8a – Adam

Adam talks immune dysfunction, shame, and thinking it’s all in your head.

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

Before we jump into the episode, I want to say a big thank you to honeylemon005 who wrote “This is a much needed and appreciated podcast. Thank you for hosting such encouraging and enlightening interviews with other folks with chronic illnesses!”

I saw this a week ago when I was uploading the last episode, and it completely swells my heart. So thank you!

Today I’m talking to Adam in an interview that I’ve been privately calling Adam’s Wild Ride. Adam has a dysfunctional immune system that has created heart problems, nerve problems, and a whole lot of discomfort. We ended up talking for a long time after the end of the official interview, and I’m going to release that next week as a shorter bonus episode, instead of trying to get a full one together over Thanksgiving.

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]

Adam: I’ve often thought during this whole process, my biggest regret is nothing medical. I wish I had just carried around a tape recorder the whole time, you know what I mean? I wish I’d worn a body cam through my whole experience, it would’ve made the greatest documentary in history.

Brianne: Yeah, just documenting. And it’s amazing to me from my experiences, how quickly our brains forget the worst parts. I had a lot of difficulty walking when I was really sick, and I should have been even videoing that because saying it doesn’t convey what it was like. We don’t have language that really expresses it.

Adam: Yeah. It really is funny to think about how many times I didn’t say what I wanted to say. I think of myself as somebody who doesn’t have trouble doing that, and how many times I’ve been angry after doctors appointments. Anyway. So I guess how do you usually do this?

Brianne: So I usually just ask, were you healthy as a kid?

Adam: That’s a good question.

Brianne: Thank you!

Adam: A good opener. Yeah. It’s funny, a part of me… I don’t know if you’ve had this experience, but there’s definitely a little bit of past idealization that goes on. So my instant gut is like, “Yeah, that’s what I’m trying to get back to!” Right, how I used to feel before sick. But that’s not true, right? Like there’s always something. I guess canonically, the very first ever initial answer to that is: no, my mom had double pneumonia when she was pregnant with me. And she always used to tell this story that no doctor would treat her because they were afraid if they endangered the pregnancy in any way they’d be in trouble. And so this doctor I had for most of my childhood… I don’t know, is there name dropping rules? Can I say doctors’ names? I wondered about this.

Brianne: I don’t actually know. So far it’s only really come up when people are talking about doctors who have written books or are kind of on that celebrity doctor level for one illness. But if it’s an individual person, maybe we’ll just stick with doctor, but if it happens, I wouldn’t be super worried.

Adam: Sure, I had this childhood doctor and the reason he was the family doctor or… I’m not sure which way the causality goes here, but either way, he was the one that agreed to treat my mom, so everybody said, “Oh, he saved your life!” So when I was born, he immediately put me on preventative antibiotics. So my mom was on antibiotics for, I guess, double pneumonia or… I guess antibiotics, it’s not not antiretroviral. I was thinking flu. But she was on some kind of antibiotics, and when I was born, they put me on them to, which is something I’ve thought about in the past, right? Especially now that gut bacteria is such a big thing, and passing from the mother to the child. I’m sure you’ve been well down every path, but that’s certainly something I’ve just thought about incidentally over the course of this. But throughout most of my childhood, I guess I’d consider myself a normal amount of sick. But, I had all sorts of little… I was always going to the nurse’s office when I was a little kid and they thought I was making it up. And then eventually, they found out I was lactose intolerant. My parents felt super guilty, and I didn’t really care about it. But yeah, my whole doctor life experience started early, right? Like people didn’t believe me and I was sick. And then, yeah, the lactose intolerance test is really pleasant. They make you drink lactose and then blow into a straw.

Brianne: Ugh.

Adam: Yeah it’s a weird test. So yeah, I guess I had stomach issues when I was a kid and nobody really believed me. And then I got my very first generic diagnosis, which is IBS, which is basically, “We don’t know what’s wrong with you, so here’s a name!”

Brianne: Yeah, if it has “syndrome” in it, it’s always a little bit… I get a little bit skeptical. You really are sick, but the doctors just want to tell you that it’s something.

Adam: Yeah. It’s hard to explain this to people too right, because I forget how much time I’ve spent thinking about illnesses compared to the average person. And I’ve heard heard people tell me, “Oh yeah, I have chronic fatigue syndrome.” And there’s a diagnosis there, right? There’s a whole constellation of symptoms, and you can differential towards it, but it’s still nothing. And people tell me that really earnestly like, “Maybe you have it too.” And I’m like, “Yeah, I’ve received that diagnosis, that’s a symptom.” Anyway, yeah. And I had strep a lot, which when I was a kid, everybody gets strep. But it comes back later in the story like that becomes interesting later. Yeah, I felt healthy, but I think driven by either just normal levels of anxiety for a kid like me, or because nobody believed me when I was really little, I was a total hypochondriac when I was in high school. Which was funny because what ends up happening is… what’s that saying? “Just because you’re paranoid doesn’t mean you’re not being followed.” That’s always in the back of your mind, right? I used to tell people that hypochondria is in a way a fear of irony. You’re afraid that the second you stop worrying that’s going to be when you get really sick, which is really hard to explain to people.

Brianne: Yeah, like if you’re not watching every symptom all the time, then you won’t notice how it changes. Because we’re so bad at remembering that kind of relative symptom difficulty. That’s how I would hear that.

Adam: Yeah, precisely. So I guess most of my childhood, I want to say it was normal, but who knows?

Brianne: Sure. It’s impossible to know. And then so that kind of comes through high school. It sounds like in high school you think you also had some hypochondria, perhaps anxiety going on? Is there a moment when things start to change, or not for a while?

Adam: Yeah. No. So the the story has a… it’s starts, you know what I mean? It has a beginning. So I go to college and it was super great freshman year, sophomore year, I felt really good. Thinking back, I don’t remember feeling anything weird. And I actually feel like during those years, I definitely got over some of that high school anxiety hypochondria stuff. And then that’s when things started getting a little bit weird. So my junior year… and I studied abroad freshman year also, like freshman summer. So I had some reason to believe that this wasn’t anxiety based. But halfway through my junior year, I had this really weird symptom pop up out of nowhere. And at this time also I’m still seeing that same doctor. So I’m still seeing this doctor for my whole life, my childhood doctor. And this guy’s supposed to be one of the best, like many doctors he has a million awards. But he’s very he’s old school. Like, he knows what’s wrong with you and if you don’t agree with him, you’re an idiot. And so, I started getting this really severe pain, in my inner hip joint kind of groin area. And I know this is super riveting podcast material.

Brianne: No, this is what they’re all like, they’re meant to be like this.

Adam: It was really severe pain and it felt like… now with my whole encyclopedia of knowledge of different types of pain, this was more of a joint pain. In my mind, it was this mystery stabbing pain in my leg, but now I guess that feels like in the inner joint area something’s getting irritated. But it was pretty severe. In most of my life other than stomach pain, everything’s been going pretty great. And this is to the point where when I’m walking, I’m really struggling and it doesn’t seem to have any cause that I can identify. It’s just this weird symptom that’s coming out of nowhere, and it felt super ominous.

Brianne: Yeah!

Adam: Yeah, yeah, obviously right? It wasn’t just like, “Ow, I bruised myself.” It was like, “What is this?” And I think that obviously the anxiety there was compounded a little bit by the fact that I was about to go to Denmark for six months.

Brianne: Perfect.

Adam: I go to my doctor. He gives me the same old, “It seems like your leg hurts. It doesn’t seem like anything is wrong here.” And this is the first time in my life that I become aware of lymph nodes, because he said, “Yeah, the lymph nodes are slightly swollen, but nothing I would worry about at all.” And then obviously I’m like, “What is that?” And I’m a relentless researcher. Okay interesting. Pretty weird. Him giving me that tidbit was probably a mistake if he remembered by personality and all. At some point I did have a cat scan of the leg because I think they wanted to check if I had some kind of ligament damage or anything like that.

Brianne: If there was something obvious to them.

Adam: Right. And of course, it was unremarkable like so many tests. Nothing comes back and he said, “You know, the lymph nodes are inflamed, whatever, don’t worry about it.” So eventually I do head off to Denmark. I’m pretty worried about this. This is ten years ago so it’s hard to remember, but I was worried. I remember leaving worried about it.

Brianne: And it was pretty constant? Or like, all the time?

Adam: Yeah, it was…

Brianne: Just walking was awful?

Adam: Well, you get to that point, I’m sure you’ve had this experience, too. I don’t know what your history is medically, but once you notice something’s wrong, it changes your entire demeanor, which can make things more wrong. So maybe I was walking weird, and that was making it worse. But the way I remember this is I remember things I was doing that hurt. Like I went to a broadway show with my girlfriend and I was sitting there just like, “Oh my god, my leg hurts so much!” She said, “Are you okay?” And I said, “Yeah, it’s, just my leg!” SoI have these flashes, but I don’t know the details. But it’s kind of hard, I remember them as episodes. And I head off to Denmark and I’m there for six months. Over the first month that kind of starts to go away, but I started getting this kind constant throat ache. I just started getting a cold. Okay, I’m in Denmark, there’s four hours of sunlight a day, I have a cold. This isn’t that weird, seems pretty normal.

But at a certain point, it starts to get more streppy. My throat really hurts. Swallowing hurts. I feel feverish. I’m dizzy. That kind of thing. I go to a Danish doctor, healthcare’s free. I go to a Danish doctor and he gives me this super condescending… in English, everybody in Denmark speaks English for the most part in major cities. And he gives me this really condescending, like the difference between a virus and bacteria and telling me why I don’t need antibiotics. And I guess maybe to him, I was an American. Like, “Oh, these Americans misusing their antibiotics!” But I’m trying to level with this guy and prove my credibility. And I said, “No, I know. And I know what it feels like to have strep. Is there a rapid strep test around here, something you could just poke me with or something?” And he just said, “I want you to go home and just get some tea…” And I don’t know if you’ve had this experience, but at this point in my medical life, for whatever reason, I just did not push back very hard. This whole trip, whenever I think back to this period, I’m just like, “Why didn’t I? Why wasn’t I more aggressive about this?” I should have gone back. I could’ve easily gone back and I just didn’t. I don’t know why, but I didn’t.

Brianne: I definitely have. And just for me, when I think about that, I think it’s partly context for me. Like there was a time when I was going to walk-in clinics all the time with kind of vague fatigue and discomfort complaints. And I had no idea that there were things that it could be. So sure, I could have been a better advocate for myself, but I just didn’t have any questions. And when you’re repeating over and over again, “Okay, but I don’t think this is normal.” That doesn’t mean anything. And that’s really hard to say. That was my experience of it.

Adam: Yeah. It’s really hard to capture that I know something’s wrong. Because so many people know something’s wrong. And with most people who know something’s wrong, probably nothing’s wrong. One thing over the years that I started to get was… I feel like I never came around to, “All doctors are wrong, all patients are right!” I was like, “Look, doctor, like 99.9% of the time you would be right, but I’ve finally collected enough evidence to show that I’m right.” So I never went back to the doctor. I did have this funny experience where pharmacies work differently there. So I went to the pharmacy and I had this really weird exchange with the one guy working there. I remembered that in some countries you could buy antibiotics over the counter, and for some reason I didn’t just look it up. I just went to the clinic, and I was like, “Can I buy an antibiotic?” And you could consult a pharmacist in a private booth, it was like seeing a doctor, so it was like a walk-in clinic kind of thing. And he was like, “Well, we have an antiseptic.” And in my mind, I’m thinking this guy must just be mistranslating. Like, antiseptic kills bacteria, there’s a mistranslation thing happening. And he gives me a little roll of the equivalent of… they’re kind of a sucking candy thing.

Brianne: Rolaid?

Adam: Yeah, kind of. And I’m like, “What is this?” And he says it’s an antiseptic. Okay, sure. So I get them and I go on the bus and I pop one out. This is a sucking candy, it’s probably a throat lozenge or whatever. I don’t know what the heck he was talking about. And I take one, and I realized what he was trying to say was an anesthetic, because my whole mouth went numb. So that was a fun experience. And I didn’t use any more of those. And it really didn’t help, it was super unpleasant. But after that, I kind gave up a little bit and I spent the rest of the trip just… streppy. But the weird part about it is I got into this very strange kind of defeated headspace. There were points in that trip where I was pretty sick. I traveled around Europe like that. There were points when I was on the verge of passing out, states that I would never allow myself to be in when not in a hospital today. Like, I’m standing with my friend and my lips are numb. And I’m just like, “What’s going on?” I’ve become much more sensitive to that kind of feeling, but during this period one of the things I learned to look for from my doctor was the lymph nodes in my neck. And I could physically feel them, and I know I’m skinny, but you’re not supposed to feel them. And that really started to stick in my head. At some point during my travels, I ran into a friend of mine who I went to college with who had been given prophylactic antibiotics for wisdom tooth surgery, and I black-market bought her antibiotics from her and I took them.

Brianne: Great.

