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.
Brianne: Okay, well then I like to get started just by asking people how was your health as a kid?
Valerie: 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 guess I just didn’t really 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 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 joked about me being a hypochondriac because I was always thinking I was sick or feeling sick and was considered very dramatic.
Valerie: And when I think about it now, there is some truth to that. Like 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 been cooking bacon or something and got popped in the face. But I was convinced until this burn went away that it was a cancerous mole. And so I definitely was dramatic, but I think part of that stems from the fact that 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 dizziness and the shaking. And I remember, I have a very distinct memory when I was in about fifth grade. And, I was a cheerleader for a little football team and we were practicing a routine, and I would have these 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 that being like one of those things that was chalked up again to, “Oh, Valerie’s being a hypochondriac. Valerie is being dramatic.” And so when I look back on it now, and I’m like those things… 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.
Brianne: The symptoms 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 explains to me what the guy from Back to the Future has, and she explains it as, “well, he can’t control his muscles” or something like that. And then I’m like, “Hey, that happens to me all the time.” In my brain, that’s a connection that 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 really scary for my parents because it’s just… I don’t know how often kids get headaches in general, let alone like the kind of migraines where… 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 matter how many Tylenol I took. 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: Yeah, I was going to ask about duration 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 really young, so by this point, my mom’s like, “Well, 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 eye stuff. They found that I did have a significant 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 very obvious place in her eye where there’s something blocking her vision.” So we went that route. I didn’t have a brain tumor. By the end of all of this, they were wanting to put me on… oh, and I’m gonna forget what it’s called… the painkiller, not Dilaudid, but another opioid painkiller. And my dad was like… 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, 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 one of the side effects was sleepiness. And so what would essentially happen is I’d get a really bad migraine. I’d 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.
Brianne: You got to avoid the worst of it, but you weren’t functional instead.
Valerie: Right. And so I had to do special stuff with school, so that I didn’t get too far behind on my work. And this lasted like all of middle school for the most part. And I think that was my first experience with the sort of treat the symptoms type of medical care because we never did find out an answer. 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 paperwork or whatever was that I was getting migraines, which is fine. Maybe that’s just what it was, but it was more… by the end, it was just, “Well, we’ll give her pain meds.” And I’d be really interested to see what that looks like now because I think in today’s world there’s no way that the final thought would have been, “Well, let’s give her opioids.” Like that definitely wouldn’t have happened, I don’t think, today.
Brianne: For better or worse.
Valerie: And I think my parents having both been addicts were enough to be like, “We’re not giving my middle school age kid opioids three times a week.” But yeah, I think that kind of set up… when I think about it now, saying it out loud, I really shouldn’t have been surprised what my, 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 the symptoms.
Brianne: Plan instead of a treatment plan, basically.
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.” And so 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 ride out the end of puberty, or they just kind of went away. And it was like, “Hey, remember when Valerie used to get really bad migraines?” But at that same time, so between eighth grade and high school, because where I’m from middle school was sixth through eighth and then nine through twelve. 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 because 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 stop playing snake or whatever it was.
Brianne: Cellphones were very captivating back then compared to now. You had three things you could do.
Valerie: I was really into that snake game.
Brianne: It’s exhausting to type or do it.
Valerie: It’s like we’re still paying… like I wasn’t up all night talking on my cell phone. But I was going into high school and kind of that teenage, so I think my parents just thought… I had gotten my own room or had actually started using my own room for kind of beginning period of that, so I think my parents thought I was just not going to sleep until 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 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 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 makes you balance this weird point because 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 insomnia for a couple of weeks when something horrible happened is very different than lifelong. I think it’s the same as when you hear people who use mobility aids, and then somebody is like, “Oh, well, I broke my foot once, and I know exactly what that’s like.” I feel like it’s the same kind of thing.
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 feeling of sleeplessness, but that people also feel very comfortable with giving advice.
Brianne: Like, “Oh, here’s what helped my sleep hygiene. I stopped looking at my 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…” I run a lot. The amount of people who’ve told me like, “Well, don’t go to the gym at night.” Trust me I had insomnia way before I was working out at night.
Brianne: Just a thing I added to add, unrelated.
Valerie: Yeah. Yeah. But so, that’s when my parents realized that I was having some like legitimate, not just 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 nightmares and night terrors. And 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 so that was kind of my first… starting to see a mental health team was I think my first sustained treatment type experience. And even that was very… 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. ” That kind of thing.
