John talks fabry disease, bipolar disorder, and adulting while chronically ill.
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Transcript:
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Before we get started, I want to do some quick shameless self promotion. Back at an event in September, my husband and I both told parallel stories about my chronic illness and our first year of marriage. I talk a lot about intimacy and the dead bedrooms subreddit, which got way more laughs than I was expecting. He talks a lot about how he thought he was going to lose me, and what that felt like for him. You can hear both of these stories on the latest episode of the Stories We Don’t Tell podcast, which I wholeheartedly recommend and also used to be part of.
Today I’m talking to John about fabry disease and bipolar disorder. During the hour we talked, so much of what he said resonated with me and I copied and pasted about a million of his quotes to twitter while I was editing the transcript so I hope you enjoy this one.
As a quick content note, we briefly discuss the intersection of pain and suicidal ideation, but this is a general conversation rather than a specific story. If you hop forward about 10 seconds you’ll be past it.
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]
John: So I can tell you that I am always super self conscious because I do look like someone who is outwardly fit. Because like… my illnesses aren’t, you can’t see a crippling disfigurement or something. And I do like make an active effort to exercise because it’s something that’s really important for me staying healthy. So I guess to start it, that’s one of those things were I do feel like when I have been interviewed at places they assume that I’m abled, which is convenient but also kind of frustrating. So yeah, that’s one part of it. So I guess the first question is was I healthy as a kid?
Brianne: Yes, exactly.
John: For me, the answer would be no because I have a thing called fabry disease, it’s a genetic disease. And it was undiagnosed in my grandmother and my mom and my uncle. It’s an x-linked recessive disease, so it follows… the women are considered carriers, which is a whole other thing to unwrap, which is kind of inaccurate but… So it was underdiagnosed until after I was born and then my grandmother, my mother, my uncle and I all started getting treated by a synthetic enzyme replacement therapy. So this enzyme is grown by a company called genzyme in Boston and they pioneered this technique where they used bacteria, or like yeast… they genetically edited yeast to create this correctly folded protein and they sell it for an exorbitant sum of money. It costs roughly $300,000 a year to my insurance.
Brianne: I’m constantly amazed by that exact thing, what people need to live.
John: Yeah. The exact number this year is $288k.
Brianne: Wow. And so when did you start treatment? Or even when did you know you needed it?
John: So I started getting treatment for that, I went to the NIH when I was eight years old and I stayed in the Ronald McDonald outpatient center and I was sharing a facility with people who had like 100 tumors in their lungs. And it was December and some of these kids weren’t going to see Christmas. So that was at eight years old and then when I was 12, I just started on the synthetic enzyme replacement therapy after this study was completed and I was out of school once every two weeks basically from then on, until about high school when I started getting home infusion on the weekend.
Brianne: Okay, and so up until so up until you were eight, which is when you went to the clinic, I’m guessing you had been symptomatic because you said it wasn’t diagnosed previously in your other family members.
John: So it’s a lysosomal storage disorder, which means that I’m missing an enzyme in my blood that is responsible for breaking down a particular lipid in my bloodstream. And that lipid accumulates over time so presentationally, the disease actually only starts really showing serious symptoms by like 25-30.
Brianne: So it’s like a build-up in that way?
John: Yeah. My 25th birthday was in June and I can tell you that yes, it does start to come out when you’re 25-30. It’s characterized specifically by neuropathy very similar to fibromyalgia and some indicators of reduced kidney function and a variety of other things that may or may not be the disease, but it’s very hard to actually because it’s multi-organ, multi-symptom. We can get into unpacking all of the psychological aspects of that, but it’s very hard to be like, “Am I hurting today because I drank too much, or because I just am sick.” And so last year I was also diagnosed with bipolar disorder, so I have that. I have two herniated disks in my back that may or may not be related to the fabry disease, and I have fabry disease, and I’m in tech. So that’s kind of the lay of the land.
Brianne: Okay. So okay, got it. So missing an enzyme and then you start getting infusions at 12 is that right?
John: Yep.
Brianne: And was that treatment newer at the time? It sounds like…
John: Yeah, it was brand new.
Brianne: Okay, so for the other people in your family if they had been diagnosed earlier, it might not have made a big difference?
John: There was plenty of misdiagnosis. So just because there wasn’t a treatment doesn’t mean that a lot of heartache couldn’t have been saved by properly diagnosing.
Brianne: Oh, totally. No, I 100% agree.
John: So genzyme, the company that made the drug actually got a virus in their bacteria container that caused them to have to purge all of their facilities and deep clean them to eliminate the virus and so for about two years in the early 2010s the supply was seriously decreased and there was a class action lawsuit and yeah, it was a snafu.
Brianne: Oh my god, I can’t… I assume then it’s pretty new so they must have a patent and no one else can even… no one can compete with them right now.
