Adriana E. talks Ehlers-Danlos Syndrome, finding a new balance after diagnosis, and unpacking your own internalized ableism.
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Transcript
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Quick update before we get started: This is the last of the interviews that I recorded in 2019. I’m really excited to finally be getting it out there, and I’m also excited that this means that work really is underway on our next batch of episodes. I’m so grateful to the folks who have signed up to financially support the show at patreon.com/noendinsight, and this week I want to thank Wingspan Health for sponsoring the episode transcript.
So far, I’ve recorded five new stories and I’ve hired Drew Maar, who you might know as @fibrofuckboy on twitter, as a new associate producer to get things running more smoothly. You’ll be learning lots more about Drew over the next couple episodes, so for now let’s travel back to the fall of 2019 when today’s story was recorded.
Today I’m talking to Adriana E about Ehlers-Danlos Syndrome, finding a new balance after diagnosis, and unpacking your own internalized ableism.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Well, I like to get started just by asking people, how was your health as a kid?
Adriana: Alright. So that’s kind of a difficult question because I thought it was normal up until I got my diagnosis and then I started thinking back, and I’m sure I can’t remember everything, but it explains a lot of things. I was delayed in standing and walking. I also was really physically just slow. Everyone thought I was just lazy, and my nickname when I was growing up was Eeyore.
Brianne: Oh, no.
Adriana: Yeah. All my teachers even called me that. It was like, you know, “This is their cute name for me, I guess.” Yeah. And then, I could always do random things like, bend things weird… like party tricks is kind of what we call it. And then, the last one would be that I always had pain, and I was always told that it was just growing pains. And it wasn’t until recently that I was like, “Wait, that’s not possible when you’re in your twenties.”
Brianne: Yeah. Yeah. You stopped growing. And so that one’s a really interesting one to me, partly… so I had growing pains that were growing pains, and I didn’t realize that it was such a common thing that doctors say to people who turn out not to be having growing pains. So what was that pain like? How did it feel?
Adriana: So I think it felt actually like growing pains, cause they were just random, everywhere, but I think they were more intense because of my condition. It kind of might’ve made it more difficult, so things were stretching and you know, being… or contracting or just doing weird things… joints being weird. So I think it was more that it happened more frequently with me, but they kept brushing it off. So at one point I just didn’t even complain about it anymore, and it wasn’t ever severe. It’s just like… yeah.
Brianne: Yeah, just uncomfortable. Okay. So, some discomfort and flexibility obviously, and then fatigue. And that was just how your body was. And I think… this comes up all the time too. I feel like as kids, we don’t really know how other people’s bodies feel, so unless it’s something that is obviously an acute crisis, there’s no reason to even think that something weird is going on. Okay. So was there a moment for you when things started to change?
Adriana: Kind of. I always… my health was always just inconvenient. I always was going to the doctor for things that I had… I have hypothyroidism and then I have anemia that comes back that I always have to treat. So I always thought something was up with my health, but they were so minor, and unrelated-seeming that I just brushed them off. But then it… my health took a dramatic turn. When I… two years ago, no, a year and a half ago, where I just… everything started going wrong. All systems.
Brianne: Okay, all at once.
Adriana: All systems failure. Yeah. All at once. It was one by one, but it was super quick, just dramatic decline in health. So, it wasn’t until recently, but I think I always knew that something was gonna happen to me.
Brianne: Yeah. Yeah. There’s like a, “Oh, wait a minute. These things that have always been normal for me, it turns out aren’t normal for other people.” And like, “Does that mean anything?”
Adriana: Yes.
Brianne: And so, just to back up for a sec, so you said you were hypothyroid and anemic, is that right?
Adriana: Yeah. So the overall, umbrella condition that I have is Ehlers-Danlos syndrome, but it comes with a lot of friends. It comes with a lot of comorbidities. So they’re… some of them aren’t directly linked yet. They found some correlations, and there’s tons of studies still being done. I say tons, but I really mean a few.
Brianne: Yeah, well, like a big one came out… a big paper about Ehlers Danlos came out last night…
Adriana: Yeah they’re still working on it.
Brianne: …or something. I just saw things about it. That it’s much less rare than people have been saying for a long time.
Adriana: It’s just not diagnosed, yeah. Because doctors don’t even really know about it.
Brianne: Yeah.
Adriana: But yeah, it comes with a lot of comorbidities that get diagnosed on their own, and nobody really puts together the big picture. So issues with my heart, just like… just random things that aren’t harmful really… things with my heart, they just kind of associated with hypothyroidism and brushed it off, and now they’re finding out that it’s actually a problem.
Brianne: Yeah. Okay. So it had been like… and also those are kind of easy ones, like thyroid problems in general and also anemia, so iron levels. They show up in standard blood tests. Right? So they’re things that people might pick up a lot earlier and like, “Oh, your thyroid, that explains all of your fatigue. Oh, same with anemia, same with your iron levels.” Anyway. So you said a few years ago was when things really started to change. So what happened first?
Adriana: So it was about a year and a half ago and it’s kind of… there was kind of like a wrench that was thrown into my finding out what’s wrong with me. And that was my trip to Europe. So, things started after that. So I kind of attributed it to the trip. Like maybe I caught a virus or something, or maybe just something was triggered from being over there. And so I didn’t really… I wasn’t really persistent, and it all started with swollen lymph nodes, just painless and, just annoying. They really were all over my neck and some of them in my face, but they weren’t huge and they weren’t… they didn’t feel anything like a tumor. So my doctors were saying that too. “Oh, you just got back from Europe. So it’s probably a virus that you caught there.” Ehlers-Danlos syndrome is also not really… lymph nodes don’t really swell. I mean, maybe for the comorbidities, but for, in and of itself they don’t swell.
Brianne: Right. That’s not like a classic symptom or something.
Adriana: Exactly. So that’s kind of a piece of the puzzle that really isn’t even solved. We just don’t know why that happened, but, then it continued with… they actually started getting better, and then it continued to… I started having shortness of breath. And I think that was just because of my heart thing that’s going on. And then I was super fatigued, but it was like… it was just a bone tired, like all the time where I couldn’t even finish a day of work. I had to go home early. I was just falling asleep, which is super rare for me. Cause I would work like 80 hours a week. I was putting my all into my job and having fun with it even too. So, I was…. it really brought up a red flag for me.
Brianne: Yeah. It’s drastic even if it’s hard to explain.
Adriana: Exactly. Yeah. But even my doctors at that point were still like, “No, it’s probably from your trip.” And I wasn’t… I was starting to fight back, “But maybe it’s not!” You know?
Brianne: Yeah. “That seems strange, but I don’t have any other ideas.”
