Liz Allen talks lyme disease, chronic fatigue, and intersectionality in chronic illness.
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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 Liz Allen about her lyme disease, chronic fatigue, and how sickness narratives show up in our culture. As usual, I chime in with a few anecdotes from my own health story so check out episode one if you want to hear more about that.
I met Liz at a casual storytelling workshop in San Francisco, and I was totally floored by the way her story captured so many different components about life with chronic illness. Now I’m super excited about her current project, the Invisible Stories Project, which she explains more at the end of this episode.
I want to add a quick content note for this episode as well, which is that we do talk briefly about suicide in online illness communities. It comes up twice, but is very brief in both cases so if you use the jump ahead button we should have moved on to a new topic.
And of course I’ve got my normal 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!
Liz: Hi Brianne!
Brianne: How are you doing?
Liz: I’m doing pretty good actually, you caught me on a very good week.
Brianne: Yay!
Liz: Ton of spoons, if you will, as in a ton of energy this past week.
Brianne: Perfect. Okay, so I do know some of your story, but we’ll start again from the beginning. So were you healthy as a kid?
Liz: So, yes, in a lot of ways I was super healthy as a kid. I was a super active kid. I played a lot of sports. My family was very active. We traveled all the time. Interestingly though, I was born with an atrial septal defect in an anomalous vein, which is heart problems. So a hole in my heart, and one of my veins was plugged back into my heart so the blood was cycling. So I actually was a pretty sick little kid, but just related to the heart problems.
So I was very active, and then I started passing out and I started being short of breath. And so I got dragged around to the doctors. Eventually they found this problem and I had heart surgery when I was eight years old. Open heart surgery, and it was my second heart surgery. So there was that. But once I got the surgery, I got way better. And my dad and the doctors wanted me to keep my heart strength up, it was a very important part of recovery. So I ended up swimming pretty full time, starting at eight all the way through college. So I swam, and I played lacrosse, and I played water polo, and I sailed, and I did synchronized swimming, and I just was super… everyone called me very high energy. That was a frequent descriptor of me when I was a kid, high energy. And I was a typical overcommitted high school kid.
So the heart problems, and I actually did have allergies. I had environmental allergies as a kid and got allergy shots. But outside of that, there was no real other problems.
Brianne: Gotcha. Especially once you can move and get in the pool, which is presumably free from airborne allergies anyway, it’s a good setup.
Liz: Yeah, yeah. It ended up working really well for me, and I loved it. I loved swimming. And even when you’re young swimming’s a really intense sport. So you have morning practice and you have evening practice, and then I was swimming almost all your round. And the one season I wasn’t, I played lacrosse on the varsity level in high school, so I was very active.
Brianne: Running around or swimming around all the time. Okay, and then when did things start to change, or what was your catalyst?
Liz: Yeah, so my catalyst was very obvious. I went to college and I swam and played water polo in college, division one. And I was also rock climbing and skiing and I took snowboarding lessons.
Brianne: All of the active things.
Liz: All of the active things. And that summer I lead backpacking and rock climbing trips in Wisconsin. And I came back to college my sophomore year and just tanked. I just went down pretty quickly and in a pretty… almost in a ball of fire, it was just very dramatic. So I came back to swim, and in the beginning you’re out of shape and everyone’s out of shape. But everyone starts gaining muscle and recovering, and I just can’t, I don’t. And in the beginning, swimming’s a very mental sport, and so it’s very much if you are not swimming well, that is your own mental weakness. Which is what we thought for a while. So there was a lot of pressure on me to sleep better and suck it up and try harder. But it just wasn’t working and everything was getting really hard. And I don’t know how else to describe that, and I wish I had better words for it, but you know, words are really lacking.
Brianne: Yeah, that’s a huge part of the problem.
Liz: Huge part of the problem! So it was hard as in, I felt like I was constantly super jet lagged, carrying around lead, my brain was super foggy. I was really sad a lot because of everything. And I knew my body really well, we had a nutritionist, coaches, and weight training coaches, we had a sprinting coach, my body was known by the coaches and myself super well, and it wasn’t performing the way it had the previous 15 years when I had been an athlete. And so it was just really confusing and frustrating. And I was young, I was 19. I didn’t know any different other than what people were telling me, which was that I wasn’t trying hard enough.
Brianne: And why would you think it was anything else?
Liz: Right, totally. I was like, “Okay, yeah, this is the only explanation.” But eventually my roommate got diagnosed with mono, so the rest of my roommates went in for tests and I got it too. And so they said, “Oh, it’s just mono.” And I thought “Okay, well, at least I have a diagnosis. This will be fine.”
Brianne: Do you know now which virus it was? Just out of curiosity.
Liz: Epstein-barr. And I actually still test positive for epstein-barr.
Brianne: Me too.
Liz: It actually re-cycles. But I actually tested positive for active mono for five years, but in my late 20s. Which is a second part of the story.
Brianne: We’ll get there.
Liz: So now I think I have mono. But my roommate gets mono and starts to get better after a couple weeks, and I get mono and I keep getting worse and worse and worse. And by worse and worse and worse, I mean my heart. So I’m a swimmer, which means I’ve got a very strong heart. I’ve got really good breath control, I can hold my breath for five minutes underwater. I can do three sometimes four lengths of the pool underwater. And all of a sudden, I can’t breathe. I’m sitting at my desk trying to read a book and I can’t catch my breath. My heart would jump to 150 beats per minute. My resting heart rate, and I know all this because we were tracking all this, was 39 beats per minute at the time.
Brianne: Right, which is unreal.
Liz: Unreal. Like, such good shape and it just was so scary. Just so scary, and so people said it must not be mono. So I went back to the doctors and they said “Oh, it’s got to be depression and anxiety.”
Brianne: Sure.
Liz: And I thought, “Wow! This is wild! This is depression? This amount of heart pain and intensity and the shortness of breath. I just, I couldn’t believe it.
Brianne: The physical manifestation of something that you think is mental.
Liz: Yeah, the physical manifestation of depression. This gave me a whole new… I was so more how much more empathetic. This is nuts. It’s so hard to get out of bed. I was also sleeping a lot more, I was taking naps. I was having a really hard time doing simple things, like walking to the food court to get food. Everything seemed so hard. At this point I also was starting to be in pretty substantial pain, but not pain in the way I would describe it.
So I had a broken thumb at the time, and they were taking off my cast, taping my thumb to my hand, which hurts so bad, and I was swimming with this broken thumb. And it was stabby, shooting, nervy pain because it was a broken bone that they were manipulating every day so I could not miss practice, because that’s what division one athletics is like. And so for me, pain was that. It wasn’t this dull, achy, deep… almost I felt like the marrow in my bones was hurting, or filled with lead. I know that sounds a little weird, but that’s what it felt like and I just didn’t associate that with the word pain. Pain was broken bones.
Brianne: Pain is sharp and something you can see.
Liz: And something you can see, exactly. So I had a hard time using and applying that word. The only thing I could say is, “I’m tired, I’m tired.” And everyone said that’s what depression is. Depression makes you tired and you sleep a lot, and anxiety makes your heart race. I had no reason to not trust the doctors at this point, so I was like, “Okay, great, so… Fine. I’m depressed and I have anxiety and let’s fucking fix this so I can go back and swim. My life is out there, and I want it back.” So I found a therapist. I went on wellbutrin. I’m a really type a person.
Brianne: This is a solution.