John: No one can compete with them, but this did actually I think influence the FDA’s decision to fast track another study. And this drug just got approved which may be really life changing for me. I’m actually going to see my doctor on the 30th because it’s a pill form where they use a chaperone protein to correctly fold the enzyme that was misfolded in the first place. And it’s only available to a certain percentage of phenotypes of the disease because the disease has different genetic markers that indicate the same underlying disease. And I’m fortunate enough to have one of the better phenotypes in terms of enzyme activity. So it is a spectrum and from what I’ve read there are other people who have it much worse than me. But that’s something to never tell someone who’s chronically ill.
Brianne: No, it doesn’t really work like that does it it.
John: Yeah. It is hard because I do think there is always a guilt associated with just wanting to feel like… especially with the bipolar disorder that came up this year, I do feel like my life is like I’m playing on hard mode sometimes. And it is hard to avoid the toxic aspects of comparison, especially in my personal life. Like if my girlfriend’s kind of being a weenie, I can get kind of frustrated with that because I live with such high levels of chronic pain. But it’s not something I’m proud of, but it makes it… zen me always wants to say, “Oh, your pain is valid as well.” But it is super easy as soon as things become hard, you just want to be like, “Rub some dirt on it! I have this genetic condition and I don’t complain about it!”
Brianne: Yeah, I think sometimes it can be a really big empathy builder to have chronic pain, but it also can kind of zap your empathy exactly as you described.
John: Yeah, like mornings especially, I just want to be like “Don’t don’t talk to me. I just need two hours.” I’ve noticed that getting caffeinated for whatever reason seems to help me ignore the pain a little bit. It’s hard. I use gabapentin, that helps for the back pain a lot, more than anything. But I do think it influences like, I probably smoke more weed than I should because I’m in pain and it helps.
Brianne: It helps with nerve pain so much.
John: Yeah, and there’s stigma around that. So you can go to pain management centers and they’ll prescribe you tramadol, and I am an addict in the sense that if you gave me tramadol, I would enjoy it far too much. And I prefer doing this. I feel like it’s safer, it has its own side effects for sure and I don’t think it’s medicine. Some people call it medicine and I’m just like, “Medicine shouldn’t have this many side effects.”
Brianne: Like cognitively?
John: Yeah, like cognitively and also just like… munchies. Like when pete someone prescribes weed for medical marijuana, it’s like maybe they’re chemo patients and they need the munchies. And maybe there’s someone with nerve pain, and they need the nerve pain relief. But a medicine would just do that one thing rather than six things all at the same time. I don’t need weed for the appetite-related aspects of it, I already have a fantastic appetite. So it is frustrating to feel like there are healthier alternatives that aren’t getting researched into. Because there are just a lot of people who just don’t have the problem.
Brianne: And do you run experiments on yourself at all? I mean a little bit it sounds like, so you have different things that you’re trying. I’m sure…
John: Yeah, I’ve tried the CBD sort of craze and it does not help with the nerve pain. It helps with anxiety a lot, which is fantastic. But I haven’t found anything that’s helped with this fascial pain that I get in my hands, just mostly in my forearms and my hands, where I really just wish my hands were not connected to my body, it’s really weird. And it doesn’t seem fair because I really can’t predict what days it’s going to happen and what days I’m going to feel great, which is really psychologically taxing. I bought dragon, the voice…
Brianne: Oh yeah, voice to text?
John: Voice to text. Because my hands… I’m a programmer so I’m trying to figure out a way to write code with voice to text.
Brianne: That’s a good question.
John: There aren’t a lot of good resources into it. Like it seems like everyone has just kind of built their hacky scripts on top of a thing called talon. But it’s not super built out. And there is an implicit hypocrisy of mine too, which is that I’m a frontend developer and I don’t know shit about accessibility. Which I really should, but at the same time there’s so much… I don’t know about you, but adulting is pretty hard for me. And there’s so much on my plate that I’m just kind of trying to keep track of everything that’s going on. I can’t go off and study something for four hours after work, because I’m just wiped afterwards. And my priority just don’t lie in studying for four hours.
Brianne: There’s not space.
John: After walking my dog or going to the gym, all of these things that are actually far more important.
Brianne: Yeah, for your health and mental health.
John: And professional advancement.
Brianne: And so I want to rewind a little bit again since you’re talking about work. So it sounds like you’ve known about this for a long time, but it’s been changing over time in terms of the pain and stuff. So how did it impact school, you were missing it to get treatment, but then what happened after that? How was it? What was it like going into the work world?