Adriana: Yeah. But of course they run a bunch of tests on me, and they come back fine. Maybe some mild issues that are just negligible to them or just things that can easily be explained by hypothyroidism. Even though the levels were normal. They just wanted to blame it on that. And then all kinds of things… I don’t know if they actually just started, but… or if I just started noticing them.
Brianne: That’s a hard question in general. I just want
Adriana: to say. It is, yeah. really difficult to differentiate what’s what. So then I… my heart would have inappropriate tachycardia, which is like, when you’re just sitting and doing nothing and it just takes off. Yep. Or like, you know, POTS, postural orthostatic tachycardia syndrome, where you go from laying down to standing, and then your blood pressure drops, heart races, and you almost pass out. So that I started noticing more and more… that was happening. And then the pain also started in my joints, which then they thought it was… they didn’t think, but they’re like, “Okay, we’ll look into it a little bit more. We’ll go down, a lupus workup and just see if you have that.”
Brianne: Because of the joint pain?
Adriana: Because of the joint pain.
Brianne: I guess, and the fatigue probably.
Adriana: And the fatigue and some of the other symptoms that I was having. I had weird, like bleeding under my skin, like random bruises when I don’t remember hurting myself. And then also, petechiae, which are little red dots of broken blood vessels. They almost look like a rash. They were coming in. So things like that, that can also happen in lupus. There’s a lot of overlapping symptoms. That… they went down that route, and so I got put on treatment for lupus. Some tests were showing up a little bit abnormal that kind of were in line with lupus. Like an ANA, I had antibodies that were… but they were very low. So that could also be just… I naturally just have higher antibodies.
Brianne: Right or just inflammation. Cause it’s not a highly specific test, even though it points to lupus. Yeah.
Adriana: Exactly. Yeah. And then there’s some other specific, antibodies that are for lupus that are also kind of just barely positive, which could be just written off. Yeah, pretty much. So I went through a few rheumatologists because I was just not happy with the answers they were giving me, and just brushing me off. So it was my fourth, no, my third rheumatologist, who finally… he took me seriously, and he was hardcore going down the lupus route, and I kind of thought it was a lupus. I also had weirdness… redness on my face sometimes. Almost like a butterfly rash, which it still might be.
Brianne: Yeah.
Adriana: But yeah, he was investigating more of an autoimmune disease, like lupus or Sjogren’s, and so he’s the one who put me on Plaquenil, which is a treatment for lupus. And, he’s just like, “Let’s try this out. If it works, if it helps with the pain or if it does anything for your symptoms, and it should give you more energy. We’ll continue it and then we’ll diagnose it as lupus, because that’s a great reaction to a lupus treatment.”
Brianne: Right. So like, “If you respond to it… your blood work is not quite conclusive, but if you respond to the treatment, then we’ll assume, or like take away from that, that that’s what it is.”
Adriana: Exactly. Yeah. Cause lupus is so hard to diagnose also there’s no one test. So all these random tests that were looking a little weird, plus, you know, “Let’s try the Plaquenil.” He was ready to diagnose me with lupus. So I am still on that.
Brianne: On Plaquenil?
Adriana: So that was… yeah. That was a few months ago. He upped my dose because I think one of the other rheumatologists also had that idea, but I never filled it. I just went to him. So he upped my dose, and then was like, “Take it for a few months and come back and see me and then we’ll see if it helps or… yeah.”
Brianne: Yeah, like what’s happened, basically.
Adriana: Yeah. So, but I don’t think it’s doing anything and I haven’t seen him again yet.
Brianne: Okay.
Adriana: So I’m still in that area of figuring out what’s what. But then it was my fourth rheumatologist, who was the one who said, “Your joints are loose. They’re just weird.” And she was playing with my knee and my hips and stuff. And she’s like, “Yeah, this is really not, normal.”
Brianne: Yeah.
Adriana: And I think in my research of looking for what’s wrong with me, lupus did come up a lot, but then Ehlers-Danlos syndrome came up a few times too, but I completely dismissed it because I didn’t think I was hypermobile. I thought it was normal. I didn’t think I had stretchy skin, but I do. I thought everything was just me, maybe a little bit weird, but normal.
Brianne: Yeah. Well, all those descriptions, like what you just said, they’re still relative and both, actually for diagnostic, but yeah. If your skin is the only skin you’ve ever had, you’re not like, “Oh yes. I definitely feel…”
Adriana: Nothing to compare it to.
Brianne: Yeah. “I feel confident that this is much stretchier than other people’s.” It’s not until you find out that it is that you’re like, “Oh, okay. Yeah. I could see that.”
Adriana: “That’s weird.” Yeah. And I don’t think I also ever stretched my face skin, which is stretchy. And then I tried that once and I looked in the mirror. I was like, “Oh my God, I can see how that’s probably not normal.” But, you know, skin on my hand, I just would kind of play with, and it was stretchy, but I thought it was fine. And then my fingers bend really weird. I think I was told that by my grandma or something, but I just kind of brushed it off as her being older, so she can’t do it. Cause some people… they don’t have Ehlers Danlos and they are hyper mobile. So I just kinda thought I was that, but she didn’t actually diagnose me or even mention Ehlers Danlos syndrome.
Brianne: Okay. So she was just like, “Your joints are loose. That’s interesting.” Basically with no… not attaching to anything.
Adriana: Yeah. And she’s like, “Yeah.” So at that point I was having the pain. So she’s like, “That explains your pain.” She was not convinced that it was anything autoimmune, or anything that was under her realm at all. So yeah, she basically was like, “You just need to work out more, and then it’ll be fine.” And I was like, “But wait, what about my other symptoms? That are still bothering me and not getting any better.”
Brianne: Yeah, like fatigue usually doesn’t respond that well to exercise. No matter how many times we get told that it’s not true.
Adriana: Right, exactly. So, she totally was super satisfied with that analysis of me and that conclusion that she came to, but I wasn’t. And so she still was like, “Just try it. Then come back to me if you’re having problems, but if you’re fine, you’re fine.” Like, “You’re dismissed.”
Brianne: If exercising works, plus the Plaquenil that you’re already taking.
Adriana: Yeah. Then you’re fine. So… but I looked into it a little bit more cause like I said, I was super surprised that she said that, and Ehlers-Danlos syndrome came up again in my research. And I would always only look at actual studies. Subjective websites I always stayed away from, cause I didn’t want to turn into that person. That’s bringing in tons of papers of random websites to their doctor and self-diagnosing. I was really careful to try not do that.
Brianne: Also hard.
Adriana: It is also hard. Especially when you think you’re falling in certain buckets like lupus. It did look a lot like lupus, just the symptoms I was having and those weird… mildly weird tests. But the only thing that actually explains everything was Ehlers-Danlos syndrome. So I got… I came back to that and I was like, “I can’t be… can’t be that.” But then I actually looked into it more, and websites like the Ehlers Danlos society that actually know what it is, not just Google, which says it’s just hypermobility.