Adam: Yeah, of course, right. Like would this be an adventurous medical story without black market drugs? And I took those, and I guess I felt a little better. But by this point, I had been so crummy feeling that I hadn’t been eating and I was in this terrible state. I lost weight and I don’t have a lot of weight to lose. And at some point during this trip, I just totally anxiety triggered. I was literally calling my doctor back in the States, “I’m really sick, I can’t get medicine here, my lymph nodes are swollen, my throat hurts.” And it’s the same doctor that I had since childhood, and he’s just giving me, “You’re really, really out of control.” And maybe I was, but he was just like, “This is ridiculous. Where are you?” And I said Barcelona. And he’s like, “Go have fun.” And then he hung up on me.

Brianne: Yeah, like, “Just calm down. Try it”

Adam: Yeah, exactly. Yeah, like, “Relax.” And so it’s funny, another weird thing about this whole story is that I did do a lot in this state, which was super strange source of doubt for me. This kind of stayed with me the whole time, like if I can force myself to do all these things, to what degree is this in my head?

Brianne: Like it must not be that bad if I can still whatever, walk.

Adam: Right. Exactly. And I would find out later, much later, all these things about how it turns out that my dad’s side of the family has a history of mental illness. Like depression and anxiety to a severe degree, like people being hospitalized and stuff like that. And so the direction that he’s coming at it from in his head, and he’s not a very talkative guy, but for him it’s like, “I’ve been there. I thought I was dying, and so did my father.” And to him, it’s this thing in the male lineage that happens to all of us. And he’s just trying to talk me out of it and obviously, my mother is probably dying of anxiety, because she believed me, right? Like, of course. But I managed to make it through this trip, and I get home and I feel like garbage in the most general way. And my mom doesn’t say anything, but she later said, “Yeah, you were so gaunt and thin.” And I think that was just by virtue of the fact that I hadn’t been eating much because, you know…

Brianne: Eating felt terrible.

Adam: Exactly. But this kind of is where I can start my doctor circuit, so now I can finally see a doctor. And I obviously go immediately back to that one doctor that I’ve been seeing since childhood who saved my mom’s life, and he’s obviously the one who’s going to figure this out. And he’s super not having it. He’s just like, “You have always been anxious. I remember from high school, you’ve always been like this. That thing on your leg, that went away. This is just a thing for you.” And I can’t remember, I don’t know whether… so he did feel the lymph nodes on my neck and they didn’t go down. And eventually I was kind of rotating between him and another doctor that was related to my mother’s doctor somewhere else near our home. And through enough hemming and hawing eventually one of them said, “Look, I’ll send you to a head and neck surgeon these guys see lymphoma all day, every day. This guy could look at you and tell you if you have lymphoma, basically. Just see this guy, it’ll put your mind to rest.”

I go see this doctor, head and neck surgeon, he feels it, he seems like a credible guy like, he definitely sees a lot of cases that aren’t lymphoma also. And his take is basically, “They’re pretty small, I don’t think it’s anything. Let’s follow it for x months and come back and talk to me.” I schedule a follow-up. During this intervening time I am going to college, or there’s a summer break and I’m going to college, and I’m just tired all the time. But compared to later years, I still look back at this like: you were pretty normal, things were pretty fine. And it’s so hard to know if that’s rose-tinted glasses, right? Like, how was I feeling? I’ll never know again, right? I can’t get that information back. But I see him after x months, and I’m like, “Look, I know that you think this is fine. I’ve literally subscribed to chronic lymphocytic leukemia forums. I need you to take a fine needle aspiration, if for no other reason than I’m going to lose my mind. I cannot live until you do something about this.” And he sees what’s up, so he says yes. In his mind, it’s like there is no reason not to do this, this kid’s gonna lose it, fine.

Brianne: It’s a preventative test at this point.

Adam: Exactly, he’s just like, “Yeah, you know what, they’re enlarged, whatever. It’s a simple test, low danger.” He takes the aspiration. I can’t remember how long I waited for this. This part doesn’t really stand out in my mind, but there was a finding, finally. Finally, some kind of finding. I had a proliferation of small cell lymphocytes. My take on it was, “Ha! Smoking gun! Finally, I told you, everybody’s wrong, I am dying. Pow pow pow!” To him, he’s like, “Okay, not good. It’s really not that serious of a finding but we’re going to want to take them out at some point, the lymph nodes in your neck.” And the way I took it was that these are coming out tomorrow. My memory of what he actually said, I really think his take on this was that we shouldn’t just leave it. I should have surgery to remove this at some point. They don’t seem to be growing very quickly, don’t worry about it. But I really was like, “This is my super bowl, we need to get these out of my body immediately.”

Brianne: And did you think this was the whole problem? Or did you hope that that was causing everything and so that surgery would also be the answer to everything? Do you remember?

Adam: Yeah, I do. So I have so much more context now. But back then… it’s funny. Even retelling this, I realize it’s so hard to tell the details in order. I felt it in my throat. And so, so much of this process was doctors telling me, “Yeah, you’re feeling anxiety. You have a lump in your throat because you’re anxious.” And I was like, “No, I can feel the lymph nodes.” And I don’t think that was true, but there was definitely a part of this that was literally a pressing matter. I literally felt it every moment that I was awake. I was aware that they were there. And whether that was some kind of psychosomatic thing or not, I’ll never know, right? And so him saying this… if nothing else, if no other problem would be resolved by this, even if I felt relatively okay, to me this was like there might be cancer in your neck and you know it’s there because you feel it every second of every day.

Brianne: You can’t not think about it.

Adam: Yeah, let’s get it out. Like what other option is there other than doing this immediately? So I scheduled with him to have it out relatively quickly. It’s an outpatient procedure. Apparently, this dude is the Michael Jordan of neck surgery. Everybody for years afterwards, people would say, “Wow, you had surgery? I can’t even see the scar.” And I remember waking up, and I don’t know what your surgical history is like, but it’s always a comic episode. I remember I was like, “Where are my glasses?!” And they’re like “They’re on your face.” And they were like, “You have to drink water.” And I was really angry about drinking water and finally the doctor comes in and he’s like, “Alright, I’m going to tell you how it went.” And apparently he told me, and I totally forgot. And I asked my mom later, “When do I see the doctor?” And she said, “You just spoke to him.” So I literally never got to speak to him.

Brianne: In your right mind.

Adam: Yeah, I never got my post surgery talk, which, is pretty funny. But apparently he was in there, and I guess he was just like, “You know what, there’s a bunch of lymph nodes in here.” So they took out four. He didn’t even take out one, he was just like “Yeah, I’m here, I might as well.” I’ll never know what his post surgery talk was, but I don’t know if it was because he thought, “This one’s suspicious, so I’d better take them all.” Or if it was more like, “They’re so close that I should take them all.” Or if it didn’t matter. Either way, they take them out. So, it’s supposed to be a pretty quick recovery. After about a week, I actually went back to college, I had some kind of complication that I will maintain was an infection. Even that the doctor wouldn’t… I called him and said “It’s day ten and I can’t swallow, what do I do?” And he’s said, “I don’t think I have an infection.” So I’m like, “Look man, I’m currently failing to eat soup. What are you going to do about this?” So he prescribed an antibiotic. I rode a bike like 15 minutes in the pouring rain to pick up this antibiotic, it was very dramatic. And I took it and I got better, as one is wont to do on an antibiotic when you have an infection. So, maybe.

Then for whatever reason, the results took two and a half months. It was not the amount of time a biopsy takes, and this was agonising. Literally. Because I don’t want to call him every day. I can’t. I’m calling him every other week and they keep saying, “No results yet, we will get back to you.” And his office is sick of hearing from me. Finally, after two and a half months, he calls back and as if this was nothing to me, he says “This whole thing is totally benign. There is a proliferation of small cells, and there was a viral reactive process.” Reactive process,that’s like the codeword for nothing. “reactive process. Benign hyperplasia. It’s just a thing with lymph nodes, don’t worry about it.”

Brianne: Like, “Many medical words.”

Adam: Yeah right, exactly. It just describes what is literally happening. There were cells dividing, and they weren’t ones we’re worried about, so, cool. And in the moment, I felt good. I went inside and I cracked a beer. I remember very specifically that was my response. I went to the living room where my roommates were and I cracked a beer and I sat down and said, “I’m not going to die!” And it dawned on me how much this wasn’t a thing for them. They were just like, “What?!” And I’m like, “Uh, nothing, whatever.” They were not aware of this at all.

Brianne: They weren’t wondering every day if you had cancer.

Adam: And I struggle to remember what I shared. And another interesting thing was after the healing process the lump was gone. And so, I don’t know how much this is like the end of Fight Club, where I excised the mental lump also. You know what I mean? But from there is when things… that’s the now let us begin moment. So over the next year or so, which I spent at college, more weird stuff happened. So first, I started having issues with my vision. And I couldn’t describe it to eye doctors. I would say, “I can’t focus.” And they would ask, “What do you mean? Is it like taking your glasses off?” But no, my eyes just don’t… I can’t look at stuff. And this comes up so much, where you just don’t have the words to describe. Like, I’m looking at something, but my eyes don’t agree on where it is? I’m trying all these inventive ways of describing it, and they’re just like, “Yeah, whatever, don’t worry about it.”

At some point during this period I also get for the first and as far as I’m aware, the only, time in my life, a tick bite. So I went to school upstate. I went to Vassar, it’s right in the middle of lyme country. So when you get a tick bite… I pulled it off, I went to the medical center and their response is because lyme is so prevalent, they put you on preventative doxy. So I’m put on this insane antibiotic for I guess it would have been two weeks, a two-week preventative course of really heavy antibiotics.

Brianne: So they don’t even test the ticks there?

Adam: No, no, it’s presumed that you probably got lyme. So if you come in with a tick bite, you walk out with antibiotics.

Brianne: I do live in New England.

Adam: Oh okay, yeah. So I took these antibiotics. This comes back later too. And then, I hadn’t thought about talking about, this is awkward to talk about but whatever… podcast. So at a certain point, I couldn’t tell if this was the result of, because antibiotics can kind of wreak havoc on your stomach and on your urinary tract and stuff like that. I started having this really weird problem where I just wasn’t peeing right. I was just, this is not…

Brianne: It’s not what it did before.

Adam: Yeah exactly, I have to go all the time, and I’m not going, and I feel like I’m a 70-year-old man. This is not… something’s up.

Brianne: Like high urgency, low volume?

Adam: Exactly, yeah. Just this is not working out. I go to the doctor, these are super great things to talk to your doctor about. Obviously very easy to accurately describe, and of course they’re always so respectful. So I had a variety of men’s tests, as it were. And basically he said, “Yeah, maybe your prostate’s a little swollen, but you seem totally normal.” This didn’t go away for about a month, at which point I’m starting to get a little concerned. And I go back, this time I see a urologist and they’re basically like, “Actually in men your age prostate infections are pretty common.” Which I’ve never been able to validate her invalidate but it sounded like baloney to me. I accepted it at face value. I could google this right now. But his response to that was apparently it’s low blood flow area of your body. So for not the first time in my life, I heard, “You need to go on a really intense course of antibiotics.” And gosh, I don’t even remember at this point if it was doxy again or something in that family of second or third string antibiotics, but it was the hard stuff, they put me on something super intense. It really was killing my stomach. Not enjoyable to be on. Obviously, this is another thing I think about years later, is this period of intense antibiotics actually the problem, and it had nothing to do with anything else?

But I take the antibiotics. They don’t help immediately. Over the course of the next six months, it improves gradually. So this is this random, arbitrary period of what the heck was this? Nobody knows. Took an antibiotic, maybe it helped. From that period, kind of heading towards and after graduation, I was vaguely exploring the tiredness thing, and I was vaguely exploring the vision thing. But for the most part I was just living uncomfortably in this super vague way that didn’t really… is very difficult to communicate to people.

Brianne: And kind of better than it had been before the surgery, would you say, or do you think it was back at the same level? It’s a relativity problem?

Adam: So this period’s particularly hard to remember because there’s another punctuation point when things got super bad, and so from there is when I know that things were messed up permanently. So at this point, I recall having issues with fatigue, but it was nowhere near where I would eventually go. I do remember having very generic workups, obviously I’m getting tested for mono over and over again. And at this point, this is when one of my doctors, because at this point I’m literally already juggling doctors, because I’m not getting anyone to take me seriously. This is when I get the first weird thing which is my doctor said, “Hey, your platelet count is kind of low, it’s not below normal, but it’s borderline and it didn’t used to be like that.” We know that because I had blood tests going back my whole childhood and suddenly I went from a relatively high platelet count person to a relatively low platelet count person, and also my baseline white blood count was still normal but had just changed. So something… my humors were off, my serum had changed. And this doctor was kind of like, “Okay, interesting. Let’s follow the platelet count because that one’s kind of really getting close to being low, but I’m not super worried about it in general.”

