Episode 67 – Valerie

Valerie, a woman with curly black hair and glasses smiles at the camera. There is a stylized purple hexagon framing the photo.

Valerie Novak talks fibro, POTS, borderline personality disorder, diagnostic ambiguity, and using mobility aids when your abilities fluctuate day to day.


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

So first off, I am obviously still not on a regular schedule and I want to apologize for that. My body has been especially cranky since the end of March. It is what it is. 

Today Im talking to Valerie Novak about fibro, POTS, borderline personality disorder, diagnostic ambiguity, and using mobility aids when your abilities fluctuate day to day.

This was recorded back in December before the pandemic so if it seems like we are disconnected from current events thats why. I have two more interviews recorded pre-pandemic, so there will probably be a tone shift after that. 

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.

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Note: The following interview transcript was generated automatically, and it will be updated as soon as we have a chance to edit. I’m so sorry some pieces are incomprehensible.

Brianne: okay, well then I like to get started just by asking people how was your health as a kid?

Valerie: Mmm. So I think we may have talked about this a little bit, before, and it’s always a weird question for me to try to answer. because I, I guess I just didn’t really UN until really recently. Maybe even this year. The first time somebody asked me that, I don’t think I had ever really thought about my health prior to like me starting to take care of it myself. except for my mental health. I had. Very, very, evident, kind of obvious, mental illness when I was younger in my teenage years. but when I go back to being a kid, I was always, my parents always kind of joked, and I guess my siblings too. always jokes about me being a hypochondriac because I was always thinking I was sick or feeling sick. and was considered very dramatic. And when I think about it now, there are, there is some truth to that. Like I, they always tell this one story about, when I got really scared because I thought I had a cancerous mole on my face. And it ended up being, like a grease burn because I had had been like cooking bacon or something and got like, popped in the face. But I was convinced until this burden went away that it was a cancer small, you know? and so like, I definitely was. Dramatic, but I think part of that stems from the fact that I, I just generally did always feel unwell in some way. and so, I’m sure we’ll get into this later, but I know we’ve talked a little bit about with pots, kind of the, the, the dizziness and the, the, the shaking. And I remember, I have a very distinct memory when I was in about fifth grade. And, I was like a cheerleader for a little football team and we were practicing a routine. And I would have these like shaking fits where I felt like I couldn’t hold my body up. And I feel like right around this time, Michael J. Fox had been diagnosed with Parkinson’s. And I remember going to my mom and telling her like, Oh, I think I have Parkinson’s because I all the time I will randomly start shaking and I can’t control it. And not being like one of those things that was talked up again to, Oh, Valerie’s being a hypochondriac. Valerie was being dramatic. And so when I look back on it now and I’m like those things, I, I think I was doing the best I could to try to figure out how to tell people. I felt like something was wrong by relating it to all these other things that I saw on the news or I heard people talking about because I didn’t know exactly how to explain that. I just didn’t feel right. but then

Brianne: didn’t mean anything by themselves. And so trying to describe them didn’t really make sense, but relating them to these other actual problems that you knew about, because pots is hard. We’ve definitely talked about that. Like it doesn’t occur to you to go, Oh, every time I stand up my heart races, like who notices that? Especially as a kid who doesn’t know that that’s the thing to pay attention to.

Valerie: So when my mom, you know, explains to me what the guy from back to the future has, and she explains it as well, you know, he can’t control his muscles or something like that. And then I’m, you know, I’m like, Hey, that happens to me all the time in my brain. That’s a connection that, you know, I make. but then the first time I really remember being, Sick in a way that was really taken seriously, started when I was in sixth grade. I started to get really bad migraines. And, this was a time that was like really scary for my parents because it’s just. I mean, I don’t know how often kids get headaches in general, let alone like the kind of migraines where, I mean, these were the kinds of migrants where we had to close all the curtains. I would just sit under the blankets in my bedroom and cry until I fell asleep. It didn’t, no, it didn’t matter how many Tylenol I took. It didn’t. they just wouldn’t go away. And it was very, very obvious that I wasn’t faking it, because it was just really evident how much pain I was in. and it had gotten to the point where I was missing two or three days a week of school because. I was just,

Brianne: and frequency

Valerie: yeah. Long and often. And so my parents immediately started taking me to the doctor. And at first they’re like, well, maybe it has to do with puberty. but I had actually hit puberty, like really young. So by this point, my mom’s like, well, she’s, I mean, she’s been going through puberty for a while and this has never been a problem. So I had started wearing glasses a few years before they checked. I stuff they found that I did have a significant, blinds, legitimate blind spot and thought, well, maybe she has, they scared my parents to death by saying, well, maybe she has a brain tumor because she has this evidence, you know, very obvious place in her eye where there’s something blocking her vision. So we went that route, didn’t have a brain tumor. by the, by kind of the end of all of this, they were wanting to put me on. Oh, and I’m gonna forget what it’s called is, The painkiller, not Dilauded, but another like opioid painkiller. and my dad was like, my, both of my parents are, recovering drug addicts. And my dad’s like, we’re not putting my 11 year old daughter on. Opioids when she’s getting these migraines three days a week and she’s 11 years old and is developing. And so, they, I had tried several different migraine medications and none of them worked. And what we ended up doing was having me just continue to take one that. That one of the side effects was sleepiness. And so what would essentially happen is I’d get a really bad migraine. I take my meds, and then I’d fall asleep. They didn’t do anything to help with the pain, but because they put me to sleep, that helped with the pain, and I could kind of sleep off these migraines. and I had to,

Brianne: the worst of it, but you weren’t functional instead,

Valerie: Right? and so I had to do like special stuff with school so that I didn’t get too far behind on my work. I mean, and this lasted like all of middle school for the most part. and I think that was my first experience with the sort of, like treat the symptoms, type of medical care, because we never did find out. An answer. I mean, at that point it was just like, because doctors were telling us it’s really uncommon for children this age to have migraines like this. but that’s, I think what officially went down in my, you know, my paperwork or whatever was that I was getting migraines, which is fine. Maybe that’s just what it was, but it was more, you know, by the end, it was just, well, we’re, we’ll give her pain meds. Right. and I, I’d be really interested to see what that looks like now, because I think in today’s. In today’s world, there’s no way that they would have that. The final thought would have been, well, let’s give her opioids. Like that would definitely wouldn’t have happened, I don’t think today. And I think, yeah, yeah. Right. And I think my parents by parents having both been addicts were like enough to be like, we’re not giving my develop like my middle school age kid opioids three times a week. but yeah, I think that kind of stuff. Set up when I think about it now, saying it out loud, I really shouldn’t have been surprised what my, you know, 10 years later what my fight would look like with chronic illness. Because the first time I had experienced that shuffling back and forth to doctors and no one having answers, and then kind of just coming up with, this kind of half-baked solution to get you around, around the symptoms. Right.

Brianne: plan instead of a treatment plan,

Valerie: Yeah. and then in that case, it wasn’t even really managing the pain. Just like, okay, well we’ll have her sleep. And then when she wakes up, she usually feels okay. you know, and so that, that kind of ended up just being my treatment plan for a good part of middle school. And then, They just kind of stopped. I’m not really sure what happened. Maybe it did just right out the end of puberty, or they just kind of went away. And that was, that was that, and it was like, Hey, remember when Valerie used to get really bad migraines? and, but at that, at kind of, at that same time, so between like eighth grade. And, high school, because where I’m from, middle school was sixth through eighth and then nine through 12. So, right around that time is when, My mental illness really started to manifest itself. And that combined with a mix of, really bad insomnia, which ended up being another one of those things where at first my parents were like, I think I got my first cell phone around then. cause I had gotten my first job. So I think a big part of it was like, well you shouldn’t be up all night on the phone with your friends or, you know, stop playing snake or whatever it was.

Brianne: cellphones are very captivating back then compared to now. Right.

Valerie: Really into that snake game? no. Yeah. It’s like we’re still paying, like permitted at this point. I wasn’t up all night talking on my cell phone. but I think, you know, I was going into high school and kind of that teenage, so I think my parents. Kind of just thought, you know, I had gotten my own room, or had actually started using my own room for like, kind of beginning period of that. So I think my parents thought I was just not going to sleep. until there was a, there was a span of time in which I did not sleep for four days, which if you’ve ever gone a very long time without sleep, your brain starts to do very weird things. Your body starts very, very not good for you. and that’s when my parents realized like. I was having a legitimate problem sleeping. and insomnia is a weird thing to talk to people about because. It’s attached to so many different things. And so many people have experienced it in some way, whether it’s because of stress or just a sleepless night, or they’re grieving or, or what have you. and so it’s kind of very similar, I think, to, depression where there’s kind of the acute, where everybody’s like, Oh, I’ve experienced that. and then the chronic and it, it makes balance this weird point because it’s. Part of it is comforting to know that people have a reference point, but at the same time, there’s almost, sometimes like an insulting or a diminutive nature to that. because while I understand someone might be able to relate to it, having, you know, insomnia for a couple of weeks when something horrible happened is very different than like a lifelong. It’s, I think it’s the same as when you hear people, like people who use mobility AIDS, and then somebody is like, Oh, well, I broke my foot once. And it was, you know, I know exactly what that’s like. I feel like it’s the same kind of thing. and so when I

Brianne: it just reminds me like it’s the exact type of thing where people can relate to how hard it is because they know that like feeling of sleeplessness, but that people also feel very comfortable with giving advice. Like, like, Oh, here’s what helped my sleep hygiene. Like I

Valerie: the time.

Brianne: phone, I whatever,

Valerie: The amount of people who’ve told me, yeah, don’t look at your phone or take this or drink this, or, you know, I run a lot the amount of people who’ve told me like, well, don’t go to the gym at night. You know, like, I trust me. I had insomnia way before I was working out at night.

