestion, weight loss?

Erica: Yeah. Imagine having the stomach flu for months at a time. You’re not always vomiting, it’s just your stomach hurts in that way and it’s just unpredictable.

Brianne: But it felt mostly controlled until grad school? Because you were hospitalized?

Erica: Yeah I was hospitalized three times over the course of my condition I think. The worst time was when I actually had to get surgery when I was in college. It was my second or third year of college. One of my medications was causing a lot of skin issues and so anytime I went in the sun it caused these horrible rashes that just burned my skin, they itched, it was awful. So in my mind I thought I’d stop taking that and see what happens. Well, my body did not like that at all. In hindsight with the skin thing, I would have been ok if I just didn’t go out in the sun. But it caused a hole in my intestines. So it had gotten to a point where it was so bad, it was causing so much inflammation, that it created a hole. And that is painful because your food leaks out into your body.

So you basically just don’t eat and I didn’t eat for weeks because they didn’t know what the issue was at first. They knew I was having pain but specifically they weren’t sure. And then they saw in a scan, you have to do that thing where you drink stuff, and then they could see something going out into my body that’s not supposed to be there. So they figured it out. But that was the major surgery.

But then I’ve had to go a few other times just because my medicines weren’t working properly and I had to get a round of steroids basically. And an IV level. So a lot.

Brianne: Do you think that with something like deciding to stop taking your medication, there’s a piece of it that’s feeling like other people get to do this thing of going out the sun, and it doesn’t make sense that I can’t do it either! Like, 100% compliance when other people aren’t even thinking about this issue, I reject the notion that my body can’t figure it out.

Erica: Yeah, being 20 years old and all your friends are going out. I think I specifically remember it being around the time I went on vacation and I was with my friends and I felt like this is ridiculous, why am I doing this, I feel fine. And then obviously I had the repercussions of that action play out.

Brianne: It turned out not to be totally true.

Erica: So it wasn’t exactly fine. I think especially when you’re not seeing the effects of it, it seemed like at the time it wasn’t necessary and that I had complete control over what was going on in my body. But you just don’t. And you don’t know, you can’t predict what’s going to happen.

Brianne: I think one of the hardest things with probably all chronic illnesses is that by the time you have a symptom that’s obvious to you a lot of damage has already been done. Which could be pain, or a lot of different stuff will manifest as skin problems because they’re inflammatory reactions that are visible. And if it’s gotten to that point it’s easy to think that this is the first sign of the problem and you’ll just manage this. But no, this is very downstream of the original problem yeah.

Erica: And I think we’re talking about a lot of conditions that are related to your immune system specifically. So what I have is related to arthritis which is related to eczema which is related to you know, all these conditions that are controlled by your immune system. So the medicines I take, people who have eczema or psoriasis or whatever take the same thing I do. Obviously at a lower dose but it’s all connected. So when I would take certain medications some of the symptoms would be really bad rashes or your knees or your joints would hurt really bad. And I’d have all of that happen because of the side effects.

Brianne: Have you cycled through trying other lifestyle interventions and stuff? As you know it’s something that I’ve done a lot of, and for sure it’s something I’ve done so much of because I’ve had so much trouble with doctors themselves. Because I had so much trouble getting diagnosed and getting taken seriously with symptoms. I’m optimistic right now that I may be about to take some pretty heavy-duty antibiotics that will be helpful but previously everything that I’ve ever been prescribed has not made a difference or only made me feel worse, and so I got to a point where it felt like radically changing my diet, radically changing some other stuff about my life was my only option.

So I’m curious about what other people do because there’s such a range of some people who probably get one medication once and it makes them forget that they have a problem and then people who don’t get taken seriously at all, and then somewhere in the middle. So have you run many experiments on what to eat, meditating, whatever it is?

Erica: Yes and it’s funny because there’s been two waves of my severity of symptoms in which I’ve thought okay, I’m going to try something different. The first time was when I was not having as much of an issue.

So another thing to talk about is the fact that when you’re sick a lot of people want to help, they want to give you advice and they want to tell you what other people have told them works for them and that should probably work for you too right? And it’s coming from a good place but it’s not always the most… you know it doesn’t always work. Especially for someone who has something that’s probably more severe than someone else who doesn’t.

