Hannah Olson from Chronically Capable talks lyme disease.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Hannah Olson about her experience with lyme disease and how that led her to start Chronically Capable, a website that connects chronically ill folks with remote work opportunities. We recorded this interview about two months ago and I think there have been a few developments since then, so I’ll add those in at the end of the episode.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Okay. So to dive in, I like to start by asking were you healthy as a kid?
Hannah: So as a kid I was generally pretty healthy. I grew up having some throat problems, the typical strep throat over and over. I got my tonsils out sometime in high school. But I was a pretty generally healthy kid, very active and involved in sports and music and lived a very hyperactive lifestyle. So no chronic illness at the time that I knew of.
Brianne: Yeah. And then when you say so strep a bunch of times, just as a chronic illness question, did you take a lot of antibiotics as a kid? Is that something you’ve thought about?
Hannah: I did take strep throat antibiotics often, probably every couple of months.
Brianne: Which may or may not relate to anything, but it’s one of those flags that you get at functional medicine places now. Okay. But yeah, otherwise active, whatever. So then, was there a moment when everything changed or did it feel like things changed kind of slowly for you?
Hannah: So my symptoms really started to show up when I was in college. I was a freshman at BU and started experiencing stuff with my stomach. It came out in a way of… They were diagnosing it as abdominal migraines. I was being seen at Boston Children’s Hospital. So they were saying it’s not inflammatory bowel disorder, it’s not crohn’s. They were calling it cramping of the stomach, to a point where it was pretty debilitating. I’d spend a few days at a time at Children’s, but there was nothing that could be done for it. So it came out as that initially. And then it was mono. And mono is where everything sort of started to unravel with the lyme disease conversation. But it was definitely the mono that kind of set off ever having to see doctors and really dive into it. So that would be probably the time that it all started to come to a head, and that was my sophomore year of college. Around age 19.
Brianne: Yeah. And so getting mono is such a thing that happens to teenagers but also such a thing that typically almost kicks off some of these chronic illness stories, I think. Was that acute? Like, did you get mono from somebody that you were aware of it at the time, at least? Even if not now, it made sense. And I don’t necessarily mean intimately. I got it working at a summer camp from another counselor. So that’s the level of personal there.
Hannah: I did not have… I was actually pretty perplexed. I had no idea where I got it from. Like I’m not getting kissed, I didn’t remember sharing a drink with anyone and no one had mono. I lived in a house with seven girls at the time. No one had mono and I got it really bad. And like I said, I got my tonsils out in high school, but my entire throat kind of just swelled up. And I had to leave school for two weeks, but no one knew where I got mono. So there wasn’t some direct cause. I wish that was the case, that would be a cooler story.
Brianne: Yeah, you’d be like, “You, person, you caused all of this!” That’s not how that works. Okay. So mono was intense. And mono, I guess I wonder if anyone who’s listening has not had mono. Certainly everyone’s heard of it, but that’s mostly it. I remember it as like swollen lymph nodes. I still have my tonsils, so they were touching each other. Like very swollen, very low energy, probably stuffed up.
Hannah: Fever.
Brianne: Ugh, fever. And there’s no treatment for mono, is also a component of mono. Because it’s one of two viruses, I believe it’s either CMV, I think or, or epstein-barr.
Hannah: EBV. And there’s no medication for it. Yeah, you’re just supposed to ride it out, which… sucks.
Brianne: Yeah. Okay. So after mono, and you had already had some stomach problems. And so that kicked off… Did you recover and then unrecover, or was it kind of a… You just never really kicked it and started to have new questions?
Hannah: I think it was the second option. I thought I recovered. I decided to study abroad the next semester. So I went into that definitely nervous because I was tired all the time. I think that’s really what started happening is I just never got over the tiredness. Anything I would do, I wanted to sleep. And I just felt really weak. I was always an active child, I never stopped moving. And at this time I was just very tired and wanting to lay in bed. I didn’t really want to go out and party like a normal college kid. And so I think that’s kind of, it just never stopped. I still to this day test positive for mono, which is pretty weird. Hopefully I haven’t given it to anyone in the past few years, but I don’t think I still have mono. But that’s the weird thing with those faulty tests is you often test positive for mono or epstein-barr and it’s not actually that.
Brianne: Yeah. And there are so many different… especially with mono where they’re like, “Okay, we’re testing you for EBV and CMV and we’re testing you for all of the different kinds of antibodies.” So one of them means that you either once had an active infection, which you already know, or it’s still really high, so it’s not new, but it’s active. And you’re like, “Nothing means anything. Just admit that you don’t know what’s going on.” Okay, so then you did go abroad?
Hannah: I did go abroad to Australia.
Brianne: Oh wow. How was that?
Hannah: I went as far as you could go. So yeah, I mean I started off trying to do the abroad thing. I was surfing at the time and really enjoying myself out there and then just kind of the tiredness never really went away. And the next thing that started happening was I started losing feeling in my legs. So I remember vividly, I was sitting in a park in Sydney, in Australia, and I couldn’t get up. And I remember I was sitting with a friend and I just actually could not stand up. And she sat there with me for an hour and then finally my legs started going back to normal. But I would describe it as that sensation of when your foot falls asleep and you kind of try and shake it out. But it was my entire legs all the way up into my hip. And that was the first time that I remember that happening. And then from there it was just pretty much every day my legs were falling asleep and my right arm. They would fall asleep for like an hour and I wouldn’t be able to get up from my desk in the classroom or I’d be at dinner and kind of just paralyzing.
Brianne: Wow. I recently learned that that sensation is called parasthesia, as an aside. I found that out at my last doctor’s appointment. But yes, so it feels like pins and needles and there was like a kind of numbness. So just as a point of comparison, I get a kind of nerve pain that also falls into that category, but it’s not numb. So I can still use all of my limbs, it’s uncomfortable to use my arms. So it sounds like you’re also having a… something is going on in addition to just the discomfort. It’s like you feel a discomfort plus you’re not really able to move or rely on your limbs. Is that right?
Hannah: Right. I think they were labeling it as neuropathy. Peripheral neuropathy.