Brianne: just a thing I added to add like unrelated

Valerie: but so, so, that’s kind of when my parents realized that, I was, I was having some like legitimate, not just kind of acting out type of sleep problems. and they had always known that I didn’t sleep easy. I had, in part because of, my parents having been addicts in the past, I had a pretty traumatic. Childhood. And so, I always had like nightmares and night terrors. and I, I mean, I’m not a psychiatrist. I don’t know if that is directly connected to the insomnia I experienced later on, or if that’s totally separate, but, they always knew that I wasn’t really a sound sleeper. but, so once that started really manifesting itself, that was kind of my first foray into seeing mental health professionals because that’s where my parents kind of connected that. and, and so that was kind of my first starting to see like a mental health team, was I think my first like sustained treatment type experience. And even that was very, I think, I think we’re not very good at listening to young adults who say things. And so I think I got a lot of, well, she’s a teenager. This thing happens, you know, that kind of thing. and so,

Brianne: It’s whatever.

Valerie: yeah. Yeah. And I think it was very frustrating, both for myself and my parents because, I think sometimes parents of teenagers aren’t really listened to either. in which, you know, they’re trying to say, look, something is going on with my child. And, the professionals are saying, well, trust me, we’ve seen this before. You know, your, your child is no different than anybody else’s child kind of thing. which. For some parents might be very comforting and for some parents might be true, but also if the parents are saying, and the child is saying like, look, no, this isn’t, you know, this, this is different.

Brianne: here.

Valerie: Yeah. and, and as I gotten older and done research and, and because of the work I do now, I think probably a decent part of that had something to do with, My parents being people of color, just because we’ve seen enough studies to know that treatment is different in that case. but even when my parents tried to say like, something serious is going on, we weren’t really taken seriously. it was looked at as, as an overreaction or, as something that, that I would grow out of. and so eventually I just kind of stopped going. And I think that happens a lot. Particularly with mental illness, but I think even with with more physically presenting chronic illness, it’s exhausting to constantly try to go and. Prove to the people that are supposed to be helping you, that you need assistance, right? Especially if you don’t really know what’s going on. You just know that something’s not right. and if people aren’t gonna listen to my parents. I mean, my mom’s a nurse, my mom’s in the medical field, right? So I was like, if people, she, she spoke the language, she, you know, and if people aren’t gonna listen to her, they’re certainly not gonna listen to a 15 year old Valerie, right? So. so what’s the point? You know? And, so that kind of ended itself and, I think I didn’t really think much about my physical health towards the end of high school. I, I got really, really depressed. I didn’t, I didn’t even really plan on finishing high school. I didn’t really care about things, so I don’t think I paid a whole lot attention to what my, my physical body felt like. And then I think part of what made maybe for me, the journey of self advocacy so long is that in that same amount of time, in part because of the not sleeping in the depression, I gained a lot of weight. I stopped being active, things like that. And so when I was a little bit older, I moved out when I was 18, moved across the country. I believe I was 19 when I had my first ER trip for pain. And so I think when doctors started saying things like, Oh, it’s because of your diet, you need to lose weight. Things like that. that seemed valid because, because so many things had changed physically for me, I was less active. I was, you know, Mmm.

Brianne: It was a plausible explanation

Valerie: It was a plausible explanation. Right?

Brianne: things go. Yeah.

Valerie: Yeah. And so, I guess that we’ll stop there. So that’s the first kind of the childhood background, in which in which I think kind of set up a lot and I’ve seen a lot of things. In my journey now that I’ve seen symptoms, or people have said, well, sometimes this will happen with X, Y, diagnosis, or we’re having, I’m like, Oh, well, that’s been happening since I was, you know, 12 but nobody ever connected it. Right. but that’s kind of how I, how I. My experience, at least with the system up until I was about an 18, which is when I kind of started taking care of the health on my own because I had moved cross country and you know, my mom was not just a drive away or a room away. She was, you know, 1300 miles away. So, you know, finally I had to start making my own doctor’s appointments and things like that. Yeah, yeah.

Brianne: I just, I’m wondering, so you’re talking about it as being, obviously not a helpful or supportive experience. Did you. Go through any like treatment protocols or were you seeing the same doctors and they were just kind of not interested in the kind of gravity or the situation, or did you find yourself seeing a bunch of different people who were all kind of like, Oh, that’s not really something I can help you with?

Valerie: Both. So, when I first started getting the migraines. We had, you know, you have your pediatrician or, or what have you. but that was one of those things that, because it was, people could obviously see that there was a problem. My parents were very worried, but nobody knew what it was. It was one of those things where we’re going to, okay, we’re going to pass you to the, we want you to see the optometrist. Oh, well, nothing’s wrong there. We want you to see a neurologist. Oh, well. And kind of that one was a specialist to specialist to specialist kind of thing.

Brianne: Yeah.

Valerie: and then I also went through a couple like therapists and psychiatrists. but that was more of a, a handoff kind of thing. I went to a counselor and that didn’t quite work. So they’re like, she needs to see a, like a therapist, which I guess there’s a difference there.

Brianne: Yeah. There’s so

Valerie: And so,

Brianne: distinctions, I feel like within the therapy world. Yeah.

Valerie: Yeah. So then I started seeing a therapist, and when I finished with her, she was like, okay, well. She gave me a diagnosis and wanted me to start taking meds. But because she was a therapist and not a psychiatrist, she wasn’t able to prescribe. So then I got passed off to the psychiatrist, which was a whole other thing. but just because of religious background in my family, my parents didn’t really want me to take meds for, for mental illness reasons. So I never actually really went to the psychiatrist. And so there was a lot of doctors and they weren’t necessarily talking to each other. but I think at least the mental health thing was more of like a, a progression almost of doctors. Whereas, the migraine thing was more, well, we don’t know what’s wrong, so we’ll send you somewhere else.

Brianne: Someone who has different questions, even if they are also not relevant questions.

Valerie: right. whereas once I got older, that was much more of a, just like. Either complete disregard or sometimes just legitimately, you know, being honest of like, there’s nothing else I can do with you do for you, you know? and where you’re seeing multiple of the same kind of doctor looking for different answers. I think in my youth it was more, specialists or, or a progressive type of, of treatment. Yeah.

Brianne: beyond the scope of what I can help with kind of

Valerie: Right, right. Rather than just kind of throwing your hands up and saying, I don’t know. Yeah.

Brianne: Nothing’s wrong.

Valerie: Yeah,

Brianne: Lose weight.

Valerie: yeah,

Brianne: Huh. okay, so, so now you are 19 and it sounds like pain starts,

Valerie: yeah. So, of course the fatigue thing had already always been there, which I always assumed with the fact that I didn’t sleep well. I mean, you don’t sleep, you’re tired, you know, makes sense. I remember my first ER trip very distinctly because. I to this day, I feel like I’ve never been in pain like I was that day. it was a Sunday afternoon and it, everything had been fine. I was hanging out at home. I was getting ready to leave the house, so I went to the bathroom and it was like, as soon as I sat down, it felt like somebody had just sliced my stomach in half with a knife. And, I was in the house, I was renting a room, and at the time I was in the basement and it was like two floors down. So I had two short flights of stairs to get up to get to like the mid level of the house, I guess. where, where my friends and roommates were. And I remember. Like pulling myself up the stairs, trying not to cry, and I’m just laying on the couch and my friends being like, what’s going? I mean, I literally just walked downstairs to go to the bathroom fine. And then suddenly was just doubled over in, in so much pain. And, one of my friends. called her mom. She didn’t drive. She called her mom and said, can you take us to the hospital? Valerie is in a lot of pain. And so they took me to the emergency room and they did all sorts of tests. They had me do a CT, they did an ultrasound. they did all kinds of blood work and urine samples and, found nothing. And. What they had told me, what they had kept saying was, well, stomach pain is really general and it’s really, really hard to find the cause, which I mean, made sense. You have a bunch of stuff in there.

Brianne: where a lot of important things

Valerie: It’s where a lot of important things are in there. and it was a very like, general, I mean, I, I really, that’s the way I kept explaining it to the doctor was I felt like I was being just like cut in half through my mid section. and so when you have that big of an area, it could have been heart and lungs. It could have been a GI, it could have been, my reproductive organs, you know, there was just so much going on, but they didn’t see anything in imaging. and this was my, my first step into the, or I guess if we talk about childhood second step into the, here’s some opioids feel better kind of treatment. in the ER they gave me, I think Vicodin maybe, said, take these, we’re going to set you up with a GI specialist, but here are these for the time being. I ended up back in the ER. I think two days later, because even the, the Vicodin was not helping the pain. they ended up upping the dose or doing some other, something else with the prescription. I ended up out of work for about a month. Essentially, I would wake up in the morning, be in pain, take pain meds and fall asleep. and that, that happened for about a month before I could get in to see the GI doctor.

Brianne: Which is a long time

Valerie: It’s a long time.

Brianne: a long time to be not able to work with no explanation. I

Valerie: Yes. Yes. And if I hadn’t had really, really good, A really good, like short term disability policy that kicked in right away. I would have been in a lot of trouble. I mean, I, in that way, I was protected in a way. A lot of people aren’t.