Brianne: Right.
Adriana: Yeah. And then I read all the comorbidities and the symptoms of them, and it just matched everything that I was having, all the problems I was having. And so I went back to her and I was like, “Okay, what do you think it’s Ehlers.. Do you think it’s maybe Ehlers-Danlos syndrome?” I sent her a message, I think, and then she got back to me and she was like, “It’s the same thing. Joint hypermobility and Ehlers-Danlos syndrome are the same thing.” And she reiterated that in her message. and I was like, but “I read it wasn’t.” I didn’t say that to her cause I didn’t want to be that person who’s arguing with their doctor.
Brianne: Yeah. Which has its own baggage associated. I’ve definitely been that person, and it doesn’t feel good and it’s not always… well, it’s usually not fruitful, so yeah. But, okay.
Adriana: It’s difficult.
Brianne: Yeah. Yeah, so she was just like “When I told you that your joints are hypermobile, it’s the same as if I had told you that you had Ehlers-Danlos syndrome, basically.”
Adriana: Yeah. And that goes to show how misinformed people are, even doctors. But that is not at all. That is one of the many, many, many symptoms of Ehlers-Danlos and the systems… it does affect other systems in your body. Pretty much all of them, between the comorbidities or just something weird happening from the disease itself, it’s… yeah. Yeah. It messes with you a lot. So I dismissed her as my doctor. I didn’t respond and I was just like, “I’m going to move on to someone else.” But yeah, I was happy with my previous rheumatologist who had diagnosed me with… or was trying to diagnose me with lupus.
Brianne: So number three.
Adriana: Yes. And he was… he took a blank piece of paper when I first saw him and pushed the computer screen aside, and he was like, “What are your symptoms?” And went through all of them. He was the only doctor who went through all the symptoms and listed them and wrote them down and was writing notes as he was asking me questions about them. And so, when I went back to him, he did that again but not as dramatic. He kinda knew some of the symptoms already, so it was only a few that I had follow-up questions about. And so he’s like… he was nodding a lot. He nods a lot, and so he was nodding, as I was saying, “I think it might actually be this. I don’t want to self diagnose, but it’s just… everything fits in this bucket.” And so he agreed. He’s like, “I don’t feel comfortable with diagnosing with Ehlers Danlos syndrome itself, but I do know that joint hypermobility isn’t always just joint hypermobility. It can come with other things.” And he’s right, and it’s understandable that he doesn’t want to diagnose Ehlers Danlos syndrome just because it’s kind of difficult to diagnose and really subjective. And it does take knowledge of the disease to diagnose it. And he just didn’t feel like he had enough knowledge to fully diagnose it. And he also wasn’t convinced that I don’t also have an autoimmune issue.
Brianne: Right.
Adriana: So he’s like, “Continue the Plaquenil.”
Brianne: Yeah. “Stick with it.”
Adriana: Just we’ll see how that goes. Yeah. But you’re definitely hypermobile, and I can definitely see that, that accounts for many of your symptoms. So I haven’t gone back to see him yet, but I did make an appointment with a geneticist who did diagnose me with Ehlers Danlos syndrome, the hypermobile type, but the jury’s out on whether I have the other types yet.
Brianne: So, you’re waiting on the actual genetic tests.
Adriana: Yes, exactly, for the other ones, but I don’t think I have any of the other types. So it’s probably going to come back negative, and then at that point he’s gonna just say, “Ehlers Danlos,” and then send, to all my doctors, a note because that’s kind of what you have to do.
Brianne: Yeah. You just go find someone who knows enough about the specific thing that you need them to know about, and like, as you have just described, you can go through a lot of people first. How has insurance been with going through a bunch of specialists?
Adriana: That is an excellent question. And I am extremely, extremely lucky. My boss has been very, very understanding, very understanding, and so I kind of am working more remote sometimes. So he’s been great, and I’ve been kind of working remote and also being more part time. And my staff have kind of been helping me too. They’ve been taking on some responsibilities. Nothing too administrative but just some of the things that… the smaller things that I would have to worry about normally, they just have been taking it on, and they’ve been great. They’ve been understanding as well… as understanding as someone without a chronic illness can be.
Brianne: Right.
Adriana: Yeah, so they’re doing their best. I can tell sometimes that they also have their own opinions about what’s going on, but anyway.
Brianne: Yeah.
Adriana: Since my boss has been so understanding that even though I’m part time, I’m still on the insurance. So, I am also on the platinum, which is the highest tier, and he pays for a ton of it. My premiums are, I think 180 a month, but if you go back and look at all my doctor visits, which are, I actually started counting it’s over 40. I think I stopped counting because it’s too much… too annoying.
Brianne: It didn’t… the list lost its meaning at a certain point. You’re like, “Okay, it’s a lot. I get it.”
Adriana: Yeah, I think I might’ve fallen asleep.
Brianne: Yeah.
Adriana: But it definitely covered my CT scans and MRIs and emergency room visits and all that… all my doctor visits. And I always had a copay and stuff, but very, very low copay, and my deductible is $250.
Brianne: Great!
Adriana: Yeah, I know. And some of the times they don’t even have a co-insurance that you have to pay, like a certain percentage they’ll cover. They actually cover a lot. So even a sleep study, one of my rheumatologists was like, “It’s a sleep problem, is your other issue.”
Brianne: Yeah, if you have fatigue.
Adriana: She sent me to a sleep doctor. Yeah. It’s yeah. Sleep Hygiene. So she sent me to a sleep doctor and h e kind of was like, “Why are you here?”
Brianne: Yeah. Good question.
Adriana: And I was like, “I don’t know. I don’t know.” But it turns out, I actually do have sleep issues, so… but he’s like, “I don’t know why you’re here, but we can just look into it and order an in-lab sleep study, but your insurance probably won’t cover it. And we’ll probably have to do the home one first, so, but we’ll try it.” They tried it. My insurance came back almost immediately like, “Yeah, we’ll cover it.”
Brianne: “Yeah, go ahead.”
Adriana: “We’ll cover in lab. That’s fine.” No diagnosis needed. They didn’t have anything.
Brianne: Right, right. Yeah. If the doctor was like, “I don’t really know why we’re looking,” then what are you going to put on the form? Like “tired.” God, insurance authorizations are their own bizarre quagmire, but…
Adriana: Oh, my goodness. Yes. And I actually am on both sides. I’m in healthcare too. So I’m on both sides fighting as a patient and fighting for a patient. It’s like pulling teeth.
Brianne: Yeah, I bet. It’s… yeah, I grew up in Canada, where there is socialized medicine, public health care. And I live in the States now, and it’s been such a rude awakening to have all of the burden of the bureaucracy that was never a part of it before, or was never a part of my experience.