Brianne: Yeah, yes. It’s good. Not that medical terms matter that much. It’s just like, I believe… Hello listeners. I believe that parasthesia is a specific kind of neuropathy. So it’s like when it feels like burning under the skin or pins and needles. And then I don’t know what other kinds of neuropathy could be, but presumably there are others. Just an exciting wormhole that I fell down recently. Anyway, so that started happening and it started happening in your arms. Did you finish out the semester abroad?
Hannah: I did. I’m stubborn, so I wanted to stay there. And I did end up seeing a doctor there. I knew someone who had, or my boss at the time when I was living there had chronic illness herself. And so she was really pushing for me to go see a doctor there and their first thought was, “You have diabetes,” which was really weird because at the time I didn’t have anyone in my family with diabetes. But right after that my cousin was diagnosed. So it was just kind of out of nowhere. And they were really thinking about giving me insulin at the time. They were pretty convinced I had diabetes. So luckily I came back to the States before that happened. But diabetes was the initial thought in that process.
Brianne: Were they doing tests and stuff? Like mostly a blood test since obviously blood sugar and A1C should be a major factor. Were they like “This is just a strange presentation of this disease?”
Hannah: Yeah. And I think they kept saying that there were options for possible false negatives or false positives. So it just all was very unclear and I think my mom at the time was like, “Just get back to the States and when you’re back we’ll deal with it.” I had hopes that maybe it was just temporary and it wasn’t going to last, which of course was not the case. But I did finish up the semester and had a great time. But when I got back is when it all kind of blew up.
Brianne: Yeah. And I think there’s an interesting thing about chronic illness is also that sometimes, not all the time, you really can run on adrenaline for quite a while. Like you want to be having a good time, so you ignore all of the signs that your body is telling you. And like, you do have a good time, for a while.
Hannah: Right. You want to be normal. I think that’s the big key factor here is that I was 20 years old at the time and I wanted to be 20. I wasn’t even of legal drinking age. I was young and I wanted to live that life and no one wants to believe that you’re different or have to live a little slower. So I just wanted to keep that going. I’m still like that today. It’s just part of it.
Brianne: Yeah. It’s so valid. Okay. So then you got home.
Hannah: So then I got home and I went to my general practitioner. And he was actually the man who delivered me, he’s my entire family’s family doctor. And so I came in and I just said, “I have no idea what’s wrong. This has been going on for a month. You said I had mono, what’s going on?” And my mom had had a friend say, “Has Hannah been tested for lyme disease?” So he gave me a lyme disease test and called me a few days later and said, “It looks like it’s slightly positive. I’m going to put you on two weeks of doxycycline.” So I did the two weeks and nothing changed. And at the time things were just kind of starting to spiral and getting worse. I had this pain behind my right eye. I was tired all the time and I started kind of getting a little spacey, that’s when that all started. I was always very sharp and I started to get a little bit like a space cadet. And so I called him back after the two weeks had passed and I said it didn’t work.
Brianne: Right, nothing’s different.
Hannah: And he saud, of course. which is a common refrain I’m sure you’ve heard a few times from people with lyme disease is that, “It’s in your head. Two weeks should have worked, you’re fine. Go see another doctor if that’s not the case.” And then that’s when the digging started happening. And my mom really was a great advocate for me at the time because I don’t think I had the skills that I have now in terms advocating for yourself. I think that’s something you really build with a chronic illness. And it’s definitely transpired into different aspects of my life of just being able to advocate for what I need. But at the time I didn’t have those skills. So luckily I did have a mom who was active in trying to get to the bottom of it, sent me to go to a lyme specialist who did a more comprehensive test. And that’s when I got the positive results for lyme and the three coinfections.
Brianne: And was that igenex, just for my own curiosity? Like was your first test probably labcorp or quest. It’s okay if you don’t know, these are just…
Hannah: The first test was definitely just done in the doctor’s office. So probably labcorp or one of those. So then the next one was… I don’t know how to say that, isagenix?
Brianne: Igenex. I think isagenix is an MLM with weight loss shakes.
Hannah: Oh, you’re right.
Brianne: [laughs] It might show up in your facebook feed all the time. That’s good. That’s good. They are basically the same.
Hannah: Exactly. And my lyme test was negative, but the three coinfections were positive, but it was showing a positive for a European strain of lyme disease, which is very weird.
Brianne: Yeah. So another borrelia basically, right? Yes.
Hannah: Yeah. And that’s when all the kind of puzzle pieces started to fit together. I only remembered one tick bite, which happened in Nantucket the summer after my freshman year of college. But then at the same time, my big symptoms were I was dropping weight really quick, I told you about the sensation in my legs and the memory. And I was experiencing the same symptoms as this boy who actually lived in my neighborhood in Mexico in high school, and he was diagnosed with the same… Our blood tests came back almost identical. So we still have no idea where I got bit, but that’s also one of the possibilities is that they said it could have been some European strain in Mexico. So again, like anyone, who knows? It could have been when I was a child, it could have been later on. It’s always going to be a mystery.
Brianne: And so then this practitioner who did the more thorough panel with the coinfections, were they an MD?
Hannah: So he was an MD that specialized in lyme. He’d had, I believe, a case that had gone bad when he was early in his years as a doctor and just switched over to lyme. And I saw him, he was a quirky man. I saw him for about, I think about six months. And he put me on a very intense oral regime to start and my body just could not handle it. I was just really unable to keep down the meds. So I was getting sick and dropping weight. Like I think I lost 40 pounds in the first year of all this happening, which was unhealthy because I’m 5’10 so I started looking a little bit like a skeleton. And so we knew that I needed to see someone a little different who might’ve had some alternative methods. And then I switched to doctor in Boston.
Brianne: And then also at this time, because you mentioned you had stomach problems earlier. Was your stomach still bothering you as either a part of this or in addition to this? Because I’m sure taking a lot of antibiotics when you already have digestive issues would be more awful.
Hannah: Yeah. So I’m not sure if the link was from the antibiotics or from my prior issues, but I was just getting sick all the time. I couldn’t keep food down. I couldn’t keep the pills down. I’d put a towel up to my mouth just to get the pills down. I’m not sure if the stomach stuff was related from prior or if it was just that the drugs to treat lyme disease are just really strong. It’s crazy that we put that into our bodies and so many people.
