Rachel Horton talks ME/CFS, fibromyalgia, and learning to talk about chronic illness with the people in your life.
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Resources
Books that have helped Rachel that aren’t related to chronic illness:
- Man’s search for meaning by Viktor Frankl
- Unbroken by Laura Hillenbrand
- The Road to Character by David Brooks
- The obstacle is the way by Ryan Holiday
- Something Fresh by PG Wodehouse
Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Quick reminder that I recently started a patreon campaign, so if you’ve been enjoying this show and you have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight.
Today I’m talking to Rachel Horton about CFS/ME, fibromyalgia, and learning how to talk about your chronic illness with the people in your life.
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 I like to start by asking, how was your health as a kid?
Rachel: So I was thinking about this, cause I listened to a couple of the interviews that you’ve done previously, and health-wise, as a kid, I wouldn’t have said… if you had asked me… so I got sick basically when I was 17. If you asked me at the early part of the year, “Are you healthy?” I would have just been like, “Yeah, of course. I play sports year round. I go backpacking in the summer. I do all these things with school. I’m very busy all the time. Of course I’m healthy.” So there wasn’t anything in my childhood that derailed my life significantly. I had allergies. I had ear infections. I had sinus infections. I had all kinds of stuff, but nothing that ever kept me out of school for months at a time. I was never hospitalized other than getting ear tubes put in and having ear tubes taken out. Now when I look back at the whole of the scenario as we do now, in my very analytical way, yeah, I can see some trends for sure. When I was an infant… so I had six months of chronic ear infections as a baby, so from six months to a year, and then they finally put ear tubes in. But during that six months, I was on antibiotics straight. So knowing what we know now about the microbiome, obviously that’s a huge part of your health history, but at the time, I never thought of it as anything hugely significant or that it would have an impact on me later in life.
Brianne: Yeah. And I feel like, I don’t… now I don’t have a good sense of when they started talking about the microbiome and antibiotics, but it’s definitely with…
Rachel: It was not 1991.
Brianne: Yeah. Definitely within the last 10 years, maybe five years that it’s hit, I’ll say popular culture… that, it became a thing that anybody would know might matter.
Rachel: Right, totally. And it was weird because looking back, I’m like, “Why would you put me on antibiotics for six months straight? Why not just put ear tubes in?” It was so weird, but it takes time for doctors and everybody who’s sort of in that stream of medical decision-making to get together and get on the same page about something. So it took time for my parents to find the ENT and who was like, “No, no, no. Here’s actually a better option than putting your infant child on antibiotics for six months straight while she screams in pain cause of her ear infections.”
Brianne: Yeah. Yeah. And I also… if the general sentiment at the time, which I obviously don’t remember either, but, was that antibiotics were neutral at worst, then there’s no reason not to, right? And now I think even the most conservative doctors are like, “Okay, we need to pay attention to when and how many antibiotics we’re prescribing and why.”
Rachel: Right and I think that’s also something important. I try to make sure that… I don’t want everyone, my parents or anyone else who was involved in those health decisions, to feel bad about something like that because yeah, with hindsight, it’s easy to think, “Oh, sure. Something like that may have had a huge impact on my health.” We didn’t know that at the time. I don’t blame anybody. I don’t… I was not mistreated or anything.
Brianne: Yeah.
Rachel: But it’s so easy for us, I think to look back on stuff in our health history and be like, “Oh shit. If only I had known that, my life would have turned out completely different. I just had to avoid that course of antibiotics or whatever it was.”
Brianne: Yeah.
Rachel: I got a tick bite when I was a kid.
Brianne: Yeah.
Rachel: I didn’t have any immediate symptoms. I was on doxycycline for two weeks or whatever the standard of care was. Actually a fun fact, one of my mom’s ex boyfriends, her high school boyfriend is a Lyme disease researcher, so she just sent him information and he told her what to do and how to take the antibiotics and stuff like that. And now I may have approached that episode differently, but I was like five years old and had just returned from Cape Cod with my family and nobody is going to raise an eyebrow at that. No one was talking about Lyme disease at that point in time,
Brianne: Yeah, and certainly not chronic Lyme or whatever the CDC term for is for right now, post treatment Lyme disease syndrome or whatever it is.
Rachel: May not exist and everybody’s up in arms about… yeah, so many controversies about everything all the time.
Brianne: Yes.
Rachel: So yeah. At the time, had a tick bite after being on vacation with my family on Cape Cod, came back home to Indiana. And I woke up from bed and came into my mom and dad’s room, and I was like, “I think I have a tick bite.” Which my mom, who’s very religious, took this as a sign from God because what five-year-old is feeling around her hairline for a tick bite? Yeah, like, “I think this is a tick.” And somehow this happened and I walk in and yeah, sure enough there’s a tick bite in the back of my head, but I didn’t have a bullseye rash. I didn’t have any other symptoms, so I just did the normal antibiotic course and everything seemed to be fine. And so throughout the rest of my childhood, I played sports. I had allergy issues. Usually in the spring I would get cough, sinus infections, other typical stuff, but I never got mono as a kid. I never had any of the other issues that sometimes signal something larger to come.
Brianne: Right, right. The things that people… and it depends on kind of what ends up happening, but yeah, mono is a big one, or unending growing pains, I think comes up a lot for people who are later diagnosed with EDS. But yeah.
Rachel: Interesting. Oh, I didn’t know about that.
Brianne: Oh, I just found this out on Twitter on one of my Twitter question threads.
Rachel: Isn’t Twitter great?
Brianne: Yeah. I had asked people… I think it was in the one I asked about how long it took people to get a diagnosis. And so many people with EDS came in being like, “Oh yeah, they told me it was just growing pains for like 15 years.” And that was so…
Rachel: For 15 years?
Brianne: Yeah, for just absurd amounts of time. And that one’s hard… I did have growing pains. I do not have EDS. They were definitely just growing pains, so I can understand how, at this specific time with this specific presentation, this is the most obvious explanation, but also sometimes that isn’t the right one. Ugh. Medicine.
Rachel: Yeah. A lot of the time we’re doing the best with the information given, and I try… it’s the whole don’t attribute to malice what can be explained by ignorance, stupidity, busy-ness, whatever. Not immediately assuming the worst of other people can usually go a long way, but it’s so funny looking back at some of these misdiagnoses and just random doctor’s appointments. Like the story in your podcast in the first episode, when you’re talking with your friend about the issue with your eye and the rash.
Brianne: Yeah.
Rachel: I burst out laughing on a walk, listening to this girl like, “Oh, well, it’s near your eye. Maybe you should go to an optometrist.”
Brianne: Yeah, “Just put some baby shampoo on it.” It’s just so…
Rachel: Yeah. But it has to be name brand.
Brianne: Yeah.
Rachel: It can’t be an off brand baby shampoo.
Brianne: Yeah.
Rachel: Off brand will like, kill you.
Brianne: Yeah. And I’m definitely sure that those people, everyone involved in that chain of events was doing the best that they could. But also, it was not… that was probably a gluten rash in retrospect.
Rachel: For sure. Yeah, the whole epistemological humility, not making rash decisions based on incomplete data, basically everything that’s gone on with the PACE trial.
Brianne: Yeah.
Rachel: It can all be summed up with like, “Okay, let’s not take these huge grand sweeping conclusions about information that we just don’t have.”
Brianne: Yeah. Yeah. 20 steps back, please. Okay, so you said 17 is when things started to change. So what happened at that point?
Rachel: So this was 2008. That was my junior year of high school, into my senior year of high school. So starting early that spring in 2008… This is also… I went to a really competitive, small high school. This was like, “College is everything, and if you don’t get into Princeton, you’re screwed for life and will never get a job or find happiness ever.” So this is my mindset through all the things. I’ve got to get my test scores up. I have to make sure I have perfect grades. Everything has to be great. All the extracurriculars, all the clubs, everything. So around this time I started getting chronic sinus infections, and I’m not entirely sure why I’d never had them, but I just had horrible sinus pain. I had fatigue. I had to go on antibiotics to deal with the sinus infections, and then inevitably they would return. And so I was just doing this cycle, and I was missing a lot of school. And I remember this because God forbid I got a B on an AP chemistry exam, dropped my grade to an A-, which forever screwed me for life.
Brianne: Is the worst part of this whole time period, right?
Rachel: Terrible. Yeah. The fatigue was fine. It was that A- that really fucked me over.
Brianne: Yeah.
Rachel: But anyway, so I was under all this stress for academic reasons. I was also playing tennis at the time, and it was just this whirlwind of events with these sinus infections, and I couldn’t, for whatever reason, break the cycle of sinus infections, antibiotics over and over again. One day after a tennis match, my friend’s dad’s an ENT and he like looked at my tonsils, just with his flashlight that was on his key chain or something. He was like, “Oh, your tonsils are completely infected. This is the problem. We need to get these out.” And I was like, “I can’t do that. I have an exam tomorrow.” Yeah,
Brianne: “I’m too busy for medical care.”
Rachel: Right, exactly. Which is so funny because there’s so many times in life… for the past 10 years where my priorities haven’t exactly been, I would say in the right order, but you learn eventually. So anyway, sinus infections continue. I missed a lot of school but sort of got my shit together by the end of the year, and it was more or less fine. I had fatigue. I had a hard time getting through my summer training for cross country practices, but I could still run and stuff. I just wasn’t super active, and then in July I went to camp in Colorado, which I had done for the past couple summers, and that summer I had the opportunity to tack on an extra week long backpacking trip. And I had gone backpacking the previous summer, but it was a shorter trip and I was like, “Oh my gosh, it sounds like an amazing trip.” Great opportunity. I had some friends doing the trip. One of my favorite trip leaders was leading the group, and so I signed up for that, and the trip was going fine. I got another sinus infection while I was in Colorado shocker. And I had brought a course of antibiotics with me. Omnicef, I think. I got very familiar with antibiotics at this point. There were the ones that I liked and the ones that I hate it.
Brianne: You’re like, “I know exactly what I can tolerate, so let’s stick with it.”
Rachel: Yeah, “I’m not gonna… don’t give me that shit that ruins my appetite and makes me want to throw up everything. Stick with the blue pills.” So I had my antibiotics, I had laryngitis on the trip, which was really weird. So I couldn’t talk most of the time, but I was in really good physical condition. So I had a really heavy pack, and I was able to backpack through Colorado. And then the day we were supposed to summit, all of a sudden I was just overcome with fatigue, could not move, could not pack up my tent, get my stuff together. And it was weird because obviously we’re at altitude, so that was the most normal explanation for what was going on. I probably just had altitude sickness, so I stayed back with the group… with one of the trip leaders while the rest of the kids went off to do the summit, and we’re at 13,000 something feet. It wasn’t a 14,000 foot mountain, but we were in that range. And I was trying to drink water, and I was trying to sit there, but I felt like I had lead weights all over my body, and I just couldn’t move. Somehow I managed to complete the trip cause we still had maybe a day or two of backpacking to get back to the base camp. I still don’t know what would’ve happened if I had just been like, “Sorry guys, I’m out like, I can’t do this.”
Brianne: Yeah.
Rachel: Somehow I made it back.
Brianne: And that’s a super tough thing. I just want to interject super briefly and irrelevantly. So I was also a summer camp kid and I did a lot of long kind of backwood canoe trips, and that’s one of the scary things. On one of the trips that I did, we were, I don’t know, the third group from that camp to do that route, and both of the trips before us had had someone airlifted out cause that’s the only way to go. Yeah. You have an Evac button and you’re… God, I don’t even know. I was in Northern Ontario, so you’re days away by car, even if there were roads, which there are not. And it’s just like, “Okay, you have to really think about if this is the kind of thing that requires an air evac, because if you don’t think you need an air evac, then you just have to like fucking figure it out.”
Rachel: Yeah. You have to suck it up. And I think it’s really hard when you’re in that position to decide. You don’t really know the seriousness of the situation. I didn’t have any… I wasn’t bleeding. I didn’t have any visible symptoms other than severe fatigue and possible dehydration headaches. Everything else was typical for altitude sickness, but I’d also been at altitude. I mean, I had been in Colorado for the past two and a half weeks, and I had been gradually at altitude for the past couple days.
Brianne: So it didn’t quite make sense.
Rachel: Yeah, I hadn’t had any symptoms from that, but at the same time, that internal debate about whether or not… “Is this situation serious enough to actually raise the attention of the people around me? How do I ask for help in this kind of thing?” Cause I was in this… unrelated to this timeline, last weekend I was in a situation where I was sailing, and I had to say like, “I can’t do anymore because I physically can’t complete this. And if I continue sailing in conditions like these, I will fuck up and do something that might seriously injure the rest of the people on this boat, and I don’t want to be in that position.” And getting to a point where you feel comfortable saying that to people and not thinking like, “Oh no, I’m going to be seen as weak or incompetent.”
Brianne: Yeah or dramatic.
Rachel: Dramatic. Exactly. Hysterical as women can be, right? But that was really hard for me to come to terms with, the fact that I had to miss out on the summit, which at the time seemed like a really big deal. I was in good shape. How could I not have the energy to do something as simple as hiking a couple more feet? I don’t know.
Brianne: And the whole point of doing it.
Rachel: Exactly.
Brianne: Yeah.
Rachel: So I stayed back, and then eventually a couple of days later finished the trip and got back to Indiana. And then for each week after, that I seemed to have more fatigue, but there’s always some weird explanation for it. So the first week I got back, I’m tired. I’m like, “Oh, I’m tired cause I was in Colorado and I was backpacking. I’m just recovering from this trip.”
Brianne: Sure.
Rachel: And then I had the sinus infections or I had my wisdom teeth out at some point. And so I was like, “Oh, I’m just tired cause my wisdom teeth are out.” And so I kept having some sort of simple explanation like, “Oh, once I just pass this hurdle, everything’s going to resolve itself and it’ll be fine.” And so it wasn’t until… God, I think it was around Labor Day. So, in the intervening months between the end of July and Labor Day, I was running cross country, going to school, fatigue was increasing. And the first thing I noticed is that I couldn’t recover from my workouts, so I could still get through my runs. I could run four miles, but then I’d be on the couch for a couple of hours afterwards, which is pretty unusual for me, or we had this thing where seniors, if you scheduled your classes in a certain way and you didn’t have a class first period, you could come in at second period, and you could just sleep in a little bit more. And I was like, “Oh, I’ll just do that.” And I had trouble making my first class of the day, so I switched my schedule around and I was like, “Oh, well then I’ll just… I won’t take…” God, what was the class? It was like globalization seminar or something like, “Okay, I won’t read Tom Friedman right now, and I will sleep instead, fine.” But it just seemed to keep compounding, keep intensifying, and the fatigue wouldn’t go away. It was just relentless, and in addition to the fatigue, I started noticing brain fog issues. And so Labor Day weekend was basically the tipping point for me. I had a cross country practice that Saturday, I could barely get through my workouts, and I started developing this thing that’s called vocal cord dysfunction, which is basically… you have so much stress and anxiety when you’re running that you have trouble breathing in. So whereas asthma, it’s more of an issue… you have the wheezing can’t really…
Brianne: It’s pulmonary.