Brianne: It’s hormones. 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 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. 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. This is different.” And as I got older and done research 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 an overreaction or as something 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. 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. So I was like, if people… she spoke the language, and if people aren’t gonna listen to her, they’re certainly not gonna listen to a 15 year old Valerie, so what’s the point? 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 got really, really depressed. 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 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 and 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 so many things had changed physically for me. I was less active.
Brianne: It was a plausible explanation.
Valerie: It was a plausible explanation.
Brianne: As far as these things go. Yeah.
Valerie: Yeah. And so, I guess that we’ll stop there. So that’s the childhood background, 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 what have you. And I’m like, “Oh, well, that’s been happening since I was 12,” but nobody ever connected it. But that’s my experience, at least, with the system up until I was about 18, which is when I started taking care of the health on my own because I had moved cross country and my mom was not just a drive away or a room away. She was 1300 miles away. So, finally I had to start making my own doctor’s appointments and those calls for you anymore. like that.
Brianne: I’m wondering, so you’re talking about it as being obviously not a helpful or supportive experience. Did you go through any treatment protocols? Or were you seeing the same doctors and they were just not interested in the gravity of 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, you know, you have your pediatrician or what have you, but that was one of those things that 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 that one was a specialist to specialist to specialist kind of thing.
Valerie: And then I also went through a couple therapists and psychiatrists, but that was more of 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 therapist,” which I guess there’s a difference there.
Brianne: Yeah. There’s so many small distinctions 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 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 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 either complete disregard or sometimes just legitimately being honest of like, “There’s nothing else I can do for you,” 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 a progressive type of treatment. Yeah.
Brianne: Beyond the scope of what I can help with kind of stuff.
Valerie: Right, right. Rather than just kind of throwing your hands up and saying, “I don’t know.” Yeah.
Brianne: Yeah. “Nothing’s wrong. Go home. Lose weight.” Ugh. Okay, 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, makes sense. I remember my first ER trip very distinctly because, to this day, I feel like I’ve never been in pain like I was that day. It was a Sunday afternoon and 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, the house I was renting a room in 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 the mid level of the house where my friends and roommates were. And I remember 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 on?” I mean I literally just walked downstairs to go to the bathroom fine, and then suddenly was just doubled over 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 made sense. You have a bunch of stuff in there.
Brianne: It’s where a lot of important things live.
Valerie: A lot of important things are in there. And it was a very general… that’s the way I kept explaining it to the doctor was I felt like I was being just 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 GI, it could have been my reproductive organs. There was just so much going on, but they didn’t see anything in imaging. And this was 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 Vicodin was not helping the pain. They ended up upping the dose or doing 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 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 feel like. That would be difficult.
Valerie: Yes. And if I hadn’t had a really good short term disability policy that kicked in right away, I would have been in a lot of trouble. In that way, I was protected in a way. A lot of people aren’t.
Valerie: Because our short term disability kicked in after like two weeks. I know some people whose policies don’t kick in for like two months . 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. 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 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 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. At this point, 11 years ago. 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 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.
Brianne: Your doctor told you that that is the way to go. And then the people in the ER typically are mad that that’s where you are. It’s an impossible situation.
Valerie: Snide remarks and looks. And not to mention, like I’ve mentioned before, I was very lucky to have insurance, but they’re still like, I don’t know what, a $100 copay for the ER visit versus 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 at least $100 every time, which for all intents and purposes is cheap for what a lot of people might pay, but isn’t really cheap regularly to go.
Brianne: It’s cheaper than an abulance ride, if you had to use an ambulance to get there.
Brianne: That’s not a good thing. That’s a bad thing about ambulances.
Valerie: Right. So also, essentially paying $100, 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: Etc. Tests. Yeah.
Valerie: Right. And then 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. And when I would talk to my primary care doctor… I remember first talking to my primary care, and the first thing they did was put me on a selective diet. So I had this huge chart, and we went through it by each week, which I appreciate. It was pretty thorough, I guess, but they wanted to make sure I didn’t have celiac or I wasn’t ingesting something that was causing some kind of allergic reaction or something like that. So, 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. It 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 5’5” ish. I think I’ve actually grown some. So I think I was like 5’4” something at the time, and I think I was probably well over 250 pounds. So everything that everybody had ever told me about my weight, 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. I’m not agreeing 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 where the pain was, I was getting that reinforced by lots of places. So I was trying 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, 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: Sure. But going 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 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: Did they do a laparoscopy? Like also a scope?