So, at some point because I’m working on computers all day, my vision started to really freak me out. And I got basically the million-dollar workup. I had appointments at the New York Eye and Ear Infirmary, which is gold standard. They gave me this incredible series of tests, just the latest technology, they’re blasting lasers in my eyes, they show me these flashing pattern tests, nothing’s really showing up. And at this point I’m seeing opthoneurologists or neuro-ophthalmologists, rather. I saw it two. I saw one who’s like this research doctor who is an incredibly talented doctor. She doesn’t even see patients, she’s got some physical disabilities and she made an exception I guess, because she knew someone in my family. And her finding, her very minor finding was that I had very slight differences in pupillary response. So, one side was a little slower. But she said, “Borderline, like I can’t even tell. I almost can’t even perceive it, it may be nothing.” There was this one very interesting moment. So, like I said, she had a physical disability, so she had a nurse actually kind of performing the procedure while she kind of looked on. And at one point, she’s watching very closely as the nurse is going back and forth between my eyes and she gets right up in my face and she just puts the back of her hand on both sides of my face. The doctor does. She’s not doing any of this, but she reaches up and touches my face, and she says “You don’t sweat on this side of your face.” And I was like, “What?” She said, “The temperature is different on both sides your face, you don’t sweat on this side.” And I was like, “Okay… does that tell you something?” And at this point, she said, “Well yeah, you should… just in case, I don’t think this is it, but you should get a brain scan, you should get a cat scan, just to check there’s no tumors or anything.” And I was like, “Okay, cool.”

Brianne: Great, real casual.

Adam: Yeah, it is. And the funny thing about it, I’ll never forget this. Because this woman, really was someone who’s clearly struggled in her life, and she looked me right in the eye after she said that and she was like, “I’m not worried, because bad things don’t happen to good people.” And it was one of the most powerful moments. It was really like a movie moment, and I’m just looking at this woman who’s struggled so much with this severe disability and in utter disbelief. But this path doesn’t go anywhere. I get the scan, it’s normal. But that really stuck with me. Another hypothesis she had later after the scan was normal was that there was nerve damage from the surgery. She thought perhaps one of my cranial nerves was damaged, which caused sweating problems on one side and maybe somehow affected my eyes. But nothing really came out of that. So I’m having this fun random doctor adventure. At this point I’m working, I’m in advertising, I’m traveling around doing a sales engineering job. So lots of traveling to different cities and it’s just becoming increasingly a slog. I’m pushing myself to do this stuff and starting to feel more like I did when traveling around Europe. Where I would never travel feeling like I felt those days, today. Knowing these things about myself.

Brianne: And did you have pain? Like where would you describe… mostly generalized fatigue? What did that look like?

Adam: It’s the word that doctors use, malaise. Like I knew something was wrong, I just didn’t feel well. Like I wasn’t yawning, right? It wasn’t like tiredness. It was this kind of heaviness, almost.

Brianne: Yeah, it’s a body tired.

Adam: And my eyes started getting even weirder. I started having… I couldn’t look at patterns. If I looked at a patterned carpet… and at this point, I don’t know if I have anything or what the deal is. I’m not all consumed, but all these new symptoms just trigger thoughts in me like, maybe I’m having seizures of some sort, who knows what’s going on? And it’s at this point I realize I literally can’t look at patterned surfaces. The best way I can describe it is that patterns move. When I would look at a carpet, it was moving. And it was like a sensation of someone rubbing two pieces of foam together. And you tell a doctor that and they think you’re a lunatic. I’m just like, “Look, patterns are hard to look at. It’s uncomfortable physically.” And they’re just like, “Yeah, it sounds like anxiety or something. I don’t know, don’t look at patterns.”

Brianne: “Sounds like you really hate patterns.”

Adam: Yeah, exactly. So this is when the pedal really hits the metal. I’m living at this point uptown right across from Columbia Presbyterian. I wake up one day in terrible physical pain, like my whole body hurts. And it’s not pain like crying out, it’s not like I’ve been stabbed. It’s like the deepest ache I’ve ever felt. It was almost unbearable, but not in a way… I don’t know if you’ve ever broken a bone or something, it’s not unbearable in that immediate I’m screaming way. It was just like, you need to just hug every part of yourself. And my first thought, because I’ve never been this sick in my life, my first thought is, “I guess I have the flu.” My whole body hurts. So I spend the day in bed. I don’t do anything. I could barely physically get to the shower, which that was kind of something that I remember thinking, “That’s not normal.” I almost couldn’t walk there and I thought that was weird. But I don’t do anything about it. The next day I wake up, same condition. I let it go on another day. The third day I’m sitting on my couch, and I’m like, “If I don’t go to the doctor, I’m worried I won’t be able to go.”

Brianne: Okay, and did you live alone?

Adam: I had a roommate who I believe wasn’t around. She was a film editor and she was working weird hours, so she wasn’t around during this. I didn’t see her this whole time. I guess probably that was when she was working the night shift, so she could have been coming back when I was in bed. And my parents were out of town. Normally, I would’ve just called them and told them I’m feeling sick. But they were in Florida. So on the third day I get some stuff together and I go to not Columbia Presbyterian, but there’s an associated walk-in clinic. So I don’t go to the ER, I go to the walk-in. And I walk in and give them the basic rundown, “I feel absolutely horrible, my whole body hurts.” I see a doctor and I remember specifically, the doctor seeing me was maybe a student. So there was an actual doctor there listening, and then I was being interviewed by a very nervous student. And he was giving me mostly an appendicitis workup. He’s poking around my stomach, giving me an under-the-rib thing and he’s like, “Is this hurting?” And I said, “No, it doesn’t hurt more or less. My whole body is in terrible pain right now. You’re not… everything hurts, that doesn’t hurt more or less.” And I’m a little frustrated. So he leaves the room and consults with the senior doctor, and they talk for a little bit. They come and do an EKG. I didn’t find out until later that there were some anomalies on the EKG, but minor, so borderline normal basically. The younger doctor comes back in and he says, “Look, we don’t see anything wrong. You have a minor fever.” For me, that was kind of a red flag because I don’t really get fevers, not since I was very young. So I’m like that’s a big deal, but go on. So he said, “But because there is a small chance that this could be a really weird presentation of appendicitis, were sending you to the ER just in case.” And I’m in such bad shape that I think that sounds great. Just send me to wherever.

Brianne: Somewhere that people bring me the things that I need.

Adam: Yeah, exactly. So they sent me over to the ER. I was under some disillusion that I would be seen quickly because they sent me over in a state of somewhat urgency. No. So I think in total, I spent something like 15 hours in the ER. So I spent the first half of that sitting/half-sleeping in various positions, not eating or drinking anything. Someone would come every once in a while and take my temperature, take my blood pressure, the ER experience. Eventually, they did get me into an ER bed and at some point after the whole day, this whole experience had been from when I woke up in the morning to night. I eventually get an attending. And I’m having an incredible hospital experience, the guy next to me was shot. He’s talking to the doctor about this bullet wound, and I could hear him through nothing, and this guy sounds like he should be in a more serious… I’m getting the whole experience.

Brianne: It’s a lot.

Adam: And I’m constantly trying to get someone to tell me what’s going on because I’ve literally been here ten hours, I feel like I’m going to die. I haven’t eaten the whole time, literally I haven’t eaten all day. My attending comes in, does a brief interview, leaves, comes back and she says, “We taken your blind in a few times, we’ve done all this stuff, we don’t really see anything wrong. We think we’re going to discharge you.” And at this point, I’m not trying to get anyone’s attention, I’m not exaggerating at all, but I accidentally say the magic words, which are, “If you send me home, I think I’m going to die.” And I really felt that way. I really felt that if I stood up and walked out of that room, I would just go face down on the pavement. I was less than a block from my door, and I felt I couldn’t walk home. And she looked at me and said, “Okay, let me have one more look at your paperwork, and I’ll come back.” So about an hour later, a nurse comes in and she starts unhooking stuff, and I’m like, “What’s up?” And she says, “We’re taking you upstairs.” And I’m like, “Oh… okay.” And at this point, I’ve never been to a hospital before. I didn’t know anything about how you get admitted or discharged, I really didn’t know anything about hospitals.

Brianne: Right, or what that meant.

Adam: Yeah, and she said, “You’re being admitted to cardiology.” And I’m like, “…Oh?” And she said, “Yeah, we think you’ve had a heart attack.” And I’m like, “Okay, I don’t think that, but you’re the doctor, so okay.” So they sent me upstairs and I’m there for three days. And the three days of kind of a blur. I was spent a lot of it in semi-conscious states, mostly just because of how malnourished I was. It wasn’t because of my level of sickness, it was just because of the whole bad… how poorly I had treated myself during this experience, and being too tired to ask for food or help or do anything.

Brianne: Hunger sleeping is definitely something that I have experienced. Like, I don’t want to get up, and so I need to power down my body a little bit because I’m not going to give it more fuel.

Adam: Yeah, I’m not really sure what was going on. One really incredible takeaway from all this, I had just gotten a new phone, like the pebble or something, and it had this ring tone that was a very recognisable whistle, and to this day I still have a terrible aversion to that sound. When I hear it, I become physically nauseous. It’s really weird. But I still don’t call my parents because I don’t really have a good handle on the level of severity of this. Years later, I would find out that I was pretty sick. I had viral myocarditis. So I could have had a heart attack, I didn’t. At least, it doesn’t seem that way. But over the next three days, they’re drawing blood. They’re taking EKGs. They’re doing various ultrasounds or whatever. Echocardiograms. Oh gosh, I forget all the… they ran the battery. And they didn’t tell me much, other than I had an enzyme… I think it’s an enzyme, called troponin, which was super high. And I would later find out that troponin is the heart attack enzyme or whatever. Like, if you have it, you are experiencing heart damage. It’s highly highly specific. It’s basically like, I obviously don’t have any numbers, but the specificity for the test is such that, like it is only released in the case of cardiac muscle damage. So they’re like, “Yeah, there’s damage.” And my blood tests are whack. Like my liver enzymes are up everything’s not looking super great. My white blood count’s high, and then it’s low, and then it’s high. But the main thing is the troponin was high. That means your heart is messed up.

So eventually I did contact my uncle and I was like, “Hey, my parents are away, I am in the hospital. I wanted to tell a family member just in case.” And I think either he had the good sense to convince me or eventually on his own he contacted my parents. And they were very worried. But, again, me not knowing what the deal was, I kind of contacted them like, “No, no, it’s cool. I’m fine.”

Brianne: “Just hanging out here for days.”

Adam: Yeah. And a lot of great things happened when I was in the hospital. First of all, my line was inserted so poorly. Like, now that many years later I’m totally a veteran of having IVs placed. At this time, I would have asked them to move it. I was in terrible pain the whole time, I didn’t know there was problem. I had phlebitis on my arm for months after, literally a disgusting gross mark where they had put it. I had terrible treatment there. At one point they were going to inject me with something, and I was half conscious, and I asked, “What is that?” And the woman was saying it’s something about medication. And I’m like, “What kind of medication?” And she was not giving me a straight answer. And I’m not really very conscious. And I hold up my allergy bracelet because I’m allergic to duricef, which there’s no way they were going to give me curicef, it’s an old cephalosporin antibiotic. But she reacted, she’s like, “Oh, let me talk to your doctor.” And they never gave me it. So I’m like, “Were they going to kill me?” I really don’t know. And the whole experience was like this. Nobody’s telling me what’s going on. And finally they said, “Look, you’ve been here for three days, do you have someone pick you up?” At this point, just conveniently, my parents had flown home. Not for this, it was just the timing overlapped nicely. And I was like, “Yeah, my parents can come get me.” And they said, “You know, you have this troponin thing, but you’re not in any immediate danger. We’re going to send you home, but you have to follow up with your cardiologist.” Basically you’re not okay, but you’re not dying so go home.

Brianne: It’s not critical, and you need to do a lot more research about what’s happening with your heart. Well not research, but the doctor needs to do more.

Adam: Yeah, I go to see a cardiologist, basically, okay cool. During the time in the hospital also, this always sticks in my memory, just to have the story on tape. I really slept soundly because my body was falling apart. But one night I woke up really starkly in the middle of the night and I heard someone who coded, like, down the hall. And I can remember what the ceiling looked like when I heard it.

Brianne: Yeah, like it just imprinted.

Adam: Yeah. I just wanted to have that recorded. It was a really powerful experience. They died, they didn’t make it. Super intense. But you know, my parents came, they picked me up and they took me back to my Long Island home where I grew up. So not where I was living in the city. And I was in bad shape, I did not feel good at all. Later I was not quite this bad, but my new baseline was reset at this point. What I considered healthy was totally different after that experience. So after about two weeks, I get a call from the hospital and it’s like a follow-up patient communication thing. And this is probably when I really thought all my problems were going to be solved, because they called me up and the doctor or the doctor’s assistant or whoever had called me says, “Hey, we got some of your labs back from Stony Brook Lyne Laboratory. You have Lyme disease.” And I was like…

Brianne: Great!