Liz: This is the solution, I will do it, I will accept it, and I will do it. And so I did it, and nothing got better. Not a single thing got better. In fact, it got way worse because it felt like everything I said, they’d say, “Well, that’s just from depression.” And I felt so gaslit. My experience wasn’t believed, no one was listening to what I was actually saying, it was a really traumatic experience. So here I am, little college sophomore still trying to swim. Exhausted, like exhausted in the deep, deep sense of that word. In pain. I’m having radiating hip pain. I start having night sweats, drenching night sweats where I wake up and my entire sheets are wet and I’m covered in sweat. I’m having all these heart problems. I’m having terrible brain fog, I was a straight A student my freshman year at Dartmouth and then I’m having a really hard time reading, I’m having a really hard time keeping up, which just wasn’t like me. Everything feels hard.
I literally went from working out four hours a day to barely being able to walk up stairs. I was fainting on stairs, I would take stairs three at a time, and then little black dots would come and I’d pass out. And then in the winter, they were like, “Okay, this isn’t going away.” Now it’s been five months of this and so I started going to cardiac… I went home over Christmas and my parents were like, “We don’t recognize you. What happened?” But for me, the change had happened over four months, and we had some sort of loose explanation that it was depression, and I wanted everything to be normal, so I just kind of thought it was.
I think humans are very adaptable, and so I’d gone from a ten to a three and I just adapted. I thought, “Okay, my life is just this hard, period. I’m just not that tough, and I have depression, and life is hard.” And I went home and parents were like, “Bullshit, fucking bullshit. This is not depression, Liz, this is insane.” And I’m so happy they were there to check that. I needed it, I needed the outside check. And so they wanted to set up all these doctor’s appointments for me, but of course I thought, “I’m a college kid, which means I’m a grown-ass adult. You don’t get to help me.” And so they were doing the best they could. They were sneakily setting up all these doctor’s appointments and then just emailing the dates and times to me and my roommate. And my roommate was the one who was taking me to all these appointments.
Brianne: It’s good, if it works.
Liz: It totally worked. And so I went to a cardiac person who was pretty sure it had to do with my heart surgery. And so I got diagnosed with arrhythmia and POTS, postural orthostatic tachycardia syndrome. And I got diagnosed with, I think at the same time, adrenal fatigue. And I went to an infectious disease doctor. Right now, I’m already up to six diagnoses, and I’m like, “Fuck if I know.”
Brianne: How do they all talk to each other, who knows.
Liz: Yeah, and I’m like, “I have all of these?” And I go to an infectious disease doctor who was the first guy who really listened to me. And the appointment was about 45 minutes, and I talked for 40 of it. And by talked, I mean cried. I just bawled. this poor man. Here I am, this 19-year-old athlete, just bawling and bawling and bawling. Half because I’m grieving my life, and half because I am scared. At this point I’m really sick, and nothing is working the way I want it to. And I can’t get better, which is really frustrating to me.
And so he was the first one who said, “Listen, we’re going to run a bunch of blood tests, and even if none of these come back. I want you to know you’re sick. This isn’t in your head, don’t believe anyone who tells you that. And you can trust yourself and your body.” And he was the first one to say, “I believe what you’re telling me.” Which was so huge, and I’m sure you’ve experienced this too, doctors are so quick to dismiss women. And they’re really quick to dismiss young women, I think, in particular. I’ve been to 45 doctors total in this experience, and I’ve had so many of them say, “Well, whatever you’re feeling isn’t real.” And you are not in my body, you do not get to testify to my experience. And now that I’m older, I’m 35 five now, now I just fire doctors. I’m like, “No, forget it. Get the fuck out of here! You don’t believe me and you don’t want to listen to me. No. I know my experience and I will stick by it.”
And I’m actually pretty flexible with diagnoses these days. Whatever you want to call is wrong, fine, I just want to get better. So I don’t attach myself to diagnoses, but I’m very clear about what’s going on in my body.
Brianne: Yeah, I think about that a lot, and with talking to people. Because for some people, it can be so helpful when there are syndrome-type diagnoses basically. So if you have fibro, or if you have chronic fatigue syndrome. If that is helpful for you to have as an identity, then that’s really great. And if it doesn’t work for you to build an identity around something that’s only a piece of what’s going on, then that’s great too. But having a plan of action feels very helpful. I think one of the things that can be really frustrating with dismissive doctors is that they can use that diagnostic tool of one of those, or mental health stuff, to basically send you away and not see you again.
Liz: Exactly, exactly. And it is tough. But not all doctors can deal with people who are chronically ill, because it is not linear. It is like a roller coaster. It’s very complicated. People are very sick. They’re very sad, because they’re very sick. And I don’t think it’s for every doctor. And it’s no fault of your own if you can’t do it, but don’t tell me I’m crazy. How about you just tell me, “I can’t take you on as a patient. It’s too complicated.” That’s fine.
Brianne: I would love a lot more of that instead of just, “Well, it’s probably depression because of this ten point checklist that I gave you.” Instead, just say, “This is outside of my scope, here’s someone that I refer to now.”
Liz: Right. I had one doctor tell me, it was essentially a fibro diagnosis, which is essentially, “We don’t really know… it’s probably depression too.” And I said, “Well, what about the night sweats? What about my shortness of breath? I am an athlete, I should not be short of breath. My resting heart rate is 40, get out of here.” And she was like, “I don’t know, I think that’s just part of the symptoms of fibro.” And I said, “It’s not a symptom of fibro. Night sweats are not a symptom of fibro, what are you talking about?”
So winter rolls around, I’m a sophomore and somebody believes me. But so do the heart doctors who are convinced that I need to… they put me on beta blockers to try to lower my heart rate, and they tell me I need a pacemaker. And I’m like, “Oh, okay, pacemaker. Okay, fine.” I’ve already had two heart surgeries, maybe I need a third. And so I call my parents and tell them DHMC wants to put a pacemaker in, and they’re like, “What?! No, you’re 20! No pacemaker!” And so they convinced me to delay on the pacemaker, which was super smart, and they tell me to go back to my original heart surgeon to see what they say.
So my parents start making all these other appointments for me for summer. And summer because I end up going to Mexico to study abroad in the spring. which, weirdly enough I shouldn’t have gone, I was too sick to go. But because I was no longer swimming or working out, I actually felt quite a bit better. Because I was sleeping a ton, classes were very easy. I was just traveling, hanging out with my friends, and I actually felt quite a bit better. So I went from about a three to a six. And in my head, I thought, “Great, I’m actually not sick anymore.”
Brianne: It’s all fine.
Liz: It’s all fine. So I go home and tell my parents I don’t need to go to any appointments, I got better in Mexico. And they say, “You’re not better. You are still half of who you used to be. Just because you’re not as sick as you were at Christmas doesn’t mean you’re better.” Again, super helpful to have people put that in perspective, because I had lost perspective. So they drag me to my old heart surgeon’s, and I get a whole bunch of heart work up. And the heart surgeons say my heart is fine, it’s not my heart.
So then we go to an infectious disease doctor, rheumatologist people, endocrinologist. My hormones come back fine. An infectious disease doctor finally does a full workup for lyme disease because I live in Connecticut. My grandmother lives in Lyme, Connecticut. Everyone I know has gotten lyme. And it turns out it was lyme. And I get a CDC, Centers for Disease Control, positive lyme test with co-infections of babesia and an active epstein-barr. So it turns out my mono was a correct test and it was active. And I had babesia, which is a co-infection with lyme, a tick-borne illness that causes night sweats.
Brianne: And a sister infection to Malaysia? Not to Malaysia. That’s the wrong one.
Liz: Malaria.
Brianne: Yeah. Malaysia is a place. To malaria, which people have heard of.