Rachel: Yeah. Vocal cord dysfunction stops the minute that you stopped running.
Brianne: Okay.
Rachel: So whereas an asthma attack could persist for hours after the fact, if it’s not addressed with an inhaler, which is what I assumed it was. I was like, “Oh, I would guess I have asthma now. Great. Cool.”
Brianne: Yeah, ” Now I have that.”
Rachel: This would just stop when I stopped running. So I’d have to stop in the middle of a workout, calm down, and then start running again. And basically I was stressed out because I was so tired all the time that I wasn’t making my times, and I wasn’t running to the full extent of my athletic prowess. So I felt like I wasn’t good enough, basically. So I got home after this cross country workout on a Saturday, which I just utterly sucked at and then spent the entire day on the couch, and my parents were out of town visiting my sister at college that day and they came back and I think I had some house stuff that I was supposed to do. I was probably supposed to help mow the lawn or do stuff around the house. So they got back and my parents realized I had done none of it, and I had lied on the couch the entire day and they were just sort of like, “What’s wrong with you?”
Brianne: Like, “Hello teenager.”
Rachel: I don’t think it was thay way, just, “This doesn’t seem like you.”
Brianne: Yeah. Yeah. “This isn’t what we would expect, not just in a discipline way, but you are an active person who likes to be active, and so this seems like it would be boring and maybe even shitty to do.”
Rachel: Yeah. Which is very unlike me. And so later that week was when I started missing school because the fatigue was so intense, and pretty much from that point on, I don’t think I ever made it to school for a full week at a time. I always missed at least one day of school, and in the next week or so, that’s when the doctor’s appointments started piling on. So initially it was going to my usual doctors. I was still 17, so I still had my pediatrician and he’s like, “Maybe you should do a sleep study.”
Brianne: Sure.
Rachel: I was like, “Okay, cool.” I tried some other stuff. I got in to see this allergist cause I had seen some other allergists who weren’t as helpful, and then I finally got to see this one who had also been the allergist for my older siblings and was a family friend. I must say, I got very lucky in these early months. It was absolute torture having to go to all these doctor’s appointments and not really having any answers. But for the most part, everyone was really respectful of me. I didn’t have a lot of like, “Oh, you know, you should probably just try harder.”
Brianne: Yeah, like, “Here’s the therapist referral. We will not be doing any tests.”
Rachel: Yeah, exactly.
Brianne: Yeah.
Rachel: So. Luckily. I ended up switching to an internist who is also one of my best friend’s moms. I found an endocrinologist who’s daughter was one of my best friends. So we had a lot of family friends that I could sort of lean on for support. I think because they knew me and my educational background, they were like, “Okay, this is a real situation. She’s not just being lazy or acting out or…”
Brianne: Yeah. They knew enough about your previous self to recognize that it wasn’t just… even whatever I’m about to say is also evidence of stigma.
Rachel: Absolutrely. Well, that’s the other thing where everything is so stigmatized that it was… it’s hard to get any real answers because things are seen as a cop out diagnosis, basically, even if it’s a very real serious condition. So I was lucky that I had supportive people who were basically running every test imaginable and trying to eliminate all of the seriously scary deadly stuff.
Brianne: Yeah.
Rachel: And then when they couldn’t provide more answers and were running out, I started getting referrals to the major children’s hospital in Indiana, and they all wrote letters attesting to what they… the tests that they had run, what they had observed in me as a student and as a child. And basically giving more background and informing the internist that I would eventually see and who would ultimately diagnose me with chronic fatigue syndrome and fibromyalgia. So that all spanned from September to mid-December of 2008 and so in those months/// that was my senior year of high school. I basically never attended school. I had to… Doctor’s
Brianne: appointments and resting?.
Rachel: Yeah. For the most part, I was coming into school with tape around my arms cause I was always coming from the hospital lab. I just was getting blood draws like once or twice a week. There’s always something to test for… Or I was leaving school cause I had to go to a doctor’s appointment, or I was sick. And I would get kind of weird texts like, “Hey, are you coming to school today?” And I’m like, “Uh, no, I’m exhausted.” And because it’s a small school, you can’t really fly under the radar.
Brianne: Right. It’s apparent that you are having a Health Crisis, whatever that might mean.
Rachel: Yeah, exactly. Yeah, so that was really difficult for me to handle as a highschooler cause I wasn’t used to getting attention for something that wasn’t some sort of achievement. This is the kind of high school… you praise people for like, “Oh, you wrote this great essay.” Or this kid did an art fellowship or something. And I didn’t want people paying attention to me cause I was never at school, and I was sick all the time. That just seemed really embarrassing to me.
Brianne: Yeah.
Rachel: So dealing with missing class all the time… I was behind in all my assignments. My teachers didn’t know what was going wrong with me. There are all these rumors swirling around about what the real thing that’s going on with me, which is always super fun to deal with.
Brianne: Yeah, I’m sure. And it would feel like a very special episode of a TV show cause no one’s ever heard… even like, what was your awareness around this kind of stuff? Had you heard of, say fibromyalgia and chronic fatigue at that point?
Rachel: No. I didn’t know what any of this stuff was, I was like… yeah, once you get diagnosed, first of all, I thought, “Okay, if I’ve been through six months of what I felt like was complete hell, then I better have a more damning diagnosis than chronic fatigue syndrome and fibromyalgia because that doesn’t inspire fear in the people around me.” I wanted to be able to say something, and people would just sort of step back like, “Oh, okay, I get it now.”
Brianne: Yeah, “I totally understand.”
Rachel: But when you tell people you have chronic fatigue syndrome, they’re like, “Oh yeah, Oh, I think I might have that too.” Or like, “Oh, so you’re basically hung over all the time.” I was like, “No, none of the above.”
Brianne: Yeah, God, yeah. They’re like, “Yeah, I’m tired.” And you’re like, “No. Yeah. All teenagers are tired. That’s true and not what we’re talking about here.”
Rachel: Totally. And so that was what I had to deal with in school because I was basically like. “Okay. So this is a relatively common thing. Teenagers go through all sorts of changes.” There are all sorts of difficult situations that could explain what I was experiencing at this time, and I was constantly trying to explain to my teachers like, “No, no, no. I’m not slacking off. I deeply care about all that stuff. I want to be a good student. I want to be in school. I want to get all my assignments done. I just physically can’t. Like, I’m so exhausted right now that this is not feasible for me to do.” So I was just behind in everything, and honestly, for the next couple of years, I would periodically have stress-induced nightmares where I’d wake up in the middle of the night thinking like, “Oh my God, it’s my senior year again, I’m behind in all my classes. I somehow have to take my finals even though I haven’t been in school for the past six months. I don’t know how I’m going to do any of this stuff.” That would happen periodically. So eventually, December, 2008, I went down to Riley Children’s Hospital in Indianapolis and met with this amazing internist who’s this just wonderful, straightforward Polish woman who had the best of both worlds in my mind, because she had… her training, she did her undergrad, and med school in Poland, so she was a little bit more familiar with alternative methods of treatment, and I think it took a more holistic approach to my case but came to the US for her residency and fellowship. Great woman, I loved working with her. So the first appointment was just all questions, symptoms. She didn’t actually give me a diagnosis at that appointment, interestingly enough, and then asked me to come back for a followup. So interestingly enough, for the followup, she asked that my family come with me.
Brianne: That is interesting.
Rachel: …which was complicated because the past couple months had been tense, to put it mildly, between various people in my family. I’ve been incredibly lucky that my parents have always been really, really supportive of me, but it was difficult to negotiate some of the competing personalities and backgrounds and everything in my family. So the next appointment I came down, and she unloads the diagnosis and stuff, and she’s addressing it to my family cause she wants them to understand what this is going to mean for our family. I didn’t really comprehend the severity of everything at the time, so I didn’t quite grasp the significance of why my entire family would need to be present at an appointment like that. But she wanted to make sure everybody, I think, was on the same page, that there was no misinformation.
Brianne: Yeah.
Rachel: And she also made a comment that sort of stuck with me, and it didn’t really… I didn’t really grasp at the time, but in hindsight, I was like, “Oh, that was actually kind of profound.” She said basically that she would rather be diagnosed with some sort of treatable cancer than this.
Brianne: Yeah.
Rachel: And then I was like, “Oh, okay. So this is serious.”
Brianne: Yeah, like, “What does that mean?” At the time.
Rachel: Right. But at the time I was like, “I don’t get this.” And also at the time, I always had this competing tension between feeling like my life was over and that I would never be able to do anything that I wanted to do again, and at the same time I was sort of like, “Chronic fatigue syndrome doesn’t sound that bad. I can probably get over this in like five months.”
Brianne: Yeah, like, “It’s not being presented to me as something that is necessarily life-ending or life-threatening, and that must mean that I can overcome it.”
Rachel: Right. If I’m not gonna die from this, then I probably can get over it easily, right?
Brianne: Yeah. I hear that.
Rachel: That was more or less my reaction to it because she had told me something like, “Well, because you’re young when you’ve been diagnosed with this, you have a better chance at recovering or at least improving than a lot of people who would, who’ve been diagnosed with this at an older age.” Cause at the same time I knew… the only other person I had known of who had this diagnosis with was one of my mom’s friends, and she had had this for decades. And was more or less house bound or something, and I was like, “Well, I’m this young, athletic, high school student. My doctor told me that at best I could expect to gain 80% recovery within two years. Two years? I’ll do this in two months.”
Brianne: Yeah. “I’m an overachiever, and I always have been, and this will be no exception.”
Rachel: Exactly. I thought that this was going to be the sort of thing that I could just be really good at like, “Oh, I was a good student. I’m just going to be a really good patient.”
Brianne: Yeah.
Rachel: I’ll just do everything I’m supposed to do, and everything will be fine. I’m going to totally like, you know, get an A in this.
Brianne: In wellness. Yeah.
Rachel: Yeah, exactly.
Brianne: And that’s how… okay by 2008 I feel like there’s probably enough, sort of online stuff starting to happen in terms of what wellness blogging might look like or what dietary stuff might look like, and I know we’ll get to that, but there’s enough advice on the internet and stories on the internet of people who are like, “Oh, I found a plan and I stuck with it, and now I’m better.” And yeah, like you’re describing right now, if you’re a type-a person who likes instructions and excelling at following instructions, then that’s a really kind of seductive world to be like, “Okay, cool. I’ll just put 110% into…” whatever it is, whatever thing looks the most appealing, “…and then it will be better.” It feels that way.
Rachel: Oh, totally.
Brianne: Yep.
Rachel: It’s very alluring to get into that mindset of, “Well, if I just try really hard, if I have incredible willpower and discipline through all this, I can just… I can do anything, and I’ll get over this.” Cause that’s what we were told in society, right? You just have to have a good attitude and work hard. And in many cases, that is an effective strategy. It just was not always the case with my health situation. Part of the problem was, though that I did, I think… and I still don’t know why this happened, so after I got the diagnosis, she recommended… she’s like, “Honestly we don’t have a lot of research about this. There’s really no cure. You should try acupuncture. You should get massages for your fibromyalgia.” Cause at the time, muscle pain was a big deal for me, and so I was like, “I just got a prescription for massages from my doctor. This is amazing.”
Brianne: Great!
Rachel: Great! So I started, and that did help the massages were great. She advised me to basically drop all my classes and try to eliminate as much stress as possible from my life, which is really sound advice. At the time I was just like, “How am I supposed to do this?”
Brianne: Yeah. And like, “I can’t do that. That’s not on my trajectory.”
Rachel: “That doesn’t fit into my career plan. How dare you?” But at the same time I think I was also kind of relieved cause I was like, “I’m so behind in every stuff. I don’t know how I’m going to catch up or anything.” Which led to a super fun discussion a couple of weeks later with a bunch of my teachers and then the director of my high school when we… it was like a week before finals that semester, and they’re like, “So you’ve missed a ton of school, you haven’t done any of your assignments, and you’re not really prepared for anything, but we’re going to try and quote, salvage the rest of your semester by having you take your finals anyway, and just going in cold and just seeing how you do.” Which to me sounded horrifying.
Brianne: That sounds scary, but was good?
Rachel: Yeah, so it was actually a really good bargain, but I was so anxious at the time and so horrified and frankly exhausted that I didn’t have the mental capacity to really think about this in a more detached manner. I was just so exhausted all the time. I remember sitting in this meeting with my teachers and I just burst out crying partially because all of a sudden I was confronted with all this data about my attendance and my grades and my lack of doing anything that semester, all at once, by all my superiors, by all these people I respected, and needed recommendations from, and they were just telling me all this stuff and they’re not trying to make me feel bad. I just couldn’t handle it. And I burst into tears, ran out of the room crying, and I’m just like. “I don’t know what I’m doing with my life. This is absolutely miserable. I don’t know how I’m supposed to get through all this shit.” And I ended up not taking my finals because I was so stressed out and freaking out about them, not realizing that that was one of the reasons why I ended up not being able to graduate from high school, which was… in retrospect, I wish I had done things differently, but I found out later I couldn’t graduate, which was just another absolutely humiliating blow.And told that I’d need to repeat my senior year, which was like…
Brianne: You’re like, “How am I going to do that? I couldn’t… nothing has changed as to why it was so difficult the first time.” Yeah.
Rachel: Well, so that was the weird thing. So the next semester is my… so this is the spring of 2009, so this should have been my final semester of high school. I followed my doctor’s advice, blew off all my classes. I was taking random stuff. I would occasionally attend school when I felt like it, and I would do my assignments, whenever I felt like it and asked for extensions for everything. I rested a ton. I started taking some supplements. I wasn’t really super strict about my diet. I had been on a… I’d been put on a gluten free diet in the fall of 2008 during that weird attempted diagnostic process where I saw an integrative physician for the first time and the guy was like, “Oh, actually every problem in the world is caused by gluten, so you should do a gluten free diet.”