Adam: Yeah, I was overjoyed. I just thought, “Yeah, this makes so much sense. God, I can’t believe…” And I’d had doctors test me for lyme before, but I knew all the things about how it’s hard to diagnose and you don’t always get a thing. You don’t always get all the titers. But this was… they said, “We sent it to Stony Brook Lyme, and that’s the lab. And they said yeah, and it’s super positive.” It’s not even a little, it’s like you have lyme totally. You have such lyme disease. And I’m like, “Great, what is the treatment? A month of doxycycline? Don’t give a damn, great, hit me up. I want it immediately.” They write the prescription, I get doxy. I go on doxy for a month.

Brianne: Were you working at that time, or had you been?

Adam: No, this month I took the whole month off

Brianne: Okay. And you were able to do that, that is fortunate.

Adam: It was very fortunate. Yeah, I’m really leaving out a lot of the  upper middle class privilege that I have here.

Brianne: That underlies so many of these stories.

Adam: I know, I was thinking how much I was going to come back to this. A pervading theme in my thought process through all of this, and I don’t know how to say this without sounding egotistical, but I’ve had a lot of educational benefits in my life. I think of myself as a pretty intelligent person. Just seeing how little progress I made in a decade with all of the resources at my disposal. Knowing doctors. Having the best insurance. Having the means and the time to do what I needed to do, and making no progress. How horrifically damaged the medical system must be. To imagine someone without the means, without the background I had, in my same position, who had to save up for months for one doctor’s appointment, just to have a doctor tell them what I heard the first day ten years ago, is staggering. It’s like what I said at the beginning, I wish I had recorded this whole thing. Because I can’t imagine how horrible that must be.

Yeah, I had the month off. My manager at the time had had pretty severe health challenges in her teenage years, and I think really immediately was like, “Do you. I’ve been there.” She beat cancer very young. And she was just like, “Go do what you need to do.”

Brianne: “Health is important.”

Adam: Exactly. Yeah. So that was a benefit that I had certainly. I took a month off and I get this diagnosis, and I get the medication. And at this point, it’s time to see an infectious disease doctor. I add a new doctor to my arsenal of doctors that I see. And at this point I also return to my longterm doctor who saved my mother, supposedly. Partially because I wanted to be like, “There is something wrong!” And it’s funny how still dismissive he was. But for some reason, there was just something about me that felt like I had to return to the source. Like he’s the one who saved me, maybe he can fix it again.

Brianne: Now that I know.

Adam: Right, exactly. And he coordinated my care with these infectious disease doctors. So I had all these letters going back and forth between him and the infectious disease doctor. I see the infectious disease doctor. There aren’t that many of them, or at least there’s not that many at the university level who see patients. And so I see this doctor and he retests me, and he looks at the data, and he’s like, “I don’t think you have lyme.” And I’m like, “Okay.” And he says, “I think you had really, really, really, really bad mono.” And I was like, “…Right.” And he’s like, “Yeah, and there’s an extremely rare side effect of mono, which is mono myocarditis.” Which is basically your heart gets infected with mono and blah blah blah. So, obviously, mono is another thing that’s in this world of mystery illnesses and it’s not well understood. And you can have chronic mono. And epstein barr is that super weird thing where you can get a syndrome that causes you to have all sorts of neurological difficulties. The point is, now I’m in this new mystery spectrum of diseases.

Brianne: With many viruses that could be culpable because even mono isn’t caused by a specific… I mean, it’s caused by a few.

Adam: Yeah. He basically, he had more of a smoking gun. Rerunning the lyme and showing almost nothing and then showing me my mono results that are almost literally off the charts. It’s like, “Yeah, you’re immune system is fighting. If you don’t have mono, your immune system sure thinks you do. Because you are epstein barr positive in every way possible. You’ve got the IgG, you’ve got the IgM, you’ve got the IgA. You’ve had it for years, it’s also new. You’re just fighting this on all fronts.” So I’m doing some of my own research and I did find that if you have mono and they don’t use heterophile antibody tubes, then there’s this one study that shows it could give you false lyme.

Brianne: You’re really deep.

Adam: Yeah, I’m connecting the dots myself because my doctors don’t care. And yeah, this could have made false lyme it seems. It’s possible.

Brianne: Kind of.

Adam: Yeah. The myocarditis thing seemed like baloney. It’s so rare, it’s an almost unheard-of complication, or at least that’s what it seemed to me doing my amateur research. And even the doctor seemed a little skeptical of that as a diagnosis. But this is one of the few things I did have confirmed many years later. Many, many years later. Actually, just a year ago, I was seemingly having heart issues. My heart was mostly fine after this. Back then, what I found out was that’s super rare. So one of my doctor friends likes to tell me, “Do you know about the rule of thirds with myocarditis? A third of the people die. A third of the people are never the same. And a third of the people recover.” And so, it really puts it in perspective. He tells me every time I see him. I don’t see him that much, he’s not a close friend, but that’s how much it sticks out to him. He’s like, “Yeah, you could have been really in bad condition my friend. That is not a good situation for you.” So lucky, I suppose. But many years later, like a year ago, I was having some issues with my palpitations getting much more severe. And I hadn’t had them in many years. I again had a million dollar workup, which I am entitled, I get this benefit of having really good insurance. And I had a crazy unusual test, which is a cardiac MRI, which is where you get a contrast MRI of your heart and they inject you with something that makes your heart speed up. It’s a really intense test. But they did confirm that I had a small scar, kind of in a central region of my heart, which is consistent with an old myocarditis. So one of the few confirmations I have over this whole thing is that I did in fact have myocarditis.

Brianne: So that really happened, for sure.

Adadm: Yeah. And it took eight years to prove it, right? Like, very interesting. So, mono, that’s a new thing. They told me to finish the course of antibiotics anyway. I think by that point, I was three weeks in. I finished the course of the doxy for the lyme that I didn’t have. Mono is one of those things where they don’t treat it. I think there are some treatments if you’re having, there’s some kind of severe side effects you could have during the high point of the disease, that I think they can treat. I didn’t have those.

Brianne: There’s symptom management, but not really… not a viral handling situation.

Adam: It’s possible that you can take antiretrovirals, but I’m not totally sure how it works. I never dug into it because I didn’t need them. But you recover slowly. So over the next month or so, I started getting slightly better. Looking back when I returned to work, I was still in terrible, terrible, terrible shape. I remember the first day back we happened to have a company event, and I looked like a ghost. I actually remember when I was home on Long Island the first time, I went to see my friends and one of my friends later told me, “When we saw you, you looked like crap. You looked like you were going to drop dead. You were just completely pale, totally gaunt.” I must have looked pretty bad. And I returned to work probably slightly too early.

Brianne:  And how was that? Do you think about the relationship between being a healthy or not healthy person and wanting to be, we’ll say, a productive member of society? I find that there’s this huge drive that if you’re not actually dying, then you should be working.

Adam: Most definitely. Especially that’s definitely also a US thing I’ve heard. Where did I hear this recently? Someone was telling me that in many cultures, it’s accepted that some people are just too sick to work and people take care of them. Yeah, I’m an extremely extremely type A person. I wouldn’t say I’m driven in the traditional way, like I don’t want to be a CEO and I’m not starting my own company, but I have this tremendous compulsion or addiction to doing my job, I feel, for whatever reason, non logically, it’s very important for me to just do work. And so yeah, I’ve got to get back, I’ve got to not show that I’m weak. At the time, I was still kind of treading into this space, it all still felt very new at that time.

Now I feel very settled with being sick, I guess that’s what you want to call it. But at the time, I haven’t fully formed this stuff. But now these are things that I’m anxious about in my life. Like when I’m dating, do I tell people any of this story? What will they think of me? And you get mixed reactions, I don’t know, I’m sure you’ve experienced this. I play it by ear. But yeah, definitely at that time it wasn’t something I was thinking about. Even though it had been going on for years and I was feeling kind of negative about my health in general, I don’t think I had yet accepted that my condition was bad forever.

Brianne: Like there was going to be an after.

Adam: Maybe. But at the very least, the mono thing made me feel like, well, there’s a recovery from this. It kind of felt like everything was rolling downhill towards that, so presumably it could go back up. Even though it didn’t make any sense, it somehow felt like that was the outcome of all the other stuff. But that was silly, I know now that they’re almost unrelated. Or rather, they’re related in a way that wasn’t that linear heading-towards-mono, coming-back-from-mono, which is what it felt like.

Brianne: I think we like to craft narratives, it’s the only way we can make sense out of this stuff.

Adam: Of course. Yeah, I mean, I definitely didn’t get better quickly. And that was my new baseline. Like, after that was when I really started feeling like I couldn’t do stuff. And in a way that was always on my mind in the sense that, if I felt like I couldn’t travel for work or I felt like I didn’t want to travel in my own life, it weighed on me so heavily. Like, is this in your head? Like, how much of this is your own drive? Because I could force myself to do it, and I had in the past. But I was just pulled by these… I was tugged in different directions. Like, “Well, some of it probably is in your head.” I was trying to be fair to myself, “Some is in your head, some is real. But you’re probably not in danger if you go. But don’t go because that’s stupid, because remember the second you stop looking that’s when you hurt yourself.”

Brianne: I think the second guessing is so real and prevalent and frankly, also really related to the class and social location stuff. Just imagine if you’re somebody who wasn’t taught to value your own perspective over the perspective of professionals. Like it’s so hard, it’s such a mind fuck to locate yourself within that echo chamber.

Adam: Yeah, and I was definitely the kind of kid who was always shouting out in class, I was definitely trained to speak my mind in a way that is like… the privilege of being a white dude. Like, people are forced to tolerate what I have to say. It didn’t help in this case, it definitely is a life advantage, but it was not. You know, I have the advantage of not being told that I’m hysterical. I didn’t have the advantage of being respected, though.

Brianne: Right, or being believed. Which I find super interesting too. I also did a call yesterday with a dude. I’ve talked to so many women, and so that theme comes up a lot, the legacy of hysteria and being believed. But with chronic illness, where if a doctor can’t immediately interpret it, it matters less.

Adam: Yeah, and it’s pretty funny too, because I’ve had the experience when actually speaking to a doctor. First of all, I never prepare enough. Like I may have all my paperwork with me, and sometimes I can even wrestle myself into writing my symptoms down. But man, once I get in front of the doctor… and you know I used to sell, I was in sales, I do not have a hard time talking to people. But there is something so horrible about knowing you won’t be believed, trying to hold down that anxiety because the more anxious you are, the more they’re predisposed to not believe you because you seem anxious. I just always felt like I did a bad job 100% of the time I was talking to a doctor. I’m like, “I forgot this, I didn’t present properly, I seemed too sick, I seemed too healthy, I didn’t seem credible, I seemed like I research too much.”

Brianne: “I believe WebMD too much.” Or, “I’m asking for medication too much.”

Adam: Yeah and it’s crazy now, this is one of my favorite parts of this. Now I’m at the point where when I speak to doctors they ask me if I’m a med student. Because of the way I say things. And you start to find keywords over time. The next years after this get really weird. The first thing that happens, and I knew from the beginning that this was going to be a problem talking to doctors about, was I started having issues with certain foods in really weird ways. And I know what the stereotypes are about gluten, I didn’t have a problem with gluten, this isn’t a gluten thing. But I had issues where I would eat egg and I would feel like back when I had mono. Try telling that to a doctor! Try telling a doctor that you feel like you have mono when you eat egg and watch how fast you leave that office. I had to discover ways to explain it to doctors that they would know that I was a credible source. And one of the early ways I discovered to do that was, first of all, the way I discovered it in the first place was that I was having these symptoms of severe fatigue that seemed to have some pattern to it, it wasn’t all the time. It would get much more severe and I would even have neurological symptoms like I would have dizziness and difficulty speaking, I got short circuited almost.

And finally I discovered it because I was on vacation and I started having these symptoms every day, and I was away for two weeks with my friends in a little cabin. And I decided to just do a food diary. So I just did a tiny elimination diet, because there were only like six things to eat in the house. And I tracked it back to eggs. Over the next year or so, it was easy to accidentally blind test this because I would get the symptoms and then I could go back to something I ate that I didn’t look at the box for, and find that it had egg in it. So that was a way I could explain it to doctors, “Look, I’m about to say something that sounds crazy…” And I’d tell them the symptoms and then say, “I’ve blind tested this by accident. I’ll eat something, I don’t know it’s made with egg, I have the symptoms, run back to the store, find who made it, and it will turn out to be some kind of egg break or something.” And doctors started believing that. so I’m like, okay, now I’ve got this under my belt. But they still don’t know where to go with it. Because the reason these things become such fringe… food allergies, especially, the reason it becomes such a fringe thing is because there are no good answers right now. So people suffering these things turn to general quackery and mystic solutions and that kind of thing. So, I have to pre-debias the doctor by saying, “I know this is normally associated with this. I don’t read any of this. I tested it objectively like that.” And they still don’t have an answer. That’s how we ended up there in the first place. And I started having this with a few foods and there was nothing I could do about it except not eat them. And that’s what the doctors say too, “You don’t test on a food allergy chart, don’t eat them.” But it felt related. Like, clearly this is in the constellation of feeling cruddy all the time. Maybe not related to mono. God, who knows?

