Caitlin talks epilepsy, EDS, and life with chronic pain.
I’m not Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Brianne is in the middle of a flare right now so I’m going to keep this short. Rest assured that more episodes are coming.
If you want to hear more from her when she was a little bit livelier, Brianne is a guest on this weeks episode of the podcast At The Table with Beth Ruffin. They talk about chronic illness, advocacy, and the gift of believing people. This week Brianne is talking to Caitlin about epilepsy, EDS, lots of other great stuff.
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.
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: I like to start just by asking people, how is your health as a kid.
Caitlin: Um, I actually was, I would say healthy to probably age four, and that’s when things kinda got weird. Like I, when I was born, I was already two feet long. They already knew where I was going to be really tall. And that trend continued, but it was around four or five that. My and I, for context, I call him my birth mom, my birth mom. And my mom is actually technically my stepmother.
Caitlin: And so my birth mom noticed, I started tiptoeing everywhere. And at first she thought I was like, you know, cutesy five-year-old thing. Like, you know, who knows?
Brianne: Yeah, it’s a women’s a call.
Caitlin: she noticed it was going on for like two or three weeks. And she finally stopped me and she was like, Katelyn, why are you tiptoeing everywhere? And I say, cause it hurts so bad in my feet. I can’t put my feet down. And what was happening is I was growing so fast, it was actually ripping apart the growth plates, my ankles. So ever I was walking as Rocky walking on a broken foot,
Caitlin: and that’s when we started doing testing, and at least back then, because I’m like 26 years old, so that would have been in like the mid nineties there wasn’t a whole lot of information. They knew that something wasn’t quite right. But beyond that, it was just kind of let her grow up. Let’s keep things pretty normal. And one of the things was we had a couple of doctors kind of stop us and say, Oh, well maybe the, she’s growing too fast and she’s going to stop. Or maybe she has some form of like Mar fans or we’re not quite sure, and they do some experimental testing, but my birth mom shot it down
Caitlin: and everything pretty much continued normal till I say probably around 13 or so.
Brianne: So were you still having like the same amount of pain, but kind of nothing new happened?
Caitlin: The pain, at least in my ankles, eventually stopped and I stopped cracking his growth plates, but I was in PT, OT like two to three times a week for years because everything would get super tight. We always knew my joints didn’t quite work right. Like my bone age was always too old,
Caitlin: so there’s like little stuff, but it was enough to where it was never debilitating. Kind of carried on.
Brianne: Gotcha. Okay, so little stuff, but it was normal for you also, I’m sure. Right. You didn’t
Caitlin: Yeah, so like just continue on with my day. We did lots of blood work every six months, but everything turned out to be fine usually. So you just continued on.
Brianne: Totally. Okay, so then you said 13 it sounds like things started to change. You’re like, yup.
Caitlin: Quite a bit. Quite a bit of change at 13. Um, we always knew that my tonsils and adenoids were about four times too big. And they eventually had to come out. But again, it was one where I would get pretty chronic sinus sinusitis, but other than that, like I would move on with my day both by side. That’s it. We’re going to get him out of there. It’s going to be quick. TNA, which is the tonsil and adenoid surgery and McGill. But I went for cardiac clearance for surgery and that’s when they noticed a pretty severe arrhythmia
Caitlin: From the arrhythmia, it turned into Brady cardia to tack a cardia too. Um, I think it was a four point rhythm I arrhythmia where I starting to go and do quadruple runs. Like I was almost passing out a, my heart rate range from 40 to 200 and that’s when it became debilitating.
Brianne: And do you think in retrospect, because obviously before you think that this is a problem, you’re not really paying attention to your heart rate, probably especially not as like a 12 year old or something. Do you think that you had had symptoms of this for awhile or was this like when that started
Caitlin: That’s actually when it started. I didn’t have a ton of symptoms beforehand besides like the muscle spasms then live that,
Brianne: but like the lightheadedness or the kind of. Everything else that comes along with heart rate, arrhythmia issues, I’ll know. Okay, got it. So they found that when they are clearing you for surgery, sorry for the interruption.
Caitlin: no, not at all. And it started pretty slow, like the arrhythmia started pretty benign and the, they notice a little bit of tachycardia, but I was only hitting like one 20 which is fast for most people who are for me, found that was pretty normal.
Brianne: yeah. It’s like very manageable, right? Like, Oh, yes, sure.
Caitlin: Yeah. You know, I would get kind of like a little out of breath and then I’d move on, move on and be fine. But it just kept getting worse and worse and worse, and cause they went from just a single arrhythmia to double Rhythmia to triple to quadruple. And that was over a span of about a year or so.
Caitlin: even when I went in finally for that TNA, um, for some reason I had a really severe reaction to the anesthesia and I ended up in the ICU for like a week or two.
Brianne: Oh wow.
Caitlin: So like that’s why I just, everything kind of turned at 13.
Brianne: Yeah, and like with, if you’re in the hospital for a week after what is usually like a kind of unremarkable surgery, that by itself is like, something is happening here.
Caitlin: Yeah, pretty much. It started at the whole cardiac beads and all that kind of stuff going on, and from there it just kept getting weirder where I eventually did an MRI of my brain, what they then thought was just a pituitary hyperplasia, which would mean that my two, Terry’s too enlarged. That was a budding my optic high ASM, which is a fun way of saying it’s kind of nudging the blood vessels in my eyes.
Caitlin: So that we thought was, it turns out it’s not. It’s actually a tumor as of right now, but the quality of MRI wasn’t as good.
Caitlin: so we moved on with that. That’s one where we did explore doing radiation or move all the pituitary. But again, it was, it’s the same story. It was a just benign enough to where we decided we’re going to just kind of leave it alone, see what happens.
Brianne: Yeah. Manage the symptoms rather than do this in face of thing that will have its own side effects, obviously. Yeah. So many questions like that.
Caitlin: pretty much, yeah. And then, um, first year of high school, cause the TNA was in middle school. Um, eighth grade for at least the U S um, first year of high school when I was about 14, 15, that’s when it got really bad. Um, I maybe made it 20 days of school that year. Um. And it was one where we didn’t, couldn’t figure out what was happening. I kept blacking out and I was having all these neurological issues and we started going to so many different specialists, like easily, I had two or three doctor appointments every single week and just no one knew what was happening. I was having, um, like a drop of my right arm where I’ll send no kind of blackout and they’re thinking seizures, but. On an EEG, they couldn’t find anything, and it just kind of kept going like that. And I would get so tired, I’d be slipping for easily 20 hours after like out. And so I was just completely debilitated
Brianne: Yeah. I
Caitlin: we come to find out, Hmm.