Liz: Yeah, it’s very similar to malaria, babesia. And then lyme. And when that came up, I tested fairly positive for lead infection. I went to a very old elementary school that later got found to have lead in the paint and stuff, so they ended up doing a big renovation on my elementary school. Apparently, I had some heavy metals. I also had almost no adrenal function at the time. So you do these, little spit tests and they test how much cortisol you’re releasing and I was releasing almost done.
Brianne: Oh yeah, I did mine when I was going to a wedding, because that was the only time that it would work for me somehow. And I don’t think it was a good idea.
Liz: You probably had a lot of adrenalin, going so it might have been higher.
Brianne: Yeah, I went back to my hotel room for half an hour, but I think it was… yeah, you have to spit into a straw. It’s gross.
Liz: It’s gross. But it was a two-and-a-half-hour-long appointment, which was amazing because it’s really hard to explain everything that’s happening in 15 minutes. And the other thing that was great, is he gave me this two-page list of symptoms, and things that I hadn’t put together as being a problem were on that. So, I didn’t have words for brain fog, and confusion, and short-term memory loss, word find issues, all the things that were happening. But I didn’t know those were related. I thought they were just because I was tired and not because there was inflammation or infection in my brain which was making it hard for my synapses to fire, so that was really helpful.
However, it had been a full year. I had been very, very sick for a year and lyme you’re supposed to treat immediately. And you treat with this one month of antibiotics and it’s supposed to go away. And so we started there, but he said, “Listen, you are really sick and you’ve been sick for a long time. I’m not sure it’s going to work, but let’s try. If it works great, and then you won’t have to see me again.”
So we started with antibiotics and it didn’t… it worked a little bit. And this is what ended up happening for the next four years is we would try what we call a protocol, so a series of drugs, started with antibiotics, we ended up adding antimalarials because of babesia, we added antiinflammatories, and just a whole series of other, usually combination of antibiotics. And I’d take them for three months or so, and I’d start to feel better. And of course I was young and in college, and to me that was the narrative. You get sick, the doctor prescribes these drugs, you take them, you get better. And that’s what I desperately wanted to have happen. So as soon as I started to feel a little bit better, I’d be like, “I’m better!”
And when I’d go off them, I would crash again. Just crash all the way back down to the bottom of my worst. Back to a three, where I can barely get to class, sometimes I can’t even really speak, I’m in incredible pain. I’m crying every morning because I can’t get out of bed. And I’m someone who, I swam with a major concussion and a broken thumb multiple hours a day. I weight lifted on a broken thumb. I’m a tough kid. and I was just exhausted. And to a point that I just, I was just crying a lot. It was just so hard. It was so hard. So we fought this battle back and forth for years, for four years. Where I would take, you know, omnicef, mepron, malarone, zithromax. So z packs, you’re supposed to take five, you’ve got a little z pack in this cardboard. I took two zithromax a day for two and a half years, a massive amount of antibiotics.
And it was back in 2004, so there was not a lot of research done on this. So everything we did, he never claimed he knew, to my doctor’s credit. He said, “Listen, you have lyme, we don’t know how to treat it when it goes past a certain point, so this is all experimental. You can stay sick. You can do whatever you want, you can go see another doctor. You can try something else. You can come back if it doesn’t work. I’m not going to force you to try these things, but this is what we’ve been trying, it works for some people. And the thing is, I will stick with you until we find something that works. So you can sign up for this rollercoaster and experiment or not.” And I was like, “Sign me up! I’m supposed to be swimming, get me back in the pool!”
Brianne: Yeah, “Whatever it is, whatever it takes.”
Liz: Whatever! I don’t care, give it to me. Yellow paint? I will swallow yellow paint. I will change my diet. I will do all these things. I will stop drinking. I will stop having coffee. And I wasn’t the perfect patient because I was young, I was 20 and everyone around me was drinking and smoking and doing whatever, so I certainly was not perfect. In fact, I was pretty far from it, but I was willing to try whatever it took to get me better. And four years into it, it just wore me down in a way that was really tough.
You and I have talked about this, but the narrative around illness is very flat. It is: you get sick, you get medication, you get better. And that’s how most illnesses work. Everything from a yeast infection to bronchitis to even cancer kind of works like that these days. Where it’s like, “You have this type of bronchitis and we’re going to give you these medications.” You take it for seven to ten days, and then you rest a lot and drink your orange juice and you’ll be better. And really I had no reason to believe anything else, and I hadn’t heard anything else.
There is just not a loud enough narrative around chronic illness. And now I know a ton of people who are in this boat, who live in this liminal stage where you have a diagnosis, some days are good, some days are bad. Some months are ok, some months are awful. And you live in this flare cycle of what my doctor back then called the rollercoaster. And he’d say, “Don’t ride it too fast, because the highs are going to be great, but the lows will be devastating. So you’ve got to stay kind of in the middle. And he was right. I have months or days where I feel awful, still, 15 years later. And months and weeks like this week, I’ve had a great week, when I feel great. And I wish there was a more nuanced narrative, which is one of the reasons why I’m so excited that you’re doing this podcast, is that the narratives are just really flat. And there’s so many people in our camp, people who have MS and EDS and lupus and crohn’s. There are so many people. One in ten, or one in…
Brianne: I’d love to know the stats on it because whatever’s out there right now, I’m sure is inaccurate. Partly because I think so many people are diagnosed with depression where that is not their underlying problem.
Liz: Yeah, totally. I just had a friend who had been diagnosed with depression for a long time, and it came out that she has arthritis. And it’s like, well maybe you have depression because you’re in so much pain all the time.
Brianne: And everyone is telling you it’s in your head. That’s a very confusing, disorienting situation where your mental health is not going to be okay. There’s no way. It’s impossible.
Liz: Right, exactly. And it’s just super frustrating to have to fight that all the time. Especially when I was younger and I didn’t have the tools to explain, I didn’t have the words when I was in my early 20s. Nobody was sick, I knew nobody who is sick, and everyone just thought I would be getting better. But I didn’t get better. I just had periods of better and periods of worse.
Brianne: Yeah, and people just don’t… I mean, everything that you said. And I think because there isn’t media around it there’s a huge empathy gap because people don’t know what questions to ask because they haven’t been exposed to this story in a safer environment, we’ll say. So when we were younger if someone’s parent was diagnosed with cancer, you could watch Stepmom or you could watch a million cancer movies. And you could go and you could watch them and you could have lots of questions and you could rage about it. And then you could go back to the person that you wanted to support and be ready to be supportive. And there’s not a lot of resources right now. And especially when the internet was younger, we’ll say, in the early 2000s when there were even fewer resources. So you don’t want to ask your friend the wrong question about their weird health problem that you don’t understand, and so you decide to wait for it to go away. And then it doesn’t go away.
Liz: Totally. Back when I got my lyme diagnosis, there was literally one super-crappy blog that existed, from some moms in New Jersey. They were more worried about the color of the blog than the content. But I didn’t meet anyone for years, I met nobody who had lyme. And I met almost nobody who was sick at all in my age bracket. It was so isolating. I didn’t know how to describe it and when I did it, people would say the dumbest shit like, “I’m tired too.” What? I don’t mean tired like normal-people tired.
Brianne: We’re not talking about the same thing.
Liz: We are not talking about the same thing. Or like, “Have you tried yoga?” Or,”Breathing deep really helps with energy.” And I was like, “What are you… if I had a broken leg, would you tell me to breathe deep? No, you would tell me to go to the doctor and get a cast.”
Brianne: And then after, if you need to cope with it, that could be helpful. But you’re coping with waiting for the treatment to resolve. You’re not coping with the problem.
Liz: Right, exactly. And I know these people are very well intentioned. And for years it would devastate me because I was so sick and I couldn’t describe how sick I was. And I didn’t have the language because there was nobody else talking about it. It was me in my own brain. The world felt like it was barreling by at 60 miles an hour. I could only go 20 and of course, I was young, so everyone was partying, and proving themselves. By the time I graduated, I moved to New York. I graduated in four years, which was crazy.