And so I spent the next, I suppose, four years in various states of just reduced… I just reduced my life. I didn’t go on vacation, didn’t travel anywhere. I went to work, I went home. That was it. I just did minimal stuff possible to have the amount of energy to do what I needed to do in a day. And that was that.

Brianne: And what about other lifestyle stuff? Just tracking thinking about it? Because I know this this will track for me. so stuff like drinking, or whatever exercise might look like, or just other things that are maybe normal to include in your twenties. Gone? Not gone?

Adam: So, for exercise. Obviously during this period, in addition of just suffering, I did do things to try to resolve it. Like, “Oh, maybe I’m just so out of shape that I feel like crud.” So I started going to the gym and I just never… I couldn’t eat enough to gain weight, and it seemed that no amount of cardio would increase my cardio. So I felt immune to improvement. And that would go on for a period of time, and I would have my highs and my lows. And then inevitably, after a number of months or a year, I would hit a low and stop going to the gym.

Brianne: It was just torture.

Adam: Yeah, exactly. And then, like, romantic stuff. There was someone who I was seeing before I went in the hospital. And then we had some kind of weird miscommunication when I was in the hospital and at home where I guess she thought I was trying to dump her. And then I ended up seeing her again afterwards and we had a falling out, and then after that there was basically nothing. I just had no romantic energy and feeling sick is the unsexyiest thing you can be.

Brianne: And also, dating requires staying up late. It just does. And if you can’t stay up late or if it hurts to stay up late, it’s the worst. You’re not like a fun date.

Adam: I had been on the apps at the time, but everything felt like gathering all of my energy to do this date, and then do the date. And maybe it even went well, but like my god, if this person… I would start to dread when people wanted more. Like dancing, I like dancing. If I was on a date with someone and I had already mustered the energy to go to work all day, go on a date and they’re like, “Oh, you like dancing? We should go dancing!” That would literally kill me. And how can you… The problem with that is a lot of people feel like that. You turn around to everyone in their mid 20s, and they’re saying “I’m so tired now. We’re not in college anymore, I’m so old!” And I think, “Maybe this is just normal. Everybody’s tired.”

Brianne: “The language we’re using is the same!”

Adam:  Yeah like, “I’m in introvert. You’re an introvert. We’re tired.” And you start to commiserate with people who aren’t experiencing your experience, and it it really made me… I think during a lot of this period I felt like something was up, but there was absolutely no proof whatsoever. And I was like, maybe I’m just a little tireder than average. But I really didn’t know. And after about four years, things started getting weird again. There’s always changes when things get weird. I had these food problems for a while, but food started to be a totally different experience. I could hardly eat. I was having what I’ll call for podcast purposes, lower GI distress, which really had not been a problem in my life and it started getting severe. I couldn’t eat. I was like, “What the heck do I have to eat to eat comfortably?” I literally couldn’t eat anything. It was consuming every second of every day. Every moment was spent being like, better know where the bathroom is. I felt like I had changed over to someone who had crohn’s or a related inflammatory bowel illness. I went and saw, for the first time in many years, a GI doc. And I ended up getting an endoscopy because they always do those when you have anything going on, upper or lower. For me at least, I’ve had like three of them at this point. Didn’t find anything. For some reason, I still think about this sometimes, they didn’t do a colonoscopy. I feel like it was super indicated, but they didn’t do it. And I think part of that… another thing is that so much of healthcare is self fulfilling. I didn’t want a colonoscopy, and it was very easy for me to not ask for one or kind of avoid it. And I probably should have just asked and I didn’t. So I didn’t end up having one of those. I did see a very very young, fresh-out-of-school, kind of out there GI doc. And he had me take this pseudoscience test for SIBO, is this something you’ve heard about it?

Brianne: Yeah.

Adam: So he had me take this pseudoscience SIBO test which I read a lot about. That one was great. It came back literally off the charts. Like there was a chart, it comes with a chart, and I was off it. It was literally like here’s a line, and you’re in the space here. I was literally off the charts for SIBO. More antibiotic time. They put me on a, gosh what’s it called, I don’t know they’re always advertising it during the superbowl. Some stomach… it’s a non-absorbed antibiotic, so it acts on the surface of your gut.

Brianne: Okay, so it gets in there.

Adam: Yeah, it’s not in your bloodstream, so supposedly it’s not as bad for you. Whatever. I took that for a month, no effect whatsoever.

Brianne: And were you… what were you eating at this point? It sounds like you were just trying to manage your symptoms through food, but did you have any specific guidelines or protocols that you were following? I know how easy it is to go off the deep end with diet.

Adam: Yeah, so I’ve never really struggled… the weird thing for me is that except for a few things that are huge no-gos, like egg was an easy one for me, I identified a few of those. Like avocado, which is always a funny one to tell people I couldn’t eat avocados. They’re like, “What?! That’s crazy, I’ve never heard that!” If I ate avocado, within an hour it was… I really sympathized during this period with people who have inflammatory bowel disease. I was literally kicking down the doors of bathrooms, running into restaurants just blowing past the front person to get to a bathroom.

Brianne: Like nothing else matters.

Adam: Exactly. Yeah. And I couldn’t eat fruit. I couldn’t eat fruit at all, which is so weird. I literally was like, “Yep, I’m unable to eat fruit.” And obviously this doctor is giving me FODMAP, all this stuff, like all the buzzwords you hear when you’re sick in various ways. It’s like, “Yeah, have you tried the FODMAP? You don’t eat this crud.” It lined up pretty well to FODMAP. I have theories about why this is later, but it’s all just who knows. So again, I started having this stomach distress and then things get kind of interesting. This gets to the point where it becomes intolerable. And for some reason, I feel like I have waves of mental numbness where I can go a certain amount of time tolerating something really horrible But when I look back on that I’m like, “How did you not immediately do something about this?” This is one of those periods. This stomach distress goes on for at least a year. Two years, maybe. I changed jobs during this period, I was living my life and in this terrible state of distress that nobody could figure out.

And that’s when I decided, there had been a doctor that I saw many years before. Not quite as famous as some of the book-writing doctors, but I had googled it and he was called the Dr. House of New York City. Like one of those who sells themselves as doctors. And I had seen this doctor, and I decided to go back to that guy. It seemed like maybe he could do something here. Very odd guy. He had this little side shady underground office for someone who is presumably so famous. In the end, I think this doctor was a little bit of a scam artist. I started to recognize that he had a lot of patients with mystery illnesses who he was very good at sweet talking. I would notice the same kind of people in the waiting room with me. There were people going in there who were pretty clearly just buying prescriptions. Just based on the nature of the transaction between the doctor and them. And then one time I caught him changing my bill. And there was a very awkward moment where I think he gauged me as someone who is much more savvy than his average patient, and we had a very awkward, wordless exchange. But that doctor did start to tip me off to a few things.

So I think what triggered me to go see him was that my fatigue was at a particular low, and started to remind me of some of the weird symptoms I had had all the way back in Europe. Like my lips would go numb. I don’t know if my blood pressure was dropping out or whatever, but I was just going down. And here’s another thing, so many of my symptoms, I describe to doctors as feeling like I’m going to pass out and I never pass out. And to doctors that’s a clear signal of anxiety. There’s no clearer signal of anxiety than, “I feel a way and it never materializes.”

Brianne: Right, it sounds like, “I’m worried that this will happen.”

Adam: Precisely. And so I think I was bottoming out with regard to those symptoms, and I had one particular appointment where I went to see him and he was like, “Are you feeling alright?” And I was like, “No, that’s always why I’m here.” And I don’t know if I looked sallow or something, but he was just like, “You’ve got something smouldering. You’re sick.”

Brianne: “Something’s happening.”

Adam: Yeah, he’s like, “I don’t know what’s up with you, but you’re sick.” And he wrote me a prescription for just like amoxicillin. He was just like, “You’ve got something smouldering, take a high-dose antibiotic.” And at this point, I think until he said it I hadn’t fully absorbed it, but I was just like, “Yeah, just give me something. Something’s up.” The timing on this is bad. So I need to rewind the story slightly. Right before I had seen him, I’d started branching out my exploration a little bit and I saw an immunologist and a hematologist. The hematologist was very curious about my platelet count and my white blood count. He said it was a little weird, and he believed me. This was the first doctor I’d seen in a long time, who said, “Yeah, this whole story seems like someone who’s sick.” Extremely smart doctor, and he seemed super, super dignified, and he said, “Whatever it is, I don’t think I’m the right guy. Because you’re in front of me, I’m going to send you for a full-body cat scan. Let’s just see if you’ve got tumors hanging out anywhere or anything. But you should keep looking. I don’t think it’s serious, but there’s something wrong with you.” And I was like, “Okay, that’s better than what I’ve got.”

I did the full-body cat scan, nothing comes up. I saw an immunologist at the same time. This doctor was a very interesting doctor. I’d ended up seeing him because I had written to his boss who was the head of one of the major hospitals. The head of the department was this acquired immune, basically immune diseases caused by something else. And I thought maybe I had that from mono or whatever. And I wrote her like an email, a very long email about everything I just told you. And she sent me an email back saying, “I want you to see one of my department heads.” So that’s how I ended up seeing this guy. And he just ran… I thought I had had every blood test in existence, we didn’t cover all these, but I’ve gone down every route. Like, is it your thyroid? Is it this, is it that? I’ve really done everything. And he’s like, “I’ve got more. I’ve got a battery of immune specific tests. You’ve never even seen these tests, we’re going deep.” And so one of the things he runs is just, “What are you immune to?” He just checks out my IgG and every category. And it turned out that a bunch of things I had been vaccinated for I was no longer immune to, which happens. You don’t get your booster or whatever and you lose immunity. But my pneumococcal antibodies, they were just spotty. Like some strains I was normal, some strains I was almost nothing. And he was like, “This is a little weird. Most people are immune to all of these to some normal capacity. So, let’s do this. We’ll hit you with the vaccine and I’ll test you again in six months.” Easy. So I get the pneumo 26 or whatever. However many strains there are, the normal pneumonia vaccine that everybody gets. I guess pneumococcal streptococcus is the full thing, so they’re related. So I get that, I come back six months later. Lo and behold, I produced no antibodies to the ones that I was already not immune to.

Brianne: Okay, so some things had changed, presumably, but not all of the things that changed.

Adam: No, the ones that I wasn’t immune to the first time, no change.

Brianne: Okay. And so not what he was expecting, obviously. Not how vaccines are meant to behave.

Adam: Yeah, yeah. Right. And especially, some people don’t respond to vaccines. But it was just weird that precisely the ones you’re not immune to, you’re still not immune to. It’s not like there was any change in any of that. No meaningful change. And he’s like, “Okay, so here’s what’s up. That’s weird, and that shouldn’t be the case. But it’s not a thing, that’s not a disease, that’s just a thing. You don’t have lupus. You don’t have myasthenia gravis. You don’t have any of these autoimmune diseases.”

Brianne: Yeah, I was going to say, had you seen a rheumatologist?

Adam: Yeah, at this point, so the Doctor House of New York was a general practitioner slash rheumatologist. But he didn’t do a full rheumatological work up, which I would later get. So, this immunologist does something that I later found out was pretty radical. But I did not have context for this. And I guess at this point we’re getting pretty close to now. This is about a year and a half ago. And he’s like, “What I’m going to do is this. You have a selective immune deficiency. It’s not as bad… there’s something called common variable immune deficiency, which is one step worse than this. Basically you’re not producing some antibodies. You’ve got this whole constellation of symptoms. Realistically, I don’t think this is at all related to any of those symptoms. What you have described to me, your fatigue and stuff, unless you are chronically ill from the things you’re not fighting, it’s not going to cause those problems. And most people who have an immune deficiency like what you’re showing here, they’re literally walking around getting strep every day. They’re coming to the doctor and getting antibiotics. Literally, they just keep a bottle of antibiotics that they take as needed. That’s usually how it is for people with some kind of immune deficiency of this type. You don’t seem to fit that mold.”

Now what I’m thinking in my head is that I am always sick and I don’t really get fevers, so maybe I do have strep all the time and I don’t know it? And I’m kind of hitting him with this, but not very hard because he didn’t seem like he wanted to answer my questions.

Brianne: And it’s a new theory.

Adam: Yeah. And I’m like, okay, he doesn’t think it’s going to help. But the standard treatment for people with immune deficiency of this type is intravenous immunoglobulin, which for anyone who would listen to this who doesn’t know, when you donate blood plasma, they extract your antibodies from the plasma, and they put it in a soup and they bleach it, and then they inject it into people like me and it’s super expensive. So he basically says to me, “I’m going to write a hail mary to your insurance company and they’re going to cover it or they’re going to not cover it.” And at this point, I start researching this and it turns out lots of people take this. It’s apparently a treatment for various different types of immune conditions, and it starts to be one of those things where everywhere I turn, anyone I mentioned it to says “Oh, my aunt takes it, my brother needs it, my cousin needs it.” So apparently it’s pretty common. I do the research, it’s relatively safe, if they’ve been doing it since the 60s. I’m really nervous because some people get bad side effects. But for the first time in a long time, it felt promising again. I was like, this is something. Maybe I’ll get this, and I’ll feel great, maybe this is exactly what I need.