Brianne: I just want to say, I mean like 20 days of school is significant. Given that, I guess, I don’t know how many normal school days there are, but like at least nine months where there’s at least what, four to at least 20 days a month. So that’s
Caitlin: It must be about 140
Brianne: Yeah. Yeah. So that’s one seventh of the school year. I know about math. Anyway. Okay. So that was all happening. And they’re running lots of tests, not really finding anything.
Caitlin: And that continued on for about three or four years where I really couldn’t make the school. I was debilitated. I started getting a of like a really vicious migraine cycle that lasted for about a year and a half on broken, and then I had a weird split in my skin and my back that went down to the bone and they don’t know what happened there. They thought it was just maybe a weakness. I had surgery again, and it wasn’t until the junior year of high school, so three or four years later that they figured out that I just had a rare form of epilepsy, complex partial seizures,
Brianne: and how did they figure it out?
Caitlin: I returned to an old specialist for neurology and we went over all the symptoms again, that I would have what seemed like an attack. I couldn’t remember anything. I’d be really dazed for about two hours afterwards, and there’ll be a lot of neurological signs, like my right arm would always lift partially off my side, and that will be followed by a severe migraine cycle and the 20 hour sleep. And we knew it was happening like two or three times a week or so. So that would be almost entire day gone every time.
Caitlin: And from all those symptoms, we were able to figure out that I had complex partial seizures that was embedded between my two frontal lobes. And we started medication and like magic. I felt better again.
Brianne: yeah, it was, was it really like quick and dramatic with anti epileptic. Okay. Anti. Epileptic, good, good words. And so that was a really dramatic change.
Caitlin: Really quick change. It would have been, once I titrated on, we’ve tried one, didn’t work, tried another one. It was like a month and a half titration and all sudden I felt. Like, why did as a kid it was done.
Brianne: yeah. That would be so dramatic. I would imagine after you said like three or four years of not being able to function or participate, and then like. Nope. Um, and so, so we’re, okay, hang on. I’m trying to think of how to formulate this question. It’s the end of the week. Um, you had been still sort of going to school, it sounds like. So how was it to kind of get a lot of your quality of life back after being out of the social environment and out of this academic environment for years? Like.
Caitlin: It was amazing. Like for me, I personally always loved school and like just the academic side, not just the social side. Yeah. I hadn’t been attained all A’s. I would just take, I literally go to like maybe once a week, grab all my homework. I would come in for testing. I literally walk in and take a test, walk back out and all sudden,
Brianne: That by itself is impressive.
Caitlin: so at least here in the U S we have a, what’s called a five Oh four plan, which is the medical plan for any kind of student who has an issue. They, the school tried to force me out and my birth mom.
Brianne: pre diagnosis, right? Especially without a diagnosis. I’d imagine it would be harder to get accommodations, even though obviously something was going on
Caitlin: Yeah, it was really hard. And um, they tried really hard to get me out, but my birth mom, she threatened lawyers. She did the whole thing. She was really great about that. She said, I don’t want her to go to. Any kind of cyber school, she’s going to stay in school. She’s, I kept my grades up so they couldn’t push that issue
Caitlin: and we just made it work.
Brianne: Yeah. Which I mean, it’s as amazing. There are obviously like not everyone is able to do the work when they’re sick. There’s like other layers to it. But the truancy problem can be a problem all by itself where schools are just like, Nope, sorry. Does that make sense? Good luck. Anyway, so, so you got to like stream yourself back in basically cause you knew what
Caitlin: Yeah. It went from where I would, like I said, I’d show up for a test and I’d leave. I’d maybe be at school once a week or sometimes not even at school too. I was able to go back every single day and I still had that five Oh four plan in place so she can now cause of a seizure prevention, but I just kind of carried on.
Brianne: excuse me. Yeah. So, so then how has the medication then, like are there, I don’t know a lot about epilepsy medication, so tell me about that.
Caitlin: I went through two main ones. I went through, um, Keppra, and I’m completely blanking on the second one. Um, but I, I was on Keppra till about 19, and then I started, had breakthrough seizures. We switched over to a new one and I actually had a lot of severe side effects. It caused a stutter. It caused a lot of brain fog. Um, I used to have a really good memory and that was wiped out
Brianne: I’m the first one or on the first med? Both. Yeah.
Caitlin: and I ha I had a lot of those kind of, like, I pretty much had all the symptoms that would come with it. But sitting down with the neurologist, we decided, is it better to not be able to function at all to constantly be sleeping or should I kind of suck it up and to take the side effects. Which is what I went with.
Brianne: Right, right. Which is a question I think people outside of the chronic illness community don’t always realize that side effects can be. That intense. I think we kind of hear them like rattled off on TV very quickly at the end of drug ads and it doesn’t land that the choice that you just said of like, well, one of these things is completely pulling me out of my life and this other thing is still heavily impacting my life. But there was a choice that I made. Yeah.
Caitlin: And I think it’s a choice that a lot of people face. Cause we talked to a lot of neurologists and they all basically said well you got to suck it up. There is no other choice. There is no other medication you can do. You either have the seizures, what can you shake a Bret progress and become worse and worse cause mine were non epileptic or I’m sorry non convulsive and it can’t change over to a grand mall or you take the side effects.
Brianne: Right. And when you, I guess I kind of just skipped ahead on the timeline just because I was asking you about that. So you said you started having some breakthrough seizures when you were 19 is that right?
Caitlin: I, I stepped in I think 18 or 19 because it was my freshman year of college.
Brianne: So it was like you had a couple totally, well, not totally normal years, but totally symptom-free here, or epilepsy symptoms. I keep adding a lot of caveats because these things are actually really complicated and I’m not trying to gloss over the experience at all. But from where you had been, you had a couple like kind of normal in air quotes, high school years, and then you applied to college, got into college. And then it, did it feel like it was coming back? Like did you expect that you could have, or did you know that you could have breakthrough seizures?
Caitlin: They warned me cause I, I hit the max usage of Keppra. That’s actually why I switched over and everything was cool. Probably for like a few months. But during that freshman year, it was my very first freshman semester that I started getting breakthroughs. Like the one that I remember so vague, so like distinctly was, I was sitting in math class and then I woke up on my bed.
Caitlin: It was just gone. And I just, I, all of a sudden I realized, I’m like, Oh no, it’s coming back.
Brianne: Yeah. And that must’ve been scary. Even if you kind of knew it was possible after so long without it
Caitlin: And it was scary too, cause I walked across a busy campus. I walked across the street. And I, no one knew that I had them cause I w I went across the country and so no one was there with me.