John: So I think I’ve been blessed by being a programmer because it does support remote work. And if I get my work done, they don’t care. If I have a nurse coming to infuse my thing I can just work from home. I think actually the bipolar disorder has affected work way more. That came up, so I took an antidepressant in June of last year. And if you take it like an SSRI with bipolar disorder it basically unlocks the mania that you have, and the impulse control issues associated with that are super serious. I went on a conference and I got really pumped up just being around with a lot of really smart people and then through a comedy of errors I just ended up not sleeping for about three days and then after that, I couldn’t sleep. And I went to upstate New York and didn’t sleep for four days, so that’s seven days total, and I basically lost my mind. I had to be hospitalized multiple times and I had to come down to Austin, which is where I was working, and then be re-hospitalized because the medication that they put me on in New York was way too strong and not the appropriate medication for me to be on. So I had to take a month off of work, and then it came back and I was still partially symptomatic. It took me about two more months to really, no it took about four months because I got put on some bad antipsychotic medication that made me gain 30 pounds in a month, which is like insane, I just exploded. And then I got on lithium, which has been great, but I lost my job during that time. And I was probably going to lose my job to begin with because I got laid off with like 35 people, but that wasn’t really helpful for my mental state. So that was a big setback. And really getting to the point where… I just finished my first book since that manic episode last week. The hardest thing coming back from one of these manic episodes is your ability to focus and not be constantly just jumping from thing to thing and being able to slow down, and reading is probably the hardest thing you could do coming back from one of those things. Yeah, it really screwed up my professional career.
Brianne: Yeah, yeah. No, the timeline on that sounds really tough. And so before that… so that was like 14 or 15 months ago right?
John: Yeah.
Brianne: You said you were on an SSRI, so you had been put on that obviously not being aware of it? Like you’d gone in for some mental health treatment.
John: Right. I had no awareness that I was actually bipolar, I just knew that there was something up and I had anxiety, I had this chronic pain, and I had been depressed. But I got on this SSRI called abilify and that was actually the first time I never had that chronic pain from the fabry disease.
Brianne: Oh, really?
John: And it was like I was euphoric because I wasn’t in pain, so that added to my mania. And it was just… it was a train wreck.
Brianne: Well, and I can imagine… so in my own experience, which is not the same. But in my experience on the pain and mental health side is what you said earlier, it can be really difficult when you don’t want to get out of bed in the morning to distinguish between “my body is just aching and I am hurting and I am exhausted because I’m sick” and “this sickness is making my mental health nose dive, and that’s making it really difficult emotionally to get out of bed.” So I can only imagine what the flip side would feel like, where this thing that I’ve been feeling every day, maybe for a decade, is gone. That by itself would be really disorienting.
John: It was like the fiddler on the roof, like [singing] wonder of wonder, miracle of miracles! I was just… I was running around, and I was successfully dating for the first time in a really long time. It just bled into everything else and then it just wasn’t maintainable because I got the delusions of grandeur and the manic spending and all these things that were just… It’s weird, too, because I was still me, and people forget about that I think. A lot of people don’t really actually have the emotional machinery to understand what it’s like to have like a mental health crisis. It’s not like you suddenly turned into someone else, but at the same time I did things… like at the at the end of it, it was really bad, and I wouldn’t want anyone to have seen me like that. There are people who move, like change cities, after a manic episode and stuff because it’s so mortifying what they did.
Brianne: Right, in order to just start fresh, which is also really difficult.
John: Yeah, and at the same time, I’ve gotten to a point now after going to therapy and all of this stuff, I do feel like I have a better understanding of who I am, versus had a not gone through this. I think there were a lot of latent issues. I think I can look back and see myself having done bipolar things that I recovered from in the past and now that I’m able to get treatment, the flaws that I had before my episode can be worked on in a way that lets me direct the energy from bipolar in the right way. Because it is, like I have a strong ability to hyperfocus when I’m interested in something. And I do think that comes from the bipolar. If I can meter that in a way where I’m not staying up to like midnight working on something, that’s the good thing. And I think having a good partner is really crucial in that, I’m really lucky to have one. Yeah. I’m just rambling.
Brianne: No, it’s okay, it’s good. It’s all interesting. It did make me think of a question though, for kind of everything because I think about this with pain too. I think it’s really interesting and also difficult with chronic conditions, so diagnoses in general, to separate what is your personality and what is a condition of your biochemistry, basically.
John: Yeah, like you could get really nihilist about it and just think that everything is just emergent phenomenon from neurochemical impulses and no one’s unique, and we’re all just… I don’t think that’s actually like… yeah. It’s like sometimes you look at the moon and you’re like, “Oh, the stars are amazing!” And then sometimes you look at the moon and you’re like, “I really need to go to the bathroom.”
Brianne: Yeah, it’s all fine.
John: Right, and both of those things are okay. And sometimes you just need to be like, “This fucking sucks.” And sometimes you can get into the mindset where “I’m not my body and this will pass.” But both are valid and I think that’s one of the mysteries of the human experience.