Adriana: You never needed to think about it.
Brianne: No, no. And it’s… all of these things, like choosing insurance, I think two years ago, maybe when I hadn’t really been through as much of the chronic illness side of it, I was like, “I don’t know how to pick this. I don’t know what any of this means.”
Adriana: It’s confusing.
Brianne: Yeah, “I don’t know what’s going to be important to me.” And then flash forward to this year where I was like, “Okay, I know what I actually used last year. I know what I’m going to anticipate using in the future.” but it’s a lot of junk you have to keep in your head.
Adriana: Yep. Definitely. And, I don’t know anyone in healthcare who is like, “Yeah, I like our healthcare system,” which is what a lot of people argue who are for privatized healthcare. They argue that doctors get paid more, all that. Nobody likes it, not even doctors. Doctors don’t get paid more. They’re terrible.
Brianne: Yeah, well the billing systems are, right? The way the EHR impacts how doctors have to work is also a huge factor in doctor burnout.
Adriana: Exactly. Yeah. And I actually want to touch on that, because a lot of people. Rag on hospitals and clinics on how much they charge. It’s like “They should… it’s should be illegal to charge this much,” and all that, but what actually is happening is that insurances only reimburse a certain amount of what we charge them. A low amount, like 30%. It’s really low, so we have to up our prices in order to actually be paid what we should be paid and even then it’s still a little low. But we are not allowed to lower our prices for a patient… for someone who doesn’t have insurance. That’s in their contracts. If… almost all insurances have that within their contracts with a provider, that they cannot change the prices for anybody. They have to charge everybody at the same. Not many people really know that, so they get angry at the hospitals or clinics that are expensive. But we have to. If they find out that we’re charging different, they audit us, then they drop us, and insurances kind of talk. So then everybody drops us, and we can no longer see anybody.
Brianne: Right. You can’t take insurance because of trying to offer affordable care to people who do not come in with insurance.
Adriana: It literally can shut our doors.
Brianne: Yeah, cause that was one of the things that I just really had no idea about. Even if your insurance isn’t paying for anything, you will pay less out of pocket if you are insured. The main benefit of insurance is what you’re describing. When you have a high deductible, it’s just showing…
Adriana: They still will cover something. And that’s another thing, they don’t actually pay. So when you have a high deductible, and you haven’t met it, they don’t actually pay us. They tell us to write off the amount that they’re going to cover, quote unquote.
Brianne: Yeah. They’ve negotiated a price, and that’s the benefit, I guess, to the patient, but premiums can be really high. On the state marketplace in Massachusetts… I don’t know… one of the plans that I had, it’s like at least $300 a month, plus the deductible is like $3,500. Yeah. So you’re just paying so much money in order to pay for your care.
Adriana: Yup. Everybody kind of loses with high deductibles. We don’t get paid what we’re supposed to by the insurance, and you don’t get coverage like you’re supposed to by that insurance. So, it’s just miserable. It’s a terrible system.
Brianne: Yeah. It’s baffling, and I also… now I just want to rag on the system more. Cause what you’re saying you’re saying is a lot of healthcare professionals also don’t like it, right? And I had a conversation with somebody recently who… I think she was a nurse but she runs a home care dialysis company, maybe. So she is in the system, but she was like, “Well, don’t you just think that Americans would never go for a public system because they would lose their choice?” I was like, that’s…
Adriana: That’s like the opposite.
Brianne: Yeah. I’m like, “I don’t… What do you mean?” And she’s like, “Their choice of providers.” And I was like, “Well, when I lived in Canada, I lived in a city, so I had a big choice in providers. And now that I live in the States, I live in a small town. So I have a small choice of providers, and it has nothing to do with public or private healthcare.” That is a completely made up conservative talking point.
Adriana: It is. Yeah, it is.
Brianne: That has nothing to do with anything.
Adriana: It doesn’t make sense.
Brianne: No, no. They’re like, “Well, a public program will tell you which doctor to go to.” I’m like, “Okay.”
Adriana: It already… well, first of all, if that was a problem, it already does. If you’re on Medicaid, they tell you where to go.
Brianne: Yeah. But so does private insurance.
Adriana: Yeah so… but it doesn’t… it really wouldn’t restrict your providers at all.
Brianne: It’s just not a real thing, so it’s all a mess. Great.
Adriana: Yeah.
Brianne: Okay, thank you for listening to my rant about that.
Adriana: No problem.
Brianne: But, okay. So what we had been saying… so you were saying that your insurance is good as far as these things go. And so that’s been helpful. You did a sleep did a sleep test.
Adriana: And not only that, my employer is very understanding and accommodating of me. That is… both of those things are super rare with people with chronic illness, you know? And I feel terrible. I feel so bad that other people can’t actually do this. It makes me angry at our system too, again.
Brianne: Yeah.
Adriana: Just angry at everything.
Brianne: Yeah.
Adriana: But I’m also afraid of that there may be a point where I can’t work at all. Cause it’s getting harder and harder. Managing a chronic illness is a full time job.
Brianne: Yeah.
Adriana: It really… yeah. Like I said, over 40 doctor visits and that’s not including physical therapy and acupuncture, which I’m trying. It’s just exhausting, and then also having to do work… it’s just… while you’re fatigued already, it’s really difficult.
Brianne: Yeah. Yeah. It’s difficult. And it’s poorly supported and yeah, you’re lucky. Especially I think when people are in the position, so you were working full time, it sounds like, previously with the same employer, and you were able to scale back your hours. It’s… a couple of people I’ve talked to have been in that position and that’s almost the best case scenario.
Adriana: It is.
Brianne: Of like, “I have a good relationship with you already and you trust me and know that I’m competent. And if I can’t do…” however… I mean, you had said like more than 40 hours, but like, “I can’t work full time anymore, but what can I do a part time?”
Adriana: I kind of still do everything,
Brianne: Yeah.
Adriana: I think in those cases, the employer is really dependent on the employee, just in my case too. So, I have job security.
Brianne: Yeah, and that helps for sure. And so… okay, so you got the diagnosis from the geneticist and you’re waiting on the other results just to see what might happen. And you’re still taking the Plaquenil you said, but you don’t think it’s helping. So what do you think… I know you’re kind of like, “This is pretty new…” parts of this, but what does your day-to-day look like moving forward? Since Ehlers Danlos doesn’t have a specific treatment protocol, right? So maybe PT helps or whatever, as you mentioned, what are you looking at right now?