Brianne: No. Okay.
Valerie: And to this day, my mom is still actually really upset about that. Because by the time I got a diagnosis, I think I had seen maybe three different OBs specific to my core pain, and have still never had one. And to this day, my mom is pretty convinced that I have endometriosis. But I told her, “At this point, I really think they would have found that,” but she’s like, “They’ve still never done that singular test.” But as the time went on, my pain also got more widespread throughout my body. And 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 bendy 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… 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. 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?
Brianne: 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 they had me keep a food diary when I was doing their specific 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 did the official scope for endometriosis. Just 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 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? Because you were off work 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 lucky experience, I guess, or supported experience, I guess you can say, in that I had some flexibility, but that whole time I was pretty much on some form or another of warning because of attendance, but also my supervisors and my managers and such 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 their procedural requirements… 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 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 intermittent FMLA or something like that, or else I probably would have used it. Because 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 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 that whole three or four years existed on never having sick time, so a lot of unpaid time off that was taken. I benefited from having managers that would work around that.
Brianne: Right. That trusted that that was really what was going on. Because 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.
Valerie: But it was 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 feeling okay.
Brianne: Your voice needed 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. Which I wouldn’t be able to do that if I was working face to face with somebody. But I could do that and kind of bundle up in my chair for a second and say, “I need a breath.” 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 so I think 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 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 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 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 mental health was very, very low because I was in so much pain. And, 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, 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, huh?” 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. 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.
Valerie: Because nobody else is making this valid.
Brianne: Yeah. Without external validation. This is one of the, I don’t know if I’d say the biggest surprises, but something that I really didn’t expect was to come to understand how completely meaningless diagnosis is most of the time. I don’t mean to say that the way that we identify or experience our illness or chronic pain is not valid. I just mean that 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 wildly transform the way that other people relate to it. And that’s so messed up.
Valerie: Especially the last point you make about 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 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.
Brianne: In this seal of validation. This seal is meaningless.
Valerie: Yeah, it’s like this is not the first… so the first official diagnosis, for example, that I got for my stomach happened when I went to Ohio. And 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.
Valerie: Yeah, so I don’t know. But that was the first time anybody had even tried to put like a name on my stomach pain. But it was just like this random kind of catch all sort of diagnosis, but it still somehow lent validity to pain I had been having for like six years already. But it just seemed like such a kind of ridiculous thing to throw out there.
Brianne: Yeah, totally. And not because I think that the pain is not real, but just because you’ve been experiencing this pain for ages. Nobody has an explanation. They still don’t have an explanation. But we know that 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. What?
Valerie: Yeah. Yeah. So, I don’t understand it, but it is what it is, I guess. And so yeah, I moved to Ohio and kind of had to start this all over again, and so that was the same… 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 moved, I was in Cleveland and Cleveland has Cleveland clinic and maybe now I can get some help. But it ended up pretty much being the same thing. They tried some diets. They sent me to an OB-GYN. They sent me to a GI doctor. And I ended up with the diagnosis of abdominal migraine and IBS is what they had ended up saying. At this point, the pain 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 the only thing that was in there that they could try to rectify it and everything else… going back to what we’re talking about with this 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.” But it was consistently off enough that the doctors were starting to say, “Okay, well something 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 proved 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. Because pain and fatigue, maybe there’s other stuff, but I think pain and fatigue are the big ones… but if there’s no lab work, if there’s no… you can show up with pain and fatigue, and they’re just like, “Cool, good luck with that.” But as soon as there’s a different question of why aren’t you absorbing this? Why aren’t you converting this? Whatever it is. That’s when there’s a hook, even if it often still doesn’t lead 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 gotten married and was able to start going to college. At the time I’m thinking I was going for social work, but I think some of the classes I had taken had started educating me a little bit more on how to advocate for myself and how to 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 dizziness and the dizzy spells and the blacking out started. And that had not happened before. I had been, like I said, since I was in fifth grade or something, I remember having 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.”
Brianne: And it’s not necessarily better.
Valerie: Right, right. And that was when my husband was like, “Okay, you never sleep, so the fact that 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.”
Valerie: So I lost 130 pounds, and it got worse.
Brianne: Ha. Jokes on you medical system.