Brianne: Yeah, I’ve heard that. That’s… you know, fair.
Rachel: Yup. It’s real. So I was like, “Okay, I guess I’ll do that.” So I did that for a month or two and didn’t notice any difference. I now don’t eat gluten for a variety of reasons, but at the time, that was kind of his only suggestion for me.
Brianne: Yeah.
Rachel: So I had a hard time taking it seriously. But anyway, so fast forward to that spring. I cut out all this stress. I started taking melatonin, so I was finally able to sleep at night because all through that fall when I didn’t have a diagnosis, I had horrible insomnia. I think one of the cruelest things about this disease is that insomnia and severe fatigue coexist. It’s absolutely baffling.
Brianne: Yeah, and it’s, yeah, it’s so freaking painful when you’re exhausted all the time, can’t fall asleep. I’ve learned one fun fact about my body, so I wear a Fitbit, and not… when I first started wearing it, I was getting like 500 steps a day, but it tells me my heart rate, and so it will give me my sleep data, as it perceives. But I’ve learned that the way that I cope with insomnia is by lying still in bed listening to an audio book, and so it’s enough that it tricks my Fitbit. My Fitbit will tell me that I’ve had a full night’s sleep, and I’ll be like, “No, because I listened to and retained eight hours of audio book last night, so I can confidently tell you that I was not asleep during that time. But that’s cool. Thanks body… or thanks Fitbit.” Anyway, yeah.
Rachel: Which… it’s so funny you mentioned that cause I remember that fall was the first time I’d ever had serious insomnia. I had periodically had problems sleeping in the past. Especially if I was really excited about something.
Brianne: Sure.
Rachel: Like going to summer camp or going on vacation, I wouldn’t be able to sleep the night before, and then that’s one of the things you have to take off in the integrative medicine questionnaires now, and they’re like, “Oh, you have adrenal insufficiency.”
Brianne: Yeah, “Are you tired and wired?”
Rachel: Right, exactly. Yes. Literally tired and wired all the time, never stops. So the insomnia thing was funny because all of a sudden that fall, I couldn’t fall asleep at night. And there’s nothing to do at that point except just ruminate about everything that’s going wrong in your life. And to sort of acknowledge some of the mental health sides of things, I was a fairly intelligent high school student. I notice all the symtoms, and I go on WebMD. And I’m like, “Well, I fit all the symptoms for depression, so clearly I’m depressed because I can’t sleep and I’m tired all the time. And I have feelings of guilt at night because I’m not going to school or getting anything done ever.” And so I would see a psychologist, and I would go to the school counselor and I would try to talk about these things. And I’m like, “I don’t understand what’s going on with my life. I feel like I’m going crazy.” And I had other people sort of bringing up like, “You know, maybe this is a mental health situation” and stuff, and I’m like, “I’m doing my best to address that because if that is very much the case, then I want to make sure I’m covering all these bases. I want to make sure I’m treating everything possible.” I never had any suicidal thoughts. It was more just like, “You know, it’d be really nice if this weren’t happening to me right now.”
Brianne: Yeah. Yeah. And of course, I feel like that’s one of the things that is so… there’s a better word than this, but I’m going to say nefarious because I can’t think of the better word right now… is that especially with depression, when you fill out the mental health screening sheets at doctor’s appointments and stuff, it tracks… it’s identical. And you’re like, “Well, yeah, of course. I don’t feel very good about my outlook for the future right now because my body stopped working and I don’t know why.”
Rachel: “Yes, I am sleeping more than usual.”
Brianne: Yeah. If there was room for comment, I could tell you, and that isn’t to say that all of these things happening isn’t impacting my mental health because of course it is. It’s just so strange how often they don’t… I dunno, a lot of practitioners or even the paperwork that practitioners use to make decisions doesn’t allow for the fact that these things are related. It’s bizarre.
Rachel: Yeah. There is a lack of capacity, I guess, to dig a little bit deeper or to understand the comorbidity of a lot of these symptoms. A lot of stuff goes hand in hand, and just because you fit all the symptoms of one diagnosis doesn’t exclude others. It also doesn’t mean that… there’s so much dumb debate in the chronic illness about what is real and what is fake? And I hate wading through all that stuff cause I don’t want to devalue anybody else’s diagnosis. It was just strange for me cause I always seemed like… I think there’s more to this, and the key for me was at least the post exertional malaise because I would feel awesome. I would force myself to go on like a scavenger hunt or I remember a college visit that fall, and I was exhausted. But for whatever reason, everyone on our dorm floor decided to go play ultimate Frisbee at midnight. And I was like, “Yeah, of course I’m going to go do that. That sounds amazing.” And I played ultimate Frisbee, and it was great and I felt amazing and I was like, “Maybe I’m not sick. Maybe this is just some temporary blip on the radar, and it’s going to be gone in a week.” And then the next morning I woke up, and I was just like, “Oh shit, I cannot move.”
Brianne: Yeah.
Rachel: “I don’t know how I’m supposed to go visit classes today.” I’d like sign up for all these… of course in my free weekend I was like, “Yeah. I’m going to go visit a college and go to a differential equations class for fun. Great!” That would be a lot. Yeah. Super fun. But yeah, I had so many instances of that all through the fall. Before I got diagnosed where I would push myself to do something, and it would be amazing, and I would have so much fun. And in the moment I was totally okay, and then it was just the two or three day crash afterwards, which was just insufferable. I couldn’t get through the disproportional recovery time to the amount of time I actually exerted myself.
Brianne: Yeah, and that’s, yeah, a defining characteristic.
Rachel: Exactly. Classic CFS. And it’s also something that differentiates CFS from certain other mental conditions. Not to disparage any of these diagnoses, but it is something that kind of… that can set people apart at least. In the eyes of… I think a well trained physician you understand some of the distinctions between these things. But yeah, I had plenty of people who were saying strange things about me, or like, “You know, you really should see somebody about this.” And I’m like, “Yeah, no. I am.”
Brianne: Yeah, “Trust me. I’m on it.”
Rachel: Trying to take care of everything possible. So that spring I actually wound up recovering fairly well. I remember going to Florida with my family on spring break, and I was able… I slept a lot. I ate fairly well, but throughout the day I was able to be pretty active. I could go walk along the beach, and I could even do short bouts of playing tennis with my sister or other stuff that was similar to what I had previously done before I had gotten sick. And I started to think like, “Hey, this seems to be working. I’m exercising.” My muscle pain was pretty much gone, so for me at least, exercise seemed to be really helpful for my fibromyalgia, assuming I didn’t do too much, but doing a little bit of body weight activity or something seemed to help a lot with my muscle pain.
Brianne: Yeah, and that’s such a hard thing to… titrate, I’m going to say. Like, yes, exercise is good and movement is good, and there are so many problems that happen when you aren’t able to move your body at all, but when you’re constantly like, “Oh, cool, now where’s the line between good exercise and exercise that will prevent me from moving for a day or a week or longer sometimes?” There’s no formula, and it’s not the same. It’s not the same on different days or whatever. Ugh.
Rachel: No, I never knew what that line was and I think I still don’t because I think a lot of us… people… former athletes and stuff… once you get on the bike or whatever you’re doing, in the moment, it feels so great that it’s really easy to be like, Yeah, no, no, no. Let’s go 15 more minutes. I don’t want to turn down the opportunity to do that extra mile or something.”
Brianne: Ride that endorphin high.
Rachel: Yeah, exactly. No it’s totally real, and especially if you’re cooped up inside all the time, the opportunity to get outside and exercise… there are plenty of times in the past 10 plus years where I’ve just been like, “I know I’m going to crash after this, but I’m going to do it anyway because fuck it. I’m so sick of being inside alone all the time.”
Brianne: Yeah, that’s real. That’s the whole thing.
Rachel: Yeah, for sure. So I kept doing that that spring, and I would just sort of push myself a little bit more each time. And sometimes it would be disastrous, and other times it would be fine. And because I was not super diligent about my schoolwork, I didn’t have a lot of that stress. I had a lot of… I’d say emotional stuff to deal with just because the frustration of not being able to graduate from high school and not going to college with my friends. I was just so humiliated by all of that. I had so much shame about talking about the illness in general, that I had a really difficult time explaining what I was going through to people. Cause all of a sudden I had all these people asking me, “So how are you feeling? How are you doing? You look better. Are you feeling better?” And I was like, “Wh-, I know how to answer this.”
Brianne: Like, “This question isn’t even relevant to my experience, but I don’t know what question would be. I don’t know how to bring you in to everything that you would need to know to even have that conversation.”
Rachel: Right. And my goal was just to hide as much as possible. I honestly, I approached it for many years like I had some sort of felony on my record, and my goal was just to live life so no one would ever find out. And I would sort of skate by, and no one would find out that I had this illness. And there was just so much shame attached to the fact that I wasn’t, in my mind, doing anything. And I thought people were going to think less of me when they found out what my day was like… that I slept all the time, and that I didn’t have much of a social life and that I wasn’t really getting work done and achieving very much. It took forever for me to get to a point where I could honestly speak openly about what was going on without either crying or just running away in shame because everything… I didn’t like getting attention for this. This was not what I wanted my legacy to be. That’s kind of self-important.
Brianne: Yeah. But I mean it’s understandable and especially when you’re a teenager, when you’re like, “Nobody else is going through this, and everybody else is able to get over whatever their shit is to move forward. So why can’t I just get over my shit?”
Rachel: Right. Well then, what was it specifically about chronic fatigue syndrome and fibromyalgia that I found embarrassing? Because there I would not have treated somebody who had cancer or some similarly significant and serious diagnosis the same way, and yet for whatever reason, it was totally okay for me to beat up on myself for what I felt like was a trivial illness. There were so many times when I was like, “This isn’t serious. I should be able to get over this. I should go to bed earlier, honestly. I don’t know why I’m not well.”
Brianne: Yeah. Yeah. That’s stigma in action right there.
Rachel: For sure, yeah. And as a high school student who already had no idea how to talk about her feelings or really any coherent way to approach complex stuff like this that wasn’t school or athletics or something, I was just completely lost. I had a really great group of friends. They were all really supportive and understanding of me, but there were times they would come visit me or they’d try to get me to open up and I just was completely incapable of it. It was so painful for me to talk about what I’d gone through, and it was also still so hard for me to try and disentangle these multiple identities. It was hard for me to think… I didn’t want the illness to be the only thing about me that we talked about, but at the same time it was… it had become this huge part of my life that was inescapable. And it felt like every day I was confronted with some new facet of my health issues that I couldn’t get away from any of this stuff. And at the same time I’m like, “I’m 18. I want to have fun with my friends. I want to be kind of at least somewhat normal. I want the semblance of a fun life right now.”
Brianne: Yeah, yeah. And whatever that looks like, it definitely doesn’t look like talking about health 24/7.
Rachel: Right. And then there’s so much pressure to at least seem like you’re improving or acknowledged the improvements. And at that point I actually was improving. It didn’t always feel like it, but in retrospect, there was a huge leap in my activity level from when I got diagnosed in 2008 to the summer of 2009. Definite improvement. But it didn’t feel like that day to day. I also had a lot of trouble tracking symptoms. This is something I want to talk about later. Tracking symptoms is a complete boondock. Yeah.
Brianne: Yeah. It’s the worst sometimes.
Rachel: But as someone… as a self-absorbed high school student who never kept a calendar and just sort of remembered everything, all of a sudden I had to keep track of doctor’s appointments and take supplements and go to acupuncture and do all these weird things. That was the other thing I always felt like everything I had to do for this illness was weird and unconventional, and I didn’t have a straightforward treatment. And that somehow meant that I was weird or unconventional.
Brianne: There wasn’t just a medication to take. Yeah. Which I feel like, until you find out about chronic illness, you think that that’s what it means to get a diagnosis. You’ll get a diagnosis, and then you’ll get a protocol that works.
Rachel: As if the protocol is what justifies or… I can’t think of the word… it makes the illness what it is.
Brianne: Yeah. Yeah. Which interestingly, as a brief tangent, so at the beginning of The Walls Protocol by Terry Walls, she talks specifically about that part of the history of diagnosis, which is basically that that’s how diagnostic science started was… because they basically had zero diagnostic tools, even like a hundred years ago, labs and whatever have come so far forward, that the way that all of these things are classified by what kind of treatment they responded to, because that’s all that was available. And so that’s why right now so many… like autoimmune conditions, for example, which are relatively new as a thing that we understand and know about, and they’re all clustered by what specialist oversees that part of the body instead of being clustered together as, obviously a dysfunction of the immune system, and it’s because early enough on it was like: Diabetes, we know that if you take insulin, that it will kind of fix it, and we can monitor blood sugar, so it must be a pancreas problem. I don’t know if I’m explaining this well, but it’s interesting. Yeah. Looking at where ME/CFS, fibro, EDS, that whole world of things that don’t have effective treatments yet, I was like, “Oh, that’s what all illness used to look like, and then they’ve been slowly able to pull some out over time.” And that’s when they become… I’m going to stay “legit” in quotation marks, which, so that was not my perspective. But yeah. No, but that’s
Rachel: exactly what I was looking for. The existence of a treatment legitimizes the disease, or at least that’s what it seems like in Western medicine. And that’s a totally just fascinating account of the evolution of diagnostic procedures. The fact that it’s grasping at what treatment works and how certain patients respond to something, and that we’re sort of working backwards from that to arrive at a diagnosis or ideology of the disease.
Brianne: Yeah. Cause it’s like, “Okay, that can give us a hypothesis about the pathology. And then once we have a hypothesis about the pathology, then we can give it a name that makes sense, and then assign it to a specialist that makes sense.” But before we know that, it’s like… well, and this is what’s so interesting about what’s happening in the ME community right now after Jennifer Brea’s remission, is it’s like… you know, people are exploding. People are exploding about this one possible pathology for this condition… about whether or not even counts, and I’m not explaining this to you really, I’m just explaining it as the thing that’s happening right now.
Rachel: No, it’s a big deal, and it’s the same thing… when the XMRV virus stuff came out a couple of years ago it was the same thing. People grasp onto an explanation like this because, for obvious reasons, first of all, if you’ve been dismissed in the medical community for decades, you want some sort of hard evidence that this thing is real and that it exists, and then everything is sort of starts to stem from that, and you’re like, “Oh, well, if it’s a retrovirus, then we’re going to start focusing on these protocols, and that’s just going to start all the Valcyte trials and everything else.” Or if it’s the spinal cord compression and stuff like that, then that sparks an entirely different field of research.