Adriana: It’s really difficult. I think that’s a little extra little bit that makes it difficult to live with because nobody knows about it. Nobody really knows how to treat it or how to manage it. Cause you can’t really treat it, treat it. So you’re doing a lot of the research yourself and you’re coming up with a protocol yourself. You’re kind of your own primary care doctor. Because nobody else is that invested in you to actually do this for you. Some doctors will look into it once… good doctors will look into it once you tell them you have it, just so they can help you. But it’s still a lot to know. It’s a lot of information. So I don’t think… I’m kind of in this area of thought where I don’t think I’m actually going to ever really get better. Especially like, I was diagnosed at 27… or no, that was… I was 25. And it’s declining rapidly. That’s not good for prognosis. But you can still try and do things to slow it down. So that’s… I’m doing everything I can to try and slow it down and help the symptoms as much as possible, and so it’s different every day. I know I have to take physical therapy… do physical therapy twice. I’m doing acupuncture once a week and seeing my doctors as they tell me to. But in between all that, I don’t know what every day is going to be like. It might be a great day. Sometimes I wake up feeling relatively great cause never perfect. But, some days I wake up, and I just can’t get out of bed,
Brianne: Yeah.
Adriana: Between the fatigue and the pain. So, it’s difficult and I did hire a caretaker, sort of. She’s kind of like a helper. She comes in once a week for three hours. She’s actually coming today, and she just helps me with cleaning. Yeah, and helps me with the little things about my health. How… you have to organize everything, and what are you doing at home for physical therapy? So she’s really, really helpful, and I always try and recommend to other people who have chronic illnesses, that if you live alone, cause I live alone. Or if somebody else doesn’t want to really be invested in this, then just look into hiring somebody. I know it’s hard for a lot of people cause they don’t work, too. There’s some people that will work for really cheap. I don’t want to say cheap because that’s kind of a bad word to use, but for really… they don’t cost as much. And there’s a lot of people who are understanding and want to do it just because they’re understanding. So I always just recommend just at least look for somebody.
Brianne: Yeah, see if somebody can help. Another thing that now I’m curious about is, there’s this, I think about work trading and timebanks and stuff. I wonder if there are models for that for chronic illness, for… because cost is such a barrier for so many people, but a weird thing about chronic illness is that it can happen at any time. So a lot of people who are sick, leave the workforce with a lot of skills who are like, “Well, I can’t work full time, but…” kind of like you just said, “some days I wake up feeling great.” It would be wonderful to be able to leverage that for help with physical things. I don’t know if there’s anything like anything knows of anything…
Adriana: That’s true. I never actually thought of that. Yeah, people are wasting their talents.
Brianne: Yeah. And that’s…. I don’t mean it in a like capitalism way, but just when you have skills and you have interests and you want to do things, but committing to an actual job can be… is more of a risk of burnout of, “I’m going to miss deadlines. I’m not going to do it.” But if anybody knows of any timebank model, now I’m really curious about it. It’s very commune-y, but somebody might be doing it. So…
Adriana: That’s interesting.
Brianne: But yeah, having help… yeah. Cause it’s stuff like cleaning, like you say, or food prep that can be really difficult.
Adriana: she does that too. Yup. And she just… it’s just overall… she’s also researching things for me and just really involved with my health and that…. even just that alone, if she didn’t do anything else, like clean or do food prep, even just helping me manage my health, it is… it’s just such a huge weight that’s taken off your shoulders because you’re not doing it alone anymore. Somebody is trying to actually understand what you’re going through and help you get through it. And I think just people really, really need that when you have a chronic illness. Some families aren’t up for the task of doing that. So. Finding someone else. Yeah.
Brianne: Yeah. Outsourcing. One thing that I think about a lot… you just said that you sort of become your own primary care practitioner in a lot of ways. There isn’t… this is sort of the job of a PCP, but we don’t really have case managers built in a lot of the times. So for people who have this weird kind of disparate symptoms, and it takes a while to try to put them together. And then even if you do put them together, it takes a long time to find a treatment that works or keep trying new treatments. There’s all of this work that goes on, that patients are doing and other people are probably… or there are people out there who might be better qualified than patients are at the beginning, right?
Adriana: Definitely. Yeah.
Brianne: And certainly more efficient than somebody who’s sick. And it also boggles my mind that that’s not something… that would make the rest of the system more efficient, and it’s weird to me that it’s not a part of it.
Adriana: Yeah, it is. And I definitely think everybody should have at least one person who is an advocate for what they’re going through.
Brianne: Yeah. Yeah. And so on the… not even really the flip side, but as another part of the daily life stuff, since you’ve been navigating the symptoms much longer than you’ve been navigating the diagnosis, have you done any experiments yourself? So you’ve been trying Plaquenil more recently, but I know a lot of people when they first get fatigued or when they first get unexplained joint pain will end up with dietary interventions and other lifestyle interventions. And did you get into any of that? Is there anything that’s worked? Anything that really hasn’t?
Adriana: I did.
Brianne: Yeah.
Adriana: I did try… it’s just so much, you know? I did. I’m still trying different things. I take different vitamins and a lot of pills, to just see if that will help. I take vitamin D, which… I’m in Seattle, everybody’s deficient here. So I take that. I take vitamin C to help my iron, which the doctor didn’t tell me to do, but I looked it up and everybody’s like, “You need to take vitamin C also with iron.” So I do that and just a bunch of other things that I think will help, like calcium and things that will help me sleep. And there are some lifestyle changes that I’m doing, but since the symptoms are so chaotic… they show up whenever they want sometimes, and then they go away and they’re not always the same symptoms. So they… it’s a little more difficult to try and figure out a good lifestyle for a disease like this.
Brianne: Oh yeah.
Adriana: You have to do the best you can, but it’s just hard. I mean, I’ve been trying to eat different things, to see if that helps some symptoms. I’ve been trying to be more active, which is really hard. That’s like the hardest thing,
Brianne: Yeah. Of course.
Adriana: But it’s hard to tell. I could not tell you right now that this has been helping or this has been helping. The only thing that I can say for sure that makes things worse is lack of sleep, and I do have insomnia that’s really difficult, which is great. I saw a sleep doctor, so he’s kind of helping me out with that. And he’s giving me a medication that isn’t as strong as Valium, to try and help me sleep. And it’s been helping and I’ve been noticing that the days that I get good sleep, I feel much better. Usually, not always, but usually.
Brianne: No, I relate to that. That’s… I feel like I’ve said that to people so many times. Sleep is the only reliable connection with how I’m doing. And still, like you just said, I could have a really good night’s sleep and have a shitty day, but good days pretty much always follow good nights of sleep, and bad night of sleep, definitely going to be a bad day.
Adriana: Yup. Exactly.
Brianne: And then it’s hard. Cause stuff like diet say… cause I’ve been down a lot of diet rabbit holes to try to figure stuff out, and there’s never any connection. Maybe I feel like my baseline’s a little bit better, but I also seriously wonder how much of it is not being worried that what I’m eating is making me sicker.