Brianne: I was just going to ask that. So you graduated on time. You stopped athletics it sounds well.
Liz: Well I stopped swimming. And then I ended up playing water polo all the way through.
Brianne: Which is harder.
Liz: Well, I don’t know if it’s actually harder, but it’s certainly masochistic.
Brianne: It’s an aggressive sport.
Liz: It’s an aggressive sport, it’s really hard. But I seem to have, and this is still kind of true, I can push through. I can push very hard for three days and then I crashed. I can push kind of hard for a couple months, month or two and then I crash. So by the end of every season I’d be in awful shape, you know, just exhausted, crying all the time, and unable to think et cetera. But the first month or two would be kind of okay. So I graduate from college, I’m training for a triathlon.
Brianne: Sure, of course.
Liz: Because I’m having a very hard time, as you can hear in the story, accepting that I might be truly sick for any sort of period of time. Part of this is that it was my identity, my whole identity was athlete, and I was proud of my body. That was my friends, all of my friends were division one athletes, or had skied professionally on the US ski team or whatever, and so it was really hard. I was going to have to change friends, I was going to have to lose my identity and my stress coping mechanism and everything. So I didn’t want it to be true, and I was not very accepting of that. In fact, it took me a decade. A serious decade to accept it.
But so I was moved to New York City. All my friends were drinking a lot, hustling for their careers. I lasted exactly a month and half, six weeks, and crashed so hard. I was bartending. I collapsed. I ended up going back to my lyme doctor, and he said, “Alright, now it’s been four years, let’s do something a little more aggressive.” So I did intravenous antibiotics. So I got a central line, which is a tube that goes directly into your heart, tubes come out of your chest. And I got intravenous antibiotics every day, twice a day, for eight months. Ended up being on them for eight months.
Brianne: It’s so much.
Liz: It’s so much. So I lived at home, the first couple months I could barely walk. I was in my bed, and my mom was spoon feeding me soup. I’m 22, 21, everyone else lives in New York City, and I am literally in my childhood bedroom being spoon fed soup. I was just devastated. I felt like I’m supposed to be an adult, this is my time. I know nobody who’s sick. There’s no instagram, there’s no facebook groups at this point, there’s just one crappy blog, and I’m by myself. I just can’t find anyone. I can’t find any information.
So that was kind of a super low for me in my health journey. But interestingly, it really helped. So by the end of eight months, I was feeling a lot better. I would say I was still a seven or an eight, but I was above a six. I started being able to drive. I started being able to walk again, because I had been in a wheelchair for part of that time.
Brianne: And how does this interact with insurance for you, as a side question?
Liz: Well, so at this point, I’m still on my parents’ insurance. I’m cobra-ing. So that’s useful, and my parents are really driving the ship. I’m so sick, I could never have done this for myself. Because I was so sick and so confused and at points both of them helped me to the car to get to doctor’s appointments. They’re keeping meticulous track of everything in excel trackers, and insurance is covering almost none of it. My intravenous antibiotics was $66,000 for that eight months.
Brianne: This kind of stuff, I think it’s important also. Because it just blows my mind, everything about it basically. I just talked to someone who currently is doing a treatment, not for lyme but for immune problems, whose treatment is $10,000 a month, and covered by insurance in this case. But what if it’s not and that’s what you need? That’s just the cost? That’s what we’re doing? Okay.
Liz: Right and I think about it a lot. Because I know a lot of people now who are very sick, who have lyme, who’ve had lyme for a long time, and have all these other problems. And they just can’t get the treatment, so they’re literally as sick as I was, in bed, barely able to feed themselves and they don’t have the money. And so they’re literally stuck there. And then what happens is people kill themselves. You can’t live like that. And we have lost a number of people, we’ve lost five people in the last two years in my virtual communities of sick people who talk on instagram, I’m a big instagrammer. And so I’m a part of communities of hundreds of sick women, mostly, couple men. And we’ve lost five people in the last two years. People just cannot mentally, physically keep up with that. And I feel so lucky that I had class privilege, and my parents had class class privilege where it wasn’t… we sold a car, it wasn’t the easiest thing, but it wasn’t a no. And for the last ten years, I have had a life, and I know people who have spent the last ten years exactly where I was in 2006. In bed, barely able to feed themselves, not able to move anything forward. And I held down a job for a long time and that’s because my parents were able to afford it. And the classism that’s inherent in that is just so unfair. Health is a right. It should not be based on your class privilege.
Brianne: And it’s not even just the treatments, it’s being able to go back over and over again until you get the right diagnosis to even try these different protocols. Since exactly what you just said, that even now a lot of it is pretty experimental. So there’s other problems, but I think a lot of people go to whatever care they have access to, and then get told they’re depressed and then go home and then…
Liz: And accept that, like, “Okay, because the doctor told me.”
Brianne: “And I don’t have the tools to find another doctor.” And I don’t mean that like, “And then they accept it and they’re idiots.” No. And then they go home, and they think it’s wrong, and they do not have the resources to do anything about it and we do not make it easy culturally.
Liz: And imagine if you don’t speak the language. Let’s say English is your second language, and you have to have one of your kids with you to help you interpret and there’s just so many things. I’m a lawyer now, I can look at a doctor and say, “I disagree with you. I can do my own reading, I can do my own research, and I can disagree. I’ve got my own network of doctor friends that I can call and see if I agree with you or not.” And that’s also class and educational privilege, to be able to say, “I don’t have to believe you, doctor.” That also isn’t something that’s available to everyone.
Brianne: No, not at all. I really appreciate it in some stuff stuff that I’ve read, I really liked the book Through the Shadowlands, I end up talking about that a lot. But she talks a lot specifically about how her former in-laws ended up loaning her or giving her money. And I think something that this one piece, not even that money helps you get better necessarily, but money gives you the resources to figure out what’s wrong. And I think we have to talk about that.
Liz: Yeah, one hundred percent. I also think it’s important to keep the conversation intersectional too. So as a woman, I have privilege on a lot of axes, but I don’t have health privilege, and I don’t have gender privilege and it is maddening to me that people will write off my pain and my experience because I’m a woman. But that is far, far worse for women of color. In terms of infant mortality rates, it is the lowest in the United States. In terms of getting good care, accurate care, appropriate care, people believe women of color, it’s even harder.
So my race and education and class background help me when I’m in the doctor’s office. Medicine is stuck with all of the isms of all the rest of the world and it’s just so unfair. And it’s hard enough to be sick and try to navigate this stuff, and if you don’t have the deck stacked with you, it is nearly impossible, and I think that’s also something that needs to continue to be talked about.
Brianne: Yes, agree. So you were just saying you were getting the IV treatment and it made a big difference. Basically, you’d been using a wheelchair. You’re at your parent’s house.
Liz: Yeah, I was in a wheelchair at my parents house and by the end of the eight months I was back. I was back rock climbing, so I was working at a climbing gym. And as soon as I started feeling better I said “Okay, awesome, I’m going to go back to what I wanted to do.” Which was working for Outward Bound being an outdoor instructor. So I went back to backpacking, leading backpacking trips and was kind of in remission, I would say, in a way that was really exciting. I would not say I was a ten, but I would say I was maybe a nine, eight, bounced between seven and nine, which is pretty high.
So I was pretty functional, but not a hundred percent for sure. And I also just didn’t want it to be true anymore. So when anyone talked to me during this period, it was about a five-, six-year period, I would say “Oh, I was very sick. I had lyme, it was terrible. I’m fine.”