So, I sign on and he writes the letter. My insurance company accepts it immediately. Again, very fortunate to have good insurance. They don’t blink an eye. They were just like, “Yeah sure. $10,000 a month? No worries. Go ahead.” And I’m on the lowest dose. I’m on the joke dose. I’m on the kid’s dose. So this story… there’s no story there. I start getting it. This has become something. You get it monthly and if you need it monthly, you get it monthly forever. So this has become a part of my life. I go monthly for four to six hours to get this stuff infused into me, and it makes you feel like garbage for a few days. I made the mistake of looking up why. It’s because the stuff they use to bleach it irritates the meninges in your brain and makes your brain inflamed. So great. But I start getting this treatment.

The reason I said I had to rewind a little bit was very bad science. I started taking the antibiotic from the Doctor House of New York City at the exact same time I started IVIG. Big mistake. Not because it hurt me. Because I totally unscientifically am unable to figure out what happened. I’m pretty sure, 99%, that taking the antibiotic somehow cleared up the stomach issue because it just went away overnight. Not the… I still can’t eat egg and stuff. But the severe distress went away.

Brianne: Okay. It could be either and you suspect that it is one.

Adam: Yeah, and when you connect all the dots it’s like, okay this probably has something to do with why the SIBO reading was high, they’re related somehow. Like your stomach thing was making you tired because you couldn’t digest properly. And it seemed like somehow just taking that one antibiotic at that one time mattered a lot. For whatever reason, whatever was going on in that world. But I start taking the IVIG and it’s really, really, really hard to tell if it’s doing anything. They say it could take five or six months before you start feeling better. And things do seem to change. I was having neurological issues. Just the standard palette of dizziness, the stuff I said before, difficulty speaking. And they did kind of seem to improve. And it did kind of seem to be on a timeline with the IVIG. But there’s no concrete evidence. And there was some thought that maybe my platelet count would go up because IVIG is also a treatment for idiopathic low platelets. So when they don’t know why, they just give you IVIG and sometimes it helps. My platelets didn’t go up. So now I’m on IVIG, that’s just part of my baseline. But a couple months ago I decided to… my immunologist was really kind of done with this. I saw him, he came to visit once when I was getting the infusion because he works in the hospital. And he was just like, “Hey, you feel better?” And I was like, “I don’t know man. Not really.”

Brianne: What does better mean?

Adam: Yeah. “Not good. What do you want me to say?” So he kind of didn’t really follow up. And I started pushing on him a little bit by email, and I started to realize I think this doctor doesn’t want to get sued. He started using very coded language like, “I cannot advise you on that, please consult a rheumatologist. I cannot advise you on that, please consult your primary care physician.” And like, what does this guy think he did to me? So that started getting uncomfortable, but I’m like, fine, I’m gonna take his goddamn advice and see a rheumatologist. I got a recommendation and saw a rheumatologist. This rheumatologist is definitely down with whatever works. He was just the kind of doctor who was prescribing off-label uses of medication, that kind of thing. He has me test this one low-dose naltrexone, is that one you’ve heard of? It’s a popular off-label and they think it helps with some immune disorders. And I took it, and it didn’t really do anything, but that’s the kind of doctor he is. He’s like, “Yeah, I read about this thing and its new cutting-edge medicine, whatever.” He’s got his own battery of tests. He’s got his own secret arsenal of stuff that nobody tests for that he’s going to try out. And they sent them all to The Mayo Clinic, very auspicious. I had actually applied to go to The Mayo Clinic at one point, and they rejected me, which was super… that felt great.

But he sent this whole blood panel to The Mayo Clinic. He gets it back, and he calls me, and he’s reading the blood results. I could tell he’s just reading them for the first time on the phone, and I’m a little pissed off. I’d been calling his office and he’s not getting back to me. And he says, “Yeah, everything seems…” And then he pauses. Come on. Really? Are you going to do this to me? He pauses and he says “You have one that’s a little out of bounds. But there’s no way you have this.” I was like, “Why is that?” And he said “People who have this are really sick.” And I’m like, “What do you mean?” He said, “They can’t walk.” And okay, now I see where he’s coming from. And he said “They have trouble breathing. You don’t have this.” So he wants to retest it, to redo the panel. I redo the panel, another couple weeks, he calls me back and he’s like… well, I call him back. I’m always chasing doctors. I chase him down and he’s like, “Yeah, actually it came back positive. And it’s actually a little higher this time.” And at this point, he starts theorizing. Now he’s wondering. He’s like, “Okay, this is very weird.”

The thing in question was acetylcholine antibody. Acetylcholine receptor antibodies. So one of the neurotransmitters, acetylcholine, it’s how your nerves communicate with your muscles, or with each other? I don’t know, this one I should have researched better. It’s a neurotransmitter of some sort. The receptors… your body can attack them. It is the cause of certain types of autoimmune diseases that cause functional disability. And I had these antibodies. And they’re super rare. They are so rare in fact, that he commented on this, but I did research on my own. This stuff is not found in IVIG. Like if you test commercially available IVIG, other people’s donated blood, there’s zero. So this was not likely caused by IVIG.

Brianne: Those are probably your antibodies.

Adam: Yeah. These are coming from in you. And it’s also again kind of a high-specificity test. Apparently, however they do this, I don’t know if they just drop it on somebody else’s nerve cells and watch what happens. But they’re there. They’re in me. And they didn’t come somewhere else. And he’s like, “This is… very unusual. I think you should see this guy who’s the guy for this.” And this one I can name drop. Are you familiar with Brain On Fire, the book?

Brianne: Yes, I have not read it.

Adam: Yeah, me neither. But this guy, this Dr. Najjar, who is apparently this world famous… something. Immune specialist specializing in neuro diseases. He saved some girl who they thought was mentally ill, but really she had an immune disease. He’s like, “Yeah, you should go to this guy’s office. There’s no way he’s going to see you. But he’s got an associate who will probably see you.” And he gives me the phone number to the office and stuff. And I called the office and the first time I call, I guess I beat the recommendation. Because I got one of the doctor’s assistants and they weren’t rude or anything, but they were kind of like, “You don’t just see this doctor.”

Brianne: “You can’t just call here.”

Adam: Yeah. You can’t just see Dr. Najjar. He’s traveling all over the world, talking to people. And I’m like, “Okay, my doctor told me to talk to you. You might have his paperwork.” And they’re like, “We don’t have a recommendation, I’m sorry.” They hang up. They call me back the next day. Definitely don’t remember I’m the same person, and they’re like, “Hey, we got your doctor’s recommendation. Actually, Dr. Najjar wants to see you.” And they tell you, like, “You’re coming in Friday at six.” There’s no when do you… when can you be seen? He’ll see you at this time.

Brianne: Or like, “When are you free four months from now?”

Adam: Yeah, absolutely. This was very much like, “He’s going to be here for 15 seconds on this day because he’s in between Germany and California and you’re seeing him then.” And I was like, “Oh yeah, okay, let’s do it.” So, I’m getting pretty hopeful. I’m like, “This is going to be great. This guy is world famous, maybe he can finally solve my thing.” I show up. He’s like quadruple booked at my time, there’s four people all at the same time slot. It’s very amusing. Some of them are research doctors, one is this very old man with… this guy literally had exposed wires going into his skull. He had by some kind of thing that I think was an interface for some kind of experiment. It was really incredible. And me. And I’m just sitting there like, okay, one of these things is not like the other. This is weird. Eventually I go in, I meet with… he has another doctor that is kind of like his assisting doctor. She interviews me for an hour. I give her this whole back story.

Brianne: And that’s a lot of time to get, even with a specialist. Like it should be that much time, but it still usually isn’t.

Adam: I guess at this point they’re figuring something’s interesting about this guy, we better write it all down so Dr. Najjar can figure it out. In total, I’m in the office for like three hours. Because she leaves with my data and then I guess talks to him, and he’s running around doing whatever. At a certain point, he busts in. And he’s an extremely polite man, but it is not a stretch to say that he sat down and essentially yelled into my face for five minutes. Like, I have tremendous respect for this doctor, this was one of the strangest doctor visits I’ve ever had in my life. He sat down directly across from me, and he starts giving me like, “You have this generalized immune condition! Your immune system is not functioning properly! I’ve seen this many times, and it’s not a specific thing, it’s general!” That was his main point, he said it like 70 times. “It is not specific! It is general! It is not one thing! In your family, you have a history of immune disease.” Which I kind of do, my dad has psoriasis. Vaguely, there’s some history. Bue he’s just like, “It’s not a thing, it’s just this is the way that your immune system functions. And I’m not worried about that blood result.”

I skipped over… I’m realizing now I skipped over some of these others, but I’ve had these weird incidental results. I had a result that showed I had nerve damage in my leg that was mysterious. And he’s putting all these things into this five-minute yelling like, “Nerves! And this! Your body’s probably not functioning in this way correctly!” But really no information and no room for me to ask any questions. And the overall effect of this was at first disappointment. But then kind of a piece where I was like, this guy is the finest whatever-this-is doctor in the world, what hope could I possibly have to do more than to see this guy? There’s kind of this sad piece, where that five minutes of hair dryer was the best I’m going to get. And if he thinks this is… the way I rationalize it to myself is it’s like having a broken arm. It’s not like you have Broken Arms Disease. It’s just that your arm is broken. My immune system is broken. That’s what I took away from this. His follow-up was, “I want you to get a couple more blood tests.” They came back negative. Something called a SPECT scan, which is basically the equivalent of an fMRI of sorts where they look at brain functionality. And I’ll spare you that story. I just had it last week and I’m waiting on the results of that. And if they show brain damage, they’re going to up my IVIG dose.

But that’s it. My diagnosis is: your immune system doesn’t work, and that makes you feel like garbage because your body’s attacking itself. And the conclusion of ten years of suffering was to have this screamed in my face very politely, but loudly, by the leading expert on the topic in the entire world about a month ago. So now I get IVIG that may or may not make me feel better, and I measure my activity carefully, and I try to inspire myself to do things that won’t kill me. And that’s where I’m at.

Brianne: So that’s super fresh, too.

Adam: Yeah, this story is, in theory, ongoing. Maybe I’ll find out something from the SPECT scan.

Brianne: Yeah. And so now, energy is what it is. Generalized immune dysfunction. And are you working now?

Adam: Yeah, I do work now. I think one thing I’ve learn to do is I’ve recalibrated. I think I’ve just accepted that my baseline suffering is different. And it’s helped to tell some of my friends that at any given time, I feel crappy. And it gives me kind of more of a license. But, you never get rid of that… it sounds fake. Like, it took me what, two hours to tell you this story? And I’m still not convinced myself, right? I tell this two-hour story. I have these hard facts about things that are wrong with me. Functionally I know that my body’s attacking my nerve cells and that probably is in some abstract way accounting for how I feel. But still some of my closest friends still want me to snap out of it. Or they wouldn’t say that, but encourage me to not be so down about it.

Brianne: Yeah, like if you could get more of a positive attitude, you could overcome this hurdle.

Adam: Yeah, and I guess I try to behave in the way that they wish I would. Like, I will do things even when I don’t feel well, and I don’t think it’s killing me, at least not very quickly anyway.

Brianne: Right. And it’s a tradeoff, in my experience, where I feel like if I push myself beyond what I maybe should do. Well, there’s the physical health thing, which is pretty important, but also there’s mental health. If I never left my apartment, I would… I mean, I live in a house now, but if I never left my house I would only see one person, and over time that would become difficult.

Adam: Sure. I think almost… this sounds funny because I feel like I’m so used to feeling crummy that the embarrassment over feeling like my feelings aren’t justified is almost worse than anything else. It’s funny, like I brought up the gluten thing before and there are people with legitimate gluten allergies, it’s something that I’ve researched out of curiosity more than anything. And there’s a lot of really interesting research about people who have something similar to what I have, which is like your body confuses gluten for… it’s similar to some cells that are used in transporting, like neurotransmitters basically. And you can end up attack your own immune system if your body doesn’t like gluten.

Brianne: Yeah, well, celiac disease is gluten.

Adam: Yeah celiac disease, but there’s also these other weird things. And so it’s so funny, because it’s such a fringe thing, and these people… I read forums and I see people, I don’t participate but I read them. And these people are suffering so badly and I feel ashamed to be suffering. I feel like somehow non-credible in the same way that these people are non-credible. And ashamed to be similar but also feel bad for them. And it’s just inescapable. I’m always going to, no matter what. Even if I did have a name or a diagnosis. If you have, I don’t know what you want to call it, an “invisible disability.” Even saying that I feel shameful, I feel like I’m somehow disrespecting people with “real disabilities.” Because I feel crummy, right? That’s my problem. That I don’t feel good and I can’t prove it. And no amount of accounting for that, no amount of apologizing to myself and apologizing with my actions makes me feel legitimized. There’s no way I could ever get to a place, I mean, maybe one day, but I feel that it would take an awful lot for me to get to a place where I didn’t feel like I was just faking something.