Brianne: Yeah. Okay. So then you found a new doctor in Boston and how was that? What happens next?
Hannah: So she’s been great. I can say she’s still currently my doctor. I live in Washington DC, but I travel back about every six weeks, hopefully, here or there, to see her and she controls all of my treatment from Boston. So she takes a very intense approach, which in my opinion, at first I was very hesitant to this because I was already going through so much with my body not being able to handle the meds, that the minute she said “more meds,” I was like, “Oh no, here we go!” And we tried oral meds, tried to alter them, and then in June of 2017, it was deemed that I needed to get a picc line, which, I don’t know if you want to explain what that is, but it’s an IV in my arm. So that was placed originally on my left arm. I’m now onto my third or fourth picc line just because of infection, sometimes they have to be changed out. But it’s a line that gets put into the arm and it gets woven up to above the heart. And it allows you to give yourself IV antibiotics every day, which was great because it bypasses the stomach. So I wasn’t having those stomach issues anymore. I wasn’t getting sick at all because it really wasn’t, it was just going straight into my bloodstream. And so that was the final switch from her was that she went on to a very intense IV antibiotic regime.
Brianne: Gotcha. And so how has, I guess both of them, because you said you were on the oral antibiotics and I’m sure even if they may have been helping, the side effects were so intense that it would be difficult to parse that out. But how have your symptoms progressed over time? So that’s like three years basically. So if you got the picc line in 2017 and you had been doing oral antibiotics before that.
Hannah: Yeah, so I think my official diagnosis came in May of 2015 with lyme and the IV started in 2017 in June. And it’s been a rocky road in the past two years or almost two years. With the oral antibiotics, the biggest problem was I wasn’t getting them because I was getting sick. So they weren’t doing anything because they weren’t getting into me.
Brianne: You weren’t digesting them.
Hannah: Exactly. So last year in May, I finally got the picc line out. I was on it for about 11 months and my symptoms were really improving. I was feeling good. I started to kind of gain that strength back. My memory was a lot sharper. By the time I got the picc line, I was raising my hand in class and asking a question and putting it down. And then three minutes later raising my hand and asking the same question. I mean, I was losing my mind. I had anger that I never had and I was really just confused all the time. I would drive somewhere and wouldn’t remember where I was driving. So those symptoms really started to improve and that was the most important thing for me because I work full time and that was really important to me, that I kept my mind sharp. I care a lot about… I’m always learning and reading and trying to keep up with that. So I didn’t want to lose that part of me. So that was really starting to improve. And I got to spend this past summer without a picc line, which was great because I love to paddleboard and swim. But unfortunately in October of this year, I started getting really bad fainting spells. So with lyme, oftentimes people get POTS, which I don’t know the official word for it, but it has to do with… Do you?
Brianne: Yes. It’s postural orthostatic tachycardia syndrome. Sometimes I forget it and sometimes I know it.
Hannah: And my understanding of it is that your heartbeat speeds up and goes too fast in like a 30-second interval I think it is? That’s how they measure it?
Brianne: Yeah. And also it’s postural as in – because you’re doing the hand gesture – as in when you change postures. So when you become more upright, which sometimes can even be going from lying down to sitting and certainly from sitting to standing. And it occurs to me now, I don’t know, did you do a tilt table test? It’s okay if the answer is no.
Hannah: I did.
Brianne: So I don’t think I’ve ever directly talked about those. But the official diagnostic test is they strap you to a table that slowly tilts upright and they take incremental measurements of your heart rate. And if your heart rate, I think… I also want to say that it’s if it jumps by more than 30 beats per minute, and many people are much more than that. So it is very uncomfortable as you’re saying, it may or may not result in fainting. But even when it doesn’t, it’s not great. So yeah.
Hannah: It’s like a racing heart when you get up. And oftentimes you’ll get dizzy because the blood is rushing to your head. So for me it was often getting up in the morning, or getting up out of bed and running to take a shower too quickly.
Brianne: Yeah, showers are awful for POTS in general.
Hannah: Definitely. And I live alone in DC, so I was living in a studio apartment at the time, which was just not safe because I was fainting alone in the apartment. So finally, insurance has been a real struggle this whole time, getting approval for the picc line. They don’t want to pay for IV antibiotics because they don’t believe that it’s necessary and they think it’s harm on your body. So luckily with the fainting, I had enough proof that I needed the picc line again this time. So it got rang through for POTS, not for lyme disease.
Brianne: For saline.
Hannah: For saline. Now of course I’m on different antibiotic as well, but that’s how they got to put it in.
Hannah: So I’ve had this picc line since October. But in October as well when this painting started, I found a huge tick engorged in the back of my right knee. So we’re not sure if I got a double whammy or if it… I didn’t get a typical bullseye, but I did get a big red mark around it. And of course I freaked out and threw it in the toilet and my doctor was like, “You should’ve sent it to me to get tested.” But I did the initial, let’s just get this out of my sight! So we don’t know if it was a double whammy or if my symptoms just relapsed. And I think a lot of people with lyme, it’s just this constant, you know, you go through stages and remission and then it can come back at different points in your life. Whether you’re exposed to mold or you’re having more increased stress in your life, diet. So we really don’t know what caused this recent bout. I’m doing well. I’m back on the picc line and it’s been about five or six months now and one day at a time.
Brianne: Yeah, totally. And then you mentioned diet and mold and all of these other things. So I’m sure you’ve been down all of the rabbit holes, but are there other things that you have tried to supplement the antibiotic therapy? Like whatever that may be. I don’t know, saunas or AIP or I’m sure you can imagine the full list of things that you may or may not have tried.