Brianne: Yeah,

Valerie: because our, our short term disability kicked in up after like two weeks. I know some people whose policies don’t kick in for like two months, you know? and so I was able to get paid for that time. My job was secure for that time. And that’s a benefit that a lot of people would not have had. But there was also no way I could work. and so, I had, there were times I had tried to go back to work. I actually tried to go back once, I think within that first week. And, they almost had to call an ambulance on me to get me out because I couldn’t, I just couldn’t sit there and work. I was in so much pain. and so that was about a month. I finally got in to see an endoscopy, to see a GI doctor who gave me an endoscopy. they thought maybe I had ulcers. came back, still hadn’t found anything. he tried me on some kind of experimental meds that didn’t do anything. and that was kind of the start of. The pain that never ended. you know, at this point, 11 years ago. Right. and that was the start of the repeated ER visits. my doctor knew I was having these problems, but because of waits to get in and lack of a treatment option, what it essentially came out to being was when the pain got too much for me to bear. I’d end up in the ER, they would do some testing. I’d leave with a prescription for some kind of. Opioid or strong painkiller. And then next time the pain got too much to bear. I’d be back in the ER and no matter what doctor I went to, no matter what happened, this ended up being how it was treated. and it was rough. One, because you’re in pain and you don’t know what’s wrong. and then after a few times, you start getting the, the looks when you go into the ER. the questions about you being a drug seeker. and it’s like the only reason I’m here and getting opioids is because nobody will provide me any other treatment option. I have no other recourse. This is what, what you all are having me do. Right. but then,

Brianne: your doctor told you that that is the way to go. And then the people in the yard typically are like mad that that’s where you are. It’s an impossible situation.

Valerie: Snide remarks and looks. And not to mention, I mean, like I, like I’ve mentioned before, I was very lucky to have insurance, but they’re still like, I don’t know what a hundred dollars copay for the ER visit versus a, you know, a $20 copay for a, visit with my primary carers. So being told, well, you’re just going to have to go to the ER. That’s also costing me, you know, at least a hundred dollars every time. which for all intents and purposes is cheap for what a lot of people might pay. But. Isn’t really cheap regularly, I mean, to go.

Brianne: to use an ambulance to get

Valerie: Yeah.

Brianne: not a good thing. That’s a bad thing about ambulances.

Valerie: right. so also, essentially paying, you know, a hundred dollars, not counting the price for my prescription or not counting if I get a bill for the doctor time or whatever else I was going to get a bill for. every time I had to go to the ER,

Brianne: cetera. Tests. Yeah.

Valerie: right. And then, you know, because they have their protocols, often I’m getting charged for the same tests that have already been done where they didn’t find anything. Right. and when I would talk to my primary care doctor, I remember first talking to my primary care and he, and the first thing they did was, put me on a selective diet. so I had this huge chart and we went through it. Bye each week, which I appreciate it. It was pretty thorough, I guess, but, they wanted to make sure, you know, I didn’t have like celiac or I wasn’t, ingesting something that was causing some kind of allergic reaction or something like that. So, you know, one week I didn’t eat everything in this column on the list, and the next week I didn’t eat anything from this column and so on. didn’t change the pain. talked a lot of course about exercise and losing weight and, Like I said, because of the things that had changed that seemed valid at the time. I’m, I’m. Five, five ish. I think I’ve actually grown some. So I think I was like five, four something at the time. and I think I was probably well over 250 pounds. So it made it everything that everybody had ever told me about my weight. It made it in my brain. It seemed to make sense now. It didn’t make sense to me that I had internal abdominal pain. And the answer was lose weight, but everything around you says, well, if you’re fat, you’re unhealthy, and it makes sense that you’re in pain.

Brianne: Yes.

Valerie: so that,

Brianne: with the idea, but agreeing that everything says that. Yeah.

Valerie: Right, right. So all the narratives that I’m hearing about my weight seem to coincide with what the doctor was saying. So even if it didn’t seem to make sense that where the pain was, I was getting that reinforced by lots of places. so, you know, I was trying to, to do that kind of thing and seeing if I could lose weight, which it’s really hard to try to do something like go to the gym when you’re in tremendous amount of pain, right? When a doctor just keeps telling you, well, you know, try to work out. And it’s like, okay, but I can’t even get out of bed because I’m crying because I’m in pain, but I’m going to go to the gym. Sure.

Brianne: to a hellscape that is the gym sounds like a good idea.

Valerie: Yeah. but kind of that’s what I was being told. And when the food thing kind of checked out, the next place I was told to go was to my OB GYN. and then they started looking at things like endometriosis. and when all of that came back, that everything seemed fine there.

Brianne: a laparoscopy, like also

Valerie: No. and to this day, my mom is still actually really upset about that. cause I mean, I think, but by the time I got a diagnosis, I think I had seen maybe three different OBS specific to my kind of core pain, and have still never had one. and to this day, my mom is, is, is pretty convinced that I have endometriosis. But I told her, I mean, at this point, I really think they would have found that, but she’s like, they’ve still never done like that singular test. but as the time went on, my pain also got more widespread, throughout my body. And I started, that’s when I started experiencing the joint issues. and so. Now, oddly, the pain that I kind of get in my core body is much less problematic than the pain that I feel in what I call my bed deep places. It seems like any place where my body bends is where most of the pain is concentrated now. but yeah, so even even that first OB visit, was very, like, it was a series of questions. They asked a lot about my menstrual cycle, and they did. Physical exams, and things like that, and kind of ruled it out. and so I just kind of went on my way with taking my tolerance to things like Tylenol and ibuprofen is completely shot. you know, doing whatever I could to help with the pain. And this went on for a good couple of years.

Brianne: And side question because someone was just asking me about this the other day. So you mentioned diet. Did they do any formal allergy testing? Not that. Okay. Not that I am thinking that it probably would have told you anything, but just wondering, especially since they were actually recommending an elimination diet. Okay.

Valerie: Nope. Nope. The only thing was the, they had me keep a food diary when I was doing their specific, like column diet to see if any of my pain changed with any of the diet changes. but Nope, never did an official allergy test. never, you know, did the official scope for, endometriosis, just, you know, set a lot of doctor’s appointments with a lot of copays and a lot of time, for them to say, well, we don’t know. so this, I lived in Seattle for a couple more years after that, I ended up moving to, Ohio and pretty much having to start this all over again. with new doctors.

Brianne: And how was working through that? I just realized cause you were offered originally and it sounds like you were able to go back, but also it wasn’t because everything magically cleared up.

Valerie: Right. So, I had a really, really. Like lucky experience, I guess. or supported experience, I guess you can say. in that I had some flexibility, but I was pretty much that whole time I was pretty much on some form or another of like warning. Because of attendance. but also my supervisors and, my managers in session were aware of the health issues going on, and so they did their best to work with me. and so I was very lucky in that that never escalated. But because of. They’re procedural required. I mean, each year that I was there, I was quickly out of all my sick time, quickly out of vacation time, which automatically put you on some kind of, like warning kind of thing. and I don’t think, now that I think about it, I don’t think anybody ever actually gave me education on like intermittent FMLA or something like that, or else I probably would have used it. Cause, I mean, that would have been some nice job protection, but I don’t think anybody ever told me like, Hey, you should apply for this until like much later in life. But I had flexible enough, managers that were aware of what was going on that it kind of just stayed there as long as I came in and I did my work and I got my job done. but yeah, I pretty much for the, for that whole, like three or four years existed on never having sick time. so a lot of unpaid. Time off. that was taken. I was just, benefited from having, having managers that would work around that.

Brianne: Right. That trusted that. That was really what was going on. Cause I feel like that can be part of the problem.

Valerie: Yeah. And then eventually I did, go part time. I had moved to a place where I could afford that. but ended up actually moving shortly after that.

Brianne: Okay.

Valerie: but it was a. Very exhausting and hard and painful. And, I don’t think I would’ve been able to do it if I was working any other kind of job. But I worked in a call center, so I was in a office all day. I didn’t have to see anybody face to face, so I was able to sort of grin and bear it a little bit more because I wasn’t necessarily having to have an outward facade that I was filling. Okay. So if I.

Brianne: to work, but your face could be whatever your face wanted to be.

Valerie: Right? So if I needed to bundle up with my heated blanket and put myself on hold for a minute and silently cry, I could do that, right? Which I wouldn’t be able to do that if I was working, you know, face to face with somebody. Right, right. But I could do that and kind of bundle up in my chair for a second and say, I need a breath. and I, and I had the ability to do that. I have no idea what I would have done had that not been my working situation. because there was just too many times where that was the case where I just would have to lay my head down on my desk. I don’t know how many times I talked to customers with my head down on my desk and my eyes closed just trying to make it through because I was in so much pain. And, and so I think all of all of that, my ability to continue working really just came down to like, right place, right time kind of thing when it came to my employment because there’s so many ways that that could have gone wrong and that I know of other people that it did go wrong for, because they didn’t have that flexibility or, or had a different kind of job or something like that.

Brianne: the amount that you have to perform wellness in your role, I feel like is hugely variable and hugely like it’s also exhausting to do that. Of course, trying to do that extra thing. That can be the thing that knocks you out for sure.

Valerie: yeah. And then of course, the physical pain and the, I think maybe the, the only thing that might’ve been a slight silver lining of that time was that, the pain meds helped me sleep. So I was getting maybe better sleep than I had gotten in the past. So maybe that was a weird silver lining, but, everything else was declining. My, my mental health was very, very low because I was in so much pain. And, it, it just seemed like nobody wanted to listen. Nobody would help me. And I think it was getting to the point somebody even actually said, said this, not to me, but to one of my friends who relayed it to me later, when I was unable to go to something. And. somebody had made the comment, wow, she’s really milking this thing for all it’s worth. Ha. and my friend kind of relayed this comment to me. but I think sometimes when you don’t have that backing, like doctors are the experts, right? That’s how we view them. And so when you don’t have their backing of something’s going on, A lot of other people don’t believe you either. and so that kind of stuff was really painful to be like, even the people that are in my life and know me personally are starting to get to this point where they think I’m lying or they think I’m faking. Mmm.

Brianne: Yeah.

Valerie: Because nobody else has is, is making this valid.