So the first time was when I was first diagnosed I tried a whole bunch of more natural pills. So aloe vera capsules and a lot of herbs and things that that might help to pseudo replace my medicine which you know, I never really took so that didn’t really help but whatever. I’ve tried going to a chiropractor I’ve tried therapy but that’s a separate issue.

Brianne: But I think very related to something where your life is always going to be different than your peers. And you get to grieve and hopefully accept that.

Erica: I went to someone who specifically knows about my condition and so it was more of a medical situation that we’re talking about it clinically. What else have I done? I feel I’ve done a lot of things. I’ve looked into acupuncture. I didn’t actually do it because my insurance didn’t cover it or something like that.

And I actually looked into, when I moved here a few years ago I was on a medicine that my doctor was trying but it was just not working for me at all. So they want you to try it for six to eight months and so during that time I was on this but I was also on steroids which are terrible if you take them long term. they’re horrible for your body. It messes with your mind and your emotions and your face and just how you feel as a human being. It makes you feel very different than your normal. So at that time I was also just desperate because I wasn’t feeling good and I decided to look into medical marijuana, because that is something I would think might help me. At the time it wasn’t legal in Illinois so I couldn’t get it, and I looked at trying to get in Michigan but I couldn’t because I also wasn’t a resident there anymore. It was a path that I had wanted to try to see if it would help. I mean, I think it would have only been helpful in smaller instances and not fix the whole problem. But on a day-to-day basis when you just don’t even feel like eating food, that’s when something that is helpful.

Brianne: I think now it’s still a state by state thing, but on corners of the internet where people are talking about chronic illness I seen more and more people wondering about CBD oil. Which is the won’t-get-you-high version of marijuana. And if you’re in a state where medical is legalized there’s more and more products coming to market all the time. So probably that is something that we’ll know more about really soon. Although I think on the CBD side that’s more pain management compared to appetite stimulation. Or people prescribe it for anxiety a lot too. You know if you’re really sick and you’re… in my case, frankly, I live in California where it’s fully legal. And on days when I wake up in pain and the only thing that I can do today is watch tv all day, which is a pretty depressing activity. When I’m really sick – and I have not been in the hospital but I imagine being in the hospital’s like this too  – when I’m just lying here staring at a tv which literally makes time pass, but anything that could improve that experience would be really great for a short term. Because on days and I don’t have to lie here then it’s fine, I don’t choose to watch tv unless I’m not up for anything else. It’s interesting. That’s my side rant on those things.

Erica: It’s a recent thing because there was a place that actually opened up down the street from where I live that has CBD stuff. There’s a pot leaf on the outside, so I thought it might be a medical dispensary. But no, this is something different. So I looked into it and actually I’ve been wanting to go in just to see what they say, if they know anything about someone with a chronic condition, and if they can recommend anything. Because it would be nice to have on a day when you just feel like garbage. Because what can I do other than take what I’ve been prescribed.

Brianne: That’s such a good question. And I think the thing about other people wanting to help is a really on-point statement. I think if people are only familiar with illness in one way, they think it’s something that really can be solved. And they might think “I want you to be better so that our friendship can get back to normal and so I’m going to keep suggesting things.” And it can get so exhausting. Because it gets to a point where it feels like victim blaming. That by suggesting new things for me to try all the time, you’re suggesting it’s my fault that I’m sick because I haven’t tried every single possible thing that’s ever helped anybody. It’s a lot of work. It’s actually a lot of work for most of the things make no difference.

Erica: Yeah exactly. And then you’re out money and you’re out time. It’s one of those things where once I got to a certain point I just didn’t even…  I don’t really invest in it. It sounds bad but if someone says “Oh, I know someone who has it and they do x y z.” I just don’t even really, I don’t even invest in it. Because I think that, I don’t want to sound… this sounds good and bad, but it’s just I know my body and I know that I think I have a worse condition than probably more than 70% of people who have what I have. There’s people who have it way worse than I do who have the colostomy things and that’s their life and they’ve had a lot more surgeries than me. But I know the only thing that helps me right now is actual prescribed hard medications, unfortunately. My body’s now dependent on it so there’s nothing that I can even do if I wanted to. I have to continue to take it, you know?

Brianne: So how, especially because yours is really directly digestive, how does food fit into the mix? Because I definitely know and I’m sure you know, there’s a million different dietary protocols that you can try. And I do, I think that they are helpful to a point. But I also think that they’re anxiety inducing. Is that something that you play around with very much, or is it mostly exhausting?