Brianne: Yeah, that really resonates with me. So the person in the episode going up tomorrow from when we’re recording this, so episode three, which would be in the past when this was released, but anyway. The person that I talked to, she’s currently, in the month of October, running something called Tech Disability Month. And it’s because it’s Disability Employment Awareness Month in October I think, and it’s about that. So people with disability in all of the interpretations, so invisible illness or physical disability or injuries or chronic pain or whatever. And her focus is tech because she comes from the tech world. But she’s just thinking about how to even ask for accommodations when, and I appreciate the language that you used because it does sometimes feel like that. Where there’s invisible illness or invisible disability, and then there’s people who are really sick. So there are people who really need accommodations and then there’s the rest of us, who really need to learn how to suck it up.

Adam: Yeah, exactly. And, I’ve been very fortunate that I’ve always had managers who’ve been very understanding. Partially because I probably over… I probably go past what I could. Like I could work less, I could push myself less hard, but I don’t, and I think that somehow gives me more credibility. And I feel like there’s this exchange where I want to overwork. Back in the day when I was in the hospital, I worked from the hospital when I was in the hospital ten years ago, eight years ago. It feels like somehow, maybe this is just baked into me culturally, but I need to be like, “No, it’s fine! This is fine, don’t worry.” But you know, it’s like guilt tripping almost.

Brianne: But internally.

Adam: Yeah, I mean, that’s how I justify to myself the time that I do need off. Like when I need to go get infusions, they usually happen during the day. So I have to leave around three pm and I try not to work when I go to do that. But if I work a little bit, I’ll feel less bad because it will be like somehow I’m justifying it or something.

Brianne: I’m still providing value.

Adam: Yeah, something like that. It’s a really weird headspace. I almost feel this weird anxiety that people are waiting for me to admit it’s not real. I feel like I have friends who are still waiting for the crack where I’m like, “Yeah, I know it’s just anxiety.” Do you know what I mean? They’re waiting for that one moment where I show that tiny bit of weakness where I say something like I’ve just said to you. Where they could say, “Yeah, see, maybe it is that, maybe you aren’t really that sick!” And even my closest friends, I feel like they believe me and they care, but still I cannot show the tiniest… I feel like this is a problem with doctors too. Where I can’t even tell a doctor I’ve had any improvement without fear that they’ll just disregard everything they’ve learned about me and just say, “Yeah, it sounds like a lot of this was really in your head the whole time!”

Brianne: “Solved it!”

Adam: Yeah. And it comes back to, like I said, in my family there’s definitely been a history of mental illness on my father’s side of the family. And he wants me to know that, hard. He wants me to know, “All these things you’re feeling, they’re just in your head.” And he’ll try to get my mother involved, like, “Remember when I was in all that pain? But it was just depression!” And she’ll be like, “Sure… whatever.”

Brianne: And like, maybe, but also maybe it wasn’t. Which is also difficult. It’s really hard to change the way that we remember experiences.

Adam: Yeah, it’s… I don’t know. I mean nowadays, the things that I’m anxious about is whether the things that I’m doing to attempt to fix it are causing more of a problem. Like, “Oh, yeah, I just got a SPECT scan, which means I had a cat scan, and then they also injected me with a ton of radioactive dye! Maybe I’m going to get cancer now.” The things that I’m trying to take care of myself, am I killing myself? It was such a common thought after the surgery, “Your eyes are messed up, maybe because of the surgery. Did you hypochondria yourself into actual illness?” And that never goes away. The kind of thought of the mistakes I’ve made in my care can be the reason that my situation is bad.

Brianne: And in both directions, because I also will get… if I’m following one course of action that I know will take a while. So if it’s going to work, it isn’t going to work immediately. So in order to really find out if it’s effective, you need to commit six months or one year or two years to this course of action and there’s this huge opportunity cost basically. Like opportunity cost guilt or, “Okay, I feel better than I felt a year ago, but I still don’t feel perfect. And if I had done something different, would I feel perfect now? Am I hurting myself by pursuing this course of action instead of going say to The Mayo Clinic?” Although I don’t think if I’d gone to The Mayo Clinic it would’ve helped me, in my experience.

Adam: Yeah, I feel the same way. The IVIG is a perfect example, because it’s so hard to tell if it’s doing anything. I think perhaps it is, just based on nothing. If I just try to do a generalized analysis of state of feeling, I don’t know if I’ve adapted to my circumstances, or if I feel better. But in the couple of days after I get it, I always feel like I’m doing neurological damage. I cannot even think straight for two days after I get it. Because my meninges are irritated, like, whatever the problem. Because I’ve got basically bleach in my veins. That kind of thing is just an unanswerable question. I could quit tomorrow, but maybe any improvement I seem to have made will be eradicated from that. And especially with stuff that’s neurodegenerative it’s like… I’m a drummer, and I feel like I’ve had problems with my arms and that is so scary. Okay fine, I’m not dying, but if I can’t play the drums when I’m 40 I’m going to be really upset, you know? It’s not a good feeling. And I tell people this and they just want to not… they want to believe it’s not true. I had a biopsy and they, basically they cut a little nerve from my foot and from my upper leg, and they’re like, “The one in the upper site, the nerve density was lower than the lower site. That’s very unusual, and that means you have non-length-dependent neuropathy.” And it’s basically just that your nerves are fucked up. Something is going wrong, and you’re killing your nerves. And I’m just like… that is irreversible. What do I need to…? It makes everything a lot more urgent, what do I need to do to stop that? And the decisions, the opportunity cost, like you were saying, is so much higher.

Brianne: Yeah, and what do you think about… Okay, so based on where you are right now, what would be a comfortable stasis for you? What do you hope for in terms of… I need to think more about this question, but I’ve been thinking about it a lot for myself. There’s this one thing where maybe friends and family are like, “Don’t be so negative, you could get totally better!” And you’re like, “Well, actually, I’ve done a lot of work to accept that that’s probably not going to happen.” And also that thinking that way is making me not live my life right now. So anticipating an after is really kind of difficult. So, what could now look like? That’s an even worse question, but…

Adam: I’ve definitely given up on the after. I think that’s something that I used to think, like when I cure this or when I figure it out, I can go back to the before. And then at a certain point, you get to that weird haze where you’re like, “Was there a before?” And I don’t mean that in the cheesy way like, “I don’t even remember!” I mean maybe I’m misremembering the before and this is what I’ve always felt like.

Brianne: I was in deep denial. And for me, that was just drinking a lot. Not unhealthily, but I could stay awake because I’d had a drink.

Adam: This is one thing I used to tell doctors as one of my credibility tricks. The day before I started having the symptoms that led to my hospitalization, I almost certainly for a week or more my heart was inflamed, I was playing soccer and drinking that day. My general state of health was so poor that the way I felt when my heart was inflamed was not an indicator to me not to play soccer and drink. So I feel this general haze of, “What is my condition currently at any given time?” has taken such hold that it would be nice to have bigger swings in how I felt. Feeling crummy is interesting, but now to me all levels of crummy feel the same. I don’t have good days and bad days. I just have bad days and worse days, but I don’t mind either, because that’s every day. What I would like is to have good days. I recently had my wisdom teeth out, and one of the things they gave me was a steroid. And steroids are a common prescription for people with immune issues, but I’ve never tried them. So to me that was interesting, because I had a chance to guilt-freek take steroids for a week. And the funny thing about steroids is they can actually make you manic, they really mess up your hormones. And I had this super interesting experience over the course of that week where it was like being on uppers all week. And I didn’t actually feel physically better, but mentally… I was on drugs, mentally I was high. I was amped up. I was just on totally adrenaline rush for days. And it really made me reflect on if I were mentally medicated to make me incapable of sadness, I probably would behave differently. I would think differently about the negative feelings I had. Like I was standing on the train, I have issues with breathing, again great anxiety symptom, but it’s a mechanical issue. How can I prove it? I can’t.

Brianne: Right. Like air hunger?

Adam: Yeah, that’s a good way to describe it. I think now it seems likely that that probably has to do with the acetylcholine receptor antibodies, because a lot of people with those have issues breathing because it affects your diaphragm’s function. But anyway, the point is it’s a thing that I deal with often, and it doesn’t bug me that much, but I know it’s there. And on those few days when I was totally manic-ed out on steroids, I felt it, but it was meaningless. It literally was like being on like a multi-day adrenaline rush. So I’ve been thinking about that. A different now could be, sure, if you were hyped out off your mind, perhaps this suffering would be utterly meaningless. But it’s not. And I can’t imagine a sane version of myself where the way I feel is meaningless. I could live the rest of my life in some sort of drug-induced manic episode, but I don’t know…

Brianne: What that would be like overtime.

Adam: Yeah, I mean, the steroid thing is funny because if you take them for a month then they really start to wear on you. So that feeling doesn’t last forever with steroids, literally. But I think that the point is that it gave me perspective, where I could imagine a different mental state with the same physical symptoms. How much of what I feel now is because I know the implications of my symptoms? Would I be more at peace if I had all these mysterious symptoms with no notion of implication?

Brianne: Right, the future worry.

Adam: Yeah. Probably. I probably would feel different.

Brianne: Yeah. I think it’s hard to parse out the part of not knowing what’s wrong, which is ongoing, but really having no idea, and then wondering if you’re crazy all the time because you’re wondering if it is all in your head. Which maybe never goes away. And then starting to get an explanation. And then realizing that you can go down a lot of really deep rabbit holes around all of the things that could be taken away from you if you follow those to their conclusion. They’re both hard, for me at least, they’re both hard to wrestle with.

I’m really impressed with your ongoing faith in medicine. For me I gave up, well I not give up on doctors, I have a doctor. But very early I was just like, “I don’t want to keep going to people, I don’t want to argue with specialists. I am so sick of not being believed.” And I also, I spend too much time on the internet, and I’m… you didn’t use the word defensive, but I feel defensive about things that become curious about. Because I’m aware of the stigma, often fair, around, we’ll say health bloggers. Health blogger is a good catchall for me. Health bloggers and also professional patients, which is a big corner. Those are both separate, but large corners of the internet. And I’m not interested in becoming either of them. But at the same time, in my own background, I’ve done a ton of diet experiments and a ton of whatever experiments because I would just get to a dead end with doctors and go, “Okay, well, there’s no reason for me not to do this.” And then this is how the problem starts snowball on the internet, I think, is because anecdotally, some things do work. But you don’t know why because you can’t… there’s no studies and whatever. So for you being able to identify that eggs were a problem, that by itself is impressive. I have a terrible time identifying which foods are problematic, but I know when I eliminate a whole bunch of stuff, I feel better. And so I am impressed that you have continued to seek medical answers.

Adam: It definitely goes in spurts. Like when something particularly alarming happens, it reminds me that I have a lot to lose. It’s funny, that nerve test was a total incidental thing. I had hurt my back, and they sent me to see a neurologist just in case, for my back. And he did a normal neurological workup, and during that he found that I had some numbness in my feet, and that led him to do these other nerve tests, which led him to a finding totally afield of what he found. Just like, “Oh yeah, that’s weird. You have this non-length-dependent neuropathy. That’s very odd, I can’t really help you with that. I’m here for your back, I don’t really know what this is about.” But nerve damage, okay wow, don’t want more of that. Irreversible problem pushes me to try to do something. I think I’ve kind of gotten this weird… over time, you start to realize that a lot of doctors were in the middle of their med school class and they’re just normal people who went into the profession of doctoring who are not particularly good. And for 99.9% of patients, they’re fine because they fall into a basic differential of a few common elements.

Brianne: It’s an easy flow chart to diagnose those people.

Adam: Yeah, and then for everyone else, there’s maybe a specialist for the other 0.1% or maybe for some really rare things far afield, there’s one specific researcher doing research in your area, who’s the super duper expert. And I think over time I have inconsistently moved in the direction of progress. Like I’ve discovered more objective facts on the ground, discovered the issues with the antibodies I’m not producing and the nerve damage. And I slowly get these little hints toward the larger picture. What I think Dr. Najjar made me realize is something I hadn’t really considered very hard but it’s totally feasible. The larger picture isn’t a named thing. It’s just like I said before, if you break your arm you don’t have Broken Arm Disease. You just have a broken arm. And if you break your immune system, it’s not like you have lupus, you just have a broken immune system. So I’ve had this somewhat rewarding track towards this point where I get these little tidbits. I also feel like I started at a certain point using the doctors as tools. As much as I feel like I’m failing to convey my message and I’m uncomfortable trying to tell them, failing to tell them my story. Sometimes a doctor will have an idea for a new blood test, and I don’t consider that data for them, because they never give me answers. I consider that data for me. And I still do feel like I’m slowly putting things together. But maybe I’m not, maybe that’s an illusion.