Brianne: Yeah. Without external validation. This is one of the, like. I don’t know if I’d say the biggest surprises, but something that I really didn’t expect was to come to understand like how completely meaningless diagnosis is most of the time, like. I don’t mean that to say that people like the way that we identify or experience our illness or chronic pain is not valid. I just mean that like the label that gets put on it often doesn’t really mean anything and it doesn’t have a meaningful impact on our experience of those things, but it means a whole lot to other people and it can like wildly transform the way that other people relate to it. And that’s so messed up. It’s like.

Valerie: Especially the last, the last point you make about, you know, what it means to other people. The amount of times that I, at this point in my life, the amount of times and the amount of diagnosis I have from different doctors for the same symptoms is mind boggling. and it’s just interesting to me. One, how very different the world’s responses to that is. but to how it holds so much weight. For people who haven’t kind of seen this in action. And when you have, it almost makes you laugh because it’s like if only you knew you’re trusting what this doctor is saying, but if only you knew what the seven other doctors before this doctor have said, you maybe wouldn’t be putting so much stock in what this one diagnosis is, right?

Brianne: seal of validation, like this seal is meaningless.

Valerie: Yeah, it’s, it’s like, this is not the first, so the, the first official diagnosis, for example, that I got for my stomach, happened when I went to Ohio. And they, they said I had abdominal migraines, which is apparently something that is very, rare for adults, but I guess kids get. and so they were saying like, kids don’t normally get migraines, but they’ll get migraine type pain in their stomach, I guess.

Brianne: Huh?

Valerie: yeah, so I don’t know. But, that was the first time anybody had even tried to put like a name on, on my stomach pain. But it was just like this random kind of catch all sort of diagnosis, but it’s still somehow lent validity to pain I had been having for like six years already. Right. but it just seemed like such a kind of ridiculous thing to throw out there.

Brianne: and not, not because I think that the pain is not real, but just because like, yeah, you know, you’ve been experiencing this pain for ages. Nobody has an explanation. They still don’t have an explanation. But we know that like migraine is a word that means severe pain that people are familiar with and we’re just going to apply it to another part of the body. And now people think that this pain is real.

Valerie: Yeah. Yeah. so it was, I don’t understand it, but it is what it is, I guess. and so, so yeah, I moved to Ohio and kind of had to start this all over again, and so that was the same. I was still. I had gotten to the point where I could pretty much deal. I had figured out, I mean, you do what you have to do, right? You figure out ways to get up every day and to go to work and to fight through it. And, so I had been doing that. And still, if the pain got too bad, I would go to the emergency room. but I had, I had moved, I was in Cleveland and, you know, Cleveland has Cleveland clinic and, you know, maybe this, you know, maybe now I can get some help. But it was, it ended up pretty much being the same thing. They tried some diets. They sent me to an OB GYN. They sent, sent me to a GI doctor. and I ended up, so with the diagnosis of abdominal migraine and, and IB S is what, what they had ended up saying. and. At this point, the pain had already been, had already spread to be a pretty full body. and I think this was around the time where at least some of my doctors started taking me a tad bit more seriously because it was around the time that my blood work started looking a little weird, but not weird enough to signify anything. I had things that were high but weren’t high enough or were low, but weren’t low enough. the only thing that repeatedly came up was that I was not absorbing vitamin D, which I guess can cause its own host of problems. but that was like the only thing that was in there that they could try to rectify it and everything else. Kind of going back to what we’re talking about with this like medical knowledge. It’s like, okay, well we can see that this is really low, but it’s not past X threshold, therefore we can’t do X, Y, Z treatments. Right. but it was, it was consistently off enough that the doctors were starting to say, okay, well something is, is going on here because these numbers are off and no matter what we’re doing, it was like they finally had something on paper that, that. Proved that, or at least gave some credit to what I was saying, that maybe something inside me wasn’t quite right.

Brianne: Yeah. It’s like it starts to shape the questions that they can ask cause like pain and fatigue. Now maybe there’s other stuff, but I think pain and fatigue are the big ones. But if there is no, if there’s no lab work, if there’s no, you can show up with pain and fatigue. There’s just like, cool, good luck with that. But as soon as there’s like a different question of why aren’t you absorbing this? Why aren’t you converting this? Whatever it is. Like when there’s a hook. Even if. It often still doesn’t leave anywhere. It changes the way they talk to you. Yeah.

Valerie: Yes. Absolutely. and so then I had moved one more time still within Ohio, but at least this time I had some paperwork, so that was less stressful. but I had, had gotten married and was able to start going to college and had started, I w at the time I’m thinking I was going for social work, but I think some of the classes I had taken had sort of started educating me a little bit more on how to advocate for myself and how to kind of demand a little bit more. Not because that was the intent of the class. I think it was just the people I was around. The things I was reading, that kind of stuff was sort of helping me to learn that. And so, I started trying to be a little bit more engaged in. My medical care, and I think at the same time I started getting worse. that was when the, the dizziness and the, the, the dizzy spells and the like, blacking out started. And that had not happened before. I had been, like I said, since I was in like fifth grade or something, I remember having like the. Not being steady and the feeling the sudden weakness and the shaking. but not to the point of losing consciousness. it had gotten to the point where somebody who has always had trouble falling asleep, somebody who has always been tired but not able to do anything about it. I’d get home from class and sit on the couch and wake up four hours later and not know that I had fallen asleep. And for some people that might sound lovely. Even for me. At first it was kind of lovely. And then after a while it was like, okay, this is not. Normal for me, you know?

Brianne: better.

Valerie: Right, right. and that was when my husband was like, okay, you never sleep. So the fact that you’re just so, you’re always tired, you never sleep, and now suddenly you’re exhausted and sleeping and even more exhausted. but that also just meant we had more to tell the doctors, I think. but we’re still getting a lot of, well, it’s your weight.

Brianne: Yep.

Valerie: so I lost 130 pounds, and.

Brianne: like that.

Valerie: It got worse.

Brianne: Ha ha. Jokes on you in medical system

Valerie: I was really actually super upset about that because I, it’s, it’s really hard and stressful to lose weight. but I remember one of my first doctor’s appointments. After, to talk about with, with my rheumatologists who we’ll get to later, but, had talked to and he kind of just flippantly is like, well, you know, you’ve, you were carrying your weight for a long time. So when you lose a lot of weight like that, it can cause a lot of stress on your body because your body’s having to adjust to like this weight loss. And I’m like, so this whole time I’ve been having. Joint and nerve pain, and everybody’s telling me to lose weight and nobody tells me, Oh, by the way, but if you lose weight, this might actually get worse because your body’s not going to be used to it. Nobody told me about that.

Brianne: This may or may not apply to your situation, but like one of the things, I went down a S rabbit hall and my own health history, which I do not have PCOS, but anyway, one of the things about PCOS is like, people gain weight because of the hormone imbalance or because of insulin resistance, and then have trouble losing weight. But then when you lose weight, like your fat cells are storing a lot of that excess estrogen, and so you can get flooded with estrogen. So things can get worse for a while, and you’re like, what? Why? Why is this also terrible?

Valerie: That’s like, can I just not win? so.

Brianne: I had another like side tangent for me, but a different thing that that makes me think of is I also feel like sometimes when there’s something that’s hard to do, but everyone’s telling you it’s going to make things better. Like in this case, losing weight. and diet changes can be the same. Like, Oh, but have you just stopped eating whatever, like cut out sugar, cut out junk food, and they’re hard and you’re resistant to doing them. And then eventually you do them and then they still don’t help. It’s like. An extra slap in the face of like every single fucking person that I’ve had to act like, Oh, I know I should do that. You’re so right. Cause like every conversation has that tone and you’re like, I could have been telling all these people to fuck off this whole time and I didn’t know. And now I know and I’m mad about it.

Valerie: yup. That’s exactly how I felt with the doctor because I was just like, I, as I started to lose weight, I just was, it was like the pain was magnified suddenly. It was almost like my weight was insulating me from. From some of the pain. And so it’s like everybody was telling me, well, of course your joints hurt, you’re overweight, you’ve been overweight since you were 16 blah, blah, blah, blah, blah. And, and then as I’m supposedly getting healthier, right, I’m exhibiting even more symptoms than I was before. And I don’t know. I don’t know if there’s been more research on this. I’m not a researcher, but I did have at least one doctor tell me, when I did finally get my pots diagnosis, she gave me, she printed out and gave me a research article about, that exact phenomenon about, an increase in people who have lost a significant amount of weight and simultaneously had an increase. In pot symptoms and that likely they always had it, but whatever it was with the weight affected, the way that the symptoms showed up, I guess. and she’s like, yeah, she, she printed out this whole research study that was done and was like, apparently this was not necessarily an uncommon phenomenon. And so by the time it had started getting worse, I had already started losing weight because I had been years of doctors telling me, well, if you lose weight, you know, you’re gonna. You’ll start to feel better. and I think so. I think, like maybe planet fitness wasn’t around at that time, but at that point it was like, okay, well I can do a $10 a month subscription. And so I had started going and it was just like walking on the treadmill or doing the elliptical or whatever, and had started losing weight, and I didn’t really connect the weight loss with the increased symptoms at the time. and it wasn’t until,