Erica: That’s another thing that at first I did do quite a bit of. But I think you kind of learn, especially with what I have, unfortunately is very cut and dry. There’s something called the FODMAP diet specifically for people with inflammatory conditions. So I did that for a while, I’ve tried other things, and the only thing that’s really stuck for me is being vegetarian. And for me it wasn’t an ethical thing as much as it was an actual physical choice.

Brianne: You found meat hard to digest?

Erica: Yes exactly, and red meat specifically. And I just didn’t see the value of continuing to do something that I didn’t think was good for my body anymore. But there are things that I know that I have to make adjustments for, like no fresh things on certain days. It’s just a constant going back and forth about okay I can do this today but I can’t do this tomorrow. It’s a kind of gauging I guess, constantly.

Brianne: FODMAP I have not spent a lot of time paying attention to, but I know it’s about what ferments inside of your digestive tract and avoiding onions. It’s kind of like avoiding nightshades, it’s a really mysterious list of things because it’s not a food family but it’s just fermentable whatever whatever. I’m sure this is something I could look up if I wanted to explain it.

Erica: But yes it’s it’s very specific and I have no idea how much validity it has. It’s not something that I felt like oh this works for me forever I’m going to continue to do this.

Brianne: But it absolutely works for some people. Which probably has to do with your natural microbiome and what’s in there.

Erica: It’s based on science so it’s not something that’s oh this is going to help you lose weight. I actually read an article about it when I was on the train on my news app, and it was something about that, it specifically said I hope this does not become a fad diet because this is not meant to be that. It was explaining what it was and stuff like that.

Brianne: I get so mad at the articles about gluten-free diets that say gluten free is actually bad for you! Where people are just trying to find new hot takes on something over and over again. Just let people eat what they want to eat. Yeah sure, I believe that there are people who eat gluten free because they think it will help them lose weight. But if you just eat gluten-free products that are made of rice and corn instead, it’s going to be the same as whatever you’re eating. Are there people who don’t pay attention to the science behind this stuff? Sure. But are there people who legitimately benefit from these interventions even if their GP tells themm it won’t make a difference? Yes! Relax, people who write about this for a living. And now nuts, apparently. Now nuts are out.

Erica: Yeah, some days. Like I said, it’s a moving target. I think it has something to do with the level of inflammation in my body. So if I’m feeling really crappy, those are the days I probably shouldn’t go near nuts.

Brianne: Like, nuts and seeds and maybe even legumes, stuff in that family can be tricky to digest.

Erica: Yeah I got a a skin test last year and he’s said “Oh yeah, you are allergic to specifically almonds and pistachios and things like that.” But sometimes I can eat them and nothing happens. So I know I probably shouldn’t, that’s probably not a good idea.

Brianne: I still definitely occasionally… I eat gluten free, I pretty much eat grain free because I have skin problems if I don’t, but I will eat cupcakes sometimes. Whatever, you also have to live your life sometimes. Even if people who aren’t sick think that you’re just making yourself sicker by doing that.

Erica: No judgements.

Brianne: Yeah, relax. Okay, so that way so that’s my final question on the list, and I forget how I phrased it. Have you noticed since getting sick, and for you it’s such a big part of your life, but I’m sure every time you go into new environments it matters. How do you feel it impacts relationships, or was it tough in your family? And then was it tough making new friends at school while being really sick? Any version of this question that make sense to you, basically.

Erica: There’s so many layers to that question, because there’s so many different types of relationships. I’d say for me and my mom, specifically, it’s definitely brought us closer together. Just because she is in the medical field, so she has an understanding of what’s going on. And she’s also the person that talks to me the most and checks in with me about it the most. No one else really, like my dad or stepmom or whatever, really checks in with me on that.

Brianne: Is’t not really in their consciousness?

Erica: No, I mean they’ll remember every once in a while and unless I bring it up it’s something they probably semi forget about because it’s not in the forefront. Not that I think they should constantly be asking me because that’s annoying too, but you know, they just don’t fully understand it as much I don’t think. But my sister who is also a nurse, I think has a little more understanding and empathy about it too because she’ll ask me a lot about it. Because she understands what it means to have it and to live with it. She studied nursing, she knows a little bit about these things.