Valerie: I was really actually super upset about that because it’s really hard and stressful to lose weight, but I remember one of my first doctor’s appointments after to talk about with my rheumatologist, who we’ll get to later, but had talked to and he kind of just flippantly is like, “Well, you know, 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 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 one of the things… I went down a PCOS rabbit hall in my own health history, which I do not have PCOS, but anyway, one of the things about PCOS is 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, 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 all so terrible?”
Valerie: Like, can I just not win?
Brianne: Another 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.” Because 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 as I started to lose weight, it was like the pain was magnified suddenly. It was almost like my weight was insulating me 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, then as I’m supposedly getting healthier, 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 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 POTS 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 printed out this whole research study that was done and 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 it had been years of doctors telling me, “Well, if you lose weight, you’ll start to feel better.” And I think, 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 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…
Brianne: The blacking out, fainting stuff, right? Yeah. Yeah.
Valerie: lt 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 advocate better. So I think the kind of last leg before I got diagnosis 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 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 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 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?” It just being the way that I was treated 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 to finally getting a diagnosis. But I was going to a learning hospital, and they had done a lot of tests again. Drew my blood. And I had gotten a call back from the doctor, and she was very concerned because my white blood cells were extremely elevated, way more elevated that they had been in the past. They have always… 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, “Well, we think you might have lupus,” which was a 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 ruled out the lupus. And the rheumatologist was the first person 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 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 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 match.” I don’t meet the threshold even though it was obvious that my body is in a continual state of fighting something, my RA factor is continually elevated. He’s like, “I cannot treat you and have it be covered as rheumatoid arthritis.” So that was when I got my first official fibromyalgia diagnosis. At the same time, because I guess I was just on this kick 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 given 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 will 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 outside of it and knowing a lot about chronic illness and medical bias, I can 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 subreddit dedicated to people who have, quote, survived relationships with people with BPD.
Brianne: That was going to be my guess. It’s a lot of like, if not accurate, support groups for other people.
Valerie: Yeah. It doesn’t 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 a strong, stable relationship if all I had was a diagnosis and the internet.
Brianne: Yeah. I would imagine. Thinking about it because the only, I don’t even know if I’d call it positive, but the only representation of borderline personality disorder would be crazy ex-girlfriend, which is recent.
Valerie: Yes. And have you seen the show?
Valerie: So when she gets her diagnosis, and he specifically tells her not to go look it up online. And she goes to the bathroom and she looks it up online. That was me. When I watched that scene that was a hundred percent how I was feeling. You’re faced with the suicide numbers and you’re faced with the support groups and you’re faced with all of this 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.” This was 2015. It was not a very optimistic year for me.
Brianne: Yeah. And weirdly, I was actually thinking this morning about this thing of when stuff shows up in your chart, how does it create bias? I was going to ask about it on Twitter this morning and then I didn’t have time. So if you see it show up later know that it was inspired by both thinking about it already, but this conversation brought it back. But 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. This is a huge separate, like outside of the actual illness, huge problem that all of these practitioners are obviously defining and imagining all of these diagnoses 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. 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 I think it’s less so now, but there’s still a lot of people who don’t think fibro is real. But I remember, 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. 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. And it wasn’t opioids. It was like I could function on it. But I was terrified to tell her because I thought she was going to roll her eyes. But at that point, 10 or 15 years in the medical field had passed and my mom was like, “Oh, this is totally valid.” But yeah, I remember being terrified of like my mom’s gonna roll her eyes and be like, “Oh, you’re one of those people.” And I think people with ME are very much going through that right now, and people with CFS have been going through that forever. Where it’s, “Oh, it’s the lazy person’s disease,” or it’s just, “You know, we’re all tired,” or this idea 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 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, “This is going to make things worse. Nobody’s going to believe me. Everybody’s just going to think I’m”… 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, “Sure. Right.” So I remember, as weird as it is, being frustrated that I wasn’t sicker because I remember thinking like, “Well, if 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 valid diagnosis, this believable diagnosis.” Especially because my doctor had just flat out said, “This is what I would diagnose you with, but I can’t because these numbers.” 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…” And that’s just such a weird way to think. But I remember thinking that if I was just a little bit sicker then I wouldn’t be so scared about this.
Brianne: And 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: People 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.” And that’s not what it means.