Hannah: Yeah, so my mom’s definitely very pro alternative medicine. I think she’s worried about how much antibiotics everyone is getting with lyme disease. It’s really a lot for the body. So we’ve tried to supplement over the past year or two. I do take herbs as well, a few different ones. I don’t really like the taste of them, so I’m kind of stubborn about it. We’ve done the infrared sauna. Right now with the picc line I’m unable to go into the steam room or sauna just because I sweat, and with the picc line you can’t sweat. But I was before that going to the sauna. I had a gym membership, frankly, just to go to the sauna. I love equinox for that purpose only. I wasn’t working out. And we’ve done a few different things. I’ve gone to a salt cave. My mom has an infrared sauna mat at the house. So when I’m home I do that. My biggest thing is I just don’t know… Sometimes I feel like I’m going down this rabbit hole of like, is this even real? We’ve gone back and forth between deciding whether or not to go to Germany. I don’t know if you’ve heard about the offering there, but there’s very positive feedback. But there’s a program in Germany where you can go, it’s all out of pocket and you go for I believe two to three weeks and it’s hyperthermia treatment. So they’re heating your body basically from the inside out and they’re saying it can kill off the lyme.
Brianne: Interesting.
Hannah: The problem with that is that it can affect babesia and bartonella negatively. So we’ve been really trying to focus on kicking those before the lyme so that hopefully at some point I could make it to Germany. But I’m a little nervous about heating my body from the inside out. So yeah, I just hope that it doesn’t have to be this long and that someday I’ll get the picc line out and not have to be on drugs. I’ve definitely tried a few things. The one thing I do not do is the diet, which everyone has told me is the most important thing to getting rid of lyme is to cut out the carbs or to cut out the gluten and the sugar, the dairy, because lyme disease is said to feed off of it. But I’m 22 and I want to eat pizza and if I’m sacrificing so many parts of my life in my day-to-day, I want to be able to eat a piece of pizza or have a glass of milk and a cookie. And that’s just one thing that I’ve kept as a priority of mine. I think everyone jumps to that and I think sometimes you have to advocate for what you need as well. If I’m going to do all this for my doctors, I need to do something for myself and that’s going to be to eat what I want. And that could change, I’m hoping to kind of start to be better.
Brianne: I mean diet is really hard and it’s really personal and there are a lot of people on the internet kind of like you say, who are like, “You have to do it exactly right if you ever want to be okay.” And I just don’t… Like my diet is definitely altered now and I’m 32. But it took me having some up and down health stuff and knowing, knowing the gluten wasn’t a good idea. Like I did my first gluten-free diet in high school, I realized recently. So like 15 years ago, more than 15 years ago. And I didn’t… I wasn’t like, “Oh this is a little bit helpful, I’ll just never eat gluten again!” I went to college and drank beer all the time and then moved to a city and drank beer all the time. And then for me with my own body, it got to a point where my body was like, “This isn’t working for you.” And I was covered in eczema. But I got to a point that it didn’t make sense anymore to try… I was not trying to balance, to be clear. To be clear, I was drinking a lot of beer, not an occasional beer. But I just think this stuff… But I eat dairy. Like I eat dairy I think every day, I don’t notice a problem with it. I think it’s so personal and like you say, we get to pick our priorities. And I was too itchy, so I had to stop eating bread. But I still like cheese and butter and maybe something’s happening with those and maybe that will become obvious and I’ll stop eating them and maybe it won’t. Maybe it will always be something that just isn’t a big deal in my body specifically for whatever reason. And I think, kind of like you say, it’s hard to know even what to believe when most of the people who are writing about this and talking about this kind of stuff are sometimes dubiously credible and sometimes really anecdotal. Like its one person’s story and all of a sudden you’re like, “Okay, we all have to do exactly what this person did.” I don’t know what’s relevant.
Hannah: I agree. And I’m a very factual person, so yeah. I mean I’ve seen stats on it, but it’s something… It’ll hit me when I’m ready. I might just be a little stubborn right now and it’s something I’m just not gonna back down on yet. Maybe like you said, at some point when you were actually experiencing symptoms of it and until that happens, I’m gonna eat what I please.
Brianne: Yeah. And I think I was 28 when that happened that I was really ravaged by eczema. But yeah, I don’t think… I think it matters. Like I think what we put in our body matters. But I also think feeling like a human instead of a robot who does everything perfectly and then sometimes still isn’t better. Like I don’t know, it’s just making me think about it.
Hannah: It’s not living for me.
Brianne: Yeah, it’s not living. And it also feels like you have to prove that you’re giving up everything that you care about to get better, or trying as hard as possible, harder than anyone has ever tried before to get better. Like sometimes that’s what it feels like with the really limiting protocols, but they can be very helpful. Plenty of people are very helped by AIP. And I do eat a pretty low-carb diet, so I have become that person I guess. Anyway, so diet: not so much. Heat: sometimes. Yeah, I have a portable infrared sauna that you can stick your arm out of, and your head sticks out the top. It’s like…
Hannah: Is it like a tube?
Brianne: No, it’s like a little box. It’s like this box that zips up the front and then it has a folding chair in it. It’s like quilted black fabric and then your head sticks out and you look really silly. But there’s little arm holes. They’re zippered arm holes so that you can take your arms out if you want. I’m gesturing a lot right now. Not even on camera, I think. But I don’t know. I don’t even know if the sauna makes a difference. I started using it because it was recommended. It is nice to be warm. I don’t know.
Hannah: Yeah. I did notice with the steam… when I didn’t have a picc line and I was on the oral antibiotics, I would go to the steam room and then I would use the towels at equinox at the gym and I’d wipe my arms and black and brown stuff would be on the towels. And my doctor said that that’s toxins. Your body is releasing toxins through your pores in your skin. That sounds kind of nasty, but it definitely was clearing out of some sort. But we can’t all go to a sauna every day. I mean, it’d be nice if I could go to a steam room, but…
Brianne: Yeah. But no, that’s super interesting because that’s exactly why. And it’s hard when you start to talk about toxins and stuff because there’s such a spectrum of what people mean. But like… It’s real. It’s real and that’s one of your body’s natural detox pathways is to excrete stuff through your skin. This is just a part of the body. Okay, so anyway. So are we more or less caught up to the present from your perspective? Okay. And so right now you’ve been back on this picc line since October, and have you seen an improvement since then in the POTS and kind of whatever else was happening with this relapse? Like maybe ?