Brianne: “It’s over now.”
Liz: It’s over. And I wanted to believe that narrative that I had treated it and it was over. And that I hadn’t done permanent irreparable harm to my immune system, which appears to be the case. So I went back, I worked. I had a very bad rock climbing fall, and I shattered my ankle and had pins and plates and ended up having four surgeries on it and it gets fused. So I do that over five years, and then I end up in the classroom. So I do Teach for America, which I end up working incredibly hard for three years and working eighty hour weeks. And by the end of the first year, I am sick sick again. I am crying every day, I’m so so tired, I’m night sweating again, I can’t seem to catch my breath. Things come rolling back in and the next two years, I kind of fight it. I’m running on full adrenaline, I’m drinking six cups of coffee a day, I’m drinking a bottle of wine at night, I’m passing out with my clothes on, waking up with tears because I’m in pain as I’m sleeping.
And by the end of three years, I’m decide I have got to get out of here because I am sick again and I can’t. I push it off literally for two years, maintaining to people that I’m fine. Anyone who asks me, I’ll tell I’m fine. And I’m clearly not. And so I make this decision that I need space. I have to figure out how to get enough space to get better, to actually prioritize my health. But I don’t want to lose any opportunity cost at this point I’m 30, 29. And I don’t want to take time off. I don’t want to go back and live in my parents’ bedroom. I need to be doing something where I can either get loans or whatever, so I decide to go to law school, which sounds silly.
Brianne: Known for being easy ride.
Liz: But it was a lot easier than teaching, and you have all of this blank space. So you’re not in class that much and yes, you have work to do, but you’re not disappointing the entire future of the world by not doing your work. So I go to law school in Seattle, Washington, which also is known to have very good alternative care, incredible hospitals.
Brianne: It’s where Bastyr is, which is one of the naturopathic colleges. My sister went there.
Liz: Yeah, exactly, exactly. And the entire health care system up there is just super robust. And I’ve got friends from college there. And so I go to University of Washington and I spend the next three years both incredibly sick and kind of tromping around from doctor to doctor to doctor again, trying to find real solutions to the problem. And so I get diagnosed. So, my lyme still comes back positive. So does babesia. Relapsing fever, which is another tick-borne illness starts showing up. Epstein-barr is active again. My symptoms are fairly similar, like brain fog. At this point I’m getting migraines, I’m getting constant migraines. I had 18 days of migraines.
Brianne: Had you had those before?
Liz: In college, when I was really sick, I was getting migraines too, but they weren’t as bad as they were when I was in law school. I couldn’t look at a computer screen. I couldn’t look at my phone. I was wearing glasses and a hat and everything was super scrambled, my poor friends from law school were wonderful. There would read me the outline, and read me the notes out loud and bring me food, because I was not doing well. And at this point I started messing around with diets too, which I know you have done. So I tried the whole thirty, I went paleo, I tried GAPS, and all of that really helped. So as soon as I cut out grains, within two weeks my migraines were gone and they’ve never come back. So I’m a big proponent of food to help with certain things. And I think for me my inflammation was so high, so there’s a test called the C4A, you’re supposed to be around 2,000, the first time I took it, it came back at 10,000. So I was five times where I should be, and they think that there was literally just so much inflammation in my brain, that that was what was causing all the migraines.
And so as soon as I started cutting down the inflammation, including cutting out coffee, cutting down booze, I started feeling the worst of the symptoms were disappearing.
Brianne: Just took some of the edgoe off.
Liz: Took some of the edge off. So then I started going back and pulsing on antibiotics, which means I’m taking ten or 14 days in a row, and then I’m off for a couple days, and then I take them again to try to mitigate my symptoms. I’m doing Myers’ Cocktail IV, so I’m going to an IV lounge once a week, and I’m getting a Myers’ Cocktail and glutathione, which helps your liver and immune boosters. Again, I can’t seem to stay healthy.
I’m also in law school, and I do end up working fairly hard. Although I start tracking my sleep with a very aggressive sleep tracker, turns out that’s a huge lever for me. So I sleep between nine and ten hours a night every night. I have for the last five years, and I had this sleep tracker app that was telling me… I thought I slept eight hours, but it turns out that was a lie. I was sleeping between six and seven. And so as soon as I started tracking, I was able to fix that fairly fast. So between the diet and the sleep I had gone from about a five up to a six or seven, depending on the time of day. But still in all of law school, I was never above a seven, and I was as low as a three. So my worst was pretty unfunctional. So the two mark is when I start not being able to feed myself. Which did happen at the very end of law school.
Brianne: Which I want to ask you more about, because I totally experienced that and I realized that I think I’ve alluded to it in a couple episodes, but not actually talked about what that means. So when you say not able to feed yourself what I would guess is that one, you have dietary restrictions that really make a difference, and so getting food that is going to support your health that is already prepared is incredibly difficult. And two, actually preparing the food and getting the food is difficult. So how does that work for you, or what does that mean?
Liz: It usually means I’m spending 14 to 18 hours in bed, I can barely get up to go to the bathroom. The idea of getting into a car to drive, to go to a grocery store, to walk, to figure out what I need. I can’t even think enough to know what to pick up at a grocery story if I were even able to get to a grocery store. Because I obviously can’t even get there, and even if I did, I literally do not have the synaptic brain control to know what to get. And then if I got it back to my house, I would certainly not be able to stand to cook, I can’t follow a recipe because I can’t read the recipe because I can’t read. And so all of a sudden I’m stuck in my bed and even the idea of ordering food gets really hard because it means you have to open a computer, you have to figure out what you want, you have to be able to google something, sort through options, find one, figure out how to call, know your own address, all of that. I know that sounds so crazy, but that’s so impossible to do when I’m that sick, I can’t do it.
Brianne: Yeah, I have really vivid memories of some of the really specific moments. Once thinking that I was okay enough to go to the grocery store, and I was with my husband. And I ran out of steam in the dairy aisle and he had kind of wandered halfway down the aisle to get something, and he came back and I was just staring at the cheese, and he was like, “I know that look, we’re done now.” Or another time that I had been having a really good day and it was before I found out that I had POTS and I didn’t really know about POTS. And I thought, “I’m feeling pretty good and I haven’t prepared food in months, I’m going to chop up these brussels sprouts.” So I was standing at the counter doing that, and I just slowly got red and sweaty and lightheaded and all of these things. And I just thought “What is happening to me?!” And really it’s that my heart thought that I was sprinting, and so my body thought that I was sprinting, but I didn’t know it at the time. And there’s just so many, so many things that go into eating that are difficult.
Liz: So hard, but it’s so important. So when I’m in bed that much that I’m down at a three. And one is someone using a bedpan, and I’ve been there before, someone’s helping me use a bedpan and spoon feeding me soup. Or I guess one would be hospitalized. So after I graduated from law school, again graduated in time. But by that fall, I was really, really sick again. I was back down a a two. I was not feeding myself. I was crying every day. I was exhausted. I couldn’t make sense of anything. And I found a different lyme doctor, went to her, and she wanted to test for mold. Because I know you have this big nail, but that might not be the only nail and let’s look at something else. So I test positive, very positive for mold.
Brianne: What kind of test was it? Was it an antibody test on or a mycotoxin test? Did you pee into something or did they take your blood?
Liz: They took my blood.
Brianne: Okay, so probably antibodies.
Liz: Yeah, so they took my blood. Or maybe I did pee, I don’t know.
Brianne: It doesn’t really matter.