Brianne: Yeah.
Rachel: It’s fascinating to watch all this stuff unfold. It also sucks for us as patients cause we’re like, “Ahh, I don’t know what to do.”
Brianne: Yeah, yeah. “How do I incorporate this today?” Yeah. “How does everybody even get screened for this stuff?” Which is the cervical question that’s happening right now. Does that mean that everyone should be demanding MRIs? Which is even more complicated than what I just said and I know that, but is that the next step for figuring it out? You know, it’s so… it’s such a mess.
Rachel: Well, and everything has become… like with CFS and ME, so there’s no serious hard evidence as far as diagnostic criteria, and then correspondingly, the treatment. So as a result, we have this huge community of people with completely disparate symptoms, and we don’t know if we all have the same thing, but we’re kind of swapping stories to try and figure out like, “Oh, this worked for me, or this worked for you. Maybe we can find some sort of pattern here.” But at the same time, I’m like, “How do I know that you and I have anything in common at all because we have… I was diagnosed by, ‘You’re tired. You’ve been tired for more than six months. I’m going to jab you all over your body and you’re wincing in pain, so you have fibromyalgia. You’re completely incoherent, and inarticulates so you have brain fog. Dah, dah, dah. You have chronic fatigue syndrome and fibromyalgia. Best of luck.'”
Brianne: Yeah, yeah, yeah, and that’s even… like the controversy… I’ve talked about this with other people for sure on the podcast, but with controversy about who gets to call themselves an ME patient and who doesn’t because…
Rachel: Yeah, I have no idea.
Brianne: Yeah, and okay, well those words are technically about inflammation in the brain and most people… I guess I don’t know the statistics on this, but I know a lot of people who have been diagnosed with either CFS or ME, which mostly depends on the practitioner, have never actually been evaluated for brain inflammation. It’s a clinical diagnosis like you said. So it’s also this misleading nomenclature on both of them because chronic fatigue syndrome is meaningless as far as the words go. And then, yeah, and then ME is hyper-specific in a way that also becomes not helpful. So that’s all. That’s all I have to say about that.
Rachel: No, but I totally get what you’re saying, and this is the stuff that I was crashing in on me as a 17 year old, 18 year old, trying to make sense of this whole world of realizing that I have no idea A.) What I’ve been diagnosed with, nobody knows what it is, so I don’t have any sort of mentors or guidance that I can really rely on at this point. A lot of this is on me, which meant that it was on my mom who was advocating for me because she had the brain power and medical background just from taking care of other family members to sort of navigate our doctors appointments and find out different books and new treatment options, but there was no clear path for me to look at and say, “Okay, this is what I’m going to do and this is how I’m going to get better, and this is what’s going to work, because this is why I got sick in the first place.” I was grasping for all these explanations as to what prompted all my symptoms. Like, “Oh, I was backpacking so clearly I got like Rocky mountain spotted fever or an infection?”
Brianne: And maybe.
Rachel: I have no idea. But it was just… it was so uncomfortable for me because, you know, people ask you like, “Oh, what do you have?” And I’m like, “Okay, so this is my diagnosis.” And they’re like, “So what do you do about this?” And I’m like, “Uh. Every two weeks, my internist sticks needles in my body and I get acupuncture. I don’t know.”
Brianne: Yeah, like, “You just live with it and you kind of slow down and maybe accept that you are just a slow downed person forever.”
Rachel: Right. Which sounds terrible because then it’s this like, “Oh, so you’re complacent. You’re not fighting this.” We have this whole industry of… you have to fight chronic illness, and you have to be this warrior, which is great, except that it’s also really exhausting to try and do that all the time.
Brianne: Yeah, it is. It is super exhausting and sometimes counter productive, like actively harming. Yeah, it’s a lot.
Rachel: So that was a fun teenage experience for me. Like your typical 18 year old who’s sitting through her high school graduation bawling uncontrollably, while all her friends walk across the stage and I was relegated to sit with the juniors cause I wasn’t allowed to graduate. Like, how did this happen to me? And I had all these awkward questions during the graduation ceremony. That whole, God, that whole year was just so awkward and uncomfortable for me. I had… I did not have the polished answer of like, “You know, it’s been a really difficult journey, but I’m getting better and I’ve learned so much through this process.” I was like, “I hate this. I don’t want this to happen to me. I could learn life lessons some other way.”
Brianne: Yeah. Yeah, definitely.
Rachel: “Why is this happening?” And I remember, Oh my God, I had so many funny questions like people asking like, “So we heard you like, partied too hard or got pregnant.” And I was like, “Literally none of those things happen. Not even close.”
Brianne: That would’ve been a lot more fun than what happened.
Rachel: This is not at all remotely true. So I agreed to repeat my senior year, cause at this point I had recovered enough and I’m like, “Well if I’m going to go to college, this way I’ll have a solid year of academics under my belt. I’m feeling better. I like school. This honestly could be fun. I’ll make the best of the situation.” And I start up that fall. I’m taking hard classes, but not too many. I felt like I had achieved some sort of balance, and that fall I quickly went downhill, and it was just a repeat of everything that had happened to me last year. Not turning stuff in, missing school, having awkward, uncomfortable conversations with my teachers. Like, “I’m sorry, I feel like I’m letting you down. I can’t do this.” And I remember one time I was in the locker room, and I was behind the bay of lockers so you couldn’t see that I was in there, and there there’s this group of guys on the other side talking and some guy in a joke and he was like, “God, if you keep missing school, they’re not going to let you graduate.” And this other kid was like, “Oh no, that happened. Did you hear about that girl?” And I was just in there cringing like, “Oh my God, I can’t believe this is happening.” “I’m ready
Brianne: to disappear now.”
Rachel: I just run out of the room cause I get that people are going to talk about me. It’s a small school. I can’t hide from this. It’s just so weird to overhear it like that, so. It’s just so funny. Just a lot of uncomfortable situations like that. Eventually at the end of the semester, I had a meeting with the headmaster and the high school director and I was like, “Look, I, I can’t do another semester of this shit. This is exhausting. I’m getting worse. I can’t do this. I will take my finals. I will accept the grades that I get, whatever.” And then at that point I’d already been accepted to Indiana University and I had just deferred my acceptance cause I had applied before I knew the full extent of my illness in 2008. So I was just like, “I know worst case scenario, I can go there, and everything’s… it’ll work out, and I will just take this semester to focus on my health and live with my parents.” And that semester was like, from January to… this is the spring of 2010 then, so living with my parents in Indiana, my friends were all off at college. I don’t have a ton of friends at this point because most of them are elsewhere, and I’m also pretty sick, so it’s kinda hard to have a social life. I started playing piano, which was fun.
Brianne: Yeah.
Rachel: So I had my first piano recital at like 18 or 19. I was at a piano recital with all these five and six year olds.
Brianne: That’s great though. That’s a thing that you can do in another posture. Whatever feels good, yeah.
Rachel: Exactly. So I found some new hobbies. I started cooking a lot. I read a lot of cookbooks, started falling food blogs. And I sorta got into the wellness/chronic illness stuff, but mostly I was just kinda like, “I don’t really… I’m sick all the time. I don’t really want to read about this stuff on top of that in my free time.” And mostly I was just like, “I’m lonely. I’m bored. This isn’t the life I want to be living. I don’t feel great. I’m not making progress. Whatever I did last spring isn’t working for me this year. I don’t know what I did wrong. I don’t know how it got to this point. This sucks.” I took some classes that summer and then started college that fall and enrolled as a full time student, living in the dorms and everything. And the first month or two I was totally fine and had this high of just being like, “Oh my gosh, I’m at college, I’m doing all these things. The classes are great. I have extra curriculars. I joined the wakeboard club.” Great, why
Brianne: not?
Rachel: Why not? So I’d just exhaust myself going wakeboarding, and then come back and sleep all the time, and I tried to kind of skate by as normal college student, and I didn’t tell anybody about my illness, and I was always kinda afraid people might find out to be honest, and I didn’t know how to explain it. I didn’t do any sort of disability accommodations. So huge mistake. First of all, I was like, “Well, if I get accommodations then I’m never going to turn in anything cause I’m going to just take advantage of this and I’m going to become lazy. I have to have the pressure of the deadline to get this paper done.”
Brianne: Yeah. That’s some good internalized bullshit right there.
Rachel: For sure. I had convinced myself like, “No, no, no. Yeah. I will be weak if I asked for help at any point in my life. Yeah. I can’t do this.”
Brianne: Which tells you a lot about the messaging around that stuff that’s happening anyway, right? I don’t think… we don’t come up with those ideas on our own. That’s perpetuated in the culture that. Anybody who is asking for extra test time or asking for extensions over and over again and trying to legitimize it must be exploiting the system or whatever.
Rachel: Which is so funny cause then years later when I finally did take advantage of the wonderful resources my university afforded me, no one ever gave me shit about that. My professors were amazing, were so helpful, so kind, so understanding. I remember one professor, I was in the office hours talking about something cause I had missed class, shocking and was catching up on some notes about something. And he just, at one point he was just like, “I’m really sorry you’re going through this.” I was just about to burst into tears. It still brings tears to my eyes this point cause nobody says stuff like that ever, and here’s this incredibly accomplished, educated person telling me, “You know what? What you’re going through is real. And I’m really sorry that it’s happened to you.”
Brianne: Yeah. And like, “It sounds tough.” Sometimes just an acknowledgement that, “I see that you’re working really hard, even if it’s not having the outcome that you were hoping for or that other people have. You’re working hard, and that’s real.” Like, ”
Rachel: Oh, shit.” Yeah. And that’s something that first semester in college when I was just hiding my illness from people. I was sleeping all the time. I was exhausted. My month or two of college excitement quickly wore off, and I started to plummet really, really quickly and just became so isolated. I spent so much time in my dorm room because I was exhausted all the time. I was just trying to get through, get by, get through these classes, get through my finals, just get shit done and not get too caught up in anything else cause I just didn’t have the energy for it. And then all at the same time, I’m trying to make friends with people, which is really, really hard A.) If you’re just lying and hiding this major part of your life, but also cause I was never outside of my dorm or classes. Just like
Brianne: in places where socializing is happening.
Rachel: I wanted to be where the people are. So I slowly made a small group of friends from one of my math classes, and they ended up being really supportive. But in hindsight, I’m like, “God, I just never gave people credit for how kind, actually, a lot of humans are.” I just, because I had my own judgments about my illness and my activity, lack thereof, or perceived weaknesses that I just assumed everybody else was going to be like that, and instead a lot of people were really kind and would try and do something that was accommodating for me as a friend as opposed to being like, “Hey, let’s go out til 2:00 AM and get shit faced.”
Brianne: Yeah, yeah.
Rachel: Not really feasible for me.
Brianne: No. Which would feel awful. Yeah. Yeah. And that’s such an interesting… it’s kind of the same as the accommodations thing… of just being like, “Oh, well the culture has told me this about this kind of experience, and so now I’m running around expecting it.” And like, that’s not accurate sometimes. God, this is what we need better representation. Or any representation.
Rachel: Yeah, and for my own sake. Why did I just immediately assume that all these negative things… I am prone to anxiety, I catastrophize about situations and so I’m immediately assuming the worst about people who are actually really kind. And because I have these own judgments about my own success or my resume or something, I somehow assume that everybody’s going to act like that. That’s not the case. I’ve had my share of people in life who have not been supportive and have been insulting and called me lazy and stuff. And that’s unfortunately, part of this process…
Brianne: And also probably all about their shit that we don’t really know about when someone’s walking around like that, but you can’t know.
Rachel: Yes, we project. Yeah, but eventually I pulled this up actually in preparation for this, so Laura Hillenbrand, she wrote the essay “Sudden Illness” that was in the New Yorker many years ago. I think it was in 2003. Great piece. That was one of the first things I read about chronic illness, and of course I read this and I’m like, “Well obviously I have to write an essay for the New Yorker.”
Brianne: Now’s the time.
Rachel: It’s just my… people just don’t understand my genius. I have to write this stuff now. But that was the other added level of pressure I put on myself cause I was like, “Well, Laura is probably even more sick than I am, and she still gets published. She wrote… fucking see this… what am I doing with my life? I haven’t started a wellness empire. I gotta get on this.” But she had this essay that I came across on Facebook or something. And then I found it again today on one of the old Phoenix rising forums, and she talked about the shame she felt about her illness. Cause I remember getting to this sort of breaking point where I was like, “Okay, I have to start telling more people about what I’m going through and being more honest.” Just because there’s this huge burden. It’s such a weight on my chest to try and mask all this stuff. And there are so many legitimate examples of times where I need to explain why I didn’t do X or why something is hard for me. And giving these vague bullshit answers to everything is just being… I’m just being disingenuous to the people who care about me. There’s no reason to make myself go out of my way to do all these difficult things. When I could just say, “Look at this is really difficult for me cause I need to rest right now.” And instead I was like, “No, I will sign up for all the hard things and just suck it up and then go sleep for 12 hours afterward.”
Brianne: Yeah, and then hide the consequences.
Rachel: Right.
Brianne: Yeah.
Rachel: And then I got to the point where I was like, “Well, I shouldn’t be ashamed of my illness anymore, but now I’m ashamed that I’m ashamed about all this.” I had this extra level of self-flagellation going on right now because I decided that during this past five year struggle I really should have been more public about this stuff because if I had gotten some other diagnosis, I wouldn’t have hid it. I would’ve been like Instagramming this shit.
Brianne: Yeah. And leading the way on advocacy in your high school.
Rachel: Yeah. Why was I not this CFS warrior with some massive media following? How did I not also accomplish that? There’s just so many levels of achievement-insecurity and anxiety that get me through all this stuff.
Brianne: No, I’m sure. And it’s so real. It’s also… that’s like college essay culture where you’re like,”Well, I should have gone out of my way to be the best version of this so that I could tell people about it.” It’s, so, yeah.
Rachel: That was the other thing. I was like, “Well, if I’m going to be sick, then I have to be a really good sick person, and then be this beacon of hope for everyone around me. Be an example and use my talents and obviously charming wit to just lead the way.”