Valerie: Yes, yes, exactly. And I’ve had the exact same people say that with mental illness. 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, 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… this illness.” And it’s not that I’m unaware of the negatives, but as somebody who that is who I am, I’m also not going to say I wish I wasn’t that person. There are good and bad traits to everybody. We all have 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. And so I kind of felt the same way where it’s like, “Yeah, I’m not romanticizing that I’m sick. And maybe if there was something that would take my pain away tomorrow, I would take it. But 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 it’s not romanticizing. It’s just kind of making the best of what it is. And oddly, if I was a little bit sicker, I could maybe make it even better because I’d have better medication.
Brianne: And in that case it’s so extra ludicrous because 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 extra like, “Hmm, what a weird thing that we’re learning about how diagnosis works?”
Valerie: Yeah, and I’ve even had to go in… I’ve laughed at myself because I’ve had to go into urgent care and get steroid shots when my joints have locked up because I don’t have a prescription for the type of steroid shots I’d get if I had an RA diagnosis. So I get to go in and it’s still kind of that chronic sickness attacks 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 my swelling will go down because I can’t take Humira 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.
Brianne: And the blood markers.
Valerie: They’re almost there. So you figure out your ways around it. At this point, I just kind of am grateful for the stability in the diagnosis that I’ve had. Now I’m in DC. 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, 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 completely night and day difference. And so it was the blackouts, which took me, I think another two years before I got the POTS diagnosis, after the fibro. I think they wanted to lump everything into this fibro thing. And, I kept talking to my rheumatologist, talking to my primary care, and both of them were like, “Well, getting dizzy and passing out really isn’t a fibro thing. The exhaustion definitely can be attributed to that, but the rest of this isn’t, but we don’t really know what’s going on.” And, 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 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 referral to a cardiologist who had me do a tilt test, 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 holter first?
Valerie: I did do a holter first. My holter actually came back… I only had one episode, and so it wasn’t enough. But then I was like, “Well, I sit in an office all day. I don’t change my orientation that much.” And it had gotten to the point where I really didn’t like moving very much.
Brianne: When I was 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 is when I went to the bathroom, and you’ll notice it spiked every time.” That’s what we’re talking about.
Valerie: I got up. Getting up is usually the worst. Getting out of bed is usually the worst for me, but my day was pretty much, 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. I did not like moving around very much. And quite frankly, it had gotten kind of scary moving around. 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 for $1 cookies, if you want some cookies. I 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 landing in the crevice of my car instead of head first. But I remember thinking all I had to do was fall 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.
Brianne: A bigger safety problem here.
Valerie: Right. And I remember getting scared about that. And I did the wife thing and didn’t tell my husband about that right away. And then, 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 dizzy and losing my balance.
Brianne: Did you know about POTS at that point? Were you aware that your heart rate might have been a feature of what was happening?
Valerie: No. And one of the first things the cardiologist actually asked me was like, “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 more going on at that time that I’m really not paying attention. I’m more trying to make sure I don’t fall or suddenly I’m on the ground. I’m not paying attention to what my heart is doing.”
Valerie: And so I was really kind of discouraged when the holter results came back and there had only been one episode. And I was really scared that they were just going to kind of write it off at that point because at that point, after I got the holter, I had started looking into it to see what that was. And 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… 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 I was just like, “How has this not…” And 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. It just blows my mind because 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 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 passing out, you’re feeling faint. We’re going to send you to a cardiologist.” And so I don’t know if that was what caused my cardiologist to say, “You know what? Even though the holter 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 holter tests seemed fine. And the tilt test was probably the most painful and worse medical experience of my life, and I’ve had a few surgeries. I remember not really knowing what to expect and being really nervous. And they go in 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 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.”
Brianne: You are working that heart out all the time.
Valerie: And I just remember being… I just 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 me on it longer than they were going to because they’re trying to make you lose consciousness. And so 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 people.
Valerie: Yes. Yeah. 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: 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 know.
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 really evident. They had already 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 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 probably the reason that I didn’t pass out was because the meds I take for fibro are also used to treat POTS , 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. She’s like, “There’s enough history here. Your heart rate was going up. There’s enough there that we really don’t need to do that.”