Liz: It doesn’t really matter. I get diagnosed with mold and at this point I have taken a job down in San Francisco working for tech. And I chose to work for tech because they have great insurance, flexible working hours. I took a job that was what I considered well beneath my skill level because I was not feeling well. And I was afraid if I did anything else, I wouldn’t make it. And I needed to be able to go to all my doctors. So I was moving. And so I was like, “Let’s just go big guns. Treat this mold with the biggest guns you have.” And so I ended up cholestyramine. Which was developed by the US military, to fight, what’s the gas? Agent Orange. So cholestyramine was developed to detox and get Agent Orange out of soldiers’ bodies, and so it’s very strong. And I was on it for, I guess, two months. And within six days, I went from sleeping 18 hours a day back down to sleeping ten. It was amazing. It helped so much. I went from a two up to a five within a week on cholestyramine. I mean, it was amazing. And I thought, “Okay, this is great.”
So within two months, I was out of the depths of two to three. But everything was still very, very hard. And this was three years ago. And so I’ve spent the last three years, I’ve gone to somewhere between 100, 125 doctors’ appointments a year. I’ve spent $10-15,000 out of pocket every year. And I am now both at the chronic fatigue clinic at Stanford University, which is a big research clinic, and I have a lyme literate doctor, and then I have a naturopath and I have a masseuse and I have an acupuncturist, whatever, all of these litany of things. And I’m big in the camp of like, “I don’t know. If you don’t think I have lyme that’s, fine. I don’t care what you think I have, what do you think I should do?” And I’m willing to try it all. If someone tells me to throw kale over my left shoulder every morning, I’m like, sure, I don’t care. The placebo effect is real and if that makes me feel better, great.
I don’t care about the science anymore. I used to care a lot, I don’t care at all. On a personal level. I care for all of us that the science catches up. Buut on a personal level, I have a salt lamp, I have essential oils, I do EMDR,, whatever. I went to Bali and did weird spiritual psychic healing. I don’t care, I will try it all. Magnesium in taurine shots. I did artesunate, I just did a whole push of IV artesunate. So both on the western side of experimental hard drugs and on the way woo woo side. I just feel like at this point, I’ll try anything. And I’ve been out on disability for the last year, so I haven’t been working or I’ve been working very little. I kind of work quarter time as a lawyer doing policy work. So that’s bringing you fully up to speed.
Brianne: Here we are now!
Liz: And here we are now. And I think the interesting thing is, I’m super excited, I think there’s a little bit of momentum around sharing stories. With Natasha’s project and your project and being a part of this instagram community where people are connected through hashtags by their diagnoses is really cool. So in my 20s, I did not know anyone who was sick, and now I know hundreds of people that are sick, and whose experiences are very similar. And it’s given me language, it’s made me feel less crazy, it’s helped me not be so emotional when someone’s like, “But you don’t look sick.” And part of that is iconography because all we have is the wheelchair. And part of it is that our stories aren’t loud enough. As with all the isms, like sexism and racism and whatever, people don’t really like to believe people unless they can see it. They’ll say “Oh, you weren’t discriminated against, I didn’t see it.” Well, right, but you’re not in my body, you didn’t experience what I experienced, you know, me too. I feel like this is a really important turning point in terms of sharing stories.
Brianne: Yeah, yeah, thank you. And I do want to talk more about that, and then I also have a question. Because I am totally with you that I think we need more research both in terms of what is causing things and also in terms of what treatments are working. Because I think it’s a huge problem that say dietary interventions aren’t very well studied because they’re not going to make anybody any money. And so it tells you to write all this stuff off as quackery, but obviously some of it is working or some of it is helping some people, and it would be really great to know why and who and all of those things. So I’m with you on that.
And I also will try anything. I’m not out there blogging about how everybody should put essential oils up their nose like I’m doing right now, because I don’t think that it’s the answer for everybody, but I’m willing to try it, and it has helped me and I think that’s good. I think we end up with this weird world where because there’s not enough information and there are so many things worth trying that might actually help or might be the placebo effect, it creates a space for fringe people to say, “I’m an expert and everybody should do this weird thing.”
Liz: Yeah, totally. And I think eventually we will figure it out. But I’ve also realized how similar people who have autoimmune diseases and people who kind of stay sick, there’s so much similarity between, I don’t know, these diseases are not siloed. whatever is happening on the cellular bottom level, it’s happening to all of us. And I think it’s very similar. So in some ways I’m like, I don’t know. So I have chronic fatigue and they want me to take antivirals because my natural killer cell count is very low. I have less than 20% of the natural killer cell count I should have, but no one knows why. And part of me thinks maybe it’s the same thing that’s making my national killer cell count low that’s making whatever other disease that is manifesting in a different way.
But I do think we’re just getting some research. And being involved with Stanford has been really interesting because I’ve been a research patient there. So they’re trying the hormone thing, and they’re really trying to narrow the definition of chronic fatigue so it’s not just that you’re tired, but that you have chronic fatigue if you have high inflammation and low natural killer cell count. They still don’t know exactly why, but they’re trying to make it and more narrow, applicable, diagnosis rather than just a widespread “you’re tired so we’re not going to deal with you” sort of thing.
Brianne: And they’re working on diagnostic tests, right?
Liz: They’re working on diagnostic tests, but they’re also working on pathology and biomarkers, which ultimately goes to diagnostic tests.
Brianne? Yeah, and that’s super interesting. The more people that I’ve talked to you, the more I think there’s definitely some widespread immune dysfunction. So it’s not necessarily that there’s a bunch of people with chronic lyme and chronic lyme is a problem. It’s that there’s a bunch of people with some kind of immune dysfunction that we don’t understand, and that’s why they’re not able to successfully get rid of this bacteria that other people are fine with what, four weeks of doxy?
Liz: Exactly, that’s exactly where I am too. And it’s interesting having gone from 2003 when people didn’t know anything, and I’ve been in the game for 15 years and there is a lot more. And IVIG has been really helpful for people and it’s like, why is that really helpful? Stem cell replacement has been helpful for a lot of people and why is that really helpful? And there are some really wild therapies, I’m sure you know, and part of it is that it’s expensive to try.
Brianne: I think IVIG is the one that’s ten grand a month.
Liz: Yeah, it is ten grand a month. But for people it can be a game changer. I’ve seen people go from bed bound to walking on IVIG and it’s hard to deny that something’s changing for those people. It’s amazing. But I do think it’s such an imperfect experiment on some levels. People will tell me to try one thing at a time, and it just doesn’t work that way. Because the seasons change and I move and I’m dating someone this month, and I’m not that month, so is it the drugs? Is it the kale over my shoulder? Is it the fact that I feel loved this month? It’s just too imperfect to know. And if I tried one thing at a time…
Brianne: It would take forever.
Liz: It would be forever, I just can’t. I want to live my life, I want to be able to be employed. I want to be able to do things. And I feel the best I’ve felt in the last 15 years this year, this is my best year of health. But part of that is because I’m not working, so my stress is very low. I sleep nine to ten hours a night every night, I eat very clean, I also am on low-dose naltrexone, LDN. I don’t know if you’ve heard of LDN, but it’s been super helpful with lowering my inflammation, and inflammation is painful. And so having LDN in my system has been super super helpful for that, too. But I’m very reticent to tell anyone what to do because I don’t know what’s going to work for you, no idea. I can tell you what my symptoms were, what I’ve tried, what worked for me, but we don’t understand enough for me to be sure about anything. And if celery juice every morning works for you, then great.
Brianne: Do it. And what else? So what have you stuck with? I know last year you were AIP, which is just another protocol, another version of almost the same thing, but they’re all a little different.