Adriana: Yeah, there’s two sides to it.
Brianne: The mental side of it, of the worry that I’m doing something wrong and that that’s contributing to how I feel… eating paleo or the autoimmune protocol or whatever… doing that and doing that pretty strictly for a couple of weeks, I’ll always be like, “Okay, now I can let go of the worry that food is causing me problems.” But I have no idea if my baseline is any better. There’s no evidence of evidence of that one way other.
Adriana: Yeah, it’s hard. It’s impossible to tell. And even…. and also it’s hard to make all these changes in your life and stick to them. I tried the autoimmune protocol, but I never… it was so hard for me to stick to it just because it’s not something I did before, and I’m also changing this and this and this and this. And so it sometimes… it’s so easy to fall back into your old life, so to speak. It’s difficult to change everything and then adhere to everything cause it really does change your whole life.
Brianne: Yeah. And I think that’s one of the places where if it’s obviously making a difference, it’s so much easier. So the first time that I did a really kind of intense dietary intervention, I had really bad eczema all over my body. I was scratching until I bled all the time. Whatever my doctor was giving me wasn’t helping. And so I went on this intense diet and it worked. It totally cleared up the eczema. I it was ruining my life. It was just so bad.
Adriana: That’s like a dream. When you find something that actually is helping, it’s amazing.
Brianne: And the connection was so obvious. It was so easy, and so I was following that diet pretty strictly for quite a while. And that situation, it was like, “Yeah, this is a no brainer. Not feeling that way is worth not eating bread or whatever.” And then slowly I brought stuff back in, and the skin problem didn’t come back. And so I have a different moderated diet now, but nothing else has ever felt that way for the rest of what is up with my body. I have nerve pain, and I have some other stuff going on. And nothing’s ever had such an obvious impact, and so nothing has ever been as easy to follow as that was.
Adriana: Well, that’s great. I mean, it’s little victories, one victory at a time. You can’t conquer the whole thing at once.
Brianne: No.
Adriana: It’s a long process to conquer things, but once you get one, it’s amazing. It’s this great feeling.
Brianne: Yeah, like, “This is a helpful thing. I will do this helpful thing.”
Adriana: “I will continue doing this.”
Brianne: Yeah. And so then related to all of the different things that you can try, have you gotten very involved in any online spaces around chronic illness?
Adriana: I actually, yes. I am definitely involved in a lot of them. I’m not… I don’t do social media really, so I’m not all about being on there with my real identity, so things like Reddit where you have a username. That’s kinda how I communicate, and things like even the Ehlers Danlos society and certain groups that are here in Washington… I just still have a voice, but I just don’t want to really put my identity out there just yet. Not just yet.
Brianne: Yeah. And there’s two sides of it cause there are definitely people who are doing advocacy stuff, which is great, and I also do not think that everyone needs to do that cause it takes energy. And then there’s also… yeah, the support group side of it, which I think anywhere can do and could be good and bad. Different spaces have different energies.
Adriana: Yeah.
Brianne: That are sometimes really helpful. And sometimes, really like, “Okay, that was a lot of whatever
Adriana: perspective that was.” “I’m stepping back.”
Brianne: Yeah, “I’m ready for a break.” I just joined a bunch of new chronic illness related Facebook groups, and in some ways they are the worst because whatever it’s for, there will be people naming really normal experiences. The example that I like to use is like, “Oh, coffee makes me really wired. Is that caused by this condition?” And you’re like, “No, that’s just caused by coffee.” But there’s so many posts of that kind of thing.
Adriana: Yeah.
Brianne: It’s exhausting.
Adriana: Are you just rolling your eyes?
Brianne: Yeah. And you’re like, “Okay, I don’t… I get it. I have questions like this too.” I’m sure some of my posts come off this way, but online spaces can be overwhelming with…
Adriana: have the exact same symptoms as me, and ask those questions. And that’s super unrealistic, but when good questions that relate to you come about in those forums and stuff, it’s awesome. Like things on, like I said, Reddit… when somebody posts a question like, “Is this normal?” And then people are commenting. I have to go through all the comments. I have to see what everybody says. And then there’s also a lot of contradiction in the comments. And so you kind of have to come up with your own answer to that question, but it’s nice to hear all those opinions and, yeah. And so like I said, I’m not on social media. But I think… this is… this podcast is the start of me actually really getting out there. Cause I just see a lot of people who are just struggling to get a diagnosis still, which it’s just such a grueling process, and some people don’t even get their diagnosis. And I was lucky enough to be within the healthcare system to know what’s what, to know, what to fight for who to go to and all that, but not everybody has that knowledge. And I think it’s really, really important to spread as much of that knowledge that I can to patients, but also doctors, who just… and the good doctors are the ones who know that they don’t know something, and they continue about it. It’s the bad doctors who have the mugs that say, “Don’t confuse your Google search with my medical degree.” I hate those mugs.
Brianne: Oh my God. Yes.
Adriana: So yeah, sometimes we do know things more than you. You don’t live with this.
Brianne: Yeah. And also, it was probably covered for like half an hour in one lecture in medical school, and then if you never saw it during your early training, you just don’t know about it. That’s not… it doesn’t. Ugh.
Adriana: And you know, doctors like that actually make it worse than people think, because sometimes they get so upset at that, or just, they need to validate their knowledge, that they go against what you say that you found out about… that they make it an effort to say you’re wrong, that your Google search is wrong and I’m better. So that becomes another problem. And then I just think doctors need to know. That’s what continuing medical education is for, so you can change your opinion on things. It doesn’t have to be the same your whole life.
Brianne: Yeah. Yeah. And I… cause I’ve been… you were talking about systemic stuff earlier, and I’ve been thinking a lot now, cause this is like my past 50 interviews. So I think by the end of this… I’m doing an interview sprint right now. I’ll be close to 70, and I’m at a point where I’m like, “I would actually love to start talking to doctors about the pressures that make it so difficult to handle chronic illness in general.” Cause obviously PCPs aren’t set up to take a full the history. They have 15 or 20 minutes with you once a year. And when you show up with chronic symptoms, that derails their whole day. And that’s not their fault. There are so many other competing pressures and to just get a better understanding of all of the things that are happening behind the scenes. Cause I think people who aren’t embedded in the medical system at the time when they get sick, have this idea that it works the way that we see on TV, like the way that it looks on…
Adriana: Like house.
Brianne: Yeah. House or Grey’s Anatomy or whatever that… if your doctor is good, they’re going to figure out what’s wrong with you right away, and that’s just not realistic.