Brianne: Yeah, and that’s the inspiration porn side of things, of like, “Okay, so I either have to become a healthy person and then tell people how I did that. Or I have to show people how much I can accomplish anyway and yeah, prove
Rachel: that I’m a warrior.” “Here’s my green smoothie. Congratulations. I won today.” Yeah.
Brianne: There’s competing pressures for sure. And yeah, like you say, when you decide that you’re going to start sharing about something. There’s like also this, “Okay, but how do I explain that I’ve been keeping it a secret from however many years?” And probably actually a lot of people don’t care, but it doesn’t feel that way.
Rachel: No one cares, but it doesn’t feel like that because I’m super important. No one really cared that much. The funny thing was realizing that like, “Okay, so I’m going to try and be a little bit more public about what I’m going through and give people honest answers about this issue. I’m not going to try and be ashamed of this because there’s nothing to be ashamed of. And if I’m more honest with my friends, I’m going to have better friendships because of it.”
Brianne: Yeah.
Rachel: And then you’re like, “Wait, so how do I actually… what are the logistics of doing this? And at what point in a friendship or relationship do you actually bring up this stuff?” Cause that’s one thing… I didn’t really date that much in college, but you know, I started dating someone after I moved to Wisconsin and it was just like, “Oh, so this is a new situation.” At what point do you bring up like, “Yeah, you’re really cool. By the way, I have a chronic illness, and I don’t know if I’m going to get better. It’s fine.”
Brianne: Yeah. Yeah. And, “I don’t know how it’s going to affect you or when I should tell you, cause in early dating it doesn’t matter, but it kind of matters. And if we get serious then it definitely matters.”
Rachel: Definitely, right?
Brianne: Yeah, and there’s no guides for that. I mean, I’m sure someone’s…
Rachel: Yeah, I should write that.
Brianne: Yeah. I’m sure someone’s written a listicle about it on The Mighty, but I doubt that there’s anything really, really comprehensive and helpful about it, and it comes up all the time. I know it comes up all the time because people tell me about it all the time.
Rachel: Right.
Brianne: Yeah.
Rachel: No, it’s definitely a big deal. And for me, especially… so I have… I would say I’m like moderate severity. So I am not working full time, but I can still do different athletic endeavors. And I’ve, for the most part, retained my general physique. I don’t look sick, especially if I wear makeup, then unless I’m in the midst of her, a really terrible flare, you’d have to spend 24 to 48 hours with me to really understand the full extent of my health issues. So if you just meet me during a social situation, I can pull myself together for an hour or two and I’m fine, and I will not look sick. So that adds an extra level of complication to things cause people can be like, “Oh, but I met you at a regatta! You sail and yet you have this chronic illness.” And I’m like, “Yeah, yeah. Like I contain multitudes.”
Brianne: Yeah.
Rachel: It’s both. I have many things going on.
Brianne: Yeah.
Rachel: And so having to get to a point where I can explain the competing aspects of my life has been really challenging for me. I was having dinner with a guy the other night, and I was just like, “So, yeah, I realize you met me at the regatta and I sail, but it’s also really late and I need to go to bed right now. And it’s not because I’m not enjoying this conversation with you, but I’m going to feel like death if I don’t go home.” And that’s an awkward thing to bring up in a situation like that because from my end, I’m thinking, “How is this going to be interpreted?” And he was like, “Oh, that’s… I completely understand. Let me get you a cab. Everything’s going to be fine.” And I don’t know if everybody’s going to be like that, but my anxiety about dating and friendships and relationships in general prior to the past couple of years was always like, “How am I going to find somebody who…” my goal was basically, “Hopefully I will find somebody who can put up with this.” At best, right? Because this health issue is such a colossal burden that I’m going to have to overcompensate in some way. I’m going to have to be just shockingly good looking and also a really good cook and somehow make up for the fact that I’m this horrible burden on whoever is cursed to date me for the rest of my life. And that was more or less how I approached dating and relationships. Like, “I don’t know how I’m going to find somebody who can put up with all this.” Rather than thinking like, “Oh, wait, no, actually there’s some really valuable life lessons and perspective that I’ve gained from this experience that could be really helpful in a relationship. And I have a lot to bring on my own.” That was not attitude I brought to it.
Brianne: It’s not in there.
Rachel: And I was lucky the last guy I dated seriously was incredibly understanding and very kind about everything and never made me feel like I was a drag on the relationship. I always thought like, “Oh, we’re young, 20-something people, if I have to stay in and can’t do fun things all the time, who’s going to want to date me?” And instead I was like, “Oh, this person’s actually incredibly kind and does not see that as a drawback necessarily.” And that was an important learning experience for me because just learning how to be in a relationship with somebody and cope with my own illness and understanding how there are things that I go through physically that are going to affect the other person who is spending time with me. I did not know anything. I had no idea how that was going to work prior to that.
Brianne: Yeah. Well it’s complicated. And one thing that I still struggle with but I have finally started to be able to articulate is, part of the difference is just becoming better able to communicate your own needs. Cause I historically have created a ton of crises in my relationship where I really want to be able to do something and so I will wait until the last minute to back out of it. And yeah. That creates a really big problem. And actually the problem isn’t because of my health, the problem is because I wasn’t honest with either of us about the implications of my health. And so it’ll turn into this dramatic thing, and it’s not that he’s being like, “Oh, I hate that you have a health problem and can’t go to this new year’s party with me.” It’s that he’s like, “Oh, I wish that we had talked before two hours before we were supposed to leave so that we could have, you know, made a plan that worked instead of…” This is not a quote. We have never had this conversation in this exact way. We’ve just had versions of it and I’m condensing it, but the problem was never my health. The problem was, “Hey, how do we work together to make sure that our life works around whatever those limitations are?” And it’s been really helpful for me also to recognize that everybody has limitations. They just take different forms. So yeah.
Rachel: I’ve forgotten what it feels like to be… to feel normal, basically, and so I forget that a lot of people actually go through challenges of various kinds, including fatigue, right? It’s not just me. I’m not uniquely cursed in this life for some kind of horrible suffering that no one else can relate to ever. And as you said, the communication part of it is what matters. It’s not the fact that I’m sick. It’s the fact that I was not open about my anxiety about going to this St. Patrick’s day thing, and so I spent the entire day nervous about crashing and not enjoying the fact that I was in this fun environment with cool people. And instead I was just panicking about what was going to happen afterward, even though I’d committed to do this thing. Instead of going over beforehand like,” So logistically, what’s the schedule going to be like? When can I rest? When can I do these things?” I could’ve sorted all that stuff out beforehand, and so I was like, “Sure, I will do this thing, but I’m not going to enjoy it. I’m going to be… punish myself the whole time. Instead think about how tired I’m going to be afterward.” Yeah. And that’s a terrible, terrible way to do it, but I didn’t know what it was doing.
Brianne: Yeah. No, it’s still… I don’t know cause for me pieces of it will be like, somehow I’ve gotten the idea… I’ve internalized that I shouldn’t be asking for this much space or these accommodations, or I should be able to… That’s
Rachel: too much! How dare you?
Brianne: Yeah. Or I should be able to go with the flow, and I want to be able to go with the flow.
Rachel: You need to be a chill girl who just can relax.
Brianne: Yeah. Yeah. Which by the way, even just saying those words is so not unique to chronic illness,
Rachel: that’s
Brianne: such a broadly… especially for women, I feel like, thing. And so. Okay. Sure. Maybe if we could just accept that… it really changes the game around relationships, so… it’s so interesting. Anyway…
Rachel: But yeah, learning how to be in a relationship, whether it’s dating or being friends with people with a chronic illness, being honest about everything. And then also realizing that I can explain to people that, “Yeah, I was able to go on that ski trip and I was able to ski and it was hard for me, but I got through it. But I don’t do that every week and most weeks are more like this, in fact.” And actually people can understand these things, we are complex human beings. It’s not… it is complicated. But people are pretty understanding about like, “Yeah, okay, I get it that you can’t do this kind of extreme activity all the time,” and will be understanding as a result. And then also realizing that if I open up about what I’m going through, then I’m giving people space to share what they’re dealing with, and so I’ve had many more sincere, deep conversations with friends in the past couple of years because I have decided to say, “Yep, you know what? I am an anxious person. This is what I’ve struggled with. This is really difficult for me right now, and this is what it’s like to live like this. And if you ever want to commiserate and talk about your stuff, I’m here for you.”
Brianne: Yeah. Yeah. And I think stuff… especially when you go through stuff when you’re kind of younger… if you’re the first one to have a health crisis or a loss or whatever, going through that the first time when it’s so freaking isolated really changes your perspective on how to support other people as they go through it. And so, yeah. And it’s not about being like, “Well, I’m so glad that I got sick because now I know how to talk to other people who got sick.” No, it would still be cool if that hadn’t happened.
Rachel: Right.
Brianne: But.
Rachel: I would still have preferred…
Brianne: Yeah, but at the same time, I so relate to what you’re talking about. It’s like, “Oh, it’s really easy for me to have a lot of conversations that I know make some of my friends uncomfortable. That they don’t know how to have yet because they just haven’t had the underlying experience that makes whatever the conversation is.” Even these conversations, like these interviews. I am squeamish, so sometimes in health conversations there are moments where I’m like, “Oh God, I can’t talk about this.” But the emotional component… yeah, you’re not going to tell me something that I can’t handle even if I haven’t been through it or whatever, because we’re all humans and we go through stuff and we learn about it. I’m losing my coherence here, but…
Rachel: No, I think that’s a really great point. Two things I thought about. First, there’s the age issue, so I remember listening to an interview, I think it was with David Brooks, he was talking about basically that people have these inflection points in their life and you’re broken open or you become bitter and you’re basically broken down, and how you choose to deal with something, but that usually that happens later, either in your 30s or 40s or something, whether it’s the death of a parent or a chronic illness or something. And that, for a lot of us who’ve been diagnosed early, we just have that happen when we were like 18, like for me, I was a teenager. I had no idea what was going on, so I’m hitting these significant life points and a lot of these lessons at a much earlier age than I wanted to, I guess. But also that… God, what was I just going to say?
Brianne: I don’t know. Cause you were talking about the interview. So I don’t know if from hearing that…
Rachel: It was something really profound, I promise. Yeah. This is what happens. No, no, no. Okay. So another story that I will go into, cause this is just so relevant. So in keeping with my tradition of being an overachiever who sometimes prioritizes academic and career success… God, words… over my health… I had a couple of years in college… I had one year in college, especially where I was much healthier. I had started doing all these alternative treatments, and I was able to go back to school as a full time student having taken the previous two years off.
Brianne: Okay.
Rachel: So I get back to school and I’m like, “Well, I’m going to sign up for everything at once, obviously.”
Brianne: Yeah.
Rachel: I took all these hard classes. I decided… I was like, “There’s this super famous bike race that our school. I should do that. Obviously I have all this energy now,” in quotes. “I might as well sign up for this bike race, cause I’m not competitive or interested in athletics at all. So I will totally be able to just do the bare minimum of participating in this, getting by and…” Super gentle. Right! Yeah. “I’ll pace myself. It’s all about pacing really. You can do anything if you pace yourself.” So I did none of those things, obviously. I had jumped in, and I was doing really well at first, and then around spring break or so I got super sick, had the flu, and just crashed and continued to plummet, but somehow still made the race day team. So I ended up only riding 10 laps of a hundred lap race, was still wiped out, obviously from training and everything. And then earlier that year, I had gotten this offer for an internship to work at an investment bank in New York that summer. And I was not sure if I would take it because health limitations for obvious reasons, but I was like, “Well, I did this bike race so I can do anything.” Instead of thinking, “I did this bike race. I’m tired. I should get some rest” Yeah. “And
Brianne: it was a lot.”
Rachel: So I worked in New York for the summer. I was living in this super musty apartment with one window in Manhattan that probably was filled with asbestos or whatever kind of carcinogens, I’m sure. Yeah,
Brianne: 0%
Rachel: healthy environment. It was terrible. No air conditioning, just terrible living conditions plus the stress of work, and my health went downhill so, so fast, and the entire summer was just a brutal experience for me. And I had gotten to the point where I was like, “Well, I committed to do this. I’m going to stick it out,” Instead of what I should’ve done which was leave after a month. When you’re sitting in your office, light-headed in the middle of the afternoon and for no apparent reason. That should have been a little bit more of a warning sign. I’m like, “I’m going to pass out.”
Brianne: Yeah. I still hear that though, of being like, “I’ll just sit here and try to look normal, and that’s the same thing as doing my job.”
Rachel: “I’m a professional-looking person so I can get through this.”
Brianne: Yeah.
Rachel: So the insomnia… all of my symptoms just became worse, brain fog, everything. I started having insulin issues, so by the time I got back to school that fall, I was in the middle of the semester on the phone with my disability coordinator and she’s like, “I think you need to drop your classes. Possibly drop out of school because you’re missing all this school and you’re really sick.” And I’m like, “No, no, no, I can’t do that. Cause I decided I was going to apply to study at Oxford next year, so I have to stay in school and do better academically.” So I just pushed myself to get through the semester and didn’t go to my classes and then would teach myself the stuff on the weekends. And I was like, “Well I’m going to Oxford and I’m going to prioritize my health at the same time, so I’ll just not have a social life and just not see people ever.” It was miserable.
Brianne: Yeah, cause that has nothing to do with health and particularly mental health.
Rachel: Exactly. No implications whatsoever on my broader longevity or satisfaction in life. I’m just going to sit in my apartment, cry, listen to Radiohead and Belle and Sebastian and get these Oxford applications done. Eventually I started to sort of moderate. That was actually one of the first times. I’ve done counseling off and on pretty much since my diagnosis, but that fall I had somehow gotten in touch with the psychology department at the university, which, fun fact for all your listeners, if you live in an area with a research university, the psychology department a lot of times will offer free or low cost therapy.
Brianne: That is a fun fact.
Rachel: Yeah. And it’s… you’re usually meeting with a PhD student who’s being supervised by the clinical psychologists and professors. I’ve had great experiences doing this. I do it now. I did it when I was in college, and so that was my first experience with any kind of CBT or anything which I get is controversial, but for me it was very helpful in managing my symptoms and health illness. And that helps me gain a little bit more perspective of like, “Okay so maybe this approach to life that I’m doing right now where it’s just like sleeping and studying and everything is a little narrow-minded, and I should make a little bit more time for socializing and stuff cause that’s actually really helpful for my health.” So that helps a lot. Fast forward, fall of 2015, got accepted at Oxford, fly over to England with my mom, go study… or go to orientation, rather, find out that the place I’m staying in is infested with mold because huge shock: it rains a lot in England.