Brianne: Yeah, and I think for me it mostly just comes up with negative self talk. Like I spent a lot of time being like, “Oh, I’m just really lazy!” Like, “I’m just a lazy person.” And then one day…
John: Yeah. And that doesn’t serve any purpose. When you bring yourself down like that. You’re not actually addressing what is something I can do to fix it, make it better, you’re just being like, “Yeah, I’m a piece of shit!” And then you just watch another six episodes of netflix. That’s not useful.
Brianne: No. But it’s also getting the information about why Iazy might be the wrong word if actually you have pain and fatigue. But once you realize and you can identify those things it’s like, “Oh, some days my body is miserable.” And all of a sudden I have really different information about how I can go out and take care of my body basically.
John: I do think that we do have a higher standard that we have to adhere to if we want to feel good.
Brianne: Yeah, what does that look like for you?
John: Well, that’s the frustrating thing is I’m not following these rules myself. LIke I can say what they are and I’m also human, so I’m drinking beer, but avoiding alcohol seems to be generally a very good thing in terms of reducing inflammatory responses and stuff. God, there’s so many flies on me. Okay, and I guess working out consistently, drinking lots of water, trying to avoid high sugar, these sort of things that are just like… everything in moderation, trying to have leafy greens and a balanced diet, sleeping more than you think you might need. And… [swats fly] oh I did it, Yes! Fantastic. I guess like you said too, I think one thing that’s really important for me is when I’m lying in bed some days and I’m really not feeling well, I kind of just take an L and I say, “Yep, today isn’t going to be a good day.” And not really getting myself too down for it and not saying that I’m lazy or that I’m less than. But it’s just like today isn’t going to happen. And I’m really fortunate to have a job that lets me work from home and I can kind of just lay back and not really focus and all those presentational aspects that make it so difficult. I think the worst is when you’re in a ton of pain and you’re getting dressed to go to work and you’re like, “I really don’t want to be there right now.” And I’m really blessed and I’m a little worried because I’m applying for new jobs because I really don’t like my current job for a lot of reasons. And I’m worried that it will be a trade off having to go co-locate somewhere because working from home is really good for being differently abled or whatever. I have a question, so are you… do you deal with disabilities at all?
Brianne: Yeah, so I realize that some people come in knowing my full back story and then some people don’t. But so my health situation is basically… it depends on which doctor I want to go with. So I could be diagnosed with fibromyalgia. But when I started to get a lot of nerve pain, it coincided with a toxic mold infestation in my house. But I have tested positive for a bunch of tick-borne illnesses. So basically I think I have a compromised immune system.
John: So basically they have no idea.
Brianne: Yeah. Like I have a compromised immune system, I’ve had low energy my entire life. And maybe two years ago things started to really tank. So I’m 31. So in my 20s, I was always kind of more tired than the people around me and I’ve always had swollen lymph nodes when I don’t sleep well, but I never… I worked, I actually wrote about this for Natasha’s project. I just had a really flexible job, and it was great. And once I got a job that wasn’t flexible anymore, which was about three years ago now, my health tanked very, very quickly. So as soon as I started going to a frankly easy nine to five job, and it was in the middle of some other stuff but things started to decline. And I was crashing as soon as I got home from work and then six months after that was when I started to experience nerve pain for the first time, which I didn’t even know what to call it. I couldn’t explain it. I was like, “I feel like I’m bruised, but everywhere?”
John: [laughs] Yeah, I feel like honestly I want to take a butcher’s knife to all of my joints. I just want to chop them off because when I like punch something or like squeeze my hands, it feels better than baseline. Like when I inflict pain, it actually feels like a relief from that nerve pain.
Brianne: So I think there’s something… this is something that I should look up if I’m going to talk about it. But pain has a gateway mechanism. So like, we’re only physically capable of feeling one pain at a time. And so when you do something that is acute, it will override your sensation of any other pain. But obviously it’s not… like there’s not a long-term version of that.
John: Yeah. It just makes you wonder what what sort of research… maybe there are going to be some medical advances in the next 20 years that could really figure some things out here. Because opioids definitely aren’t the solution.
Brianne: Right, right. And especially it’s so hard right now, because there are plenty of people who do live successfully without ever having to change their dose and it manages pain. And then there are people like you saying you don’t even want to go there. I think there are plenty of people who are like, “This isn’t the thing for me.” So we need other things. And nerve pain is tough. I think I’m interested to hear more about what accommodation might look like for you because I totally resonate with the flexibility thing, and I also… I normally have nerve pain in my legs, but last year with the toxic mold thing I had it in my forearms and I couldn’t type. Like I didn’t use my computer for four or five months because typing was so uncomfortable, just that movement, whatever it was.
John: Yeah, no, it’s one of those things were I can’t imagine it being significantly worse because if it was worse… like I’m getting prepared. Since it’s degenerative, I’m trying to prepare for the eventuality that I won’t be able to use my hands and I’ll still need to have a job.
Brianne: Yeah, and what that looks like. And so you’re looking at voice to text, probably to just ease off your hands too.