Adriana: No, and it’s not going to take one hospital visit. It’s probably going to take many, and you’re the one who has to put the puzzle pieces together, just cause you’re going to get a different doctor every time. And yet doctors… they do have a defense in this whole, struggling to find a chronic illness or get a diagnosis, and it is how they are trained in medical school. That’s why people with Ehlers Danlos call themselves zebras.
Brianne: Right.
Adriana: They learn a phrase in medical school which is along the lines of, “If you hear hoof beats behind you, don’t assume it’s a zebra. Assume it’s a horse. Go for the more common diagnosis, not the rare ones.” And they kind of drill that in too much, to the point where doctors just don’t believe they could ever get a rare illness in their clinic. And they could, and they will. Sometime in their career, they’re going to run into someone who has a really rare disease, someone who has a really, really rare disease that you not in a million years could have ever guessed you would have ended up with a patient who has this certain disease. But it’s drilled in a little too much to just ignore rare illnesses.
Brianne: Yeah. Yeah. And I think it’s also compounded by all of the tendency to assume that anything vague, so unspecific pain or fatigue or whatever, is a mental health problem. One question that I have that I don’t think there’s good data on really, is if we looked at every single person that went to their PCP with that kind of complaint, so vague pain, fatigue, I really sincerely wonder what proportion of that population would be successfully treated by being treated for depression and anxiety. Because most people that I talked to… almost everybody, that is the first step. They’re like, “I went to the doctor. I was in pain. I was tired. They told me to go see a therapist and/or to take an antidepressant. And also didn’t offer any other testing.” So they were so confident that this was a mental health problem that they weren’t like, “Okay, let’s look at both at once. Let’s consider that there might be a mental health component, and let’s consider that there might be a physical component. So we’ll run some labs and also maybe try this antidepressant or whatever.” And that’s hurting people.
Adriana: It is. It definitely is. And then sometimes when the person comes back and says, “It’s not helping. I’ve been on this antidepressant for a long time, it’s not helping a lot of my symptoms.” They kind of, then at that point, just think the patient is making things up, that they’re a hypochondriac, and they need to be treated for that. Yeah. They don’t go to like, “Maybe they’re telling the truth. Maybe I need to look into this a little bit more.” And especially with the whole awareness of mental health, which is great. I mean, there’s… people are getting aware that depression can affect anybody, and it’s super common. So it’s great that doctors are also diagnosing that a little bit more and catching those signs, but they need to know when to differentiate, I think, a true mental illness… an only mental illness from mental illness with chronic illness.
Brianne: Yeah. Yeah. It’s just that part because no part of me is like, “People aren’t really depressed. Everybody who’s been told they’re depressed is actually chronically ill.” I am not trying to make that claim. It’s just that… it’s the differentiation process that’s so strange to me because it just doesn’t seem to happen with most people, at least initially. And that’s weird. So I’m like “What proportion of people are actually helped by this system?”
Adriana: Yeah.
Brianne: Because obviously the people… I’m biased, because I’m only interviewing people who eventually found out that they were in fact chronically ill, so how much of the population never lands there? I don’t know, but I’m really curious because there’s all of these things that contribute to doctors just not hearing people or not believing people or not seeing what’s happening and that’s hurting people.
Adriana: Yeah. Especially if they already have a mental illness. I have anxiety, and I’ve been diagnosed with it. I’m on medication for it, and so that was a hindrance in my search of finding a diagnosis because they wrote it off as anxiety. Some of the pain you feel and the fatigue, you just… which kind of boggled my mind cause like I said, I was like, “I’ve had anxiety for years. For more than 10 years. And I’m on treatment for it. Maybe don’t assume it’s anxiety, maybe try and think of something else.”
Brianne: Yeah. It didn’t all of a sudden morph into having all of these other new symptoms after being relatively successfully managed for however long, and if it did that still a problem that should be looked at.
Adriana: And taken seriously.
Brianne: Yeah. Yeah, all of that stuff. Yeah. Is there any big stuff about chronic illness that you’ve been thinking about, or that you’ve thought of while we’ve been talking that you want to make sure that we talk about today?
Adriana: So another thing that would be great to just touch on is the misunderstandings that happen to people with chronic illness from people who don’t have chronic illnesses. And I am, I have to say, I’m not innocent at all. I thought all the stereotypes before I had a chronic illness. I wasn’t the kind of person who’d be like, “That person totally isn’t handicapped,” and just go up to them and yell at them. But I had my prejudices and what I thought, and I had no idea that I had no idea. That’s how much I didn’t know what it’s like to have a chronic illness. And like I said, I didn’t antagonize anybody, but I still feel bad for thinking the way I thought. And just being prejudiced against people who actually are sick, they just don’t look sick. And that’s… with invisible chronic illnesses, it’s even more difficult, cause they just… “You don’t look sick.” “Okay. That’s great.”
Brianne: Yeah. Classic.
Adriana: But we really are sick, and you don’t see us at our worst because we don’t want to come out at our worst. So you see us when we’re okay. So it looks like we’re fine when we’re not, we’re really struggling. And for me, I don’t want my staff to know. I don’t want my staff to know that I’m dealing with this, and it’s really difficult and… both mentally and physically, and I can see that they are starting to get sick of it. That me being sick… they don’t want me to be sick anymore. They want me to be in the office, and they’re getting impatient with me, which I cannot blame them, like I said cause I was that at one point, and people need to get on with their lives. So them being a little frustrated that their manager isn’t onsite always is understandable, but just it’s difficult for me too. It’s difficult for everybody. And then I think it’s starting to get to the point that they think I’m being dramatic and exaggerating how I actually am, because I do such… I do put a lot of effort into them not actually see me even a little bit bad, and even if I am in pain that day, I cover it up. I don’t want them to see that. So there’s problems any direction you go with a chronic illness, and I think people without chronic illnesses need to understand that. It’s difficult though. You can’t explain it to everybody. How do you…
Brianne: Yeah, and sometimes you don’t want to. Yeah.
Adriana: Yeah, either it’s too much to talk about your illness or it’s not their business… I don’t…
Brianne: Yeah. And I think that some of the tension is… it would be really great if… whoever, all of the people that I need to interact with in my day to day life, just had a baseline understanding of what was going on, and it would be great if they could get that baseline understanding somewhere else. Yeah, And that somewhere else doesn’t exist right now.
Adriana: It doesn’t.
Brianne: If someone’s really dedicated and curious, you can read a lot of writing on the internet, you can find a lot of blog posts, and you can kind of piece it together, but there’s not like, “Oh, you know, just watch this movie, and this character is a really good representation of what it’s like.” Or a character in a TV show. They literally don’t exist. They don’t exist as just positively portrayed people who have fluctuating health. It’s not a thing. And that’s why, like you were saying, you didn’t know what you didn’t know. I feel the same way, and it’ll be about small stuff too. Right. I remember having an attitude about people who would only take the elevator one floor who looked healthy. It’s so small, and now I mean, maybe I would still have that as a reflex thought, but I would immediately be like, “Okay, you know that that’s not a real thing. You’ve been that person.”