Brianne: Yeah.
Rachel: And these buildings are all like a thousand years old.
Brianne: Yeah.
Rachel: So the place I’m staying in was just riddled with mold. I get this sinus infection. I’m light-headed. I have all these… terrible dizziness, fever, horrible symptoms all of a sudden. At which point I realized like, “Oh shit, so I can’t do this. I have to withdraw from this program.”
Brianne: Yeah.
Rachel: And the last day,… one of the last days I was in Oxford, my mom had gone over with me to travel, and she was also going to a conference. And I’m wandering around the city at the Oxford union, which is their famous debating society, and have this beautiful library and amazing, amazing building. And I’m just soaking up all this knowledge, trying not to cry hysterically as just walk around by myself staring at all these pictures of old guys.
Brianne: Yeah.
Rachel: My mom calls me and she’s like, “Hey, this guy is at the conference, Michael…” and I had heard him speak before and she was like, “I think you should come down and meet him. I think you’d really enjoy talking to him.” So I’m like, “No, mom, I can’t come down and meet you at your conference. I’m in a library. How dare you?”
Brianne: Yeah, “I’m doing something.”
Rachel: “This is important.” But so I was like, “Fine.” So I hop on the bus and go, and she’s just at a different college, so it’s just up the street. So I walk in like, “Hey, what’s going on? Hi. Clearly I am in a great mood right now.” He was like, “Hi, it’s so nice to meet you,” all this stuff. And I’m like, “Yeah, great.” He’s like, “So what are you doing in Oxford?” I was like, “Well, I came here to study, but I had to withdraw because of health problems. Everything sucks.” And he’s like, “Oh, I’m so sorry to hear that. What happened?” And I was like, “Oh, chronic fatigue syndrome.” He was like, “Oh. I was actually diagnosed with that many years ago.” And I just lost it and just started bawling in front of this completely strange man. He’s like, “Here, come with me.” He takes me up to his office, which is this beautiful sun-drenched room full of books and talks with me for like an hour about health and God and religion and life and everything possible, and was just one of the kindest things that anyone has ever done for me. And completely unexpected because I just had wandered into this room with a shitty attitude and been just like, “I don’t want to be here.” And instead he was just like, “You know what? I will be kind to you and understand and not ask you uncomfortable questions about your life, but instead just share some of my experiences and what works for me.” And I was just like, “Oh my God, what an unexpected delight in the face of what I felt at the time was just incomparable tragedy.”
Brianne: Yeah.
Rachel: Horrible experience. But yeah, that was a really hard trip for me.
Brianne: Yeah.
Rachel: Yeah. It was also one of the things where I was just like… this is the time when social media is growing, and I’m like, “Okay, so do I Instagram this disappointment? Is there a way to share that? How the hell do you filter existential dread?”
Brianne: Yeah. And that’s so hard. Because on the one hand, so that conversation is really a great example also of why we need more representation. We need more models of what people are doing because there’s so much space in between losing all hope and kicking illness’s ass and going out there and living. There’s so many people living in that gray space in between that we sometimes don’t know about or don’t have access to. And it can be so profound to find somebody and hear about that. That’s insane. And then social media separately.
Rachel: Oh yes. That was just a hilarious moment for me where I was just like, “Wait, do I… is there a hashtag for this?: But yeah.
Brianne: Yeah. And like, “How do I write about it and who’s going to see it?” Cause if I’m trying to tell other people who are sick, yeah… telling other sick people… they’ll probably get it so we can talk about it. But if I’m like, “Is it my friends from high school who are going to see it? Is it… are they even going to know what I’m trying to communicate?
Rachel: Yeah. It’s just… it was strange. And that whole period of time was just so difficult for me cause I was trying to come to terms with… I really, really wanted this thing. I’ve been dreaming about studying there for years. It seemed like it was going to be a good fit. I had contacted people in ME/CFS support groups and stuff. I had even seen a CFS specialist in London who was really helpful. I felt like I had the support infrastructure there to make things work, and then just the series of things happened where it was just like, “Oh my God, I can’t actually continue doing this. How did I mess this up so badly that I got to a point where I honestly thought like I was going to be able to study in a foreign country for a year in this academically rigorous institution and not have any health issues?” I was mad at myself for making that decision, but I was also just so disappointed that it didn’t work out for me cause I was like, “Oh, this is something I wanted, and I wanted it so it must be good for me.”
Brianne: Yeah. Yeah. That’s so real. And like not… that’s it. It’s hard, and I feel like sometimes people want to say like, “Oh, you just need to find the right adaptation. If you really want it, then you just have to find out how to make it work no matter what.”
Rachel: Yeah.
Brianne: And at a certain point, it’s not about giving up, but it’s about doing a really honest cos- benefit analysis for your whole life of, “Is what this what I thought that this would mean to me? How does that compare against what I now know about my own body and its limitations and how it likes to be taken care of?”
Rachel: Yeah. This whole thing is just a constant exercise in adjusting expectations because what I thought my life was going to look like is not at all what it looks like now, and that’s not necessarily a bad thing, but growing up, I had a certain path in mind. I idolized a lot of journalists and writers and so I got it into my head that… it still cracks me up to this day, but I sincerely believed that man’s noblest calling in life is political commentary, and that anything less than that is so totally insufficient. So if I’m spending my hours taking care of myself and taking my supplements and reading about health issues, and doing what I have to do to get through every day that somehow is less worthy than whatever it is my friends are doing from high school and whatever other people put on their resume. Because I can’t put like, ‘Oh yeah, you know what? I’m actually really great at filling capsules,” on my resume without sounding like an addict or something. Or there are so many other skills that I have decided are so insufficient compared to what I thought I was going to be doing because they have to do with this health… illness that I do not want to be going through.
Brianne: Yeah. Yeah. It’s like, “Well, you know, however many hours of my day are basically devoted to self care and in a non-optional way.” It’s not like, “Oh, you’re really good at taking care of yourself and you’re such an overachiever in all other domains of your life. I’m impressed at your whatever… commitment to yoga.” It’s like, “No, I have a non optional many hours of making sure that I eat the right way and move the right way and rest the right way and consume media the right way. And then I maybe sometimes have time leftover to devote to this other thing that I really care about and want to put myself into.” Yeah.
Rachel: Yeah. I didn’t choose this path, and so there’s so many times when I’m like, “Well, this is not as meaningful an experience as it could be because, well, I’m sick, and I’m so tired that I don’t have the time to actually help other people who are sick. Therefore I’m being a bad sick person, or I’m being a bad patient or something.” Or, “I spent six years in horrible shame about my health condition, so I missed out on all these opportunities to transform the lives of others.”
Brianne: Yeah.
Rachel: You can really get a great idea of how important I think I am.
Brianne: Yeah. No, no, I hear you. And what your self talk is like,
Rachel: yeah. Reall neurotic. Well… so I got back from Oxford that fall, and I went to see my endocrinologist, and I remember being in an appointment with him cause I had basically told a couple of close friends about what had happened. I had written a long message to them and written some emails. I wrote a lengthy email to someone close to me, and the response was, “That sucks.” I was like, “Thanks?”
Brianne: Yeah, fair enough. I guess. True.
Rachel: But so I go see my endocrinologist, and I’m talking to him, and he started talking about some health problems that his son had had. And specifically a lot of really serious challenges. And I was just like… and he just ended it by saying, “You know what? I didn’t talk to people about this for a long time. And then I realized I’m doing disservice to everybody else who’s suffering out there because I was keeping all this quiet and I could actually be helpful to somebody.” And I was like, “Bingo.” I know I’m not ready for full publicity about everything, but every moment that I share at least some nugget of something I’ve gone through could help somebody. And my last night in Oxford, I went to dinner with my friend at his college and for the past… I’d been sick for six years at that point, maybe. I’d always come up with some sort of spinny polished bullshit answer for, “So what do you do?” Cause when you’re in college, I could just say what I was studying and just hide everything else, right? When I’m living with my parents and in an indeterminant wilderness years stage, it’s a little bit harder to do that. And I would come up with something like, “Oh, I’m a trophy wife. Haha, I’m so funny.”
Brianne: Yeah.
Rachel: And change the subject immediately. Or, even in the past couple of years after I graduated college and I was wandering aimlessly through life and I’m like, “Oh, I’m studying for the LSAT.”
Brianne: Yeah, “I’m doing a thing.”
Rachel: Yeah cause going to law school is not an aimless task.
Brianne: Yeah, it’s a path people know about.
Rachel: So I was at this dinner, and someone asks me, “So what do you do?” Or, “What’s going on in your life?” And I just said, “Oh, I’m recovering from chronic fatigue syndrome.” And the guy’s like, “Oh, actually my wife has that.” And we instantly had this conversation. I was like, “Oh wait. So if I am honest about this stuff, this actually might be kind of useful and helpful.” Not to mention a huge relief for me because I don’t have to go about lying all the time.
Brianne: Yeah. And it’s…
Rachel: Sorry, I cut you off. What were you saying earlier?
Brianne: Oh no. I was gonna say… actually, I dunno, I had a couple of intermediate things that popped into my head. One was, I still… I don’t know, at the doctor’s office or random form places where I have to say what my job is, I still say that I’m self-employed, even though I literally have not made money in this calendar year. I’m not self-employed. I’m just not working. And that’s just the truth of it. But I don’t know why, cause I don’t know how to phrase that to people. So that was one side thought while you were talking about how to explain what you’re doing. And then the other thing was, I think there can be a huge pressure on people also to put spin on even illness stuff. It’s like if you aren’t. Solving the problem, then you’re
Rachel: not… Yeah, if you’re not doing better…
Brianne: Yeah. Don’t talk about it. Yeah. And it’s like, “Oh, actually there’s huge, huge value in sharing just that you’re going through it and not because it’s gonna help someone else fix themselves, but that doesn’t have to be our goal.” It’s just that there’s so many people who are… yeah, silently going through this, not talking about it, not knowing that anyone else is also silently going through it, not talking about it. And that vent by itself can alleviate so much anguish, even if it doesn’t improve symptoms at all, even if it’s not a silver bullet for getting better and that matters, that matters a lot.
Rachel: Yeah, that’s huge. Cause when people in positive psychology and other happiness researchers, they talk about the importance of community and friendships and the role that that plays. And that’s something that I totally undervalued in my early years of this illness because that was the easiest thing for me to try and cut out in my attempt to be like, “I’m going to be this disciplined Roman Centuriate and who just follows all the rules and is the best sick person ever.” And it’s the bargaining stage of grief, right? If I eliminate all this extraneous shit, if I go without alcohol for eight months, I will cure myself, and this will all be worth it because I sacrifice all these things and that’s going to be my bargaining chip for this. Then I’m going to have no social life. Rather than thinking, “Actually there’s a lot of value that comes from having this community.” Even if you’re not solving each other’s illnesses, just being around people who make you feel good, people who understand you, who make you feel like you matter and understand at least a tiny bit of what you’re going through and can just sit there and laugh with you because that has as much benefit for me as taking an important supplement, if not moreso.
Brianne: Yeah, yeah. Mental health is so important and I think that’s something that is so… I feel like I’m still trying to find language for explaining it to people in my life that are not sick people. Like, “Yes. I do experiment with protocols, and I do want to try new things that might help me feel better, but I can’t be doing that all the time because if I’m doing it all the time, I’m also paying a huge price in my mental wellbeing.” Because when you don’t have a social life, when you are really rigid about following all of these guidelines, that might help or might not, there’s a cost to that. And I think that a lot of times probably especially healthy people, imagine that it’s going to be short term cause it will fix your problem and then once it’s fixed you’ll be better and you’ll be able to do all this stuff you want to do. But the reality for most people that I know, or most people that I’ve talked to is that that’s not what happens. And saying that isn’t being a pessimist.
Rachel: I think that’s a really important point. That a lot of the realities of our illness are… they sound so fucking depressing, and that’s not because we’re catastrophizing about these issues. It’s just… that is the reality. And so yes, you can have a positive attitude. I am much happier than I think I thought I would be, given that I’m still dealing with this illness. I don’t think… if you had told me 10 years ago that, “Yep, this is still going to be a thing.” I would have been like, “Why? Don’t pick me to go through that.” But at the same time to understand and be honest about the fact that, yeah, this is actually really difficult, and there are a lot of people who don’t get better. There are a lot of people who don’t have the luxuries that I do. I can still exercise for the most part, and that’s a huge source of joy in my life. And it’s really hard on the days when I’m crashing, and I can’t do that, so I can’t imagine what it’s like for the people who are like that all the time.
Brianne: Yeah. And that’s even… well, Julie Rehmeyer in her episode was talking about… Great episode. Thank you. I would like to take full credit for all of Julie’s insights
Rachel: about life with chronic illness. Your interview questions were amazing.
Brianne: Thank you. I did a lot of crap of… I had already read her book and was obsessed with it.
Rachel: Yeah, she’s incredible.
Brianne: But I love at the end when she’s talking about it, just being like, “Avoiding suffering isn’t necessarily the goal here.” And so one of the things that you do learn with chronic illness, wherever you’re at, or wherever it finds you, you can find joy in things, and you might not have realized that as a healthy person or when you try to relate to people who are sicker than you, it’s easy to be like, “Oh, I can’t imagine dah, dah, dah, dah.” And that’s true. You can’t imagine it. But we adapt. We are adaptable, and we get to find new ways to create joy and find new ways to be at peace with rest and all of this stuff that… could not have imagined would be necessary as a healthy person, I think.