Brianne: right. Right. Okay. So breakthrough started, and then did you go back to the doctor at that point? You might’ve said that when you mentioned them in passing. Yeah.
Caitlin: I went back to the doctor then and I switched over to then to, um, Zonegran and that is what I took until about 22. And then we. They had always told me I should probably test it, go off every two years, see if I still have them. I finally did that at 22 and I’ve never had a seizure since
Brianne: Whoa. So you went fully off medication at 22
Caitlin: so last few years, no symptoms, no drugs, nothing.
Brianne: that’s a really something, I feel like, I mean, I’ve known people with epilepsy and I’ve known people on epilepsy meds, but it’s the kind of thing where you never know the full kind of details of it. So between the first thing that sounds like it’s still kind of a mystery, like whatever was going on with your body that was injuring your ankles. And then this experience, which was huge of course. Um, since 22, when you off of, when you went off of the medication, how has your health been in general, or how does this impact your perception of your health, if that makes sense?
Caitlin: It does make a lot of sense. Um, it’s one where I went for surgery at 21 and I got completely cardiac free. I no longer have an arrhythmia. I did, um, cardiac rehab. That’s gone. Tachycardia and bradycardia. I have a little bit of a break. Cardiac rhythm. It’s kind of slow, but that disappeared.
Brianne: and what was the surgery at 21 did you say that?
Caitlin: 21 I had gastric bypass
Caitlin: or sorry, a gastric sleeve cause I was overweight. I was about 160 pounds overweight and lost 160 pounds. And when I went there, we did a full clearance. Everything was fine. Um, and I still kind of had this joint issue going on though. Cause I’m in my, it probably was my junior year of college. All of a sudden I became really sick. And at first I had gotten pneumonia, so I just assumed I still had muscle aches from pneumonia. Like that’s, you know, pretty big illness to go through.
Caitlin: But it didn’t stop. It was two or three weeks later and I still, my joints were on fire. From where I’m from, I’m from the Northeast. There is a lot of Lyme disease, first testing, Lyme disease, five moralgia, rheumatoid arthritis, the whole gamut of rheumatology, and there was nothing. The only thing I got kind of temporary diagnosed with was hypermobile, benign hypermobile disorder,
Caitlin: which is just the fun way of saying your joints move the way they shouldn’t move.
Brianne: Right. You are hyper mobile and we don’t think that there’s any like underlying connective tissue problem. Probably.
Caitlin: Said, they didn’t know. The rheumatologists I saw said, I’m really sorry. I have no experience. Even with hypermobile, try Googling it and find a doctor.
Brianne: Wow. Which you don’t expect doctors to say try Googling it.
Caitlin: That, uh, that became the series of, I’m sorry, I don’t know what to do. You should probably do more research.
Brianne: Again, astounding. Um, and, and like on a completely irrelevant note, I was just having a conversation today with somebody who has aliens. Dan listened to syndrome and she was telling me about how the geneticist who diagnosed her was very frustrated that so many doctors like won’t touch it, basically. Cause for hypermobile type, you don’t need a geneticist. And there’s like no reason that more doctors aren’t. More comfortable with it. I mean, like there’s a reasons, but there’s no educational reason. Um,
Caitlin: actually what I finally got diagnosed with is I have ATDs.
Brianne: okay. Okay, so let’s get there. So, so you had seen somebody, because you had all of these, all of this drink pain during your senior year of college, you said,
Caitlin: It was like, I think it was either my junior or senior.
Brianne: okay, yeah, Lake college. And so this is before the surgery.
Caitlin: This is after surgery, so I had, or no, I’m sorry, it might’ve been right before surgery.
Brianne: Okay. And were, so you’re like looking for an explanation. The best that they have to tell you is that you are incidentally hyper mobile, but that’s not really an explanation. Yeah. Okay. Um, and then did that, I guess just tell me what happened between that and then choosing to have surgery. Since bodies are hard to navigate sometimes. Basically
Caitlin: I eventually had surgery in December of 2014 I was still suffering these like hypermobile attacks. I had no idea where to go from there, so I, I guess I just suffered with it. Like it doesn’t feel great. Even when I lost weight, I was still in a lot of pain.
Brianne: as an interjection, because this is something that people talk about a lot, where are your doctors suggesting, or did they seem to believe that losing weight would make that go away? You’re, you’re nodding very vigorously in addition to agreeing. Okay. Yeah. Just checking because,
Caitlin: Oh, I had a lot of like ablest or like kind of April’s body things where even if I would go to cardiologist when I was having all that stuff, they were like, well, just lose weight. And like my heart is 220. Do you going 220 I don’t think losing weight is going to fix that
Brianne: right. It’s, it’s not like it’s clearly not the driver of those issue. Maybe there’s a relationship maybe, but like, it’s not going to fix this. Yeah. Yeah. Okay. And so, but so you did choose, you chose to have the surgery and you had the surgery and it had its intended outcome of the weight loss, but it did not have the peripheral benefit that doctors hoped for that it would cure everything else. Um, yes. Um, as a different, interesting aside, I’ve just done too many interviews lately. I also recently interviewed someone who was about to get. Um, I think the gastric bypass, and she was talking about all of the research that she’d done actually in terms of what it was known to impact. Like, because, uh, like fat cells hold a lot of hormones and they dah, dah, dah, dah. And it was really interesting to hear this other perspective of like, so many doctors just blame everything on weight, which is ludicrous. And like, not scientifically sound in any way, but it was interesting to hear like where the pockets are. She was like. I don’t think that losing weight will cure me. It will definitely not cure me, but there’s evidence that it might have this relationship to flares. And I, I know that’s not what we’re talking about, but it just made me think of it. So I’m very rambly today. Thank you for listening and nodding along.
Caitlin: No, no, I, I completely understand cause I’ve, I’ve literally, when I was younger, like in high school still, I had gone to a specialist and they’re like, Oh, well you’re just fat. You should leave.
Caitlin: And that I was there. I was there for completely different reasons. I’m like, I can meet. I agree. Uh, medically I am overweight, but I’m not sure what impact this has on our discussion.
Brianne: Yeah. Yeah. God. I mean, it’s such a huge problem. And did you also, did you notice a difference in the medical care that you got afterwards? Just how people were responding to you? Yeah.
Caitlin: I noticed a huge difference of even, cause I gained some weight back, but there’d be times where I go into the office. Versus before I lost a lot of weight and before and after I lost a while weight before they’d be like, well, we need to double check your A1C. I have no history of A1C issues when you take your blood pressure. I have low blood pressure. Like it was always an assumption that I must have a lot of chronic, um, things that are attached to being overweight. And it was never actually, I would have to get through 30 minutes discussion before I could actually talk about what I needed to talk about.