Brianne: And happening 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 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 she didn’t make me go through that again because my heart breaks anytime I hear somebody has to do a tilt test because I just felt so sick. And then afterwards they’re like, “You might feel unwell for a couple hours.” I was down for two days. I was very, very sick afterwards. And so then I finally started getting on meds for POTS and had an excuse to eat chips more often. That’s the other thing, 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 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 because it goes so counter to a lot of the weight narratives you hear and the healthy diet. And of course there’s much healthier things that have salt that I could be eating besides like potato chips. But, hardly ever somebody out there telling you, “Oh, eat a high sodium diet.” So, when you talk about telling people to fuck off, I always kind of 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.”
Brianne: Yeah, hard no.
Brianne: I know it’s not accurate to say that POTS is a heart condition, but 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 salt 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 middle finger to people sometimes who want to have a lot of opinions about these things. And so that happened fall of 2017, so that was like the last leg. So I started in 2007-2008 and got 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 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 autonomic diagnosis across doctors, which is something I have never experienced before. And it’s really hard to divorce that from the weight thing. I don’t know if that would have been a different story if I hadn’t lost the weight because it all kind of happened at the same time. And then I think there’s also 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, which was really ironic because during all of this, 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.
Valerie: And so everything I was learning in that argued against the abelist notions that I held, but I still didn’t feel… 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 actually disabled people and that I wasn’t disabled enough or that I wasn’t so often in need of some kind of mobility aid 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 a late night class, and I got stuck on campus because 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 our student union, which was halfway to the parking lot, to my car. 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. 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 can’t make it to the car.” And that for him was like the last straw. And it was more mental and emotional acrobatics for me than anybody else in my life to come to terms with 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, “The way that your disabilities show themselves are not valid for this use.” Because I think we have really set ideas about who needs mobility aids, about what it means to be ambulatory most of the time. I had started 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 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. My falling problem tends to happen when I’m moving the other way, not back and forth.” 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 kind of laugh, I remember the first time I went to some kind of I think it was like 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 just even being able to do that was such a huge… it was such a relief for one to just do it and be like, “I can go out and I can experience things and not torture myself to do it.” And it was just 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 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 in that one day. I was just like, “Oh my gosh. I suddenly am understanding 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.” This was one day for a handful of hours, and the amount of like cliched things I heard.
Brianne: “Oh this really does happen that much, okay.”
Valerie: Yeah. But, I think in a lot of ways, I’m still kind of 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 spend kind of a decent portion of my time being sort of publicly disabled because I do disability advocacy work. And so I sometimes feel like if people know that last week 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… and nobody’s ever said these things to me. It’s all in my head. It’s all 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 even after fighting for a decade to have a diagnosis 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 that 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 in airports at night, so I’m not… yeah, that’s its own thing, but it’s not as top of mind as it has been for me in the past, but I 100% worry, weirdly, both that abled people will think that I don’t… that this is just a prop that I’m using to, I don’t know what, like get pitty 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 cos playing at being disabled, which is kind of what I’m hearing from you about being an advocate, and so if I show up with a cane do people think that it’s performative. And the weird part that I know now that I didn’t know when I needed mobility aids more is 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 starting to use a cane, or I’m thinking about getting a chair, but I’m scared.” That 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?” There are maybe really specific contexts or niches where that discourse happens, but it is not what’s happening in the community. But even knowing that doesn’t make it go away. I just 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 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 don’t do it for ourselves. But yeah, I’ve experienced the same thing. So many people have been so supportive, but like I said, 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 consistent narrative. And I’ve gotten much better at… I very happily use my cane now when I need it. But also it’s smaller than a rollator, and it’s not a chair and it’s still almost like a baby step. And I think right now, my mobility has also gotten a lot better since I started meds for my POTS. And so I don’t know if I’ll get to a point 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 a little less scared. I even considered it 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 early loading. And that technically I would be eligible for early loading. And it’s things like that, that I still pause and I’m like, “No, I don’t need that.” And my husband will be like, “Okay, every time we’re in an airport, you’re in absolute pain. You’re always so uncomfortable. You can take advantage… you’re allowed to do this.” And so there’s still a lot of little things like that. There’s still a lot of little things like that that I’m learning 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 not disabled enough to need that,” or whatever.
Brianne: Do I really 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. I’ll take some more pain meds and I’ll grab a pickle and I’ll be fine or whatever. And it’s always everybody else around me that’s fighting against that. And me being like, “No, I’m good. I’m good.” There’s even been times where it’s been suggested 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 know intellectually that’s probably the best option, but I’m still growing into that kind of confidence, I think.