But friendship-wise it was never that difficulty because it’s never something that I talk about until I’m comfortable enough with that person to tell them. For instance, I started a new job five months or four months ago and nobody at my job really knows what’s going on and I try to keep that separate as much as I can. Because I think when you’re in social relationships that’s the one time that that doesn’t define me. Everyone else who knows me knows that about me. And these people, they don’t know. It’s fresh.

Brianne: You get to be a regular person as long as your body doesn’t need accommodations.

Erica: Right now I have an appointment on Friday and I have to be gone all day. So I had to tell a couple of people. And they say “Oh my god, are you okay, is it something serious?” And I don’t want to talk this. It’s nice that you’re concerned but I don’t really want to get into all that. It’s a hard line to toe because I don’t want people at work to see me like “She can’t do this because of this.” I don’t want to be seen as somebody who can’t accomplish something that is a team goal or something that’s required for a project because of this, but at the same time in periods when I feel the worst I’ve realized sometimes that might not be realistic.

And it may not be realistic for me to think that I can do the same things that everyone else can all the time.

Brianne: Which is hard. It’s fucking hard in your thirties and in your twenties when you started working. You think “Oh yes, I’m young I should be able to do whatever I want, my body should respond the way that I want it to.” And I’m interested in the question of disclosure. Because when you’re healthy you don’t want to tell people because it feels like it doesn’t matter but something that always would be tough for me is that if I wait until I’m sick, then it sounds like it’s out of nowhere. Which I guess, screw those guys if they think you’re making this up. But it’s such a weird thing to navigate.

Has it been a thing for you with dating, too? Figuring out when to tell people, or was that not…? It wasn’t a big enough problem that you thought about it a lot. I’m just curious.

Erica: No I definitely thought about it a lot for sure. Because there have been times when it wasn’t a big deal and I’m just going out with people. This is something that is not a topic that would ever come up. And for me it’s always been pretty natural, when it’s the right time I can say “Oh yeah there’s this thing.”

Brianne: Or if you’re spending enough time with someone that they’re familiar with your medication schedule.

Erica: That’s always the ice breaker, you’re bringing a baggy full of medicines over and they say “Wait, what’s all that?” And it’s like “Oh yeah, I need to take these to live.” But I don’t think that at first it never really was an issue. On a first date why would I ever, most of the time that’s something so personal it’s not something I want to share with somebody unless I felt it was going somewhere.

Brianne: Yeah and you don’t need to incorporate it into your day-to-day life. A thing that I always think about is the Babysitter’s Club movie. I feel like lately I’ve been talking about this a lot but I haven’t rewatched that movie in at least 10 or 15 years. But one of the characters in that movie is diabetic.

Erica: Oh yeah!

Brianne: Do you remember this?

Erica: Is it Stacy?

Brianne: Let’s say that it’s Stacy. That’s definitely one of them, it’s the blonde one, she probably is named Stacy. But she’s diabetic and she also is a youth, she’s not an adult, but she goes on a hike with a cute boy and doesn’t doesn’t bring her insulin or doesn’t bring snacks because she just needs something on hand. Anyway and then she has an episode and he’s completely unprepared and the whole thing escalates so much more. And it makes me think shit, there are some things where you need the people around you to immediately know and there’s a calibration depending on how much time you spend with someone and what may conceivably come up. It’s all interesting to me. Always, and also right now.

Erica: Yeah it is. It’s so funny because I’ve had this for over 20 years. And to be honest, I’ve never talked to anybody who has the same thing I do. Not once, ever. And that’s always been something that I’ve been curious about, and recently I’ve been wondering if I should go to one of these meetings. But then I don’t know. Do I want to invest my time and energy into meeting someone who has the same thing as me to talk about this thing that we both have that we both think is terrible and we don’t want to talk about it. But lately I’ve been grappling with if that’s something I should do. um

Once I did a, you know how they have walks and runs for people with… cancer and for everything? So I did that for what I have once, and my family came, and it was nice. But I haven’t really done anything to engage with the community of people who have what I have. And in a way I also disengage from doing a lot of hardcore research about it. Even if it’s just a defense mechanism or if I look at it it will be more real. I’ve done some periodic things, but nothing that’s super in depth. I think it’s because I also just don’t want to know in a way. Is there something, am I doomed to have this happen to me? I don’t want to think about that type of stuff.