Hannah: Yeah, so definitely with the POTS it’s been great. Fluids are amazing. I mean anyone can benefit from fluids. People pay now those IV doctors to come after you have a hangover to load you up with fluids. So that’s definitely been a big improvement for me. There’s definitely, and I think this will continue for the rest of time, you have to kind of try out different things and make adjustments constantly. I was just on doxycycline for a few months and it was making me really tired. It was hard to get up in the morning to go to work. And so we cut back on the dose. We actually cut it out, then put it back on a lower dose. So there’s constantly adjustments. But I’m feeling good. I’m mentally pretty clear. I’m still… And I don’t know if it’s part of just the antibiotics or partly just the life I lead, it’s very fast. I’m tired often. And I continue to push myself a lot. And I have to really work, and this is something I’m going to continue to work on moving forward is to take the time for yourself and again, advocate for when you need to rest. I live very, very fast. I’m working, I’m with my friends, I’m out. I don’t really stop. And that catches up with me and I get very tired. But generally I’m doing really well. I mean, I’m working full time. For the most part I do work remotely pretty often. And I’m feeling pretty clear in the mind, in terms of my memory and such.
Brianne: Yeah. Like right now, things are working. Even if it takes work.
Hannah: Exactly. And again, I’m just going to need to continue to keep doing it. Ideally I won’t have a picc line forever because it does affect your day-to-day drastically in terms of showering, logistics. I’m hooked up about six to eight hours a day depending on the day. There’s just, you know, preparing your day, going to work, making sure you have the meds with you. Having a nurse once a week. It’s a lot of stuff. And so I hopefully won’t have to deal with this much longer. But again, I fear that if I get off of it, I’m going to relapse again, which is what I went through in October. So, you know, it’s just giving it time and patience with my body.
Brianne: Yeah. Which is hard, which is hard. So work, let’s talk about work a little bit. So did you graduate on time, first of all, college? You got kind of sick, but how did that go?
Hannah: I actually graduated a year early.
Brianne: Wow.
Hannah: I know, I’m kind of crazy. So yeah, I was a hardo about school. That’s a good way to put it. So I did manage to… a lot of people, and I totally understand why people need to take time off from their life. Looking back sometimes I wish I had or I hadn’t rushed it, but I just wanted to power through and work, and really was motivated to do that. So it kept me going. So I graduated in 2017 instead of 2018. Which was good. Good for my parents, they saved some money. I’ll never let them live that down.
Brianne: Yeah, it’s fine. It’s a significant chunk of change. A year of tuition basically. And then did you start working right away? Because you had a picc line by then, right? Or you would’ve gotten it just after you graduated? It sounds like on the timeline.
Hannah: I did. Yeah. So I graduated and I think I got it like two weeks after graduation. That summer I still had to take another class or two because I was early. And right after that happened I moved from Boston to Washington DC and I accepted a job at a design agency where I went into the typical overworking, hard, hard first job with a picc line. So it was definitely a life-changing experience.
Brianne: Yeah. Difficult, I would guess. Difficult. Yeah, I can’t imagine. My degree is in architecture and I actually never went into architecture and one of the reasons is that it’s like 800hour weeks right off the bat no matter what. And even before I kind of recognized that something else was going on with my body, I was like, “I can’t do that. I can’t pull all nighters. It doesn’t work. I’m in immense pain. No thank you.” But… Careers. And do you want to talk a bit about Chronically Capable?
Hannah: I can, yeah. So actually me too. I’m probably not going to go into my field either. It was hospitality. Again, because of nonstop working. And I just said, “I don’t think I can do that.” That’s a very physically present job where you have to sacrifice holidays and you have to fake it till you make it if you don’t feel well because guests are first, not you. So I went into marketing and moved to this design agency. And I was terrified, to be frank. I didn’t know if I was going to be able to handle the workload. But I also was so adamant about starting my career and I didn’t want to be judged against my peers and looked at differently. So I kept things very quiet. I hid the picc line pretty often inside my shirt. I didn’t talk about it much and I would go into the basement bathroom and change my meds and switch them out. My coworkers knew but my bosses really didn’t seem to care. And I reached a point last spring that I just kind of realized… Why am I having to sacrifice my health for my career? And why is this a thing you have to do, that you have to hide, that you can’t ask for time off to go get your blood drawn? That you can’t work from home if you’re really just feeling weak and can’t make it on the walk to work? So I was terrified to leave my job. I had a solid job, solid income and I didn’t want to be out of work. So I did find a job before leaving, at a startup. And I decided at this point, I was hired to help with marketing, and I said right off the bat, “I just want to be upfront.” I wasn’t sure at the time about anything of disclosure, what to say, if you’re supposed to tell your employer. But I knew after this past seven months that I couldn’t get into the same work environment that I was in. So I decided being upfront was my best option at preventing that. And if they had a problem with it, I mean, I, I gave them that opportunity to be like, “You aren’t the right fit.”
Brianne: Right, “This won’t work.”
Hannah: But I just didn’t want to make the same mistake I made before. So I was upfront upon hiring and just said… at the time I didn’t have a picc line. Like I said, I got it out in May. So I just said, “My lyme disease is pretty bad. There’s times where it can flare and there is a potential that I will need another picc line in the future. But my mind is clear and I’ll give you my all.” And they were fully supportive, which for me was this Aha moment that good people do exist and that if you advocate for yourself, it might work out. And so I was hired and spent the summer working in marketing for them and we were building an app for college students. And college students are very hard to get to download an app, let me tell you. So we had some trouble with that. And we kind of reached a point where we said, “You know, we’re working on different things. Does anyone have any ideas?” We all pitched a few different ideas, two of which… one besides Chronically Capable is still being worked on as well. But I said to them, “You know, in my personal experience, I’ve read on facebook and all of these support groups and friends have told me that it’s very hard to manage working full time with a chronic illness. And you shouldn’t have to sacrifice your passions for your wellbeing. It just doesn’t really make sense.” And so I said, “Is there a way that we can start to work to solve this problem?” So that’s when Chronically Capable was born, in September in our little office in DC. And we launched on October 1st in accordance with national disability awareness month. And we really had no idea what to expect. We put a one page website out and at the time we said we have this job matching software and let’s connect people to remote work, with a chronic illness. That was the original goal. But it was just the one page website, I think it said, “Hannah, 22, chronically capable of kicking lyme disease’s ass.” And then it says, “Sign up to learn more.” And so that first week I think our goal was to get a hundred people to sign up from Monday to Friday. And I believe we hit that goal on Monday night or Tuesday morning. And so we were like, “Oh boy. Uh oh.”