Liz: Yeah, so autoimmune paleo protocol, which is a strict anti-inflammatory diet, was very helpful in jumpstarting my healing and I think healing some of my gut, because I do think some of this is gut related. And I took a ton of antibiotics before we knew I should also be taking acidophilus and good things for my gut. I think part of the thing that’s frustrating right now is that my world has become so small. I’m healthier, but not as happy. My chronic fatigue doctor finally sat me down and said, “I will not take you on as a patient if you keep working out. You have got to stop working out.” So I’ve been on a three-year moratorium of working out and it’s been incredibly difficult. I feel like I’m in this tiny, rigid box and the bars are just so strong and I have to eat right and I have to sleep right and I can’t drink and I can’t drink coffee and I can’t work out and I have to save and conserve my energy if I want to do anything and it blows, it sucks. I want the science to catch up so I can not have to have this logistical overhead and not have this cage. I am fucking over it. I am over it. It’s asking too much of me to not live in order to not be in pain.
Brianne: And especially you don’t, you can’t really know. You already basically said this, but because you can’t know which ones are making a difference and so you shrink, shrink, shrink, shrink, shrink, and then you’re like, “Okay, but do I actually need to be doing all of these things?” What if one of them was okay to come back in and then you try it once and it doesn’t work, but you can’t be sure if it was because that thing didn’t work or because of whatever else.
Liz: Totally. And I think the mental health of it does matter. I do want to be happy, there’s often times where I’m trading my physical health for my mental health. And I have to, I just don’t know how to live otherwise. That’s when people kill themselves. You have to find things that fill you. And that’s one of the reasons I’ve gotten into writing and I’m doing the stories project. I’m trying to reinvent myself for the 19th time. I’ve lost all of these identities: identity as a swimmer, identity as a skier, identity as an outdoor instructor, identity is a teacher. There’s all these things that illness has taken away from me and I have just had to shed these skins and be like, I can no longer do that. And there’s a grief in that. And then all of a sudden I’m in this tiny world where I’m no longer really working or contributing in the way I want to be. I can’t go out late. It just gets really, it just gets sad.
Brianne: It’s so rigid.
Liz: There’s the element of I’m single, I would love to be a mother. That’s a whole other conversation. I ended up having to freeze my eggs because my egg count was dropping so rapidly because of being sick for so long. They said, “I bet this window will close for you in two years, so you really need to freeze your eggs now if you ever want kids because we don’t think your body will continue making eggs.” My count was so low. So there’s just all these elements of grief in it. And the thing is, I have been trying now that I feel a little bit better, I feel I can just start maybe pushing on things to see if I have to be doing them. But before, if the option of taking something out drives me back down to a three where I can’t feed myself again, I’m not willing to do that. So I’ve become very rigid in a way that’s not my personality. I’m an extrovert and I’m flexible and right out of college I lived 28 different places and moved to Argentina on a whim, and I moved to Alaska on a whim. And now I have to be very careful even if I go into San Francisco from Oakland, which is 45 minutes away, because I’m worried I’m too far away from my bed and my meds and my systems. And I don’t like to travel that much cousin away from my detox bath and my glutathione.
Brianne: And there’s so many things you need to bring. Like I don’t know if food will be reliable. I’ve had two minor meltdowns this week because of small scheduling changes that just threatened the mental plans that I had because everything has to be figured out already. And all of a sudden, when I thought I was having lunch, I can’t have lunch, and I don’t know if food will be available that I can eat, and it kind of cascades.
Liz: Yeah, like maybe the anxiety diagnosis back in the day wasn’t right, but I certainly do now. But it’s situational anxiety, because the consequence of not living in my cage is huge, it’s painful, it’s awful. It can be months. If I miss something, if I mess up, I can trigger myself into a flare and I could be flared for months. So of course I’m going to be anal about what I’m eating or how much sleep I’m getting. And of course I’m going to seem anxious and uptight about it, because if you were going to be sick for two months because you messed up that one thing you would be too. Anyway, rant aside.
Brianne: No, it’s real.
Liz: But now that I’ve been feeling a little bit better, I’ve been trying to loosen a little bit, like can I push that cage out two inches, even just one little bar? And so I’ve been able to reintroduce a couple things into my diet. Essentially, I now feel like I need to eat mostly paleo, but if I have a couple bites of dairy a week, two bites of cheese a week, my body can handle it. I can actually have a couple bites of gluten these days and be okay. If I eat a whole piece of pizza, I’ll feel that. I can drink a little bit, I don’t do well with wine. There’s certain things I can drink and there’s certain things I can’t, even that’s a little dicey and my body doesn’t, I just don’t feel very good.
I have been on this fairly consistent protocol for the last year, which is antivirals, two different types of antivirals. And that’s trying to get at the babesia and epstein-barr, which continues to be positive. And I’m on plaquenil and low-dose naltrexone, which are for anti-inflammatories. And then I’m on supplements, omega three fatty acids and CoQ10 and curcumin and kind of all the things you would imagine that are both immune boosting and and that are supposed to be anti-inflammatory.
Brianne: I’m taking garlic pills right now. Just that’s a thing that I’m doing. And it’s a really weird ride because you get an aftertaste. I don’t know, five hours after. It’s so weird. And it’s not quite garlic, it’s like salami taste. This is gross. You’re welcome everybody. But it’s just this weird, what is happening? It will be so much later from when I took it. But it’s a thing that I’m trying.
Liz: Yeah, I’m big into detox baths. I do a lot of baths in epsom salt. I’m not a great detoxer, so I don’t have the MTHFR mutation. But I did do a 23andMe and took that genetic test and brought it to a bunch of other people to interpret and tell me. So I don’t methylate my Bs. So I take vitamin b shots, those are very helpful for my energy levels. And I’m not a great detoxer genetically so I do a bunch of things to help detox. I do something called pacing, which is a little controversial in the chronic fatigue world. But just exerting at all creates inflammation, and inflammation is the number one thing we’re trying to fight, so no adrenaline and no working out. And so I’ve been really trying to stick to that. Very difficult for me personally, but that also does seem to be helping, which is such a bummer.
Liz: Yeah, I don’t know, I have all sorts of other weird… I go to therapy every week because I have PTSD from this whole situation, it’s been incredibly stressful.
Brianne: And so much grief, like you say.
Liz: So much grief. And even just learning how to educate my friends a little bit better and all of that has been helpful in therapy. Or how do you date when you are in an unpredictable chronic illness situation? It’s very difficult. And there’s some literature that says, lyme can passed on in utero or maybe even sexually, and so there’s all these other weird navigating things you have to be like, “Hey, this might not be real science, but maybe you should know…”
Brianne: That’s in the lyme documentary they have on prime, which I forget what it’s called right now, but have you watched it?
Liz: Under Our Skin?
Brianne: Yeah, in Under Our Skin, those are both in there and you’re like, “Oh, God.”
Liz: Yeah, that movie was a little inflammatory but interesting. Have you seen Unrest?
Brianne: I actually haven’t.
Liz: Oh man, you gotta watch, Jen Brea is amazing.
Brianne: I know, it’s funny. So where we live now, we live in this small town and in the town hall they show movies, I don’t know, every couple weeks. I don’t know how they’re chosen. It’s extremely random. Right now it’s food movies, it’s going to be Chocolat next weekend. But anyway, the weekend after we moved here they were showing Unrest, and so I didn’t watch it for a long time because I was like, “It’s perfect! I’m going to watch it in our new home.” And then we ended up having something come up and I didn’t watch it. And so now it’s on netflix, there’s nothing stopping me.
Liz: You should totally watch it, it’s great.
Brianne: Yeah. Except that the summer was really busy and I kept feeling like I’m not in the headspace for what I know will be a really hard ride, but I want to. I know it’s a required viewing at this point for me.