Caitlin: And now, especially after I lost weight, especially not my skinniest. I would never have that come up. There would be no, Oh, well we need to take care of the blood sugar levels. Like no one cares.
Brianne: Right, right. And of course, like everybody should be monitoring those in the broadest sense. But that kind of like bias is, like you’re saying, it’s preventing good care. It’s absurd. Um, okay, so back to the timeline. So you, after the surgery, you’re still experiencing joint pain and . This must now be around the same time that you went off of the epilepsy medication. Is that kind of
Caitlin: a year later.
Brianne: Okay. And did anything happen in the middle.
Caitlin: Um, so yeah, actually one thing did happen. So after surgery, everything was going great. Mmm. I got married and which I’m now divorced, which is fine. And after that we were living together. Everything was going great. And one day I, something really bad happened. So I had already lost all the way I was still on epilepsy medication. Um, we were, we just adopted a new dog and I was playing with her. I went to stand up and I felt the really, really strange pop and I hit the ground and I couldn’t get up. And at first we didn’t know what was happening. Like my husband then he like picked me up, put me in bed. I like stayed in bed all day cause it was around nighttime ish. And the next day I woke up, I couldn’t get up to go to the bathroom. Like I literally was in searing pain. It was raining down my leg and I had just had a friend who had sciatic issues and I said, I need to go to the ER right now. I think something happened, and at first he was like, no, no, don’t worry about it. We’ll just rest a little bit more. Like, no, I need to go right now.
Caitlin: And I went there three times in the next few days.
Brianne: Okay. And were you just going and they were like, well, everything looks fine. Like go in and out basically.
Caitlin: For the first time, they were like, okay, you herniated L two and L three, and obviously there’s a psychotic impingement, which that was fine. And then in between, I had a Paul Nidell SIS first, or, sorry, not Paul, like I, um, ovarian cysts burst.
Brianne: so you were just having a lot of bad luck all at once. Basically.
Caitlin: Yeah. Over like three days.
Brianne: Yeah. Holy cow. That’s the opposite of what usually happens
Caitlin: And then I went to my primary doctor cause I’m like, okay, I have a herniated disc. I need to at least go to therapy. The on some kind of management. And they blew me off. They said I might give you ibuprofen but otherwise get out of here. And I immediately called insurance said I need to do, doctor got transferred back to an old one and before I could see her, I had to go to the yard cause it was, I couldn’t move. And that’s when they found out broke. And a compression fracture, which is, um, like a, almost like a door wedge.
Caitlin: So was now broken. L two and L three were herniated with nerve impingement, and I was in like searing pain and it was around then. I was still in college. I actually had to drop out my last semester and I had literally one class to graduate.
Brianne: Yeah. And it was not going to happen.
Caitlin: I couldn’t sit.
Caitlin: So I went back to the old family doctor. We started pain management. I did back injections. We did a really intense physical therapy for a few months, and then I had to move. So I broke my current, um, care providers.
Brianne: and were you experiencing any relief from that calm, that treatment combination?
Caitlin: Yes. So I did his experience somewhere with leaf, with the injections. I was actually able to walk again at least. And then they also did a pretty aggressive narcotic therapy that I wasn’t a huge fan of. And I have heard from other, because I actually have two friends with EDS. I don’t know how we found each other, but we did. And they also have noticed that narcotics, they don’t get a lot of relief from.
Brianne: Yeah. It just doesn’t have the desired effect of pain management. Yeah. Okay. But the injections were helping, so you move and you need to find new care providers and like a team basically at this point, cause you’re managing a lot of conditions kind of, or a lot of symptoms, right? Yeah.
Caitlin: And, uh, at my old family doctor, they again, soon send me to rheumatology. This is right before we move. I go to my second rheumatologist now, and she says, I think you have early onset osteoporosis on top of the benign hyper mobile, which I find out later, I don’t. And her suggestion literally was, make sure you get all your dental work done right now. All your teeth will fall out and make sure you have a baby right now. You’ll never be able to have one again.
Brianne: Cool. Thanks. That’s helpful. Wow.
Caitlin: Uh, I now have a horrifying fear of the dentist. Cause for about two years, I couldn’t get a DEXA bone scan. So I was severely terrified of going. And I’m still trying to go to therapy to work through that one.
Brianne: Yeah. Fair. It’s something that I find so. Well, weird, I guess about stories about doctors is that like on the one hand, people have these experiences where doctors don’t really tell them what their diagnoses mean. And so they don’t, they’re like not prepared and they’re not taking care of themselves the best that they could because their doctor has like literally withheld information. And then on the other side, there are these stories where doctors are like, here’s the worst case scenario and I’m telling you to you like it’s a fact. I’m like, how are these both happened to get once it’s, it’s bizarre.
Caitlin: And I had an experience like that before I about 14 or 15 when we’re doing the cardiac followup. I did an echocardiogram and they sat us down, both me and my birth mom. Um, and they literally said, you have a two millimeter hole in your heart. We’re going to start planning open heart surgery and come in for your second testing. Come back. It was a shadow.
Brianne: And you’re like, thank you for your caution.
Caitlin: But to tell a 14 year old and I literally thought I was going to have open heart surgery for two weeks. I’m like, that was incredibly reckless.
Brianne: Yeah. Oh my goodness. Yes. So, so then ultimately, so this person tells you all your teeth are going to fall apart. Basically
Brianne: but not
Caitlin: Different issue. But I just like tabled it like, Oh well I did go and get, I had to get like teeth pulled. I got those pulled for like, um, just the regular like, Oh my gosh, I’m forgetting your extra wisdom teeth. Yup. And like not all that over with immediately cause I’m like, Oh my God, I don’t know what’s going to happen. And on a weird side note, um, when they pulled my wisdom teeth, all the roots were twisted, which is apparently a very common sign of EDS is the literal roots. It looks like a tree.
Caitlin: And it was one where I didn’t know about EDS at all yet. So I just went, Hmm, that’s a really weird looking tooth. Let’s move on.
Brianne: Yeah, sure, sure. And probably that’s what the whoever, maxillofacial surgeon, whoever pulls with them teeth, I guess. Sometimes dentists, sometimes surgeons. Yeah. Okay.