Rachel: Yeah, and I don’t think, I mean, I definitely did not give myself the credit that… getting better, first of all, it might mean just that I get better at handling things rather than like, “Oh, now I’m able to run a mile or something.” That the barometers for… barometer is not the right word… metrics for success in this situation are going to be really different, and it’s entirely likely that I will wind up leading a life that I did not imagine, that this is going to be an ongoing battle, and that doesn’t have to be a bad thing necessarily. But I don’t have to assume that because I’m not achieving the sort of success that I thought I’d be achieving, that that means my life’s going to be miserable. And also that I had a couple… there’s a couple of weeks ago where I just had this breaking point where I was just… in the midst of a flare, my symptoms that had been going on for a couple of weeks, I’d had to deal with some really difficult family stuff and prompted all these stressors, which as I’m sure you know, the connection between the mental and the physical are just… it’s inextricable. There’s… the triggers on your health are everywhere. But anyway, I had just gotten to this point where I was just like, “I’m so frustrated and I feel so powerless.” There’s no… you have no perceived control as the researchers would say in this situation, and it’s really difficult to get through that. And I picked up, for the first time in a couple of years, Man’s Search for Meaning by Viktor Frankl, which is a great book that pretty much everyone everywhere should read. And it’s about his time surviving the Holocaust, but not specifically the horrors of the concentration camps themselves. But the psychological toll that it took on the prisoners, and when you read something like that, it’s easy to say, “Oh, well, yeah, stuff sucks, but at least I’m not surviving the Holocaust right now,” which is one reaction. But also to see, “Oh my God, I’m not alone in this. People have gone through all kinds of unimaginable suffering throughout humanity and found a way to cope and found joy or found some sort of meaning in his case, in the most dire circumstances, and I can do that too.” That’s the one thing that’s really… I’ve tried to come back to every time I’m in a dark situation, or I’ve started to lose hope about my health situation is that, “No, actually there is a way to find meaning in this.” Even if it’s just a short conversation with somebody else about what I’m going through, for whatever reason that brings me so much satisfaction, and honestly, in a way that getting a good grade on a test is not going to do that for me.
Brianne: Yeah. It’s not the same. It’s a different thing that you have to learn about, or a way of, yeah, deriving meaning. Yeah. It’s all different than what you expect when you’re pre-sick.
Rachel: It’s so different. I did not expect any of this to happen. I didn’t expect to still be sick at this point, but here we are.
Brianne: Yeah. Yeah. Can we talk about your present a little bit?
Rachel: Yeah, absolutely. I’ve alse not given you any details about my medical treatments.
Brianne: No, and I also understand, I think with ME/CFS specifically… because it’s so much more personal experimentation, sometimes the strictly chronological medical approach doesn’t make as much sense because it’s a lot more of… it can be a lot more of an internal journey basically, of acceptance and figuring stuff out.
Rachel: Absolutely thank you for sticking with all my philosophizing and attempted profundity.
Brianne: Yeah, no, it’s been consistently true across conversations about this stuff that sometimes if you have a really tactical diagnosis and a really technical series of treatments and surgeries, then that can be the whole thing. And sometimes it’s like, “Well, they told me that I had chronic fatigue syndrome, and then they told me to go home, and that was 10 years ago, and now I’ve spent 10 years thinking about it.” Of course that’s a different conversation.
Rachel: It just becomes very personal because you can’t disassociate yourself from this. There’s no point at which you can just be like, “Okay, so the part of my life that involves health is when I take this pill in the morning and then everything else goes away cause I go about my day.” For me it’s just all-encompassing, and I try and sort of separate things. That’s why I like to sail. When I’m on a sailboat, there’s so many things that I have to do and focus on that I don’t have any more head space for thinking about health. I think that’s why a lot of people find meditation helpful.
Brianne: Yeah. Yeah. Just putting your focus somewhere else for a while is a big relief. But yeah, cause I was gonna ask basically, of the things that you have tried or experiments that you’ve done, either on the one hand, are there any that are noteworthy for having been high effort and terrible? And then on the other hand, what have you found is helpful and what has kind of stuck around?
Rachel: Okay. So to give you an idea of my activity level right now… so bare bones, I work remotely between 10 to 20 hours per week, depending on my health flares. I have very lovely, supportive people around me, so I have a lot of room to try things out that I’m very grateful for, to put it mildly. And I have a pretty healthy group of friends and social opportunities despite my fatigue and everything, so definitely more on the moderate scale. I’m not housebound or bedbound or anything right now. I exercise, but I will feel the effects of it. So last night I went for a walk, and I did some lunges and stuff, and I definitely needed to rest after that. That was tough for me. But there are other times when I’ve done things that are more extreme, like I was able to go skiing this past winter, and I had to take breaks and do easier runs and do a lot of other stuff. But as I’m sure you’ve noticed, sometimes just the adrenaline and the excitement of doing something can get you through, and then afterward you pay for it.
Brianne: Yeah. And then for me, occasionally I don’t. And then I’m like,”Maybe I’m fine now.”
Rachel: Yeah, “Maybe I should do this all the time.”
Brianne: Yeah, “Maybe all those other times were a weird fluke and actually…” Yeah. Okay. But yes.
Rachel: I had that so many times before I got diagnosed, I remember even the day I had that first appointment with that internist in Indianapolis, I went shopping with my mom, or we went out to lunch or something, and I had had this sort of adrenaline-filled day that I honestly… it got to the point where I’d kind of convinced myself, “Maybe I’m not sick. Maybe all this was just kind of a fluke.” And I had so many instances of that that fall where I was just like, “Oh, no, no, no. This isn’t real. I’m not really sick. Oh, this can’t be happening to me. This is just a weird dream.”
Brianne: Yeah, “It was a weird dream.” That’s exactly what it feels like on occasional adrenaline.
Rachel: Yeah, exactly. So, as far as my current regimen, there are some fairly bland things that I do that actually have pretty amazing gains. ROI for having a routine is actually pretty high. So getting up roughly at the same time every day, going to bed at the same time every night is huge. I do not always do that. Frequently I get distracted doing frivolous shit on the internet.
Brianne: Sure.
Rachel: We all have our weaknesses.
Brianne: Yeah. But you know when you’re doing it, you can feel it.
Rachel: Yeah, absolutely. And today, for example, I got 10 hours of uninterrupted sleep, which was really great. Blackout curtains, living in a quiet area, turning my wifi off at night, I don’t keep my devices in my room. There are a lot of just lifestyle accommodations that everyone should be doing, in my opinion. That has been really helpful, and then on top of that, diet-wise, I tend to stick to a paleo diet. I eat vegetables with every meal. I don’t eat a lot of sugar, and I try to keep things balanced between healthy fats, proteins, et cetera. I still eat meat, and I try to eat organic high-quality stuff as much as possible, but I don’t eat processed food, and I pretty much cook all my own meals. I don’t really eat out. So that’s a big chunk of my energy and a big time commitment for me, but it’s paid dividends to know that I can eat good stuff all the time and try and make batches of stuff on the weekends so that I can eat throughout the week. Lunches are big salads without… oh, I forgot! So I’ve interacted with you on Twitter. I keep forgetting to bring this up, but your Twitter feed’s hilarious, by the way.
Brianne: Oh, thank you.
Rachel: Big fan. But yeah, basically eating in a consistent way with a lot of vegetables has been really helpful for me and trying to focus on limiting stuff, which in my case, gluten, dairy, and eggs, that aggravate me seems to be pretty helpful. It has not cured me, but I’m not getting worse, is basically how I see it. I read all the time, people are like, “Oh, the paleo diet cured my incurable disease.” And I’m like, “Good for you. Wasn’t the case with me.”
Brianne: Yeah. Cause I… that’s also basically how I eat, and I would say I’ve become much more flexible over time on the not feeling guilty if I decide to eat a gluten free cookie or whatever. Cause I used to be 100%, as I was following this stuff. And I don’t do that at all anymore, but it’s still like a template that really does make sense to me for my body, and it’s interesting trying to navigate that of like, “Okay, I don’t feel dogmatic about it. And I personally am kind of annoyed by this…” I do tweet about this all the time, but dogmatic paleo people… that annoys me at this point.
Rachel: Yeah, “How dare you eat a potato?”
Brianne: Yeah. Yeah. Like, “Stay away from all nightshades no matter what, everybody, and you’ll be healthy.”
Rachel: Oh my God. The nightshade thing, yeah.
Brianne: But for some people it works.
Rachel: Yeah, the autoimmune paleo thing is really interesting. I’ve never gone full bore on that. I don’t eat a lot of tomatoes to begin with, just because I don’t like them necessarily.
Brianne: Yeah, me too.
Rachel: But… which maybe my body hates them too. But I love bread, so I don’t know what to make of that.
Brianne: Hard to say.
Rachel: Yeah. The diet stuff… I try not to be… I try to get to a point at least where I feel like I’m not depriving myself, so I will occasionally eat a gluten free cookie. I also still drink alcohol, just not frequently, but I decided not to cut that out of my life, given that I’m being stricter in other areas. So for me it’s juse where I decided to be strict and where I decided to give myself a little bit more leniency.
Brianne: Yeah. Yeah. For me… because I didn’t drink for a long time, and now I don’t drink mostly, but I’ll drink on special occasions, and one of the reasons is, for me, with my body, it dulls the fatigue, and it dulls some of my pain. And I’m like, “Well, that’s definitely not a cure.” But if I’m at a wedding or if I’m at a family event, and I just want to be present, and I want to talk to people, and I know I’m going to have a terrible hangover the next day because I now get a hangover from one glass of wine, that’s a choice that I get to make. Instead of being like, “No, you have to never drink, or you’re not taking care of yourself.” That’s not actually the trade off.
Rachel: No. But alcohol is such a double edged sword. And it’s so funny that you bring that up cause I had that happen to me recently where I was at this sailing thing, and I had a drink or two of rum, and I normally don’t drink very much, so that affects me pretty quickly, but within 30 minutes, I feel invincible. I am on fire. I feel so energetic. I am just rapid fire. I think I’m being funny. I’m probably being an asshole. But yeah.
Brianne: Some of the stuff that you just expect from alcohol is happening.
Rachel: Yeah, exactly. But all of a sudden I don’t feel sick. I just… there’s no trailing fatigue with me, and I think, “This is amazing.” But the sort of weird impending doom of, “Wait, but I’m not going to feel like this forever, so at what point do I cut myself off and preemptively head in for the night and decided to be responsible rather than staying out with everybody else?”
Brianne: Yeah.
Rachel: I decided to be responsible, and it was just like, “Ugh, why? Why did I have to be a reasonable adult? Why cant’ I just do all the fun things all the time?” But yeah, alcohol has that effect on me, so I have to be careful because I ended up doing… if I do let myself drink, I will likely end up doing more than I would have if I had been sober. So… which means that the crash might be might be worse.
Brianne: Yeah.
Rachel: As far as supplements go, I take a ton of stuff, and I’ve experimented with all kinds of stuff over the years. To sleep, I take a liposomal melatonin spray. I take… as needed, I take a blend of L-theanine and GABA, and I use CBD oil, and that trifecta works really well for me. If I need extra help, I take Trazadone as needed. I do have a prescription for that. I used to be pretty much addicted to sleeping pills and tried everything, and then got to a point where I would get weirdly nostalgic after I took sleeping pills in that intervening period between falling asleep and taking the sleeping pill and I… basically high on sleeping pills, would text people. I emailed professors when I was in college, just high and the next morning had no recollection of any of this stuff. Like, “Oh my God, I can’t believe I did this.” Like, “This is a problem.” So that’s why I stopped.
Brianne: Yeah, that’s fair.
Rachel: The Trazadone doesn’t have that effect on me, so for people who have sleep disturbances, I think melatonin, if you can handle it, or Benadryl or something, but Trazadone is a great, just really benign sleeping pill for people.
Brianne: When you have a break through period when it’s not working?
Rachel: Yeah. And especially if you have a period of insomnia where you just have… sometimes I’ll get those five days in a row where I just can’t fall asleep.
Brianne: Yeah. And once the cycle starts, it’s so much harder to break the cycle. It… yeah. I have now had a couple of good months, but I think in February maybe I was in a really bad one. And it just takes over so much anxiety juice, too. Cause you know how important sleep is.
Rachel: Yeah, I was just about to ask you, do you get sleep anxiety? Cause I would get that all the time before I’d go to bed. I would start dreading like, “I’m not going to be able to fall asleep,” which makes everything worse.
Brianne: Yeah.
Rachel: Or, when I first got diagnosed, I had a lot of issues with my blood sugar, and I didn’t notice… know, that this was the issue at the time. But basically, if I ate anything that was high-glycemic or carbohydrate-laden at night, I would wake up the next morning between three and five in the morning, starving, usually sweaty and angry and irritable. And I had no idea… no one could figure it out, and then finally I had an integrative physician who gave me Metformin, so diabetes medication, and started off with a low dose and that eliminated it and then switched from that to a supplement. So chromium was really helpful, and I take this blend right now that has chromium and some other herbs in it, but basically taking supplements to help with my blood sugar has paid huge dividends cause I sleep better. I was able to cut the sugar cravings. I’d been… I never had much of a sweet tooth, but then all of a sudden when I got sick, I had all these ridiculous… could not stop eating cookies and brownies all the time.
Brianne: Yeah. Other stuff gets thrown off as you start to… however, that might work, but you start to compensate.
Rachel: Right.
Brianne: Yeah.
Rachel: So that was really weird. So that’s one supplement I… part of the problem with the wellness industrial complex as we have it now, is just, there’s a supplement for everything, and there are so many articles that are like “18 surprising benefits of this mushroom,” and everything’s positive, so you’re like, “Well, if I just take all of it, I’ll get better, right?”
Brianne: Yeah. And then you can never tell, you’re never like, “Oh, this one thing.” And sometimes even…
Rachel: It’s so hard to isolate variables. There’s no way to know.
Brianne: No, there’s really not cause I’ll sometimes be taking lots of supplements. Right now I’m not taking any supplements cause I just stopped for some reason. Something happened where I forgot to take them for two days, and then I didn’t notice a difference. So I just stopped. Yeah. But this kind of stuff happens all the time. Or the opposite, I’ll start taking one thing, I notice a big difference, then I’ll stick with it, but who knows? Because there’s so much coincidence involved, like sleep quality. Everything is a mess. That’s my perspective on trying to actually understand correlation between what you put in your body and what your body does.
Rachel: Oh it’s a complete crapshoot. It’s very difficult to understand what actually works and what doesn’t. And the genius who ever comes up with a really great symptom tracking and way to isolate these variables. I will be very grateful.
Brianne: Yeah.
Rachel: Maybe that’ll be SMA.
Brianne: That’s the goal.
Rachel: The other stuff I take… I mean, I do find adaptogenic herbs would be really helpful. So Rhodiola in the morning, and sometimes they’ll do ashwagandha at night, reishi mushrooms. I had this twitter thread that I posted cause the other night… a couple weeks ago, I’d been visiting my parents, I drove back to Wisconsin and then had to go to my friend’s birthday dinner. So I got home, and I still felt kinda hungry cause I hadn’t eaten very much that day while I’d been driving so I grabbed this granola bar thing that I had gotten at whole foods. It’s this Purely Elizabeth brand of granola bars. They’re very low sugar and higher fat, protein. This one had reishi mushroom in it though, so I just ate it and then tried to go to sleep and ended up staying awake till like 4:30 in the morning.