John: Right, exactly. It’s not exactly super user friendly…
Brianne: It’s not what it’s designed for.
John: It’s one of these things like, I got a new headset too for the same reason. The QC 35s don’t really pick up speech well, so I’m hoping this will improve things too. But there’s a machine learning aspect to it, you have to give it plenty of data to train with. I’m optimistic that it will get better, but… I guess in term of of other accommodations, I guess my dream job is a place that is kind of expecting me to work remote like two days a week and then three days a week I come into the office. I also abhor open office designs as I’m sure all of my programmer brethren do as well. So it’s just one of those things where if I’m going to come to the office, it’s because I’m going to be actively collaborating on everything. And if I’m working from home, it’s because I’m going to be head down, crushing bugs. I like dog-friendly offices because my dog Wallace is my pride and joy, and he makes me feel good when I’m not feeling great. And it’s one of those things like I’m not going to get him to be an emotional support dog, because there are people who actually have like PTSD or something. But I’m just like, I just miss my dog when I go to work and he can’t come. I don’t know if there are any other major accommodations.
The one thing I got really frustrated with, and this is just a small story, is I had an interview with microsoft. It didn’t really go super well, it wasn’t super well organized, and I was leaving the office and this guy needed to walk and talk with me because things were running late. And he told me that I wasn’t going to get the job and I should go back and study CS fundamentals. “I’ve written 14 compilers in my spare time…” The takeaway was I was supposed to try harder because he did all of this work in his spare time and it was… I really felt looked down on as being lazy. And really I’m not lazy, I have chronic illness and I’m trying to do the best, like I’m not trying to push myself too hard because I don’t want to throw myself into a bipolar tailspin. And I also don’t want to hurt my hands and have it be even worse to type. So it’s one of these things where I just really felt like I was told by this abled person how to go about living assuming that I was abled, and it was just really frustrating.
Brianne: Yeah, and also there’s a sort-of-spoken, but this unspoken expectation that you should be working your regular job and then also working your second free job, which I think is really common for programmers.
John: Yeah. Which I’ve already… I’ve contributed at least a thousand hours to open source, and I’m supposed to just keep doing more! And like, when does it end? I just want to get a job. I deserve a good job good, I’m good at what I do. And it’s frustrating to have to jump through these ridiculous hoops sometimes.
Brianne: Yeah, yeah. Well turning something that… it’s like health privilege is a term that we don’t use as much as maybe we should all start doing or could all start doing, of assuming you have free productive time.
John: Yeah, and all these jobs that are like “Are you are you okay with contract to hire?” And usually these contract jobs don’t provide healthcare. And if they do, it has to be great healthcare because if the deductible is $12,000, I’m going to cover a $12,000 deductible in the first month.
Brianne: Right. For some reason, I think because we jumped around from the cost of your medication. So insurance… so you must have been constantly insured forever? Although if you’re under 26, you could theoretically be on your parents’?
John: I am under 26. Thanks Obama. My dad’s a software engineer at facebook and I’m on his healthcare. And as soon as I turn 26, I’m kind of on a raft just floating, trying to find some company that’s going to save me.
Brianne: Right. Just a cool $300,000 a year.
John: Yeah, well, and that’s when these things were… have you seen this okcupid study? I went to SciPy in 2016, and they gave this study that showed the questions and they actually showed the data associated with the people who answered the questions, like one of the questions was “do you use drugs?” And it was yes, no, refuse to answer. And they effectively mapped that all of the people who chose refuse to answer were actually saying yes but they didn’t want to admit it. And in these “are you disabled?” questions, it’s “Are you disabled? Yes, no, choose not to answer.” And if you choose to not answer, a malicious actor could totally take that and say, “Okay, this person’s probably disabled. Let’s reject them.” And I think we have a little bit of a “it could never happen here” sort of mentality of “Oh well, it says on this sheet that we can’t use this data to fire someone.” But there’s actually like usually zero oversight into the people who are responsible there. And as soon as we have another depression, the first people that are going to go are the disabled people. And that’s the harsh reality. And unless there’s actual serious legal oversight and protections in place, I’m always going to put no. Because that just… it only exists to hurt you. It does not exist to help you.
Brianne: Right. Yeah, it’s super difficulty when you’re disclosing something that certainly feels like… not that it makes me a worse employee, but it makes me an employee that may be more expensive to hire or probably will be more expensive to hire. Even if I can provide value, which I think that I can, but…
John: Right, you just have to hope that they’re participating in an insurance plan that has a cost that’s amortized high enough. Like okay, if you’re working for microsoft then you’re just a drop in the bucket. But if you’re working for a startup that has a plan for 100 people, you’re probably not a drop in the bucket. You’re probably like 10% of the healthcare costs for a company with 100 people.