Brianne: out

Valerie: yeah. Yeah. it wasn’t until way later. Yeah. Right. It’s supposed to be helping me. Everybody’s telling me it’s gonna help me. But I had started to get some language and some tips and some tricks for how to kind of advocate better. So I think the kind of last leg before I got diagnosis was a mix of. Finding that I think it was a mix of one, just being exhausted and kind of having a lot less patience than I had had in the past. having a partner who, I’m going to be honest, I think him being like a white male helped because he and I should say a white male with his own lifelong chronic illnesses. He. Took a lot less shit, than I did and would not really let me just lay down. So I think that was part of it. and then also just kind of getting this language, and then I had started losing weight. And I actually remember the first time I had a doctor who responded to me without any hesitation was right around the time I had to hit like the a hundred pound lost Mark. And it was just very, it just stuck out to me because it was the first time I felt like I had been treated. I don’t want to say respectfully. I think I’d always been treated respectfully, but, but as somebody who was an expert in my body by a medical professional, and I just remember because it happened so close to each other thinking, did this only happen because I’m a hundred pounds less now than I was before? You know, it just being the way that I was treating being so starkly different than I had been treated in the past. But, so all of this was kind of happening at the same time. And so I think that really helped usher me getting finally getting a diagnosis. but I was going to a, a learning hospital and, they had done, you know, a lot of tests. Again, drew my blood and it, I had gotten a call back from the doctor and she was very concerned because my white blood cells work extremely elevated, way more elevated that they had been in the past. and. They have always there. Every time I get my blood checked, they’re elevated. But it was significantly more elevated than it had been. So that started the down rabbit hole of what we think he might have lupus, which was very scary thing to hear. I didn’t really know anything about it. and they’re like, we think you have that. Or, rheumatoid arthritis, because my RA factor was also elevated and it was elevated every time. and that’s how I ended up seeing a rheumatologist. After they had, oops, after they had rolled out the, the lupus. and the rheumatologist was the first person who had said, who did some testing and said, well, you don’t have RA. and that goes back to the testing thing. I had all of these symptom markers and I had the blood, my blood tests came back. Elevated for the things that were supposed to be elevated, but not enough for an RA diagnosis. and so my doc, my rheumatologist actually flat out told me, I am diagnosing you with fibromyalgia, but, I think you have a mild form of rheumatoid arthritis, but I cannot diagnose you with that because your numbers do not. Hmm match. I don’t meet the threshold. Right. even though it was like obvious that my body is in a continual state of fighting something, my RA factor is continually elevated. he’s like, I can’t, I cannot treat you and have it be covered or whatever. as rheumatoid arthritis. So that was when I got like my first official fibromyalgia diagnosis. at the same time, I, because I guess I was just on this kick of, of being like, yeah, I’m advocating for myself. I’m going to get the help I need. I had a very similar experience, with my therapist who had then I think now for the third time, giving me a diagnosis, of borderline personality disorder and had also told me, This is what I think is going on with you. I am not going to put it in your file. If I put it in your file, he legitimately told me, if I put it in your file, it will ruin your life. the people who all have access to see this and know that you have this diagnosis, this stigma will follow you for everything you do. and he’s like, so I’m telling you this in this room between us, I am not going to put this in your file. and that’s a terrifying thing for somebody to tell you.

Brianne: Yeah, I was gonna say like outside of it and knowing a lot about. Chronic illness and medical bias. I can like intellectually understand it, but in that moment, what would that be like?

Valerie: And I remember, going online and looking up borderline personality disorder, which was a horrible decision for one. I should’ve never done that. But I’m finding things like, there’s a whole. There’s a whole subreddit dedicated to people who have, quote, survived relationships with people with BPD and, Oh,

Brianne: my guess. It’s a lot of like, if not accurate support groups for other people. Kind of

Valerie: yeah. Yeah.

Brianne: Yeah.

Valerie: does it make you feel very confident in your future? I think one of the things I was most grateful for was that I was already married. I don’t know that I would’ve ever thought there was ever a hope for me to have like a strong, stable relationship if all I had was a diagnosis on the internet.

Brianne: Yeah. Oh my

Valerie: yeah.

Brianne: I would imagine, Thinking about it cause like the only, I don’t even know if I’d call it positive, but like the only representation of borderline personality disorder would be like crazy ex-girlfriend, which is recent. Right.

Valerie: And I like if you, have you seen the show. Yeah. So when she gets her diagnosis and they, I think they, he specifically tells her not to go look it up on mine and she goes to the bathroom and she looks it up on mine. That was like me, that, I mean, that’s what I watched that scene. That was like a hundred percent how I was feeling. You see, you’re, you’re faced with the suicide numbers and you’re faced with the support groups and you’re faced with all of this, like really, really. Discouraging stuff. So I have one doctor over here telling me, well, I think you have this thing, but I can’t treat you for that, so I’m going to treat you for this other thing. And then I have another doctor saying, well, I’m going to treat you for this thing, but I’m not going to put it down in your file because it’s going to ruin your life if I do that. it was not, this was a 2015. It was not a very optimistic year for me.

Brianne: that. And it also, weirdly, I was actually thinking about this morning, about this thing of like when stuff shows up in your chart, how does it create bias? I was going to ask you about it on Twitter this morning and then I didn’t have time. So if you see it show up later,

Valerie: Yeah,

Brianne: by both thinking about it already, but this conversation brought it back. But like. Fibro is also one of those things. I think that when it’s in your chart, it impacts your care or it can impact your care forever, which you don’t necessarily know at the time. Like this is a huge separate, like outside of the actual illness, cute problem that like all of these practitioners are obviously defining and imagining all of these diagnoses, like still radically differently from each other and they kind of mean different things by them and that’s fucked up.

Valerie: Well, and I remember being really scared. I mean, times have changed, but I remember being really scared to call my mom. And tell her when I got my fibromyalgia diagnosis, because I remember being a kid and overhearing, I don’t know how we remember the things we remember, but I remember overhearing a conversation. This was probably 10 or 15 years before because I was really young, but of my parents talking about. This made up illness that people were starting to have. And, and I think it’s, it’s less so now, but there’s still a lot of people who don’t think fibro Israel. But I remember, you know, my mom was in the medical field, and I remember being younger and her talking about this made up fibromyalgia that people were starting to get and how it wasn’t real and blah, blah, blah. Right. And so I remember getting this diagnosis and being really, really terrified to tell my mom, despite the fact that after getting treatment and starting medication, my pain had radically decreased. So in my brain, whether it was real or fake, my medicine was helping, right? And it wasn’t, and it wasn’t opioids. It was like I could function on it. I could, you know. but I was terrified to tell her because I thought she was gonna like roll her eyes. But at that point, 10 or 15 years in the medical field, I pass and my mom was like, Oh, you know, this is totally valid. But yeah, I, I remember being terrified of like, what’s my, my mom’s gonna roll her eyes and be like, Oh, you’re one of those people. Right. And I think people with Emmy are very much going through that right now. And, people will see it. CFS have been going through, you know, through that forever where it’s, it’s, Oh, it’s the lazy person’s disease, or it’s just, you know, we’re all tired, or this idea that, that. Even when you have this diagnosis, it’s something made up. It’s something you’re trying to get one over on people or you know, you just can’t handle life or whatever excuse people are going to throw out there. I remember thinking that when I got this fibro diagnosis was like, this is gonna make things worse. Nobody’s going to believe me. Everybody’s just going to think I’m, you know, at least now I can say, well, something’s wrong with me and nobody knows or no one knows what it is. Now if I tell them, well, it’s fibro, they’re just going to roll their eyes and say. You know? Sure. Right. so it’s like I, I remember there being like, I remember, as weird as it is, like being frustrated that I wasn’t sicker because I remember thinking like, well, if my. My white blood cells were working just a little bit more. If my RA factor was just a little bit higher elevated, then I would have this like valid diagnosis, like this believable diagnosis, especially because my doctor had just flat out said like, this is what I would diagnose you with, but I can’t because these numbers. Right. and how weird is that to think like. Well, I wish I was sicker so that I could be believed or so that I could, you know, and that, that’s just such a weird way to think, but I remember, I remember thinking that, like, if I was just a little bit sicker than this wouldn’t be, I wouldn’t be so scared about this. Right.

Brianne: And like really weird and I think incredibly common, but not represented at all. So no one thinks that and goes, Oh, but a lot of other people are thinking this too.

Valerie: Yeah. Yeah.

Brianne: think that and we go, Oh no, that’s fucked up. I can never tell anyone, because then they’ll think that I’m romanticizing sickness and hoping to get sicker.

Valerie: yes, yes, exactly. Yes. And I’ve had the exact same people say that, you know, with, With mental illness. It’s like, I don’t tell just because of what I’ve seen. I tell very few people off the bat about BPD, but I’m very, very open about talking about my depression and I’ve gotten into arguments with people, either about the BPD or the depression because I, at least with the depression, I think if there was something that was a cure that came out tomorrow, maybe I would take it. But as far as the BPD like that. I, I feel like my ability for extremely strong emotions and to be sort of this radical empath, is important to me. And it’s actually something I like about myself and I’ve gotten into legitimate arguments with people. over. That same thing of, well, you’re just romanticizing something that’s, you know, this illness. Right? And it’s like, it’s, it’s not that I’m unaware of the negatives, as somebody who’s, but as somebody who, that is who I am, I am not, I’m also not going to say I wish I wasn’t that person. you know, I am, there are good and bad traits to everybody. we’re all, you know, we all have the, the capacity for good and bad, and, my type of personality has a name and a diagnosis, but that doesn’t mean that I want to change it. Right. and, and so I kind of felt the same way where it’s like, yeah, I’m not romanticizing that I’m sick, but, And if maybe if there was something that would take my pain away tomorrow, I would take it. But I’ve also, I’m also who I am, and I’m also in the world that I’m in and do the work that I do because of that. and so, you know, it’s not romanticizing. It’s just kind of making the best of what it, what it is. Right. and oddly, you know, if I was a little bit sicker, I could maybe make it even better because I’d have better medication.

Brianne: so extra ludicrous because like a defining feature of the fibro diagnosis as it exists right now is that it’s an exclusion diagnosis. So if there are strong indicators that there’s another explanation, it’s like extra like, Hmm, a weird thing that we’re learning about how diagnosis works.