Brianne: Yeah, there’s a lot of people who want this.
Hannah: Yeah. And my email, I remember that first week I thought I was going to put my phone down and I tried to have a few moments where I’m sitting at dinner and my phone was just going off. And it was people being like, “This is what we need!” And I just had so many emails of people telling me their story and saying that no one’s advocating for this. People are advocating for disability rights. But people aren’t advocating for invisible disabilities in the workplace specifically. And we just saw a true need here. So we spent the past few months really working hard on research, speaking to both sides. That was really important to us. People with a chronic illness and people who are hiring employees and really trying to get to the bottom of the problem before we created the perfect solution. And I don’t know if there is a perfect solution, we’re working our best to find what we think is the best. But yeah, it’s been really great. And it’s interesting because people have said, “Is it hard having to now work in a space where you’re talking about illness, you’re living illness, and you’re hearing about it every day from strangers? And my answer is, “Yes, it’s hard, but it’s also incredibly rewarding to know that I’m struggling with this and I have now the capability to help other people who are struggling with this and to help myself and hopefully people like me in the future so that it doesn’t have to happen because no one should have to sacrifice that.” So it’s been a really rewarding few months. It’s been hard work and it’s been exhausting, but it’s exciting for all of us. And I luckily have a team that I’m the only one that I know of that has a chronic illness in the office, but they’ve all been so excited to learn about it, so interested. I do a lot of the one-on-one kind of interviews with people and hearing the story, but I always come back and tell them, I always share with them the emails we receive. And I’ve just been so excited to be around a group of people who aren’t sick but are really willing to learn about it and want to help these people because they understand that it’s morally an issue. So it’s been a really exciting six months, I’d say.
Brianne: Yeah. It’s the middle of March now.
Hannah: Time flies!
Brianne: Yeah. But no, it’s exciting because I think that’s… Well we had a separate call about this, but I feel like it comes up so much with people that I talk to. I have talked to a few people who work full time, but most people who I talk to don’t, no surprise. And I’ll like ask them about what would an ideal working scenario look like for you? Like that’s one of my favorite questions because I do think there’s so much to this problem that is not covered by the way that we as a culture maybe traditionally think about disability. And I think it’s awesome to see as it unfolds, to see what actually people are able to try and experiment with. Because I feel like that’s one of the difficulties is you don’t know. And if you haven’t been working for awhile and you’re trying to apply and ask for accessibility at the same time, therea re just so many things that make it so much more loaded, I think, then we’ll say other job searches. But it’s exciting. It’s exciting. Lots of people, I mean there are people who can’t or don’t want to work because it doesn’t make sense. But there are lots of people who do, obviously, and as you guys discovered when you opened up your signups. That is very cool. So what else is on my questions list? In general, it sounds like because you’ve been able to stay busy and you’re living in a city and you’re fighting through it, you are still a part of your life kind of. Because that can be something that people talk about too, is the way that chronic illness in general impacts relationships. And have you found that it’s hard to explain to people in your life? Or alternatively, have you bumped up very much against, I’ll say lyme disease skepticism, for lack of a better word?
Hannah: Yeah. I think for a long time it was hard for me to talk about. I didn’t want to be looked at differently, especially at first when I first got the picc line. I didn’t want anyone to know because it was almost like a hit on my pride because I had just done so well and I wanted to be looked at the same as everyone else who was applying to jobs and about to start their career. So I kept it very private at first. It was my inner circle, my friends and my family. And I mean the people in my life were very supportive. It was hard though. It definitely strained a few of my personal relationships. I wrote a blog a while back of how it’s strained relationships with people because they were thrown into roles as caregivers. There were times, especially when I first got the picc line, where I had trouble bathing myself. There were just certain things I couldn’t do, like reach certain things on the shelf. It would hurt my arm. And I relied on certain people in my life to fill those roles or that role. And that became definitely a problem with certain people. But I think generally my friends and family understood that it wasn’t something I was asking for. I didn’t want this. And so, and I think they felt that the more I was vocal about it, the easier it was to handle it. When I kept it inside and didn’t talk about it, they didn’t know what was wrong. And if you don’t ask for help or explain what you’re feeling, it can come out in terms of resentment. You can kind of snap at people. So that took me a while to figure out what’s the best way, how do I explain to someone that inside, these are the symptoms I’m feeling when it could sound crazy to someone. They might be like, “This girl is insane.” So it took me a while to find the words. But the more I talked about it, the more comfortable I became with it. And then obviously with Chronically Capable, it became public. I told my story on social media, which I was always the one that said I’m never going to be that person. I didn’t even go to support groups. I didn’t want anything to do with being associated with a disease. Like this is not… I have so many other things going for me. I don’t want to be known for my lyme disease. And I was terrified the night before. I actually found an old journal post and I was writing in it like, “Oh my god, I can’t believe I’m going to do this tomorrow.” I had the post planned out, I was going to post it on social media and tell people like, “This is my reality and this is why Chronically Capable is happening.” And I remember the day I did it, I started hearing from old friends, college classmates, an old professor, people who I’d lost touch with just being like, “Holy crap, I’m so proud of you. This is amazing. I didn’t even know you were going through this. Just let me know if there’s anything I can do.” So for me that… yes, it was validating, but it was also terrifying because now everyone knew my secret. But now five or six months in since that happened, I’m used to telling the story. I have to on a day-to-day basis. And so the more I do it, the more I’m comfortable with it. And I’ve also really gained, or I’m still working on gaining those skills of communicating with close people in my life. Because, and I’m sure you’ve experienced this as well, your needs change and your symptom change. It’s very hard to explain to someone that “Yes, I’m perfect today. But tomorrow I might be awful.” And so just being constantly in communication has been a really big help for me. And that’s hard to do because I don’t want to be the person who’s looking for pity. I don’t want to be the complaining friend. But sometimes people respect you more when you’re just like, “Yo, this is where I’m at.”