Brianne: Well, I think even about the unnamed thing, like collecting a lot of data that doesn’t point to anything. There’s just got to be so much stuff that we have not yet identified. I think that about chronic fatigue syndrome. I think it about fibromyalgia, certainly. I also think it about depression. Like, there’s a lot of different things going on, but when you talk about this diagnosis flow chart that most doctors use, they put most people that they don’t know what to do with in depression and anxiety. Like that’s what you’ve experienced, but I think every single person that I’ve talked to so far has said, “They told me I was depressed, so I started getting treatment for that.” Or, “They told me that I was under too much stress, so I started trying to manage that.” And that’s pretty convenient that you can name it something and then tell somebody that it’s happening in their head and then it’s over. But I think most of these things have another explanation and that we just don’t totally know what it is yet. Not super comforting.

Adam: It’s funny too when you say that, because I have this very… competitive is the wrong word, but a few years back, I was like, “Yeah, it’s anxiety.” And I went really deep. I started meditating every single day, and I started leaving exactly at five pm and not looking at work at all, and I dramatically reduced stress in my life, and I designed my life around stress reduction. And I reduced stress, and I didn’t feel better. I measurably was able to reduce stress and change my behavior. I used to have a severe addiction to checking my work email, and anyone who has had that before, or even just checking notifications on your phone, breaking that is very measurable. You can download apps that tell you how many times you check stuff. I was able to very data-based reduce my stress and how much I thought about work, and I didn’t get better. And for a while, that was another credibility builder with doctors. There was a time where I had a zen year. I had a year when I was just so calm, and when I saw doctors during that year, I was just like, “I’m not stressed. I work at a large company making a good amount of money. My manager understands my situation. I leave when I have to. I meditate every single day. I never work past five o’clock. I don’t have my work email on my phone.” I reached a state of calmness yet unbefore reached in my life, and I’m like, “So, we can start off this discussion by me telling you that anxiety is not the problem.”

And it was interesting to see how doctors responded to that. It didn’t help. Because it goes back to another point we were talking about earlier, which is the reason so many of these weird edge cases end in health bloggers and professional patients is because there is no current medical answer. They end up there because there’s no answer for them, no matter how deep down the rabbit hole you go in traditional medicine.

Brianne: And no matter how well you advocate for yourself. You’re talking about it in terms of how you could build credibility with doctors. And for women it will come up because articles come out every once in a while that say women are taken more seriously by doctors when they are accompanied by their husbands. And you’re like “Okay, well, we can do everything that we want to do…” And I’ve had people tell me that before, too, like “It sounds like you need either to be a better advocate for yourself or to find a health advocate.” It’s like “No, I promise you that’s not going to solve this problem.”

Adam: That’s not it.

Brianne: So I think that’s interesting. I am currently, speaking of the nerve stuff, I’m becoming re-paranoid right now. My dad had early onset alzheimer’s disease, and before that he had a like a phantom limb thing, which I forget what it’s called. It is not phantom limb, it has a weird name, but his arm moved on its own basically. And now his sister, who is alive, is having ongoing nerve problems. And I’m like, okay, so how much of this could be genetic? And what should I be thinking about now as a person who has had a limited amount of nerve pain? Like, I didn’t use a laptop for four months last year because typing was too uncomfortable, it was very specifically in my fingers and my forearms. And okay, this is something that I want to learn more about, and I don’t have a thing right now. It’s not something that I need to pursue with a doctor, but my very, very current, like future obsession is that I still haven’t read… Do you know Terry Wahls? Who is a doctor? She has MS. She might have come up on a fringe thing for you.

Her first book I think was called Minding My Mitochondria, which was about… I think that one’s a memoir, I have not read it. She was diagnosed with MS and she was using a wheelchair, and they told her that it was going to continue to be degenerative no matter what. And she was definitely an MD but I think she was a researcher in general at a university. And so she went as deep as you possibly can because she was in a position to do that. Where she was like, “Okay, well, what is causing these lesions?” And then she would find that out. Then she was like, “Okay, well, what do I need to repair it? Because the problem is that maybe I can’t keep up with the damage.” And she also has a TED talk, which I also haven’t watched but it’s a quicker way to digest this information. But so she started taking all of these supplements, which is one way that people can go. And she started taking them all, and then she was like, “Well, this isn’t very effective because a lot of the time, you need cofactors in order to use them or whatever.” And so she got super deep into dietary stuff, but on an extremely scientific level, and it worked for her. So she was able reverse enough of the damage that she could walk again. I mean she talks about it, she writes about it, and she started a foundation, which specifically is to funnel money into research into this kind of stuff. Because one of the problems is that there isn’t a lot of research money available.

But I have it on hold at the library, and I’m like, “I need to read The Wahls Protocol!” Which is her other book about her diet, the diet that she recommends, which is basically like eat three cups of dark leafy greens, and then three cups of vegetables or fruits that are solid colors, and then eat three cups of sulphurous vegetables, which is a really weird combination. It’s like the onion family and then mushrooms and something else. And she’s like, “That’s the most simple that I can put it. But across those things, you will have your bases covered to repair this kind of damage.” And so now I’m feeling like I have to obsessively learn about this because if I don’t learn about it to find out if it could impact my life, I could be causing damage. I’m in one of those brain cycles around this stuff. And it’s interesting when you talked about eggs, I don’t think that diets cure everything, but they’re the easiest things to get into research holes about.

Adam: Yeah, I always think about… sometimes I’ll have these moods where I start making connections. And it’s funny because that’s what brains do, they narrative build, but all of these things I’ve faced, I can’t help but be like, “Okay, yeah, my dad and his father had severe depression to the point of hospitalization. Now they’re saying that depression might be abstractly linked to gut bacteria.” And I’m like, okay, I had issues with my gut and the gut-brain connection is mediated neurologically. So could it be that my family has a genetic immune condition that causes damage that predisposes you to depression and these gut issues? And how many more years before that’s not that far fetched? Like today, that’s health blogger world, that’s health forum world. But who’s working on this today that would be compelled by that? It’s compelling to me, obviously, because it’s my life. But it feels like there’s such a fine line between science fiction, science fact and quackery. And it’s very hard… like what will look barbaric in 40 years is very mysterious to me. Like the fact that we ever gave people antibiotics without probiotics, I feel like already in 20 years that’s going to be considered lunacy.

Brianne: Yeah, or babies are going to be treated. So for instance, you’re talking about being given antibiotics as an infant, but also anybody born by c section, anybody who’s formula fed, all of these things that are now on a non-fringe level being associated with a bad microbiome. It’s so easy to go deep, and I wonder a lot about just why… you’re probably right, people in the middle of their med school class, but why the medical community is so… whatever the opposite of agile is. Because I think agility is part of what makes some fringe practitioners better. So functional medicine is an example, or naturopaths, or all of these people who, yeah, maybe they’re going to take you down a weird anecdotal path, but they’re also probably paying more attention to what’s actually coming out of academia right now and what people are writing about right now. Even high fat, low carb is another exciting trend that’s happening, but there are pieces of it that I think will stick. Probably not all of it.

Adam: Yeah, I mean, I’ve had such… typically the experience I’ve had with naturopaths or anyone in that field has been that they almost took me too at face value. Like they didn’t want… I always wanted the scientific side like, what serum can we look at? What blood can we draw? Because I want to know, I assume that this stuff does have a cause. I don’t assume that I’m a new case. I guess what you said before about like, yeah, maybe they’re in the middle of their med school class and that’s why they’re not thinking very hard. I think it’s just a statistics game. These doctors can treat most of what comes through the door. And whether this is a rationalization or not, I kind of stopped being angry at doctors just because I’m like, “You shouldn’t necessarily have to know what’s wrong with me. You probably solved every other case you saw today, even if you were a jerk about it. You might not be a good doctor, but…”

Brianne: Most people leave happy. They must, or they would understand when other people are frustrated with doctors.

Adam: Or they leave unhappy, but it’s not a systemic problem that’s going to bother them for the rest of their life, and so they got over it with or without your help. The system shouldn’t be set up for edge cases. That’s my justification to myself. There’s no reason for me to be supported. It would be great. I get a lot of support, and I’ve been lucky that I have good insurance. But gosh, I seem so rare at this point, after everything I’ve known, I am one of a handful. I had to get to the last level to find a doctor who is like, “Yeah, I’ve seen this before.” Maybe that’s fine. Maybe most people are taken care of. I mean, obviously the healthcare system is totally borked, I’m not going to say it’s good.

Brianne: But this specific thing is hard in healthcare systems that work well.

Adam: Yeah, exactly. You want to treat most of the people with most of the problems. And people fall through the cracks, I don’t know.

Brianne: I think the biggest thing that I think about right now is not that every MD or primary care physician should know the answer to these things, but I think it would be really helpful if they were just able to be aware that chronic conditions almost exist. Like this thing that you’re talking about about not being believed, that everybody that I have talked to talk to talks about, about not being believed. It would be really helpful if they had the confidence to refer you to somebody else, which I think that they don’t initially, for whatever reason. It’s like, maybe they don’t want to seem like they’ve been duped by this person who is a malingerer, so they’re like, “No, no, I have to keep pushing you away until you convince me that it’s real.” I would like that to turn around, and I don’t know what it looks like from the doctor’s side.

Adam: Yeah, it’s hard to think about. I mean, I think doctors also learn… they’re as attuned to biases as any other person is. So yeah, I mean, confirmation bias, they don’t see a lot of people again, especially… even me. How many doctors see me a few times if I have a bad experience? They’re like, “Yeah, that guy probably just felt better and didn’t come back.”

Brianne: Oh, yeah, definitely. I don’t go back to doctors that haven’t helped me. So they probably think I got better.

Adam: Yeah, maybe if we finally eventually do have a system that connects everything in one health portal and all of your stuff is tracked, we could easily track misdiagnoses. I don’t know if that would be too humbling for doctors to survive. I don’t know what the correct language is, because it’s not a misdiagnosis, but it’s like, “Here are how many percent of your patients went on to be diagnosed with chronic conditions after seeing you, by someone else.”

Brianne: I think that would be great, I think that’s the exact thing that this system needs.

Adam: Well yeah, I mean, what we want is our piece of flesh, right? Like, I want everyone to know that they didn’t help me. But I don’t know, I really feel like I came out the other end less angry than I was a couple years ago. I used to be a lot angrier. Now I’m just kind of like, “They’re people too, their job is hard, I’m very weird.”

Brianne: Yeah, that’s the main takeaway.

Adam: Yeah, maybe it’s not the right takeaway, I don’t know.

Brianne: I don’t think there’s a right takeaway. I think that covers a lot of things. Probably all the things.

Adam: Yeah, I do feel bad that this story is such a long story and I feel like that’s the boring part of the conversation here.

Brianne: Not here. I love them, I love hearing… that’s why I’m doing this, obviously. I love hearing the details of it for people, and I’m really excited as I talk to more people. I don’t know what to do with this information yet, but I’m really interested in connecting the dots. So some of this stuff, just seeing how often people are diagnosed with mental health conditions, which turn out to either not be accurate or be a part of the picture, that’s becoming really clear to me. I’m just looking for patterns too, I don’t know what to do with them yet. But so I’m really interested in the minutia of it all. There was one other thing that’s come up a lot, and I just lost it again, but I think it matters just being able to share the details of it because, like you said a few times, you don’t really know how much you told your friends about it, and I think it’s hard to talk about it directly to people because their own discomfort gets in the way. Like their own desire for there to be an after. And I’m interested in having these conversations and having it be okay that that might not be where this is going. And some people do find a way to live. Well, everyone finds a way to live…

Adam: Or you don’t, right? That’s a joke I make a lot, like either I’ll die or I won’t. That’s the only two options. Of course those aren’t, there’s lots of suffering in between. But it feels that way.

Brianne: But I think it’s worth capturing. It’s worth capturing the details of this stuff because people’s individual conditions are really rare. But a lot of things about the experience are way more common than we realize, because it’s not represented in media anywhere. And I have a huge long rant about that that I will not even go into.

Adam: Yeah. Mild, almost hidden disability on the fringe of disability that is not represented. It’s interesting.

[guitar riff]

Thank you for listening to the eighth episode of No End In Sight! I’ve got many more interviews recorded for future episodes, so make sure you subscribe on iTunes, Stitcher, or wherever you get your podcasts.

Watch out next week for the followup to this episode. We talk a lot more about research and the future of healthcare and all that good stuff. 

If you follow me on social media, then you might know that I have now finished reading the Wahls Protocol, and am still pretty obsessed with the whole thing. If you’ve got any suggestions for getting all those veggies in each day, I’d love to hear from you @bennessb on twitter and instagram.

And if these stories have been resonating with you, then I’d love to hear your story. At this point I’ve interviewed a lot of straight cis white women, and I’d particularly love to talk to people with other perspectives. 

I also have a small Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we dig into all the questions about working and running a business while prioritizing your health.

Last thing:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’m going to be adding a bunch of simple black and white patterns to my collection soon, and I’d love it if you checked us out at digitalartisanal.com.