Valerie: Yeah, and it’s like I’ve even had to go in, I’ve laughed at myself because I’ve had to go into like urgent care and get steroid shots when my joints have locked up because I don’t have a prescription for, for the type of steroid shots I’d get if I had an RA diagnosis where it’s like, so I get to go in and it’s. Still kind of that, that chronic sickness tap attacks, right? Where it’s like, I don’t have the diagnosis. I need to get this covered by insurance. So I get to pay $65 to go into an urgent care so that they can give me, a steroid shot so that I’ll, my swelling will go down because I can’t take, you know, Humira or, or whatever it is because my insurance doesn’t cover it because I don’t have the diagnosis that I need, even though I have the symptoms. Right. So it’s, it’s a. And the blood markers. They’re almost there, but you know, so you, you figure out your ways around it. At this point, I just kind of, am. Am grateful for the stability in the diagnosis that I’ve had. now I’m in D C so I’ve moved from Ohio to DC, and it was night and day. The experience of being able to walk into a primary care doctor’s office with, even though there’s a handful of them, right, with my handful of diagnosis saying, this is what I have. These are my medications and a doctor just being like, okay, this is what we’re doing. This is what we’re working with and this is what we’ll be doing going forward. Versus when I moved from Washington to Ohio and just being like, I’m sick and I don’t know what it is. And it was just, just completely night and day difference. and so it was the, the blackouts, which took me, I think another two years before I got the pots diagnosis, after the fibro. I think they kind of wanted to lump everything into this fibro thing. And, I kind of kept talking, you know, talking to my rheumatologist, talking to my primary care, and both of them were like, well, you know, getting dizzy and passing out really isn’t a fibro thing. The, the exhaustion definitely can be attributed to that. but the rest of this kind of isn’t, but we don’t really know what’s going on. and, I, I was on. Or I’m still on, some meds for PTSD that, are also blood pressure medications. but I take it in a much lower dose. So for a while they thought, well, maybe your, your blood pressure is getting too low, but my blood pressure was fantastic. Everything seemed to be right. So after. Probably about a year and a half or two years, I finally got a, a referral to a cardiologist who had me do a tilt task list, which is, I personally think a form of medical torture.

Brianne: And did you have to do anything to qualify? Did they make you do a halter first? Just as

Valerie: I did do. I did do a halter first. my halter actually came back. I only had like one episode. and so it wasn’t enough. But then there I was like, well, I sit in an office all day, like I wasn’t cha. I don’t change my orientation that much. And it had gotten to the point where, I really didn’t like moving very much. So

Brianne: doing mine, I was like, really? I just lie down all the time because that’s how I function. So like 9:00 AM to 3:00 PM lying down every spike above a hundred it’s when I went to the bathroom and you’ll notice it’s spiked every time, like that’s what we’re talking about

Valerie: I got up, like getting up is usually the worst. Getting out of bed is usually the worst for me, but my day was pretty much, you know, I’d get up and get dressed. I’d sit in my car to drive to work. I’d walk the few feet to my desk, I’d sit at my desk all day. I’d go to my car, I’d come home and sit at the couch. Like I, I did not like moving around very much. and it, and quite frankly, it had gotten. Kind of scary moving around. and that’s, that’s actually, so for a long time I kind of just brushed it off and I wouldn’t go. And I’m like, you know what? I’ve been dizzy my whole life. It’s not really that big of a deal. and then one time I was going to get, I really needed some cookies and I pulled into the parking lot at McDonald’s to get, they have three, $4 cookies, if you want some cookies. stopped to go and got out of my car. And. Started to fall and nearly went head first into the corner of my car. And I remember thinking if I would have, luckily the way I fell, I ended up kind of blending in the crevice of my car instead of head first. But remember thinking like all I had to do was fall like a couple inches to the side, and I would have knocked my temple on my car door and potentially been passed out in this McDonald’s parking lot. you know,

Brianne: safety problem here.

Valerie: right. And I remember getting scared about that. And, you know, I did the wife thing and didn’t tell my husband about that right away. and then, Oh, maybe I want to say it was maybe a couple of weeks later, I was with him getting out of a car, and, passed out in a driveway. And that’s when he was like, no, I’m sorry. We’re no longer doing this whole, I get dizzy all the time. I don’t need to deal with the doctor thing. and so he’s the one that forced me to really start addressing that problem because it had just gotten to the point where, I really couldn’t control when I was getting dizzy, when I was falling, and I had more frequently started actually losing consciousness and not just getting busy and losing, losing my balance.

Brianne: know about pots at that point? Like were you aware that your heart rate and might’ve been a feature of what was happening.

Valerie: no. And one of the first things the cardiologist actually asked me was like, you know, do you feel your heart rate changing? and I thought it was a really. Weird question until I thought about it and I was just like, to be honest, there’s so much, so much more going on at that time that I’m really not paying attention like I have.

Brianne: idea.

Valerie: I’m more trying to make sure I don’t fall or suddenly I’m on the ground, like I’m not paying attention to what my heart is doing.

Brianne: Yeah.

Valerie: and so I really. I was really kind of discouraged when the halter results came back. and there had only been one episode. and I was really scared that they were just to kind of write it off at that point because at that point, after I got the halter, I had started looking into it, to see what that was. And it was like, I kind of wanted to scream because I was reading people’s stories and I was reading some of the symptoms and so many things that I checked. I mean, there was some things where I looked at and it was like every single thing on there was something I had explained and complained about to a doctor and was just like, how has this not in to this day? There have been things that have, because it’s still in such research, right? I’ve seen things come out where doctors were like, well, now we see that this is a sign, or this is a sign. It’s like, I’ve been telling people about this for years. When I look at. All the things that your autonomic system touches. Even down to that first diagnosis of IBS and seeing all the different things where it’s like, I’ve spent 11 years telling doctors about. All of these symptoms, whether as groups or individually and dealing with different treatments for different clusters of the symptoms and all of them being part of the same system. And nobody making this connection until two years ago, just blows my mind because. Because it’s, I just look at some of these symptoms sheets and I’m like, it’s all there. Everything that I’ve gone to see the doctor for is sitting right there on this paper. And, no one until two years ago, ever connected the dots. and even then it was the cardiologist. I think the only reason my primary sent me to the cardiologist is because they’re the people who handle syncope. and so it wasn’t even that my primary doctor was aware, or if, if he was, he didn’t say. Pots or anything about my autonomic system, but it was the syncope part that he was like, okay, you’re, you’re passing out, you’re feeling faint. We’re going to send you to a cardiologist. and so I don’t know if that was the, what caused my cardiologist to say, you know what? Even though the halter came back, we’re still gonna do the tilt test. I don’t really know what her. motivation was for doing that. I just remember being really relieved that she wasn’t just going to be another doctor who just sent me away because my halter tests seemed fine. and the tilt test was probably the most painful and worse medical experience of my life. and, and I’ve had a few surgeries. remember not really knowing what to expect and being really nervous. And they go in and, and strap me up. And it was like immediately I started feeling very ill. it did not take very long for me to start exhibiting signs, and I could kind of see out of the corner of my eye, the heart machine, and my heart rate was just all over the place, just in, up and down, up and down, up and down. And I remember the nurse saying something like, well, This might explain why you feel tired all the time. She’s like, if your heart’s doing this on a regular basis, you’re kind of getting your cardio just existing like,

Brianne: working that hard out all the time.

Valerie: and I just remember being, I just, I felt super, they ended up bringing out a bucket because I just felt so nauseous and I couldn’t hold my body up. and then, but I wouldn’t pass out. And so they kept. They kept me on it longer than they were going to because they were, I mean, they’re trying to make you lose consciousness. Right. And so they’re just, whatever they’re doing with the angles or with whatever, just kept making me feel sicker and sicker.

Brianne: And there’s a drug, I feel like that they sometimes use for some

Valerie: Yes. Yeah.

Brianne: for some

Valerie: yes. And, I don’t remember. I feel like they were going to do that and the nurse was like, well, you’re pretty symptomatic and so even though you haven’t passed out, we’re not going to give you this drug.

Brianne: it. If you have symptoms in your life and you don’t experience them in the first 20 minutes, then is the drug to make it worse? I don’t

Valerie: yeah, yeah. And I remember her saying that, because I started getting symptomatic right away. and so they didn’t because of that, because it was like really evident. They had already like elongated the tests a little bit to see if I would pass out. They’re like, we’re not going to torture you anymore. You’re, you’re really symptomatic, so we’re not going to give you this drug. We’re just going to call it. and then I guess what the cardiologist had told me later on was that she thought that the reason, probably the reason that I didn’t pass out was because the meds I take for fibro are also used to treat pots. and she’s like, but she didn’t want to risk weaning me off of those. Just to do another tilt test to make sure that I lose consciousness. Like she’s like, there’s enough history here. There was your heart rate was, you know, going up. There’s enough there that we really don’t need to do that. but

Brianne: while you’re on the meds. It’s not like it’s only when you’re not on them.

Valerie: right. And so she’s like, I’m pretty sure. She’s like, I’m pretty sure if we were to stop your fibro meds, you, based on what she saw there, she was like, you probably would have lost consciousness right away. and so I was just glad that, that, that she didn’t make me go through that again because. Anytime I just, my heartbreaks, anytime I hear somebody has to do a tilt test because I, I just felt so sick. and then afterwards they’re like, you might feel on, well for a couple hours, like I was down for two days. Like I was just, I was very, very sick afterwards. and so then I finally started getting on meds for pots and do, you know, had an excuse to eat chips more often. That’s the only thing I, I always thought, maybe I ate a lot of salt, but it turns out when I had to start tracking it, that I already had like a really low sodium diet and didn’t realize it. I kind of thought I ate a lot of salt. and so having to force myself to eat more salt was interesting. cause it goes so counter. To a lot of the wait narratives you hear and the like, healthy diet. And of course there’s much healthier things that have salt that I could be eating besides like potato chips. But, no, hardly ever somebody out there telling you, Oh, eat a high sodium diet. So, you know, when you talk about telling people to fuck off, like I always kind of. I have a little bit of joy inside when somebody tries to feed me like, Oh, you should try this diet. And it’s like, actually, I really need to be eating a lot of sodium, but thank you. Yeah.