Caitlin: so I tabled it. We moved. Uh, I started getting a new like care team. Um, and then weirdly enough, someone who had married into my ex’s family. Had EDS and I started talking more and more with his mom and she’s like, I, I’ve been listening to everything you’re talking about and it’s everything that she complains about. Maybe you should kind of follow up on that. And it was a weird enough experience where I started seeing people. I saw, um, weirdly enough, the primary care at the moment was actually really well versed in EDS. She had multiple patients and then I started seeing orthopedic and they’re both like, yeah, I, you pass, I pass a standardized EDS test, which is,
Brianne: debate and scar . So for hyper mobile heads, do people say it heads?
Caitlin: I haven’t heard it that way, but.
Brianne: Just wondering. I feel like I’ve started to read it that way in my own head, and then I was like, I don’t know if this is the thing that’s happening or if I would have started saying this on the podcast and no one will know what I’m talking about anyway. Okay. So the orthopedist does the bait and test or a bait gets your Baden scar.
Caitlin: Yup. And I keep passing it. I pass the history wise. Um, I do have a little bit of strange scarification that happens on me. Um, which is like the. It just for my back surgery, I have the really thick white scar. And then also I, I can’t remember the actual scientific name right now, but it’s called spider fingers and it’s when your fingers are too long. It’s also seen in Mar fans and occasionally people at the general populace habit, but most primarily EDS are Mar fans. And so that is what cleared me for, I now have EBS, we try to do genetic testing, but. Like you said, it’s not really needed for hyper mobile and we just didn’t have a geneticists near us.
Brianne: Right, right. It’s like, I mean, I understand that it’s because there are genetically identified types, but it’s strange that most doctors are totally uncomfortable diagnosis when it can be hard to get in to see a geneticist and. There’s no geneticist, special workup that would diagnose hypermobile EDS. I’ll just, I’ll just say the day. Um,
Caitlin: It was one where they’re like, Oh, well we can then rule off cardiac. I’m like, I can always guarantee I don’t have cardiac EDS.
Brianne: Yeah. And those ones are more, I feel like the histories on those can be more kind of obvious, is my impression. Yeah. So, and how old were you at that point when you got that diagnosis?
Caitlin: So I broke my spine at 22 and then we moved. I was still 22 so then right, it probably, as I turned 23 is when I officially got my very first diagnosis. EDS
Brianne: a lot was happening all at once with your health. Yeah.
Caitlin: And it was one where they tried to send me to, um, osteoporosis, uh, arthritis clinic. They, I literally got a call from the receptionist saying, I canceled your appointment. I’m like, why? And she’s like, cause your age, why are you even here?
Caitlin: all, I couldn’t get back in with them. They’re booked out for six months. I’d waited six months, booked out for six months. Oh well.
Brianne: that’s like par for the course and also extremely frustrating because that’s not relevant. Yeah. It would be one thing to be like, Oh, you probably don’t have osteoporosis because of this new diagnosis that we saw in your chart that would explain whatever diagnosed that, but it’s totally different to be like, I see that your doctor thinks you have osteoporosis, but I’m not going to help you because you’re in your 20s.
Caitlin: Yup. And it was one where, so I just kept, we, my orthopedic basically said, I’m not really sure what I can do for you. I can try doing a M where they go in and do the ablasion of your nerves in your back. Cause I was still really debilitated by it and it’s something I’m still, I struggle with and I again, had to move. So I wasn’t able to follow up with all the prep work I needed for my insurance to get the surgery done.
Brianne: right. Which is a very frustrating part of the insurance system in this country. The bureaucracy of it. Um, yeah. Okay. So after diagnosis, okay. I just want to make sure that, like I know which threads are still falling. So at this point, the, I don’t want to say the epilepsy is over because epilepsy is separately complicated, but you weren’t having seizures anymore and you weren’t taking the medication, so you weren’t dealing with the side effects from that. Correct. Okay. And then your heart had also kind of stabilized. Intriguingly. Yeah. Okay. So the primary stuff going on now is everything that’s going on with your back and then the, the kind of nerve fall out from that as
Caitlin: And also when,
Caitlin: and also right before I moved from Texas, I did a followup MRI because of the, what we at that time thought was a pituitary hyperplasia and they cleared me saying it’s gone. So at this point, everything has fallen away. In my mind. I just have EDS, which was weirdly enough, a relief.
Brianne: Yeah, well, after everything else, like not to say that EDS is, is easy, but certainly like, it varies a lot how it impacts quality of life and like lots of people with EDS have a pretty good quality of life and compared to all these other things, it probably was like, yeah, right. Like, I’m flexible and some stuff hurts. Fair enough.
Caitlin: I mean, that’s exactly how I felt. I’m like, okay. I mean, it could be worse. I could have EDS, epilepsy, and my cardiology problems and neurology problems, so I’ll take EDS.
Brianne: Right, right. And I guess they had said they didn’t really know how to help you because I realize that there aren’t really like standardized treatments for EDS, but was there anything going on? Anything else going on and symptom management for you at that time, or did that get shaken up by the move.
Caitlin: A little bit. So it was one where I was really just fighting for that surgery cause the primary pain at that point was the low back where they did follow x-rays. The actual fracture itself had healed, the hernias had healed, but I was still in just amazing pain every day. Like some days I could get up and I could move. Other days I was stuck in bed and nothing was going to change. It.
Brianne: And this, I just realized that we didn’t talk about that. So you’ve mentioned how because of everything you weren’t able to finish at school. And were you able to work at all in this time or kind of what were you up to because you know, time.
Caitlin: So I, I went to school to, um, initially could be a doctor, but because of my epilepsy medication side effects, I couldn’t memorize anything that doesn’t really work for the medical field.
Brianne: right? Yeah.
Caitlin: So I.
Brianne: testing to get into the medical fields.
Caitlin: Yup. Um, so I gave up on that cause I realized I just can’t do it at this time. And I started going for, um, more like arts, so English, which I had already been really good at. So I’m like, whatever. I’m good at it. I don’t like it, but I’ll continue on. And once we moved, I on my school, I wasn’t able to go back to. So I started working, and weirdly enough, I started work in the medical field and administrative. And which I’m still in. I’m actually pursuing a career in
Brianne: okay. So you were able to find ways to make that work around everything else that was going on. And do you need, um, many accommodations to like. Do you need to sit? Are you able to sit? How does that all work? Just logistically, I’m so curious when people find ways to work to make work work
Caitlin: Uh, so I, I’m sticking to the administrative, I thought about pursuing clinical, but I, I don’t think my day to day would ever be able to handle it. And so I usually work at a desk. Like right now, my job is great. I work at a hospital, I do sit, I have a sit stand desk. I can move around. I actually, I’m staring. I just got my disabled parking pass and I’m staring at it right now, so I’m very excited. So I’ll be able to go in. I use a cane some days. And that really helps and my work is always really nice. They realize that sometimes I have to move around. Sometimes I’m like all over the place and they see me twisting round just like, let me do my thing and I’ll figure it out.