Liz: Totally. And meditation, learning how to be present and calm myself down out of fight or flight has been really helpful. I actually spent, I was listening to the episode with Natasha, I also spent two months in Bali doing weird healing things, healing modalities. I’m going to go to Oaxaca and the beach in Mexico to continue to relax. I’m thinking about moving out of the city. I have a lot of overstimulation issues which come from, the brain issues are really hard for me because being smart is one of my identities too, that I take very seriously, it has been a big piece of who I am, so that one’s been really hard. When I was on IV artesunate, which is a really hard hitting anti-malarial, which was for treating babesia, I got really really sick again. I was back down at a four maybe. I couldn’t drive, and I couldn’t drive because I couldn’t follow the directions that maps was giving me, which is wild. And I couldn’t listen to the radio because it just sounded like gibberish. I couldn’t understand podcasts anymore, which is wild. It’s such a weird thing to have happen. But when I’m like that, the stimulation, the bright light, moving cars, it’s too hard for me, I can’t. Actually I feel slightly autistic, and I mean that in a very literal way, it’s too much information, and I can’t process it.
So I’ve thought about moving out of the Bay Area to some place that’s calmer. And of course, the hard part here is we live in a capitalistic society that rewards and really values people who are producing. And as someone who is sick, when I feel well I can execute like a motherfucker, I’m a producer. But when I don’t, I don’t. And so it’s really hard, both finding value for myself, finding value as a part of society, in a partnership. I know I won’t be able to be the exact partner that I want to be. And what does one do when one can’t consistently produce? There’s no space for us. There is just not a lot of space in the working world and there hasn’t really been any movement around it either. What are the accommodations? What would work really look like? What would work look for me in a way that was both not detrimental to my health but could be productive for society? And I’ve been thinking about that. And for a while I really didn’t think I had much value, like “I don’t know, I’m not worth it for anyone to employ, I’m not worth it for anyone to date.” And that’s fucking tough. Tough to work through that stuff. But I do think being a sick woman, or sick person, in a capitalistic society is so hard. It’s hard to find a place where you fit.
Brianne: I super relate to all of those questions and don’t have any answers, clearly. I don’t even know, because I also thought about accommodations for Natasha’s project and I don’t even know what questions to ask. And that’s a huge part of it, what does it look like for work not to be detrimental to my health? So for me never to be in a position where I have to choose to push through it.
Liz: I can’t imagine, I don’t know. I don’t know what that would look like because it’s so unpredictable for me.
Brianne: Yeah, yeah, and I have no idea and that feels like a really important question. And I have also been super, super lucky, super fortunate, super privileged to have this space because I also haven’t worked, I haven’t been working in a year. So I have done things that generated income, but nothing consistent.
Liz: Totally, me too.
Brianne: And it’s partly figuring out how to leverage some of that. So, I have started selling cross stitch patterns, which is small but fun for me. Because I also wrote the program that does it, so there’s more to it than I think maybe what it sounds like But that has been really fun because I’m coding and then I’m designing, which… I have a design degree, so my professional degree is that I could be an architect, but I’m not. And that has a killer culture also of people, especially when they’re interning, you’re just expected to work 80-hour weeks, and that was never going to be an option for me. But anyway, so I can do all of these things, and then I can release them on my own schedule, and then people can buy them on their own schedule and there’s something to that that is really appealing. And also cross stitch patterns are three dollars, so to scale that to a full-time income may be possible but it certainly would be difficult. But there’s something in the model where you literally just opt into it whenever you want to, and then as soon as you’re done on your timeline, it’s in the world and then people can choose to assign value to it. There’s something in there, and I don’t know what it is yet.
Liz: Yeah, yeah, I know. I kind of want to get us all in the same room and white board, you know, design thinking it. Because I have really run up against it. And everybody says, “Oh, you just need this thing is due within a couple weeks.” But I just had a two-and-a-half-month flare, I could not have given you a good product in that two months. There’s no way. My brain wasn’t thinking. And I have speed pills that I can take when I need to that have been prescribed to me.
Brianne: It’s possible to force through it. But it’s not sustainable.
Liz: But it’s not sustainable. Exactly. Exactly.
Brianne: It’s a good question.
Liz: It’s tough.
Brianne: So can we talk about the Invisible Stories Project a little bit?
Liz: Sure. So I got into storytelling years ago. I started listening to The Moth back in college. So a long time ago, 15 years ago when The Moth first came out, and got really into it. I feel like my ability to empathize with people was really growing by listening to other people’s stories, whatever they were. And I found podcasting a particularly useful medium for that, like This American Life, doing these deep dives into other people’s lives has really helped me expand my own world. And when I moved to Seattle for law school, I got really into The Moth. Told a couple stories, they made the podcast, I won a grand slam. And I started getting paid to tell stories, that was really cool, and I just really found it both cathartic for me to tell stories and super helpful to listen to those stories from other people as well.
So when I moved down to San Francisco, I continued telling stories at The Moth, but also started telling stories at my work. So I put together a couple story slams for them around, I worked at a tech company and so, helping people tell stories of when they were kids. And people started asking me, someone started asking me to tell my story about being sick because I was on the diversity and inclusion committee. And as I started telling it, I realized it was really useful for me to practice how to tell this story, but also really useful for people to really empathize. Like taking a few more words to explain tired. Can I describe that in a paragraph in a way that people might be able to relate to in a better way? So kind of based off of The Moth model.
So this is five- to ten-minute stories that are not meant to be full histories, but just a tiny little snapshot, a little window into this bigger house where you could maybe then wonder what those other rooms look like. The idea is to tell stories that help people see and be seen, making the invisible visible. And so I’m trying to collect 30 stories, maybe keep going, kind of depends on what happens. Ten to 15 of them will be my own different stories of illness, different periods, a bunch of stories from college, little snippets, stories of friendship and love and sacrifice and pain and whatever. They’re all just being uploaded to soundcloud right now, so there will be transcripts. They’re all written out and then read into a microphone and recorded, and so there will be written versions and then this oral version. And then I’ve got people who are telling stories about sexual assault and grief and addiction, and all of these things where sometimes you just wish you could just have someone be able to know that you’re going through a divorce and things are really hard without you having to say, “I’m going through a divorce, don’t look at me with that much pity.” I don’t want to talk about it, but I just want you to know that I’m off and tired and sad, and I’m actually not angry at you, I’m just going through a divorce. And so the idea is that those those stories need a place to be told. And ultimately, I’d like to maybe turn it into a book or even try to make it so that if you told a five-minute story, then taking the next ten, fifteen minutes to ask a few questions like what’s the one thing you would want people to know, what’s the best way someone’s helped you.
Brianne: Building out resources.
Liz: Yeah, building out resources. So a slightly more theatrical writer-y version of what we’re doing here. But much smaller little bites.
Brianne: Yeah, yeah, I love that. I’m excited. I’m obsessed with storytelling, which, that’s how we met in the first place, so no surprise. But that’s great, I’m excited.
[guitar riff]
Thank you for listening to the fifth episode of No End In Sight! I’ve got a whole bunch of interviews recorded right now for future episodes, so make sure you subscribe in iTunes, Google Play, or wherever you get your podcasts.
Make sure you check out the Invisible Stories Project at SpoonieStories.com. From there you can listen to the latest stories and learn more about submitting your own story to the project.
If you want to commiserate with me on twitter or instagram about day-to-day life with chronic illness, you can always find me @bennessb. And if you want to share your story with me, just head to noendinsight.co and click Share Your Story. 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. It’s pretty small right now, but I’d love it to become a place where we dig into to all the questions about work and productivity and prioritizing your health that Liz and I discussed near the end of the interview.
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 just released my fall pattern collection, and I’d love it if you checked us out at digitalartisanal.com.