Brianne: “Here’s what’s happening.”
Hannah: “Here’s what’s happening.”
Brianne: Yeah. And I think it’s hard because one thing that it makes me think of, like you say, it can be hard to explain that yeah, today is perfect, but tomorrow might not be. And I think one of the reasons for that is people who aren’t experiencing chronic illness, they want the best for you. And that comes out sometimes as almost a forced positivity. Like, “You’re great today so you’re better now! I’m so relieved.” And it’s like… It’s not like that, but we need to build a language for talking about it because I’m not trying to be negative. Like, “No, actually today means nothing and I’m going to be sick and miserable forever!” It’s like that’s not what I’m saying when I say, “Yeah, it’s funny. Sometimes I have really great days and sometimes they’ree followed by really terrible days and that’s the whole story.” So I think that’s what’s good too about just more awareness around these kinds of chronic illnesses is kind of telling that story. Well now I’m excited to hear about a new chronic illness related TV program, because that’s kind of what I wish like Afflicted would do. I never watched Afflicted, but people were very mad about it, which is why I didn’t watch it. But a show that normalizes how abnormal this experience is, to just show people living. I think it would be really helpful, because there’s basically no media representation of any chronic illness. I know that’s not true, but diabetes is almost the only one that I feel like it’s in the mainstream that people are really aware of, and that you’ll see characters in movies having this condition, and the culture understands what it means and what’s happening.
Hannah: Right. And I think the conversation around chronic illness, it’s definitely starting to develop. We see celebrities coming out and talking about their struggle. And I think that’s very positive because people just don’t understand. And if you think about it, if you don’t know something and you don’t know someone personally, you just might not know about it. And so I think just having conversation around it is really positive because it’s getting the idea in people’s minds, and people just don’t know it’s a problem. So the more that we’re posting on Chronically Capable and we’re seeing celebrities and different nonprofits and organizations talking about it. It’s a topic of conversation and people are starting to kind of recognize it as yes, this is an issue. Granted there’s a lot of work to be done in terms of storytelling, but it’s stuff like this podcast and different blog posts and articles and that’s the stuff that gets people talking about it. Awareness.
Brianne: Yeah. And this is in the wake of Selma Blair at the Oscars, whenever this airs. I don’t think people will have forgotten about it, but as a specifically powerful… Because it’s funny as a person who is now embedded in chronic illness culture, I’ll say, although that’s a terrible sentence. But anyway, I can name a bunch of celebrities that have chronic conditions, but Selma Blair is the only one where I feel like she has now shown people like a little bit of that reality compared to like Lady Gaga has fibromyalgia and she’s still out there doing all of this stuff that she does. And I think it’s awesome that, I guess we know that about her and that she’s open about it, but it’s also interesting because no one sees what her flares look like. Or the same with Selena Gomez who has lupus. It’s like no one sees those things. And not like either of them owe the public what they look like when they’re in a flare or anything, but when you know that these two apparently highly functioning people who are very successful have a condition, then it can create a false impression that anybody with that diagnosis can just power through it and become a superstar. Does that make sense? I don’t think that’s their fault. I just think that’s something really powerful that Selma Blair has done.
Hannah: Right. And we see them as superheroes because they are able to… like Lady Gaga is a badass and she’s able to still be in the movie of the year or whatever. I don’t know if they won.
Brianne: I don’t know either.
Hannah: But you know, A Star Is Born was amazing. Anyway. And that’s hard because then people are like, “Well, if they can do it, why can’t you?” But chronic illness is one of those things where it varies so much from person to person day to day. I think hour to hour, minute to minute, for me personally. So I just think that the more people start to share the stories of the reality, the more the public starts to understand the issue.
Brianne: Yeah. Like it gets a texture to it, which is good and necessary and helpful. Okay. I feel like we’ve covered a lot of my usual topics and questions. Is there anything that we haven’t covered that sticks out for you as an important part of your experience or what you’ve learned about chronic illness in the culture? It’s okay if the answer is no.
Hannah: I’m not sure. Do you have anything you can think of?
Brianne: No. I mean, I guess one thing that hasn’t come up this time, but it might just be because it’s not a part of your experience, is also like… Well you mentioned healthcare, like getting your picc line covered by insurance. There’s kind of two extra things that do come up and may or may not be relevant to you. And one of them is doctor dismissal. So when you’re young and a woman and you go to a doctor, what has your experience been or does that map to your experience at all? And then also insurance often won’t cover a lot of infusion related stuff, and have you run into any issues with that? But if neither of those spark answers, then that’s okay.