Adriana: It’s difficult. Even with a chronic illness now it’s difficult to kick those habits, that immediate thought of someone in a handicapped spot who looks fine, that immediate thought of. They’re abusing the handicap spot, just pops in my head. But yeah, I think about it. I’m like, “Wait, they actually probably are sick.”
Brianne: Yeah. I know better now, but it’s so entrenched. And it’s so in the culture that… even that, what you just said, I feel that way too, of like, “Oh my brain still wants to think that.” And I have to actively… it’s an active on learning process, and that’s from my own experience and from talking to so many other people, but your healthy colleagues or my healthy even family members, they’re not having these experiences that are constantly forcing them to confront their bias because experience again, it’s not there.
Adriana: Yeah, I mean, healthy people just don’t care. Why would they care? It doesn’t affect them. So, they just don’t care. Who is going to be like… what person, who has no family member or friends who has a chronic illness, is going to look into chronic illnesses? Especially if they don’t have one too. They just don’t. That’s also understandable. We do live in a culture that’s kind of more, “leave the sick and poor behind.” That’s how we live in the United States. So that is ingrained in everybody. It’s not as dramatic as, “just leave them,” but overall the attitude, as a society, that we have towards sick people is kind of just, “Okay, let me get on with my life and just leave that behind.”
Brianne: Yeah. And there’s also… I think in both cases, there’s definitely a kind of subtle assumption that if you’re experiencing this, then you brought it on yourself. Like you could have done something to prevent it. Who knows what it is, but I mean, this is also the getting unsolicited advice from people that’s when it really rears its head. You’re like, “Oh, they think that I just am not trying hard enough to be better.” It’s underneath there.
Adriana: there And like I said earlier, it’s a lifestyle change. It’s changing everything. And to be expected to adhere to that, to be as proactive as you possibly can be all the time, is something that people with chronic illnesses, need to understand. It’s something that I’m still working on too. But you can slip up. You’re human. You can take that break. You’re not lazy for just… you have so much on your plate, and you just want to do nothing, even though you feel okay. That’s fine, and you need to take that a little bit because otherwise you would never have that. You just would never feel okay. You’re always going to either be stressing about not doing anything or not being proactive. You’re always going to stress about that or you’re always going to be sick, you know?
Brianne: You keep crashing.
Adriana: Yeah, you do need time to yourself, that good time. So don’t take that away from yourself. Take that break.
Brianne: Yeah, yeah. Take lots of breaks, and I also really struggle with not feeling bad and not thinking that it means something if I choose to rest before I’ve hit a wall. But it’s a process for sure.
Adriana: Yeah. And it looks like… to other people that you’re just being lazy too. Even people as close as your parents or your wife or husband, a lot of… even them don’t understand what you’re going through.
Brianne: Yeah. Yep. That’s at the heart of it. Oh yeah. There’s a lot. There’s a lot that I just want everyone to know. The way that… I probably use this example a lot, but I don’t think that it’s fair to compare chronic illness to cancer, for example, but I do think it’s fair to compare public awareness about the experience. And I think that’s one of the things. Of course there’s a lot that the general public does not actually know about chemo works or how radiation works or whatever. But there is a baseline level of understanding in the general population that you kind of know what someone’s going through if they’re going through cancer. Again, with tons of misconceptions, I’m not saying that…
Adriana: No, I’m with you. I totally agree.
Brianne: There’s so many movies, and it’s in so many TV shows. And if someone that you work with, for example, gets cancer, most colleagues will have some idea of what the appropriate response might be.
Adriana: They’ll be more understanding and…
Brianne: And they’ll still expect it to have an end point, which is part of the difference.
Adriana: Yeah. And you know, a lot of times cancer does have an end point in one way or another. But, yeah. And so a lot of people are also used to that, since there’s so much cancer awareness. They’re used to you being really, really sick, but you’ll get better. That’s why they get so tired of hearing that you’re still sick.
Brianne: Yeah, you’re not getting better. Like, “I don’t know about anything where you would not get better, so you must be doing something wrong.” That’s the thing. Yeah.
Adriana: And, I also, at one point they thought… they thought it was so many things, and at one point they actually kind of thought it was Hodgkin’s lymphoma, which is a type of cancer. And it’s a type of cancer that’s extremely curable. You go through chemo, maybe for six months or however long you need it, and then you’re done. And it barely ever… rarely ever comes back. So, that would have been great for me. Like I told my mom, I was like, “Mom, I’d rather have cancer,” which sounds horrible to anybody hearing that, even myself.
Brianne: Yeah.
Adriana: That’s such a faux pas, you know, “Don’t wish that on yourself cause you never know what you’ll get.” But I’m like, “Yeah, but I still… I actually do wish that.”
Brianne: Yeah.
Adriana: Because I would have gone through six months of misery, but then I’d have been fine and move on with my life. But this is not the case. This has stuck with me forever.
Brianne: Yeah, yeah. And I think it’s hard to… it’s easy intellectually to say… whenever we try to compare our experiences to other experiences, intellectually, we know that that’s not a real thing that’s happening, but it doesn’t change the feeling of like, “What if I had just had a different problem?” There’s something to be like, “You know what? I accept it’s going to be hard. I have to… I’m going to go through something hard with my health, but what if it were just a different thing?” I think that’s really… again, intellectually absurd, but emotionally, of course, of course, you go through that because it’s really hard to feel shitty every day or maybe not every day, but unpredictably many days every week.
Adriana: That’s a really hard part too. You just don’t know when you’re going to feel okay, and people will get upset that you’re constantly canceling. They think that you’re just blowing them off and work gets frustrated, but you just don’t know how you’re going to feel any given day. And it’s difficult.
Brianne: Yeah. Yeah. And that’s like, the heart of it is the like every day is going to be like that. Cool. Yeah. Whatever, this
Adriana: This great.
Brianne: Thank you. Thank you, health determiners.
Adriana: This is awesome.
Brianne: I think we’ve covered most of the big stuff, that I usually like to talk about. So thank you so much for sharing your story with me and chatting with me in my… I’m in a weird little blanket fort today, just to anybody who’s listening.
Adriana: It’s a pretty blanket.
Brianne: Yeah. Yeah, this is… it’s nice. it’s warm, but it’s good, but thank you.
Adriana: Well, thanks for having me.
[guitar riff]
Thank you for listening to episode 69 of No End In Sight!
You can find me on twitter and instagram @bennessb, and you can find space to talk about your own experiences with chronicillness using #NEISVoid on twitter and a little bit on instagram.
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Thanks for listening.