Brianne: so it’s like, as long as you’re able to physically get. As comfortable as possible. You have figured out how to kind of get your focus and get some work done. Gotcha. Okay. So, so where, where did we leave off? Um, I think it was more or less after the EDS diagnosis. So after that you had moved and tell me what happens next.
Caitlin: I probably moved like four or five months after the EDS diagnosis. Our only other plan at that point was I, Mmm. I was doing a short term narcotic plan where if I had an extreme flare up, I’d take hydrocodone. Otherwise, I also use THC lotion where I was at. You were able to get a THC. And so I found that worked really well. I did not like taking it any kind of oral THC that was not, not a fan, but the lotion was great and then moved. And again, the story is getting a whole new care provider team. And so, but this time, at least April of going forward, I could sit down and say, by the way, I have HUDs, this is what I have. And kind of try and go from there. I got very mixed results.
Caitlin: And also my new primary immediately sent me, cause my history for a brain MRI just for checkup. That’s why I immediately get a call back from her afterwards that says, I’m booking you for a neurosurgery.
Brianne: Oh, okay.
Caitlin: like, you mean? And she said, it’s come back and it’s now bigger. And so we’re still trying to get the records in Texas to actually compare to see if it ever did originally leave. But with the new better imaging, we found out that is an actual pituitary tumor. Yeah, it now completely encases all of my optic nerves and blood vessels, and I do have some damage through my left eye now.
Brianne: so of your vision itself, does it impact your vision? Yeah,
Caitlin: Um, it’s one where my actual glasses aren’t bad. They’re maybe negative one 25, one 75, but when I take them off, the entire world is fuzzy.
Brianne: Hmm. So they’re whatever it is
Caitlin: More than what someone at my degree of glasses would normally experience. Everything fuzzy. My eyes are very weak. I can’t see without my glasses for a really long time.
Brianne: Yeah, they’re important.
Brianne: And weirdly, I guess when this comes out that this will be kind of in the past, but the episode that just, that I put out today was somebody who had had a pituitary tumor, also lupus. So it was more about lupus, but it’s like fresh on my mind right now. And that the optic effects that it can happen. Cause she talked about that specifically cause hers was missed for a long time. She was like, if I didn’t kind of keep asking questions, I could have lost my vision and. Nobody was fighting for me, and that’s really frustrating
Caitlin: It is because I was told since 13 if you ever have the splotches of vision disappear, go to the ER, immediately you’re go, you’re going to look at your vision.
Caitlin: And it was one where, because I had been told, Oh, don’t worry, the two tattooers gone. I from like ages of like 23 to 25 started having a severe drop in vision. Where I went from like a negative 75 to negative one 75 like in a span of six months. But all of us were like, mm, that’s weird. And moved on.
Brianne: Right. The thing that could have caused this, we’ve all been led to believe is gone. So we’re not, have no reason to ask questions about that because one thinks that imaging is precise or one hopes and bitching as precise. Yeah. Um, and so how long ago was that?
Caitlin: Um, that would have been a year and a half ago that they found that came back.
Brianne: and so did you go to see a neurosurgeon.
Caitlin: I followed up a really good neurosurgeon here. He’s done a lot of pituitary tumors. Um, I switched the sciences so I can’t go back and see him anymore. Um, but I at least now have a new visual spatial field test. I have the new nerve testing that shows the damage. And I know, at least for me personally, going forward, I want it removed since I’m only in my mid twenties I don’t, I already have nerve damage. I don’t want to take the risk,
Caitlin: so that’s what I’ll be pursuing with my new neurosurgeon.
Brianne: Yeah, and I, I guess since it’s still in the future, you can’t really know kind of how that goes or what that involves. Have you found a new cert? A new neurosurgeon?
Caitlin: I have, I see them in January. Um, I’m weirdly excited to go to neuro surgery. Uh, or my last surgeon, they told me it’s actually a very easy surgery. They go up through your nose, break back through your brain, and just kinda carefully piece it out. And it, it is brain surgery. So it’s all the usual risks, but it’s the, I guess the least invasive of the brain surgeries
Brianne: and they feel like pretty not worried about doing it, which is I’m sure comforting, like
Caitlin: and it’s very comforting.
Brianne: What a job to have and being a neurosurgeon. Yeah. Okay. So that’s kind of a like present into future thing. So I will go back to my question before of like, having had all of these different experiences like. How, how do you feel like your health impacts your life now? Or do you feel like more well than you used to be? Gosh, I am so much less lucid than I think I am sometimes, but I’m just wondering, cause the story has been so up and down, but it’s not like, Oh, I used to be sick and I got better. It’s like this thing used to happen and it doesn’t anymore, but things have changed, but I can function. I’m going to just stop talking and let you interpret that question however you want.
Caitlin: So I think it’s a cool point that a lot of people with EDS have is that it depends on the day, and that’s one of the most, okay. If things is that some days I can, I appear completely able bodied. I’m running around, I go on a 10 mile hike, I do my thing, and then other days I can’t move. I have a cane, can’t get a bed. It, it varies greatly and it also varies. Where I live is really cold, so the cold really hurts, and right now it’s winter,
Caitlin: so this is my worst season at the moment.
Brianne: Yeah. And have you done any like experiments or have you found anything that helps with symptom management? That’s not just like, I don’t know why I said it like that because I don’t mean it like that, but beyond what a doctor would recommend, you know, like I guess you mentioned the THC lotion, but people try all kinds of stuff like heating pads on the relatively normal side and like diets or supplements or, I did see it. Instagram post about a turpentine cleanse yesterday. So people, yeah, that was my reaction too. But people try all kinds of things.
Caitlin: Um, so I tried to get back into pain management, uh, my old insurance and was given the lovely, and they’re the only pain management even available and was given the lovely response. We will see absolutely no one with the EDS diagnosis. They would be why they just said, I will not see that diagnosis and not just the head doctor, every single doctor at that practice.
Caitlin: So I was stuck with that insurance for awhile, for about a year or so, and I said, Oh, well, I’m going to figure out how to do it myself. So exactly what you were asking. And I know heat works amazing, really hot shower jacuzzi and using heating pad. I know doing like swim therapy really helps because it does keep your joints stabilized. I found arnica cream is really nice. Like I really love that one. Um, another cream called penetrates
Caitlin: and I also found, it’s like the reverse of Biofreeze. It’s a heat cream, which I can’t remember the name of, but it’s really, really great.