Brianne: Right, what’s the worst case scenario. Having gone down so many rabbit holes now I get super researchy, because if you have something that works you don’t need to. And if you’re trying to find something that works then maybe it’s not non optional, I’m also an intensive reader. But on the one hand there’s finding out what the worst case scenario is and terrifying yourself, and then on the other hand there’s finding for yourself instead of from well meaning friends other things that you can maybe do that might help certain things. And then you can still create that trap for yourself of wondering am I not doing enough? Am I not doing enough to be better? but I don’t know.

I’ve recently spent more time on the chronic illness subreddit which is super broad, and then there’s facebook groups for literally everything and I don’t know that I would necessarily endorse them because there’s such a broad population of people on facebook. But it could be a good toe dip compared to going somewhere and getting stuck in a room with these people whether you like it or not. I can just passively read the kinds of conversations people have when they all share this thing and see what they say. I think it’s some combination of commiserating, sharing research articles, and talking about medical experience.

Erica: I’ve read things people have posted before and responded every once in a while. Because people have questions about medications and how that worked for them, but the problem with doing that is everyone’s different so telling someone that something didn’t work for you doesn’t mean it’s not going to work for them. So that’s a hard thing. But I guess if they’re looking for all of the possibilities that could happen with taking x y and z or whatever, that might give them an idea of what might work. But then it might not, it just might not work for them because everyone responds differently.

Brianne: And then there are always some people who act like I’ve had this condition for my entire life and it dominates all of my time and mental energy and I’m here to tell everybody else how to do it.

Erica: Yes, I’m the person you only passively dips a toe in the pot as I’m walking by. Just “Hi, okay I’m going to leave now.” I don’t want this to be my whole life. But recently since I’ve been feeling not so good, and that’s why I’m going to have a procedure done again on Friday, I’m coming to realizations about what what my limitations are and what my future even really looks like. It’s scary to think about the fact that what I’m doing for work sometimes makes me very anxious.

When I have to be in a car for two hours and I don’t think I can do that. Or I’m just going to not eat the whole day before. Things like that. I have to readjust my life based on my job and I really don’t like having to do that. And sometimes I wonder is this just not going to work out? Because what I’m doing, the hours, going to work downtown and having to commute, are those things and I’m eventually going to have to give up if I don’t get better? And how do I do that? I have to still have a job. How do you navigate what your physical limitations are with your career? And I’m sure you’re in a similar situation being that you said you were taking some time off trying to figure all this stuff out. It’s frustrating feel like why can’t I do what I know I can do, but my body just won’t let me right now.

Brianne: Yeah absolutely, that’s that’s 100% where I am, because I got to a point where this work that should be really easy for me, I’m just having trouble delivering it on time. And it’s creating dread and a ton of stress and that makes it worse. It becomes this self-perpetuating problem and so I’m definitely trying to focus on getting out of the flare that I’m in right now, which is a full-time job when you’re in it. So I have to give that all of my attention. And then realistically for me, applying for a full time job where I have to go somewhere every day, I think that’s a recipe for backsliding. And so I definitely have questions about that.

I want to work, and it’s not just for the obvious reasons that it would be good to be able to live somewhere and feed myself. I want to be working because I want to be participating in the world around me and we have this one model that doesn’t work. And not just for me. Something that I’ve become more and more aware of as I read more and more about chronic illness and stuff is that there are lot of people. There are a lot of people with autoimmunity, there are a lot of people with other chronic illnesses who on the one hand are homebound or on the other hand are barely surviving and they can’t be good contributing members of the workforce because jobs aren’t tailored to them.  And if this is so many people, then we need other models for work.

And it’s because of what you’re saying. You’re trained, you have a professional degree, you can competently contribute. But if the system doesn’t let you contribute in other hourly rotations rotations, and these are such arbitrary limits that maybe work for – I don’t want to ballpark a percentage there – but a portion of the population. But they’re actively hurting other people then I don’t know… it’s an open question mark for me right now too, for sure.

Erica: I mean the whole thing is we’re probably going to move anyway. But now the big question is when we do that I need to research firms that will allow me to work from home x y z amount of days, at least two or three or whatever. So I don’t have to feel bad about not physically being there when my body just says no. Because I always feel worse in the morning, so getting to work is always the worst part. And if I have to be on the train for half an hour and I don’t feel well it’s always a struggle. So having cushion time to decide I’m going to go into work at ten instead. And I’ll work at home for two hours and then I’ll go in or whatever. Having that flexibility is going to be pretty important I think. I mean, who knows? Maybe I’ll feel great in two years, but probably not. But having the ability to control your own schedule and for your employer to trust that you’re doing what you need to do, is going to be a huge thing for the future jobs that I probably look into.