Brianne: Yeah, no. A small company in order to insure you… insurance, that’s so hard. The insurance and medication costs. And so what, we’re jumping around so much, but I realized… so with the medication, what difference… since you have relatives who started taking it so much later in life, do you know what that has been like? You don’t know.
John: It’s like how do you test against… they started me on the study before I was ever presenting lower kidney function or accumulation of plaque on my heart.
Brianne: You were asymptomatic. Or I guess those aren’t even symptoms. I mean I guess they are, but you don’t feel them.
John: Yeah, right. So this drug doesn’t cross the blood brain barrier. So there’s a reasonable expectation that it’s not going to help neuropathy. And really the symptoms have only gotten bad in the last year, in my opinion. I always felt like I was sore after workouts, more than other people. But I had not really a lot of ability to validate that. But not getting to the point where I have spurious pain in a way that’s really professionally problematic.
Brianne: Yeah, yeah, it sounds like it. It’s certainly impacting other parts of your life in a way that maybe it didn’t before. But it just felt like you were getting medication and that was the impact.
John: Right.
Brianne: Yeah, yeah. Bodies. I think that is also a really interesting thing of, and this also relates to mental health, like you say you’ve always felt like you maybe hurt more after workouts but there’s no way to know. I think this feature of we don’t have the tools to compare our own body experiences with other people’s body experiences…
John: Yeah, or what would it be like to even be conscious as another being, right?
Brianne: Yeah, you just can’t know what someone means when they say that they’re in pain or what someone means when they say they’re tired.
John: Right and yeah, I do think it’s unfortunate too because I think the nuance that you’re touching on is related to the fact that there is some sort of empirical scale of pain and within reason you should give everyone the benefit of the doubt and not try to induce comparison. But someone who’s a nurse and is triaging wounds is clearly going to see the person with the broken femur and treat them over someone with a bruised pinky toe. So there’s clearly an actual scale somewhere, and I think it can be really problematic to induce these numbers sometimes because usually it’s not a number system as much as high, medium, low. I don’t know.
Brianne: Well, there’s like directions too.
John: There’s pain that makes you want to kill yourself and then there’s everything else. If you’re in a level of pain that is making you suicidal then that needs to be addressed. And it’s not worth splitting hairs over how much pain that is, if it’s an eight or a ten, regardless. If a person is making a decision to seek ending their life over pain, that’s when you should be like, “Okay, that’s the highest!”
Brianne: And the timeline can also matter, so if whatever a six feels like to you, if you feel like a six for five years, that’s pretty different than feeling like a ten for 20 minutes.
John: Absolutely, yeah. And this is kind of related, but it’s also just kind of a rant. I get really frustrated by people who say stuff like, “Oh well, at least it’s not cancer.” And for people with cancer, the attitude is usually like, “You’re going to beat this.” And sometimes they do. And I don’t have the opportunity to ever beat my disease, unless maybe there’s gene therapy coming down the window but I’m not crossing my fingers for that. The best I can do is live with my disease and I’m sure, it sounds like you’re in the same boat, and it’s so frustrating to hear that. Yes, the trials and tribulations of cancers sound far worse than what I go through, but at the same time I’ve been doing this since I was eight and I’ve had to deal with all of the questions. Like when I was in school, I would always tell people this extremely personal thing that I had this disease and then people would forget, and I’d have to re-explain it. And it was so hurtful and psychologically taxing to have to deal with all of that. I don’t think it’s fair to ever compare the two just because it’s so different living with chronic illness than living with something that you get diagnosed with when you’re 45.
Brianne: And I think it’s… so now I’ve talked to I think at least ten people for this and I want to say this comparison with cancer has actually come up a lot, and in different ways, and I really really like the way you put it. But there’s something about the space that cancer takes up in our cultural consciousness and the narratives that it gets which I think is part of what you’re alluding to. It’s like there’s so many movies about it, and we just really understand it as a culture, like we know about it, and we don’t know about chronic illness. Like, that you could tell somebody and that they could forget or they don’t know the right thing to say and so they don’t.
John: Yeah, it’s like cancer could happen to anyone, but chronic illness is because you’re genetically inferior. And it’s almost like when people say stuff like “drugs and alcohol,” like your genetic inferiority and cancer is just more random. It’s just a random mutation, for the most part. Like that’s how cancer comes, that’s always how cancer comes. You’re just the first one with your mutation, that doesn’t make you less deserving some of it, but I feel like there is a sentiment of like, “Oh, if you have a preexisting condition, your parents shouldn’t have had you if it’s genetic.”
Brianne: Yeah, if they’re carriers, there’s like a eugenic, a secret eugenic…
John: There is like a weird sort of implicit eugenics to the way the narrative is framed around chronic illness versus cancer.
Brianne: And disability. Yeah, yes, okay, and especially right now. So this won’t be released for at least a few weeks, but at this exact time before the midterms the question of preexisting conditions is in the news again.