Brianne: I know it’s not accurate to say that pots is a heart condition, but like to people who don’t know about all of this junk, it is effectively a heart condition. And so it’s like, no, no, I have a problem that affects my heart that I need more salts for. So everything you think you know about cardiac health does not apply to me. Thank you.

Valerie: yes. and so it’s my nice little, like, you know, middle finger to people sometimes who want to have a lot of opinions about these things. and so, yeah, so that happened, fall of 2017 so that was like the last leg. So I, I mean, I started. In 2007, 2008 and got like my, my, my pots diagnosis. And so that was kind of the last of this long line of diagnosis, in 2017, so just about a decade of, of ER visits and tests and doctors and back and forth. And now for the past two years, even though I’ve moved in that time, have consistently had, the same mental illness, joint. And, and. Autonomic, I guess, diagnosis across doctors, which is something I have never experienced before. And it’s really hard to divorce that from the weight thing, you know, I don’t know if that would have been a different story if I hadn’t lost the weight. because like all kind of happened at the same time. and then I think there’s also like the personal aspect though, it took a really long time, for example, for me to start using mobility AIDS. I didn’t. For a long time because I didn’t feel disabled enough. Right. which was really ironic because during kind of all of this, and, and I really think it had a big play in how hard I pushed. I was getting my, undergrad and disability studies. So I was learning a lot about disability culture, kind of separate from this medical model.

Brianne: Yeah.

Valerie: and so everything I was learning in that. Argued against the abelist notions that I held, but I still didn’t feel, you know, I think in a weird way, instead of making that better, it kind of made it worse because I felt like I was surrounded by these, like actually disabled people. Right. and, and that I, I, I wasn’t disabled enough, or I wasn’t, that I wasn’t. So often, in, in need of some kind of mobility aid that, that I should get one kind of thing. And there was a really bad, winter storm and like a lot of people with joint problems, the change in weather does not agree with me. And it was super cold and I was leaving on late night class and I got stuck on campus because I couldn’t, I couldn’t walk. and. That was again, my husband, who is great at making me do things was like, we’re getting you a Walker. We’re not doing this anymore. Because I called him, I called him crying. I had managed to get from one building. To like our student union, which was like halfway to the parking lot to my car. I, college campuses are huge. And I called him crying and I was like, I think I might need you to come pick me up. I can’t get to the car. I was like, I just, my, my legs and my hips, I’m in too much pain. I can’t do it. and he’s like, have you taken your meds? And I’m like, yes, I’ve taken my meds and I just, I, I can’t make it to the car. and that for him was like the last straw. and it, it was. More like mental and emotional acrobatics for me than anybody else in my life to come to terms of that. Not because I felt any way about mobility AIDS, not because I felt any way about people who use them, but because something in me said, you’re the way that your disabilities show themselves are not valid for this use. Right. Because I think we have really set ideas about who needs mobility AIDS, about what it means, need means to be ambulatory. Most of the times. I had started, you know, working out a lot when I had started losing weight and had really taken to running, which seemed really counterproductive. Or counter-intuitive rather to, to the conditions I had. and I tried to explain to people, okay, well, I’m usually fine as long as I don’t bend down. Like my, my falling problem tends to happen when I’m moving the other way, not back in, you know, back and forth. But, but that kind of stuff seemed to stick more to me than it did to anybody else. and so it was really like coming to grips with myself and my own internalized ableism to say like. You’re putting yourself in danger because you don’t want to get over whatever this thing is that you have. I have, and I, and I kind of laugh. I remember the first time I went to, some kind of, I think it was like a, a home show or something, and I was having a really bad flare. And so. I was like, I don’t even think I’ll be able to use the my Walker. And, so we went to a pharmacy and rented a wheelchair, just like a, like a transport chair. and that, just even being able to do that was such a huge, it was such a relief for one to just like do it and be like, I could, I can go out and I can experience things and not, not torture myself to do it. and, and it was just. This like such a relief and a freeing feeling to just accept that that was something I needed and be okay with that. and then also immediately was like thinking of all my friends that are chair users, because it was one day in the life of Valerie and the amount of people who made jokes about racing and things like that. And not one day I was just like, Oh my gosh, I. I suddenly am understanding what, why. That’s the first thing that comes out of so many of my friends mouths because they’ve been dealing with it for 25 years. Or like, it was like, this was one day for a handful of hours. And the amount of like cliched things I heard, just

Brianne: really does happen that

Valerie: this is, yeah. But, I think so. I think in a, in a lot of ways, I’m still. Kind of a like a fledgling, disabled person in kind of owning some of that and being really okay with some of that. And I think, part of that too is that I, I spend kind of a decent portion of my time being sort of publicly disabled, I guess, because I do. Disability advocacy work. And so I sometimes feel like, you know. If people know that last week I, I went running and now this week I’m using my cane. Are they thinking I’m only doing it because it’s performative or because you and, and nobody’s ever said these things to me. It’s all in my head. It’s all these, these worries. And even if they are thinking, if they’d ever said it to me, I have no basis for the way that I feel about this. But, I think there’s still a lot of learning in, in. Even after fighting for a decade, to have a diagnosis of, of feeling comfortable owning that sometimes, because of so much just internalized crap.

Brianne: Something that really, really resonates with me about it in this moment is also thinking like. I have so many of those fears and right now for the last, I don’t know, year, my mobility has been pretty good. The only time I really need assistance is like in airports at night, kind of. So I’m not, yeah, that’s its own thing, but I’m like, it’s not as top of mind as it has been for me in the past, but it’s like I 100% worry. Weirdly, both that able to, people will think that I don’t that like this is just a prop that I’m using to, I don’t know what, like. Get petty or something. And then at the same time I worry, and this is the part that I think is really unfounded, that other disabled people would think that I’m cost playing at being disabled, you know, which is like kind of what I’m hearing from you about the like being an advocate. And so if I show up with a cane to people think that it’s performative and like the weird part that I know now that I didn’t know. When I needed mobility AIDS for more is like when I see people talking about it. So when I see people who are sick, when I see people who are disabled, who are like, Oh, I’m thinking about like starting to use a cane, or I’m thinking about getting a chair, but I’m scared that like of all of these things that disabled people are always like, get it. You’re going to love it. It’s going to make your life so much better. It’s like the disabled people are never like, yeah, but do you really need it or do you just want people to think that you’re cool? Like. There are like maybe really specific contexts or niches where that discourse happens, but like it is not what’s happening in the community. And so, but even knowing that doesn’t make it go away. I just like was struck by that. How many times I’ve seen people just be like, yeah, get the mobility aid. You deserve it. It’s going to be great.

Valerie: Well, and, and how many times are we also those voices where we’re telling other people like, Oh, do it, do what you need to do. And then like. Don’t do it for ourselves. But yeah, I’ve experienced the same thing. So many people have been so supportive. but, you know, like I said, it’s, it’s, I know it’s my barrier. It’s whatever mental thing I’ve put up, because I haven’t heard that from either side yet. That’s the, that’s the consistent narrative. And I’ve gotten much better at, like, I very happily use my cane now when I need it. But it’s also, it is, it’s smaller than a rollator, and it’s not a chair and it’s, you know, I think it, it is, it’s still almost like a baby step. And I think right now, like my mobility has also gotten a lot better since once I, started meds for my pots. And so I don’t know if I’ll get to a point where, where maybe I do need to start looking at a chair or going back to a rollator or something like that. But I hope that using my cane more freely will mean that if I do get to that point, I’ll be, I’ll be a little bit more, a little less scared. I even considered considered at once because I’m pretty sure at this point, airports are just hell for any disabled person. because they are the absolute worst, and I travel fairly frequently and had never considered. Up until, I think somebody mentioned it on Twitter, maybe, or maybe a colleague, of asking for the, for early, looting. and that, you know, technically I would be eligible for early learning, you know, and it’s things like that, that I still pause and I’m like, no, you know, that’s, I don’t need that. Right. And, and my husband will be like, okay, every time we’re in an airport, you’re an absolute pain. You’re always so uncomfortable, you’re always like, you can take advantage, like you’re allowed to do this. and so there’s still a lot of little things like that. Sorry. There’s still a lot of little things like that that I’m, I’m learning to, to grasp and that if I need it to use it. And like you said, I don’t know how many disabled people have been the people to tell me, like, if you need it, use it. And I’m the one being like, Oh, I’m, you know, I’m not disabled enough to need that, or whatever.

Brianne: need it?

Valerie: I don’t really need it. Yeah. If I can carry my backpack and use my cane, I don’t need to get on the plane early or whatever. It doesn’t matter if I’m on fire by the time I actually get to my plane seat, because every single place that I bend hurts, you know, I’ll, I’ll, you know, I’ll grab, I’ll, I’ll take some more pain, you know, my pain meds and I’ll grab a pickle and I’ll be fine or, you know, whatever. and it, it’s always everybody else around me that’s. Fighting against that. And me being like, no, I’m good, I’m good. You know? there’s even been times there’s been suggested, you know, because airports are particularly horrible. Well, why don’t you just request a chair for when you’re at the airport? And I still haven’t gotten to that point where I’m like, I, you know, I know intellectually that’s probably the best option. but I, I’m still, you know, I’m still growing into that kind of confidence. I think.