Hannah: I mean, both things do. I could definitely talk a bit about… Something that’s been really important to me throughout all of this has been to not bash anyone. I think there’s a lot of misdiagnosis around chronic illness in general. And I think there’s a lot of controversy around all of this. But people are entitled to have their opinions and views, although I might not agree with several of them. I’m allowed to have my opinion on things and so are they. But it was really hard for me to have the first person who saw me enter the world, my doctor, I mean he was the first person to lay eyes on me pretty much. To then have him tell me I was crazy and that it was related to my family problems or personal stuff going on in school. And to have that person who I always admired say that to me, it was just incredibly invalidating. And I was like, “I’m feeling this every single day and you’re not understanding and you’re writing it off.” And to this day we don’t have a relationship. He still sees my parents as a doctor. He knows how I feel about it. I’ve been very clear in letting him know after the fact, you know, “What you did was really wrong and I actually do have a diagnosis now and I have been being treated for this for years.” But it was really hard because it was that person. And I don’t know if it’s just because I’m stubborn, but it was hard because I was like, “You saw me when I came into this world and now you can’t see me.” And it was like he was looking right past me, and I’m like, “Why can’t you see me?” And that was really hard. And I also felt like he just thought I was dumb. And I don’t know if that was because I was a sassy 19-year-old girl at the time and I was like, “You’re wrong!” I was doing the whole, “You’re not paying attention, you’re wrong!” And maybe he saw me differently. But it was a very hard few months when I was going through that because I just didn’t, I was like, “I’m not crazy, what’s going on?!” And one of my favorite books has actually been Bite Me by Ally Hilfiger. I’m not sure if you’ve read it. Because her story really resonated with me and I’m actually hopefully going to get that tattooed on me at some point, because I think it’s pretty sassy and funny and relevant. But her story, she’s Tommy Hilfiger’s daughter, she basically went crazy with lyme disease and reached a point where they admitted her to a psych ward and totally weren’t taking her seriously. And she was like, “Test my poop! I’m not crazy! I have something wrong with me.” And she had lyme. And her book was the first time I’ve ever read a piece of literature that I’ve been like, “Whoa, this is exactly…” And I remember I sent an ebook copy to my doctor and I said, “Listen to this book. This is what you did to me. Not as intense, but you did this basically.” So yeah, that was really hard. And then another topic that we didn’t really touch upon but sort of did was the insurance stuff. Insurance has been a nightmare. You are managing an illness which takes up so much time of the day. I’m working full time. I’m 22. I have a life, I have friends, a social life. And then I have my insurance life. It’s like a job on its own. It started out in Massachusetts, they actually passed a bill I believe in 2016 or 2017 that if a doctor deems an IV medically necessary, then insurance has to cover it, a picc line. And it can be any MD.
Brianne: That’s great to know.
Hannah: Yeah, it’s great to know, but it’s not often taken seriously. So when I first got a picc line and I was living in Boston and seeing a psychologist at the time, who was behind that bill. And so when she found out, she was like, “What the heck?” My first six or seven months of a picc line was not covered by insurance. My parents paid out of pocket, which was a really… That’s a huge financial hardship for people. And luckly I had graduated early so they didn’t have my college bills on top of it, but treatment for lyme disease and many of these chronic illnesses is a college tuition on its own. Because you’re paying for the meds, you’re paying for the nurse, you’re paying for the blood tests. Everything is out of pocket. And to me, I was just like, “This is so unfair. You think I want this? I don’t want to be doing these drugs everyday. I don’t want to be walking around with an IV in my arm and being looked at differently. And you’re not going to cover it?”
Brianne: Yeah. And I’m not being offered another treatment that would be fully covered, which I think also matters. It’s not like, “Oh, there’s this totally acceptable thing that would be fully covered and have an equally good outcome that I’m just choosing not to do.” Like that’s not what’s happening here.
Hannah: No, they’re just saying, “We’re not going to pay for your treatment.” Not, “We’re going to pay for this alternative method.” It’s, “We’re not going to pay to treat you.” Because the alternative method of oral meds wasn’t working. It wasn’t until I moved to DC, which I thought I was on a worse insurance and didn’t have that law in Massachusetts that I wasn’t going to get covered. But somehow my DC insurance picked it up. But again, you know, they send me, I still get denial letters in the mail today and I call and they’re like, “It’s still registered for POTS, so you’re fine.” But it’s a constant, I have folders and folders of all your insurance claims. Every med I get, every time my nurse comes once a week, there are so many of those, I don’t know what they’re called, statement of benefits that come to me and it’s just absurd. It’s like wake up. No one’s asking for this. So that’s been… and that’s a really hard thing when you’re working on managing an illness. And luckily my financial situation has been okay because I’m still young enough that my parents were still helping pay for my treatment. But many people aren’t in that situation, which is what we’ve talked about before on our last call together is the problem with work. You have to work because you have to pay for your bills, but then it’s hard to work and then it’s hard to manage having to pay for the bills. And so it’s like what do you do? And I’m not sure if you’ve experienced that as well, but it’s managing between managing the illness, treating the illness and trying to pay for all of this.
Brianne: Yeah. And the reality that sometimes, depending on what kinds of jobs you’re able to get, sometimes that job will be actively detrimental to your health as well. So like if it’s causing stress, if it’s messing up your sleep cycle, if it’s doing all this stuff, just the act of working can make you sicker. And so it’s like a messed up balance of trying to survive. And I think especially with lyme, a lot of people just don’t get treated. Like people are making these decisions all the time too. They’re like, “Yeah, there’s this thing that I really want to do….” Or with mold avoidance probably. And with CFS and fibro, like all of the ones that don’t have defined treatments, it’s people going, “There’s this thing that I would love to try that has helped some people and I will never be able to afford it or it’s going to take me a long time to afford it and I don’t know what’s going to happen between now and then.”
Hannah: Totally. Most people can’t afford just the basic treatment. It’s very expensive. Even with insurance, it’s monthly, it’s the doctor’s offices and often these specialists aren’t covered by insurance. So you’re paying out of pocket for your visits, which is several hundred dollars. And for the nurse, and it just all adds up. And to me that’s just… How are you supposed to get better if you’re not getting covered and can’t afford to get better? It’s quite crazy.
Brianne: Yeah. It’s upside down. Definitely upside down. That’s another intervention point, I think. So I think helping people connect with jobs is really awesome. And figuring out what accommodations work. And then I feel like a different intervention point is just educating doctors and insurance companies about the actual experience of chronic illness because it’s missing from that world. But that’s a whole other thing.
Hannah: That’s a whole other… I could go and talk about that for an hour.
Brianne: Yeah. Yeah. It’s good, it’s a rich space. Great. I think that does cover a lot. I don’t think I have any more questions, so I’ll say thank you for talking to me!
[guitar riff]
Thank you for listening to episode 26 of No End In Sight! You can find Hannah on twitter and instagram @hanrosols, you can find Chronically Capable on instagram at @chronicallycapable and on twitter @chroniccapable. You can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb. So you have lots of optional social media follows for this episode.
Since we recorded this episode, Hannah has had her picc line removed, and Chronically Capable has opened up sign-ups on their website. Right now they are focused on short-term projects that pay at least $20/hour.
I’ve got many more stories to share with you, so make sure you subscribe on itunes or stitcher or wherever you get your podcasts.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.