John: Right, and that’s another thing, like whenever this comes up it feels like I’m… I may make a post on facebook or a post on twitter to do something, but I’m not doing nearly as much as I could. Like I’ve campaigned for Beto a little bit, but that’s pretty much it. And having this disease induces more guilt about all the things that I could be doing to help myself out. But I’m not because I’m just trying to tread water.
Brianne: Yeah, well, it’s hard! It’s hard when this feature of your existence or your identity becomes political basically, or it is made to be political by the discourse. Which isn’t your choice.
John: I just don’t understand why socialism has become a dirty word. Chances are if you think being socially nice to another person is a bad thing, I don’t want to interact with you.
Brianne: Yeah, that’s not… it’s not great. And it doesn’t feel good when you’re like, “I definitely am one of the people who needs to be taken care, but I can contribute in other ways.”
John: I’ve had someone, I had a pharmacist in California who had prepared my drug say that there is no way he deserves to pay for my illness, and that I should be on medicare part b and paying 80% out of pocket.
Brianne: Ugh. Great, thank you for your opinion, pharmaceutical professional!
John: Guess what party he voted with?
Brianne: Yeah, that’s rough. I have a lot of opinions about that.
John: There are some people who are just really awful. And I guess there’s no… I just hope that more than 51% of people decide to be okay.
Brianne: Yeah, as far as these things go. Okay, so then that little pharmaceutical story brings me to I think my last question or series of questions, which is what has your experience been with the medical community in general?
John: Oh, I have a great story about this. So first of all, doctors are basically like 50/50 in my experience. Half the time they’ll just pretend to know what fabry disease is, and some of them do and are very interested. The ones who clearly actually have heard of the disease before are very interested because it’s very rare. The most direct connections I have are with nurses and I’ve had a variety of nurses in my life, and I’ve become personal friends with a lot of them. And I have a patient care representative through genzyme, who’s extremely helpful with handling insurance issues. Because they provide a lot of services to ensure that people are actually getting the drug because they’re charging the insurance companies so much for it. They have a strong capitalistic incentive to help us out as much as possible. On that note, I had moved from California and had to get an infusion in Washington. And since I’d left California my Californian doctor couldn’t legally sign an authorization for me to receive drugs in Washington so I had to get seen and it was kind of last minute. And there was a doctor, Dr. Ronald Scott, at the University of Washington, who I really don’t like. He was on the genzyme advisory board and is the head of the children’s clinic at University of Washington, and I called their office because he was the doctor I’d seen before I was living in California, and I asked to get seen because I needed to get my IV prescription signed and they said it was going to be a month before I could get seen. And I called my patient care representative who was from genzyme and said like, “Hey, I need this to be fixed.” She calls Dr. Scott directly, and I’m seen the day of.
Brianne: You’re like… okay.
John: Money, it’s straight up money talks in this industry. And genzyme… they care more about satisfying the drug companies than they do the patients. So, it’s broken and there’s like these hegemonical structures inside of medicine that really… like there’s a huge patriarchy related to medicine and pharmaceuticals that kind of prevents progress because there’s some really incompetent people at the top. But all in all, I guess the other interaction I had was with the outage of that drug back in 2012. But my general interactions have mostly been very positive. Most people are very understanding. And pretty much all of my issues, I’m very open about my mental health issues with the coworkers that I like and everything, I don’t consider it… like it’s something I’ll tell you if it comes up, but it’s not gonna be something where I’m going to announce it in front of a crowd. But I just own it, and people seem to respect that.
The medical industry is just like… the insurance companies exists to not pay out claims. And I could rant about that a little bit. It seems like these large insurance companies have these various sub-departments that all have a bad job at communicating with each other. And then they will call you through a proxy, you can’t call them back. And everything is like, “Oh, I forgot this step!” So you have to go back and fill this part. And I think they just, I think upper level management at insurance companies specifically hire people who are not good at their jobs so that they can like just attribute this willful malice to incompetence. Because they’re not actually… It is not in their interest to train their employees how to be good at their job.
Brianne: Like how to resolve problems for patients.
John: Right. Like if I have to directly interface with the insurance person, I have to be responsible for every single step and have every item notarized. And when I’m dealing with other issues, that’s the first thing that I’m going to not do because I hate filling out paperwork, it is the bane of my existence. And they get me every time by asking me to fill out some paperwork.
Brianne: Like on a technicality, or just doing it.
John: Just doing it. It’s really like I’m not a good person all the time and I just don’t do these things that I should do. But it’s like how do you fix that? I don’t know.
Brianne: How do you get better at bureaucracy?
John: Right, and how do you get better at checking off all the adulting things on your to-do list? Like I’m 25, I don’t want to have to deal with all these things already and I do. So it’s just like, it’s frustrating and I’ll get to it sometime, but probably not tonight.