Brianne: Oh really?
Rachel: Oh my gosh. It was terrible. And you’re lying in bed. Like, “I’m too tired to do anything right now, but I can’t actually fall asleep, so I’m just going to panic for the next five hours about everything that’s going wrong in my life.”
Brianne: Yeah.
Rachel: Because that’s the most productive use of my time right now.
Brianne: Sure.
Rachel: And then when I eventually just give up and just acknowledge that the universe is clearly fucking with me and decided to put my headphones in and listen to the same Beatles song on repeat. Then I fall asleep. So I wake up the next morning and I’m like, “Well, I’m a little bit of vaguely aware of this mushroom thing. Maybe I should look into this and see. Oh cool. It is used for fatigue, so maybe I should take this in the morning when I would like to be awake.” So I’m actually trying that out right now. In an ideal world, I would be tracking my symptoms a little bit more carefully about how it’s affecting me, but right now I’m content to just sort of throw things at the problem and hope I get better. And once I’ve started feeling better eliminate, maybe.
Brianne: Yeah, I mean that makes as much sense as any other tactic to me.
Rachel: There is literally no strategy to any of this.
Brianne: Yeah. No, it’s all fine.
Rachel: It’s crazy. And then I do take thyroid medication, so I take a relatively low dose. And probably in addition to some of the other supplements so like vitamin D, magnesium, have been really important for me. I think most people in Northern climates can probably benefit from that stuff. It just depends on your lab work. I take thyroid medication. I take a small amount of progesterone in the second half of my cycle to even out my hormones, and then some other random supplement stuff that changes depending on how I’m doing probiotics and stuff. I’d say the critical things would be… there are a couple of antifungal supplements that I rotate, so neem and monolaurin, which is coconut derived. Those have been really helpful. My cystic acne cleared up amazingly after taking supplements like that.
Brianne: Antifungal stuff? Yeah. That is interesting.
Rachel: Yeah, I had a hard time with Diflucan and Nystatin, but the supplements seem to be working fairly well for me. And then some probiotics and stuff. I’ll drink tea throughout the day. I don’t drink coffee or anything. But then I’ve also started experimenting… I go to a clinic in Wisconsin that offers a lot of alternative treatments and energy-based medicine. So they have a device called Ondamed, they have another thing called the HOCATT, which is an ozone-based treatment. And some of that stuff has actually been really helpful. So since starting going there and addressing with their technology some of my chronic infection stuff, I’ve actually been able to decrease my thyroid medication quite a bit.
Brianne: That’s great.
Rachel: Which is pretty unusual.
Brianne: Yeah, absolutely. Great and mysterious, basically.
Rachel: Yes. I’ve also done neurofeedback, which is helped a lot with my brain. I still do have some issues with insomnia and stuff, and I’m not 100% better, but a lot better than I was a year ago, two years ago.
Brianne: Yeah. You can see a difference and that’s a huge… sleep just has a huge impact on everything. That’s my number one thing that impacts how I do day-to-day, for sure.
Rachel: Yes. And then as far as lifestyle stuff, pacing myself, if I’m being really diligent, giving myself a schedule for the day, and tracking how I use my time, even if it’s just, “I’m going to block out this period for deliberate rest rather than sort of aimlessly scrolling on my computer or phone for a couple of hours,” which I totally do. And it’s not the best use of my time or the best way for me to rest, and it happens, but ideally I give myself time to shut my eyes and listen to music or listen to a podcast. I call it nap-casting.
Brianne: Yeah, that’s great. It’s perfect.
Rachel: And if I have a specific thing that… I know I have a deadline for a work project or I have a sailing thing that I really want to go to, that tends to concentrate my mind. Even though there are a lot of things that I can’t control. If I can at least keep some of the stuff in my schedule from being completely chaotic, I can usually pull myself together in a way and get stuff done when I can and sort of rise to the occasion. That’s not always the case, but I’ve recovered to a point where I can, even if it takes a long time for me after the fact, I can get through stuff that’s difficult.
Brianne: Yeah, yeah, yeah. And that’s how it is for some people. Right now, for me, it mostly works that way too, and it hasn’t always, and it probably won’t always. But at the moment, I have two weddings coming up in the next month and…
Rachel: That’s so exciting!
Brianne: Yeah, and it feels attainable, like, “Okay, I’ll rest during the day and then I’ll go and I’ll have fun and then I’ll rest after and then I’ll plan on resting more when I get home, but it’s going to be great because I’m going to see a lot of people that I care about that I don’t see very often.” And as a trade-off, that’s how it works. But not everyone can do that all the time, and I don’t feel like my body’s always been up for that either.
Rachel: Right.
Brianne: Ugh, bodies. That’s all.
Rachel: So complicated.
Brianne: Yeah. Is there anything that we haven’t covered that was on your list of important stuff that you wanted to make sure that we got to?
Rachel: Yeah, I just looked at the clock and saw that we’ve been talking for two hours.
Brianne: This is what happens, man.
Rachel: This is just… I just have so many words to say. I can just share my brilliance with the world.
Brianne: No, mine was two hours. And then after I was like, “Oh, there’s so much that I didn’t say.”
Rachel: I know, right?
Brianne: Yeah.
Rachel: How are they gonna learn…
Brianne: Yeah.
Rachel: …without my brilliance and experience? Let’s see. I can send you stuff. I do have a list of relevant reading that I found really helpful. Music-wise Belle and Sebastian’s always great. “I’m so Tired” by The Beatles is my song on some days. Let’s see… the one thing, this is sort of a general conversation, but basically the balance of figuring out, “Am I ever going to be cured?” versus, “At what point… what constitutes acceptance? What is giving up or failure, and how do I make peace with my current state of health? How do I decide how much of my time, energy, money, whatever I’m going to devote to healing? What kind of resource allocation strategy is there? And when do I say, ‘You know what? This is just… this is it, and I’m going to step back from all this stuff and I’m not going to try and get to 80% or 100%. I’m just going to see how things are and scale back my ambitions.'”
Brianne: Yeah. Yeah.
Rachel: I don’t know what to do with those. That’s something that’s dogged me for years.
Brianne: Yeah. That’s an open question. Yeah. I would just say, that question resonates with me so much and I don’t have an answer either, and I feel like it can be cyclical. Sometimes I’m like, “Okay, I’m gonna devote…” not… 100% doesn’t really happen anymore, but, “80% of my resources,” in the broadest sense, right? Energy and time and money because it takes all three of those in different proportions to focus on healing, whatever that means. Yeah. Sometimes it’s like, “That makes complete sense.” And then sometimes it’s like, “I just can’t think about that right now because it makes me not feel like a person anymore.” It makes me feel like I’m a project, and feeling that way all the time is more disheartening than just accepting being sick sometimes.
Rachel: Yeah because there’s this temptation for me at least, to be like, “Well, I don’t have this all-consuming, passionate, work-life project or something. I’m not… this is not my Steve Jobs startup story life.” I don’t have something that’s consuming my entire attention span. So if I make my health my project, then I can just do that all the time, right? I’m going to be illness woman and come up with all these cool hashtags and stuff and just devote everything. And I’m such a dilettante that I’ve never actually had the focus to carry through with that kind of thing. But there are times when I’m like, “Well, because I’ve had this weird, unique experience. Do I monetize this somehow? Is there a way for me to sort of capitalize on my existential crises?”
Brianne: Yeah.
Rachel: “How do I make that work?”
Brianne: I don’t know. But I think it’s a good question because there’s a certain amount… maybe within the community of resentment for people who say create Instagram accounts that are just documenting their illness and creating like an illness soap opera, which I think is unfair. Cause I think if you’re that sick then finding a way to monetize that because you can’t work otherwise, why not? That’s great. And then there’s also the criticism of like, “Well now you’re making your illness your whole identity and don’t you want an identity outside of it?” And it’s like…
Rachel: The whole identity thing is so strange to me cause I’m just like, “I don’t know. I’m tired.”
Brianne: Yeah. Yeah. And I think that there are ways that you can over-identify with being sick. If it’s hurting your mental health more than it’s helping, sure. Develop some other interests if that feels good for you. But talking about your own experience isn’t the same as over-identifying with your experience, I don’t think. And that’s… yes, but I don’t know the answer for monetization, but I think it’s like… we should all need… it would be great if we could all figure it out, especially because work is so hard. If figuring out how to help people in this way, or talk about stuff in this way or whatever, and if that’s also kind of what your job is, then that shouldn’t be a bad thing. That should be a great thing.
Rachel: Well, that’s why the your episode with Hannah Olson was so amazing. It’s something I had thought about in the past, but I would always think, “Well, I don’t have the infrastructure to do that right now, so once I get better, that’ll be my project. I’ll create a nonprofit to match people with jobs.” And I was like, “Oh no, somebody already came up with that. That’s amazing.”
Brianne: It exists! It’s so exciting.
Rachel: It’s so cool.
Brianne: Yeah, I’m excited to watch them grow, for sure.
Rachel: Absolutely. Yeah. The whole question of like, “What is… is acceptance the same thing as resignation?” Cause I think that’s something that I had a really hard time with in college because I would go through my academic career and office hours as if when I graduate college, that I would magically be cured and working a full time job. So I never really prepared myself for what a flexible career would look like or finding accommodations for stuff because I always just assumed, “Well yeah, I’m super sick now, but I’m going to be healthy when I get to that point. So I don’t have to think about that.”
Brianne: Yeah.
Rachel: Cause if I adjust my life right now to my health, that means that I’ve given up in some way, which is not the case at all.
Brianne: No. But it 100% can feel like that. And not only does it feel like that, people will tell you that. People tell me that. They’re like, “Well don’t you want to keep… whatever? Stop saying that you’re going to need rest time after this trip six months from now because you might be better by then.”
Rachel: Yeah, “You need to have a more positive outlook.”
Brianne: Yeah. It’s like, “Do you think that this is helpful feedback for me? Do you think that I relish planning an extra six days of lie-down time after this trip? That’s not what it is. This is just called realism and advocating for your needs, but thank you.”
Rachel: But there’s so much tension between those two things because there are times when catastrophic thoughts come across your head as realistic and totally reasonable, and those are things that I’ve realized, it’s really valuable for me to have friends in my life who understand what I’m going through, but also remind me of what I’m capable of. Because there’s so many times when I think, “Oh, I can’t do everything I want to do, so therefore I can’t do anything.” And I have some people that are there to say, “You know what? No, you’re still an intelligent, reasonably articulate sort of put together person. You have assets basically. You don’t need to discount yourself entirely because you’re not working an 80 hour job or something,” and that there is some happy medium between the two because there are times when I definitely get into that head space of “Everything is awful. Nothing’s going my way.”
Brianne: Yeah. And, “I’m just going to not do anything.”
Rachel: Yeah.
Brianne: Yeah.
Rachel: But that balance is really hard because… it’s very difficult because you don’t want to be a pessimist. You want to have that optimistic outlook of, “Oh, everything’s going to be okay.” Like we’re in Candide or something.
Brianne: Yeah. Yeah. On the one hand, what’s the difference between acceptance and resignation? And then on the other hand, what’s the difference between optimism and denial?
Rachel: Right.
Brianne: For sure. If I’m just blindly putting everything in my schedule and just not planning any downtime because I don’t want to be a person who needs downtime that quickly can tip from being optimistic to being
Rachel: kind of self-loathing,
Brianne: actually.
Rachel: Yeah, right? I’m going to punish myself. I’m going to do everything and just see what happens.
Brianne: Yeah. So yes, I have no answers, but I think these are important conversations and important, just in terms of building language for talking to each other about it and then bringing other people into that conversation. That needs to happen all the time.
Rachel: Yes, and I will saythat’s been a benefit for me for doing therapy. So I had done cognitive behavioral therapy based programs in the past, and then I started meeting with this new therapist once I moved to Wisconsin and he’s like, “You know what? Actually given your situation with your chronic illness, there’s this other thing called acceptance and commitment therapy that’s a better fit for you.” And it’s based off of research on people with chronic pain and saying, “Look, you have this inescapable situation in your life. We’re not going to try and deny that because that’s not what this is about. But rather, how can you go on living your life in a way that your symptoms don’t dictate everything, that you can still feel like you have some control over your life, that you can still achieve what’s really important to you despite the fact that you have stuff that isn’t going your way?” And I found that to be a really helpful lens to look through because at least for me, I’m moderately functioning. It’s not the same for people who are much more severely suffering with this, but there are things that I can’t do. I’m not completely incapacitated, even though I still struggle with my energy levels, and I have to keep a focus on what is truly important to me. What are my priorities? And then navigating backward from that to see, “Okay, so. Yeah, I am tired today.” And there are times when I can push through that fatigue and get stuff done and other times when I’m going to let my body rest, and both of those things are okay.
Brianne: Yeah, yeah. The working backwards I think becomes really important. I was like, “If it’s not going to happen the way that I would have wanted it to, or would have otherwise planned for it to happen, then what else can I do? Or what else does that look like?”
Rachel: Yeah.
Brianne: Which I guess is accommodations and adaptations.
Rachel: Absolutely. And then if I do decide to do something that might be kind of challenging, go fucking enjoy it and don’t be so… it’s easier said than done, obviously, but understand that I made this commitment to do something, and I’m going to enjoy this difficult thing. Even if it might make me tired afterward, I’ll deal with that later, but I don’t have to have this preemptive anxiety/worriness. When you start doing the worst case scenario before the event has even happened, just because you’re anticipating something terrible, and let that ruin the enjoyment of something really fun.
Brianne: Yeah. I just relate to that with no further commentary. Yeah.
Rachel: I’m glad I’m not alone.
Brianne: Yeah. Oh, it’s real. Awesome.
Rachel: Do you have any other questions for me?
Brianne: No, I don’t think so.
Rachel: Is there’s anything I can do to help you?
Brianne: No, this is good. Thank you.
[guitar riff]
Thank you for listening to episode 45 of No End In Sight!
You can find Rachel on twitter @cfsanity and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I’ve been posting each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – as you know. But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a woman with POTS and fibromyalgia who has done graduate-level research into live with chronic illness, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.