Caitlin: So I found all that, cause where I’m at right now, THC is not legal, so I don’t play with it then. And so I found all those creams really great. Um, I found bracing really helps. I have braces for my ankles. I’ve, uh, braces for my hands and for my left shoulder, which is my worst shoulder.
Brianne: Yeah. Yeah. And bracing is a common thing that people, yeah. With EDS it is. If you
Caitlin: Um, I’ve, I’ve tried Kinesio taping, uh, both me and one of my local friends who is EDS, uh, because of our skin type, because it does often lead to fragile skin. It, it’s not really a great way to do it.
Brianne: Yeah, I guess I never thought about that before, even though I know like I’ve seen a lot of people with EDS who are talking about like bandaids and the, the tape that they use after our blood draw when they put a cotton ball on you or whatever, and for some reason I had never considered that. That would be similar to the tape, which I’ve definitely seen people use too. So of course that would be an obstacle.
Caitlin: Yep. So I, I try to Kinesio taping for the left shoulder ones cause she, cause when I am able to, I really like to do like boxing and hiking, things like that and like being able to stabilize my shoulder would be great, but it ripped off and also took some skin with it and I’m good.
Brianne: Yeah. Not better.
Brianne: Totally. Yeah. And so we’re pretty much caught up to the present. Right. I mean, we got into the future a little, so hopefully. Um, yeah. And you mentioned that you incidentally have met a few people with EDS now. Yeah.
Caitlin: I have, I was at the first one was super funny cause I was at work. And we are somehow, I forget how we were talking about flexibility of our hands and I was like, I did something like, ha ha, you think you could do that? But I like bent my like wrist all the way back. And they were like, Oh, that seems strange. I’m like, yeah, but I have a lot of hand pain and one of the girls I work with like whips rounds, like, what did you to say? And I’m like, Oh, I’m like, I’m hyper flexible. I can kind of move her things. She’s like, what is your diagnosis? And I’m like, Oh, I have. And she’s like, there’s no way I do too. And it’s been somewhat, I’ve been working with for like six months. We all sudden realized we both had the same exact disease. And from there,
Brianne: never came up.
Caitlin: It was great. We got to talk about a lot of things. Um, she, I mean, I wouldn’t say we’re, she’s worse than I am or that I’m worse than her. She has a little bit of an experience. She has a lot of problems walking now, so she tends to sometimes use a, um, a Walker and really enough, we’re also the both exact same age. Um, so it was one more.
Caitlin: And it was one where we got to like, you know, Oh, I found this really cool brace. I actually found a physical therapist who knew about us and recommended her to him. So she was able to go see this physical therapist who was also really good with EDS. Like we just kind of share tips with each other.
Brianne: Yeah. Yeah. Cause I was thinking about, one thing I think that a lot of people talk about is how like finding community online can make such a big difference when you have nobody to talk about it with. And like what a world, when you also meet someone in your office who you’re able to like share resources with. Because as we’ve been talking about a lot, not every professional is prepared to deal with this kind of thing.
Caitlin: Yeah. And the other person, um, one of my best friends from college, um, I was talking with her one day and then she’s like, Oh yeah, by the way, my, my roommate has to go surgery. She’s like, she has EDS. I’m like, excuse me? And she’s like, yeah, she has EDS. I’m like, that’s my new diagnosis. And I actually just got the meet that person for the very first time. And it again, it’s that weird experience of like we’d have so much in common just right off the bat.
Brianne: and it’s shaped so many of your experiences, right? It’s like, yeah. Yeah. That’s, that’s pretty cool. Have you, um, do you connect with people very much online? I’m always interested in people’s experiences with like online communities too.
Caitlin: I actually, I do. Um, there’s some really cool Facebook, um, that are even kind of local to us. And then actually I found you through EDS on Reddit. I think it’s Ehlers Danlos someone had shared your open letter and I had read through it and saw like you asking if anyone wanted to be interviewed. And I found that’s really nice. Like I had a, I think three weeks ago I had a really depressive state where like everything just felt like it was going wrong and just being able to post online and be like, do you guys experience this? Cause this really, really sucks. And having everyone be like, Oh yeah, I also go through this. It was just, I don’t know, it made it better.
Brianne: yeah, yeah. I think like sometimes. This is, I’m talking about myself, but I think people talk about this a lot too. It’s like there’s pain, which this is also true for physical pain, like something hurts or something hurts emotionally, but then there’s also this added really difficult level of thinking that no one else experiences it. Or like thinking like there’s an agony involved, I feel like, and it can make such a difference. And for physical pain, but also for emotional pain, like being down or being not clinically depressed, but like situationally depressed. That just realizing that you’re not the only person who’s experiencing this by itself can make such a difference. Like, and it’s hard. I feel like it’s really hard in, in an environment where we have no media representation of chronic illness. Really at all. Now, I don’t know if you pay attention to Jameela Jamil, like for Ehlers-Danlos syndrome, the celebrities that have Ehlers Danlos include Jameela Jamil, who you don’t look like, you know who she is. She’s on the TV show, the good place. Um. She’s British, and she also has a dog game show. I don’t know. She has some other weird show now, but she’s on the good place. She is very, um, active on social media, on Instagram and Twitter. I think sometimes she does a lot of great activism. Sometimes people
Caitlin: Not so much.
Brianne: her. Yeah. But like she has Ehlers-Danlos syndrome and she talks about it and then like Lena Dunham, and those are the only two people with EDS that I could think of and I
Caitlin: And see ya.
Brianne: Oh, right. That was a huge thing right. Yes. That was a huge thing recently when that, and I feel like something happened where there was a bad headline about it so that it looked like
Caitlin: She had put a comma and so I F I forget exact situation, but she had forgotten punctuation somewhere and so they read it all together. Yeah. It seems really evil list.
Brianne: Yeah. And I think it was like it was published in some publication and they, nobody on their team fact checked it. So it was just like Ehlers-Danlos syndrome, a neurological disease
Caitlin: That was a
Brianne: yeah. Yes. Okay. You’re right. So like three, but who aren’t, I mean, they’re not out there like representing what Ehlers Danlos syndrome is. They’re just doing whatever they do, and incidentally, they have EDS the way that it’s presented, kind of. Um, so I think, I just think it’s really cool the way that the internet is like, made this stuff more available to people. You know, these experiences. I’m super rambley today. I just want to go ahead and comment again. Um.
Caitlin: No, I appreciate it.