Brianne: Yeah. Yeah. And it has its own things too. Because with airport chairs, because I do request them sometimes, less than I did a couple years ago, but airport chairs are difficult because it’s 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 I don’t want to do that, but also if I can’t get on the plane in time because I can’t get there, then I should pay someone to do this.” Which it’s not… tipping is pretty typical, but it’s not… it’s a free, air quotes, free service accessibility option, but yeah, it’s very loaded. And I think I’ve experienced this and other people I’ve talked to experienced this, 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.”
Valerie: I’ve heard that as well.
Brianne: And I’m like, “Oh, what an idea.” I’m always like, “Well, do I think that I’ll probably be okay? Okay. Don’t do it.” I’ve pre-booked a chair twice ever, even though I’ve asked for them on other occasions. 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.”
Valerie: Well, I think things like POTS, things like fibro, I think really a lot of chronic illness, it’s the flares. You never know. I might feel fantastic, or as fantastic as I ever do feel, six hours before my trip, and then right as I get to the airport, by the time I get to my gate at the airport, I want to be in tears. And it’s sort of impossible to know. It’s really… 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 sometimes 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 who have said they just always do, 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 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 still something in me that hasn’t quite gotten to that point yet. And so, but it really ends up only hurting me. And then 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 didn’t do that pre-planning. So I’m trying to get much better at that.
Brianne: It’s hard. It’s also interesting with a partner. 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. Like 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, “I don’t think that that’s 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: It’s like, “Okay. Yeah. I would be happier if I were sitting.”
Valerie: Yeah, that’s a fairly regular occurrence. But to be fair, 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.
Brianne: It’s good. That’s support.
Valerie: We’re able to criticize each other. We just can’t make those decisions for ourselves apparently.
Brianne: Yeah. That’s its own other thing. But yeah, it’s weird how that works.
Brianne: Well, we’ve covered a lot, and I think we’ve pretty much caught 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 could talk about this topic forever. So I will say, I don’t want to say no because that’s inaccurate. I will say, I think that might be for another conversation. I think the biggest thing that I’m hoping to start seeing, and I think I see this so much because it’s in part 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 tourist thing. I feel like sometimes we’re not thinking about chronic illness when we’re looking at policy and legislation and things as it relates to disability policy and protections. And I hope things like this podcast, and I’ve listened to some of the other interviews, and I think it really helps to highlight how much of a daily… I mean, you’d think that would be defined in use of the term chronic. But I think because of the flares, because of the ups and downs… 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 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 our standard idea of, or definition of, what we think disability is or what we think it looks like. I work with people, because I do disability policy, I work with disabled people all the time, and how frequently other people who maybe have congenital disability or some other kind of physical disability had never really considered the way, for example, stress might affect somebody’s disability because that’s not necessarily something that exacerbates their disability or different things like that. And I think it more comes out of 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 sometimes I feel like I’m killing myself to work full time job. 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 things that have to be looked at a little bit differently because chronic illness is different.
Brianne: Yeah. Yeah. And one of the things, this is something that I’m still trying to develop better language about, but I think so many conversations about accommodations are about static accommodations. Like, “Okay, if we put in a ramp, if we put in an accessible bathroom, if we put on closed captions. 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 such a common, probably cultural, understanding of what an accommodation looks like, this is exactly what you’re speaking to, 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 even having a flexible schedule…. so overtime is a great example, but if I’m going to have… 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.
Brianne: It’s just not. And that’s only one small example. Because sometimes I would ask people that, 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 accommodations don’t even exist in certain spaces.
Valerie: I’m hoping as remote work becomes more popular that 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 and responsible for hiring people, then they know, “Oh, hey, I know somebody who has to work like that. I know you can get your work done doing that.” And it’s a valid way of working. Because, yeah, that’s me too, where it’s like… or there’s days, just really, really simple things… sometimes 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 it’s kind of gift of gab kind of thing, and then the next day I can’t get words out at all. And it’s not static, but as people see that you’re able to work through that, hopefully that opens the door for more people 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. So I think that’s my optimistic next step, maybe.
Brianne: I love it. I love it. I see a lot of people out there working on this stuff and chipping away at it in different ways, trying to educate employers, trying to educate people about the kinds of accommodations that they can ask for, trying to change legislation. There’s so many different arms to this, and I am also heartened by the conversations that are happening. 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 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 burn through a lot of people’s energy sometimes with these converstions, but I love them so much.
Valerie: No, this has been great. Thank you so very much.
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.