Brianne: Yeah. Yeah. And it’s like, it has its own things too. Cause like with airport chairs, cause I do, I request them sometimes less than I did a couple years ago. But it’s also like, airport chairs are difficult because it’s like the stewards are also definitely overworked and underpaid and you’re like, Oh God, I’m a part of this whole other shitty system now that I wouldn’t have been before. And like I don’t. Want to do that, but also if I like can’t get on the plane in time because I can’t get there, then that’s like, I should pay someone to do this. Which it’s not. I mean, tipping is like pretty typical, but it’s not, it’s a free

Valerie: right?

Brianne: from like accessibility option, but yeah, it’s not, it’s, it’s very loaded and like. I think I experienced this and other people I’ve talked to experiences. It’s like if I don’t need it every time, then I have to make a call about it. Someone I talked to, I think the episode’s not out yet, but someone I talked to you said she was like, I book a chair every time, and then when I check in, I tell them that I don’t need it if I don’t need it. But then I

Valerie: I’ve heard that as well.

Brianne: And I’m like. Oh, that’s what an idea. I’m always like, well, do I think that I’ll probably be okay. Okay. Don’t do it. I’ve like pre-booked and cheered twice ever. Even though I’ve asked for them on other occasions, like it feels too scary to be like, no. In the future, I accurately predict this is going to be difficult instead of like in the future I’ll be great. No problem. Stop whining, future self like,

Valerie: Well, it’s like, I think things like pots, things like fiber. I mean, I think really a lot of, chronic illness, it’s, it’s the flares, right? Like, you never, you never know. I might feel fantastic or as fantastic as I ever do, feel, right. six hours before my trip, and then, right as I get to the airport by the, you know, by the time I get to my gate at the airport, I want to be in tears, you know? And it’s just, It’s sort of impossible to know. It’s really, you know, and I’m really lucky for the friends and the people I have in my life because. I’m sure there are a whole lot of people who would not want to put up with what it means to sometimes what it means to be friends with someone with a chronic illness, because people want to make plans for that show next month or that game in two weeks. And maybe I’m feeling really great about it at the time, and by the time it comes, I’m in a totally different place than I was at that time. And there’s just no way of knowing. So yeah, I’ve heard other people. I would have said they just always do. and, and maybe not only for airports, but whether it’s for a concert or whatever it is, that they always do the accessibility option. And then if they’re, if they’re feeling up to it that day, and can say, I don’t need it, then they go that route. But kind of always preparing. And I think. Maybe part of it is coming to it a little bit later in life and that not being a habit for me. Maybe it’s a part of this mental block that we’re talking about. I don’t really know, but there’s, there’s still something in me that hasn’t quite gotten to that point yet. Yeah. And so, but, but it really ends up only hurting me. Right. And then I’m, I’m at that thing that I’ve been so excited about doing, and rather than really being able to enjoy it because I have a seat, for example, I’m there in pain because I didn’t get the ADA seating. And so now I’m on my feet or something like that, and, and didn’t do that pre-planning. So I’m, I’m, I’m trying to get much better at that. It’s hard.

Brianne: like I, cause it’s also interesting, like with a partner, it’s like I’m thinking about the face that my husband makes when he thinks that I’m lying to him about whether or not I’m doing okay, right. Of like, Oh, we’re both doing this thing where we’re standing and he looks at me and it’s like, how are you doing? And I’m like, I’m okay. And he’s like. true. I think you’re lying to me because it will be annoying to try to solve the problem that you’re having.

Valerie: My husband also has one of those faces. Yeah.

Brianne: okay. Yeah. I would be happier if I were sitting

Valerie: Yeah, that’s, that’s a regular, yeah, fairly regular occurrence. But to be fair, like, like I said, I mentioned earlier, he also has chronic illness, so sometimes I get to also give him the face. his situations are a little bit different, but we both have our faces for when the other one’s lying about just how well they’re doing. So.

Brianne: It’s good. That’s, you know, support

Valerie: Okay. We’re able to criticize each other. We just can’t make those decisions for ourselves apparently.

Brianne: Yeah, I know. It’s so, it’s such a, that’s its own other thing, but yeah, it’s weird how that works.

Valerie: Always.

Brianne: well we’ve covered a lot and, and I think we’ve pretty much cut up to the present. is there anything about chronic illness and disability and all of this stuff that we haven’t gotten to that’s on your mind?

Valerie: Oh, I mean, I could talk about this topic forever. So I will say, I don’t want to say no because that’s an accurate, I will say, I think that might be for another conversation. I think there’s, I think the biggest thing that I’m hoping to start saying, and I think I see this so much because it’s in part of my work, is that we are looking at chronic illness, more like a disability issue. and not like a. I don’t know, like a, a tourist thing. I feel like sometimes, sometimes we’re not thinking about chronic illness when we’re looking at policy and legislation and things as it relates. Due to disability policy and protections. and I hope things like, you know, this podcast and, you know, I’ve listened to some of the other, interviews and I think it really helps to highlight how much of a, a daily, I mean, you’d think that would be defined in, in. Use of the term chronic. Right? But I think because of the flares, because of the ups and downs. Right. and for a lot of people, just the, not quite so evident nature of a lot of chronic illness. That it’s really easy for that to get overlooked in a lot of our discourse. So I just, I really appreciate, people like you that are putting these stories out there because it helps the people that do the work that I do to show why this is important beyond. Some of kind of what, what we have like our standard idea of, or definition of what we think disability is or what we think it looks like. I know I work with people because I do disability policy. I work with disabled people all the time. And how frequently other people who have had maybe maybe have congenital disability or some other kind of physical disability had just never really considered the way. For example, stress. Might affect somebody as disability, because that’s not necessarily something that exacerbates their disability. Right. or different things like that. And it’s, I think it more comes out of a, like a naive space. But, so to them it might not be as important to talk about. overtime restrictions or something like that because extra work doesn’t cause anything worse for them. Where some, sometimes I feel like I’m killing myself to work full time job. Right. and, and so those kinds of discourses are able to happen when people hear these kinds of stories. And so I think hopefully the conversation continues to go that way. because there’s, there’s things that have to be looked at a little bit differently because chronic illness is different.

Brianne: Yeah. Yeah. And one of the things I don’t even, this is something that I’m still trying to develop better language about, but it’s like, I think so many conversations about accommodations are about static accommodations, and that’s the thing, right? Like, okay, if we put in a ramp, if we put in an accessible bathroom, if we put on closed captions, like. Boom, done. We fixed that problem. We did the thing. It’s accessible now, and those are big things. I’m not trying to say that we don’t need and want and need to keep working on them. And I’m also not trying to say that those problems are solved across the board and everything is good for people who need ramps and close captions because I know that that’s not true, but because that’s like such a. A common, probably cultural understanding of what an accommodation looks like. This is exactly what you’re speaking to is like, there’s this whole other world of accommodations that people with chronic illness typically need, and some of them overlap, but a lot of them don’t. And it’s like even, yeah, having a flexible, flexible schedule. So overtime is a great example, but. If I’m going to have, like I haven’t been working working in two years and I’m very functional now, I think I could probably go out and get some contract work, but I need to be able to work lying down. I need to be able to work lying down like 80% of the time. And so that’s not a thing that people think of as an accommodation.

Valerie: Right?

Brianne: It’s just not. And so, and that’s only one small example because sometimes I would ask people that, like people who I talk to who don’t work, like what do you think it would look like for you to be able to work? And. It’s hard for people to even imagine sometimes, and it’s because these, these accommodations don’t even exist in certain spaces, so yes.

Valerie: remote work really as remote work becomes more popular that that kind of, those kinds of accommodations become. More accepted, even if it’s kind of accidentally, like, if you don’t know that I’m laying on my couch doing my work, but my work is still getting done, then maybe it’s not visible. But when we’re having those conversations with our friends who also are managers, they’re responsible for hiring people, then they know, Oh, Hey, I know somebody who has to work like that. I think, I know you can get your work done doing that. Right. And, It’s a valid way of working. Right. because, yeah, that, that’s, that’s me too, where it’s like, or there’s days, just really, really simple things. Sometimes when I get, when I’m flaring really bad, I have a hard time speaking, for example. And it’s really confusing for some people how one day I can just be going and talking and, you know, it’s kind of gift of gab kind of thing, and then the next day I can’t get words out at all. Right. and it’s, it’s not static. You know? but as people see that you’re able to work through that, hopefully that opens the door for more people who really, who are currently not able to work, who really want to and could be able to, with the right understanding.

Brianne: with what we can now call dynamic accommodations as the opposite of static

Valerie: There we go. I like it.

Brianne: this problem is solved. Now we’re ready.

Valerie: Yeah. Yeah. So I think that’s my, that’s my, like, optimistic next step, maybe.

Brianne: I love it. I love it, and I love, like I do. I see a lot of people out there working on this stuff and chipping away at it in different ways. Of like trying to educate employers, trying to educate people about the kinds of accommodations that they can ask for, trying to change legislation. Like there’s so many different arms to this, and I am also heartened by the conversations that are happening. Not, I don’t think that we need to put silver linings on everything or like forced optimism, but I think it’s true. There’s a lot, there’s a lot more conversation and movement about this and that is excellent.

Valerie: Yes, yes. I agree.

Brianne: Awesome. Well, thank you so much for taking the time to talk to me. I know. I like, I burned through a lot of people’s energy sometimes with these

Valerie: No, this is,

Brianne: much.

Valerie: this has been great. Thank you so very much.

[guitar riff]

Thank you for listening to episode 67 of No End In Sight!

You can find Valerie on twitter @MADtastically and you can find me on instagram and twitter @bennessb. 

You can find this show on instagram @no.end.in.sight.pod.

Don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, I’d be just as grateful if you left a podcast review on Apple Podcasts/iTunes.

As usual, don’t forget that I has a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.

And finally, my cross stitch pattern store, Digital Artisanal, is back online! I’m giving away unlimited free patterns right now with the coupon code NEIS.

Thanks for listening.