Brianne: I think that’s okay, I think that’s like letting yourself off the hook.
John: Yeah, this is just getting to stuff that’s not really about… like it’s just general human stuff, but just keeping a to-do list where you have three small things rather than like… I think the easiest thing to let yourself do nothing is to write down all of the different things you need to do, because then you’re just going to do nothing because you see the immensity of the list.
Brianne: Yeah, the overwhelm. Yeah, definitely. I’m very deep in letting-myself-off-the-hook mode right now still, but sometimes you’ve just got to.
John: Yeah. I can’t speak for myself too much, but I can say my mother and my grandmother’s experience is markedly different than mine because male doctors, which are like most doctors, have a habit of diminishing the complaints of women. And if you go to these disability communities, you’ll often see that that’s the case across the board. That like, oh, if you’re a woman then you’re just hysterical and if you’re a man then suddenly all of your pain is validated. So I’ve definitely heard about that secondhand.
Brianne: Yeah, yeah, and in your own family. I think there’s also a really interesting piece of your story that because they identified the genetic cause of this before you were symptomatic, it would automatically give you credibility with doctors in a way. Where I can only imagine say your mom or your grandma going into the doctor and trying to describe it and they’re like… nope.
John: Honestly, I’d rather be in my situation. Where I know what I have, versus being in your situation where it’s still clearly in flux and they don’t really know what’s wrong with you. They just have sort of an idea. It’s nice to be able to do a genetic test and show that this is my bad thing that’s going on.
Brianne: Yeah, and do you feel… okay I do have one more set of questions and then we can wrap up. It sounds like because of the way that you found out and the way that you’ve been adapting, how does that impact your mental health in the present? So for a lot of people, I need to think more about this question, but for a lot of people it’s like they’ll start to show symptoms first, and then they’ll find out what’s going on. And there’s a grieving process of what you thought that maybe your life was going to be like. How has that looked for you?
John: Right. Well I’ve been living it for the last seven years or so, like my body’s just been slowly falling apart. And I think I felt a lot of grief at the end of the manic episode. That was something I had to deal with because it’s like I felt like I lost a part of myself for a really long time. And I think the fabry disease has always just been one of those things where I know it’s coming. And it’s kind of just been this sort of… for a long time when I wasn’t really super symptomatic, it was mostly just a reminder that I was mortal. But recently, it’s been more serious than that. And I’ve had to evaluate things like can I honestly say that it’s a good idea to get married to me? And things like that because I can’t actually give a satisfying answer for how I’m going to be in 20 years. On this current pace, it feels like I’m not going to be doing very well. So I have to come to terms with these sort of more adult questions now that I’m starting to feel like the first derivative and the second derivative for my pain are both… like it’s going in the wrong direction.
Brianne: Yeah, the rate of change.
John: Yeah. I can’t say that I… I can’t say that I think I have any… I think it’s more of just an acknowledgement that it’s starting to happen. And I’m optimistic that it’s a baseline that’s going to last for a while. That this is just going to be the worst that it gets and it’s not going to get any worse, but I have no knowledge of whether or not that’s actually true.
Brianne: Yeah, yeah. And I think something that can be really hard for me to remember is even recognizing like okay, I’m chronically ill and so I do know this one thing. Like nobody knows when they get married or have kids, which for me is a question, like nobody knows what’s going to happen. And I am married, and right after I got married was when I was the sickest that I’ve ever been. I was just like, “Congratulations! This is what our marriage looks like right now.”
John: Yeah, and that’s never easy on a partner.
Brianne: Yeah. And I’m certainly lucky that my husband is super supportive and he is a good caretaker when needed. But it’s like okay, I need caretaking. I’m 30 and I need to be taking care of sometimes, and not everybody needs that. But it’s also true that I don’t know what the inside of a lot of people’s relationships look like, and some people have unmanaged mental health stuff that their partner is managing, or some people have… other things are happening all the time.
John: Yeah, like at least your problems are codified, right?
Brianne: Yeah, so it’s difficult to navigate but that really super resonates with me as a question.
John: Thank you for asking it.
Brianne: Yeah, there’s no right answers that’s for sure. I think we covered the wide spectrum of things that I like to talk about. Has anything else come up for you or have you been thinking about any different stuff while we’ve been talking? It’s okay if no.
John: I don’t think so. No, I think this has been wonderful and I’m glad that I signed up to do this out of the blue.
Brianne: Awesome! Thank you so much for taking the time to talk to me.
[guitar riff]
Thank you for listening to episode 11 of No End In Sight! I’ve definitely got enough stories recorded to see us through the new year, so make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts.
If these stories have been resonating with you, then I would love to talk to you too. 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. You can get in touch by visiting NoEndInSight.co or by contacting me @bennessb on Instagram and Twitter.
And don’t forget I 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 share resources about building a business while prioritizing our health.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I just started working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.