Brianne: Yeah, and explaining to somebody who doesn’t get it, trying to say listen, you’re getting worse performance for me right now because of this.

Erica: Because I’m stressed out.

Brianne: I also, not every morning, but my mornings are just inconsistent. I don’t know how I’m going to wake up every day and if you need me to push through it no matter what it’s going to be worse than if I can go back to sleep and then work from 11 to seven or whatever. And there’s something in there about how I want to take care of my body and not become a really sad sack person who thinks that nothing will ever get better, but also build a life that isn’t just torturing me for what I can’t do or get to. So I want to work on accepting that it might always feel like this and then plan for what is the best possible world where that’s also true. And maybe this is something that I’ll incorporate into questions moving forward. Especially in online groups and stuff, there’s this sad edge of people who are homebound and really really depressed, and the world doesn’t make space for you. And so how do you take care of yourself so that you don’t end up wherever that is. That’s also just an open question, not a question I expect you to have the answer to. But it’s just kind of in there. And it depends, because everyone’s conditions and experiences of those conditions are so different, but sometimes things aren’t working and you just have to trust that they’ll get better and not fall apart in the meantime right?

Erica: Yeah you have to hope I guess.

Brianne: And so does everybody, but their lives just handle it differently. Or their bodies respond differently.

Erica: I mean, we’re given limits when you have something this. And I think the hardest part is coming to terms with those limits and those realities. Like, I want to go to Spain and I want to work there for a year. Ever since I’ve been little, that’s just not a dream or a reality, unfortunately, that I can engage in. Because I’ve always known this is an issue. I know what the limits of what I can do are, realistically, and you have to come to terms with those realities. It’s kind of sad but once you do I think it’s just a matter of navigating them and finding everything in between that is something that is good and exciting and something you can do.

Brianne: And recalibrating. One of the things that’s most frustrating, especially with the internet at large, is inspirational memes that say you can do whatever you want, and if you’re not doing it it’s because you don’t want it enough. And it’s like, thank you. A new term that I’ve heard lately is health privilege, and that’s what that is. Because yes, for other barriers that could be true but it doesn’t mean that you have to have a sad life, it just means reshaping. I’m thinking of it as an optimization problem right now.

Erica: There’s so many barriers to that when you’re in your own mind I think. Like, oh well people aren’t going to like me if I do x y z, the outcomes of everything are going to be different, if I have this condition people aren’t going to treat me the same. There are all these mental barriers, but I think it’s also about educating the people that are close to you. I am not different, I just can’t drink all the time or I just can’t party until two am, my body does not let me do that anymore. Just having some awareness. And going back to relationships, there are people that are my friends who know a little bit and enough just to know I can’t do this but don’t fully understand why. And then there are people who know obviously a lot more but I think it’s good to have that range. Because it’s great to have people who know about your issues intimately who you can talk to about it, and then sometimes I just want to go out and have fun and not have to talk about it or think about it, so I’m going to go out with these people who know nothing about my situation.

Brianne: And for me having been sicker the last month, I’ve also realized that shit I need to make sure that there are people who are in this circle because otherwise I’m not going to see anybody. But not everybody is going to be the type of friend where you can say “I haven’t showered, do you want to come and watch a movie with me at two in the afternoon, because that’s the kind of socializing I’m up for right now.” But, this won’t be my whole life. And so, managing those kind of circles. The world.

Erica: It’s an interesting place, as we’ve come to realize. 

Brianne: I think that’s it.

[guitar riff]

Thank you for listening to the second episode of No End In Sight! I’ve got more great stories lined up for future episodes, so make sure you subscribe in iTunes, Google Play, or wherever you get your podcasts.

If you want to commiserate with me on twitter, you can find me at bennessb. And if you want to share your story with me, just click my bio link to schedule an interview. I would absolutely love to hear from you!

I also recently started a Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. So if you’re freelancing or running an etsy shop or managing your own fortune 500 company, I’d love it if you joined!

Last thing:

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. For me, cross stitch is a perfect way to occupy my mind and my eyeballs during flares when I mostly watch long tv marathons. I’d love it if you checked us out at digitalartisanal.com