Brianne: So, yeah. Um, is there anything about chronic illness that we haven’t talked about that’s been on your mind or from your experience or kind of whatever
Caitlin: So for me, part of the reason I like working in a medical field, I’m nonclinical side, but I’m also, I see patients, so the really nice thing is I get a lot of people who have chronic illness who call in or I see them or however happened to meet them. And I get to kind of talk to them. And I’ve had experiences with people who are young, who are old. Um, and it’s that moment of, like you were saying, where I finally get to talk to someone and I feel less stuck in my head, were always really nice experience. I’ve sat down with people and be like, Oh, you know, you can do this, this, or this, or there’s this support group. And I dunno, chai, I really encourage anyone who has chronic illness to try and seek those out. It really makes a world of difference to be able to talk and be like, I’ve been made to feel. So inadequate. And so like these things aren’t really happening to me that I finally get to speak to someone else and I just, I feel better now.
Brianne: Yeah, and I think a lot of the time it’s less. It can also be about the practical tips, but like what works for one person might not work for another person. So that’s not even the primary benefit. I think of a lot of these groups. It’s, it’s exactly what you just said, like, Oh, I’m not alone in this, and that’s powerful. Madison.
Caitlin: it’s sharing and saying like, Hey, uh, my ankle really hurts. What’s a good ankle brace? And then other times it’s just hearing someone say back like, my ankles really hurt too, and I’m really sorry you go through that, but I don’t know how to help, but at least we have it together.
Brianne: Yeah. Yeah. And I think that’s also like a part of the experience of being sick is learning is like you kind of start to realize how inadequate a lot of what a lot of the platitudes that you hear are, and you’re able to be like. Not that I never use platitudes, but like it changes the way that you respond to other people’s experiences because you get so much like junk thrown at you and you’re like, that wasn’t helpful. Like, don’t tell me to cheer up because my ankle hurts, or whatever it is. Like I’ll stop telling people that and we can just have a different conversation about pain and that’s great too.
Caitlin: What’s the difference between sympathy and empathy? So a lot of people, you feel like they sympathize and they feel sorry that you go through it. It’s different to meet someone and they empathize with you and they know your exact experience. I had that moment. I had a friend who had to go through knee surgery and she’s been with me since I was five years old. So she’s seen the whole ups and downs and. We were walking through a festival and she was like, Oh my God, you don’t even understand how bad my knee hurts right now. So I remember turning and being like, uh, yeah, actually, I really understand. And she’s like, Oh my gosh, I’ve never thought about that. That this is just your every day.
Brianne: Yeah. You’re like, I don’t mean it to like undermine your paid. I just mean like, actually, don’t worry. I know how much it sucks. Yeah. Yeah. That’s it. That’s the whole thing. Find people who understand.
Caitlin: it’s always nice when you can find someone who empathizes because it’s, I don’t know, it’s very cathartic to someone instead of saying like, Oh my gosh, my hip really hurts. It’s dislocated twice today. And so saying someone’s saying, Oh, I’m so sorry. Can I do anything? It’s, Oh, I’m really sorry that’s happened to me before. And I don’t know, sometimes that’s enough.
Brianne: Yeah. Yeah, definitely. And I think like there’s this other thing where with chronic illness, at some point you start to be like, this isn’t probably ever going to go away entirely. And so I don’t like it. It’s my work to come to terms with that or make that work or make peace with that. But like I don’t need other people to tell me to lie to me and tell me that it’ll get better. And so. Yeah. Having different conversations where we’re just like, yep, sometimes it sucks and nobody’s uncomfortable with that. Reality is also really validating.
Caitlin: And I, that was one of the big issues I had with my ex husband and his family. Uh, one, uh, one of his family members used incredibly ablest language and incredibly offensive terms, which that was not fun. That definitely hurt. But it was one where he couldn’t quite come to terms with what was happening where even if it’s something as simple as saying like, I really can’t have you help me up cause my spine is broken and I need to, even though you’re going to hear me in pain, I have to do. It was really hard for him to come to terms with cause he want to help pick me up.
Caitlin: And it was just that disconnect of he was someone who physically had never been disabled and it was a roller coaster. Same with any of my family.
Brianne: Yeah. Yeah. And like there’s so much work that everyone has to do for that stuff to start to make sense, which I think is like kind of what you’re describing of like one, this other person has to be ready to do a ton of work to just even get comfortable to get comfortable with what it looks like for their partner or their loved one to have chronic illness. And there’s a ton of work there. And then also this person with chronic illness who might have very little bandwidth for like. Gosh, this is going to come out so much later. But there’s been a lot of discussion on Twitter this week about what emotional labor is and is not. Um, but like, it is emotional labor to support someone as they become comfortable with your illness and to really try and like dig into the experience to help, to help them feel empathy because you don’t have to have had an experience to be empathetic, but you do have to like, you know, like carve out the difference between sympathy and empathy. And. Giving someone enough information so that they can do that is work like,
Caitlin: It’s a lot of work. And it’s one where I think we got closer towards the end, especially cause as he, I have never really suffered from mental disability, but he did. So it was also kind of a shared emotional work where it was me learning to empathize with what a mental illness meant, especially cause he had a pretty severe one versus him trying to empathize with my own disability. So it was definitely an interesting exchange and it made me definitely opened my eyes up to an experience I’ve never really had to have.
Brianne: yeah. Yeah. Which bandwidth, like in any of these situations, a lot of bandwidth is required in order to like get in, get out of your own experience on the inside, the other person’s experience. Yeah. Yeah. I like, I’ve, I feel like I’ve had a lot of conversations lately. Again, this will come out later, but right now it’s just before the holidays. And so I’ve been having a lot of conversations with people about this thing of like, okay, I’m about to go spend time with friends or family who I don’t see very often, who maybe have a vague understanding of my health, but like, not really, right? Like they don’t. Really know what it’s like day to day and just all of the work that goes into navigating those conversations, even if what you’re, even if your tactic is deflection, which I’ve learned that a lot of people do, and I’m going to try this year, but like, just being like, Oh, you know, same, same, how are you, and not getting into it, but like, I dunno, it takes a lot of bandwidth.
Caitlin: It does, and it’s one where it’s actually a conversation I recently had with my mother where. Um, she had said something that had really hurt my feelings where she said, Oh, well you’re probably not, you’re really not disabled cause you don’t face chronic or chronic pain. And is one where I, we actually sat down, I had a really nice conversation where I’m like, that really hurt my feelings because I am disabled. I actually do experience chronic pain every single day. Like I always rate it from like, my chronic pain usually is a five or six, but I never show it. Cause, at least from my last experience, especially with like my husband and his family, I had learned to just mask it. It wasn’t worth it. I didn’t want to deal with the fight because for them it would be seen as I feel now guilty. For me, it was like, I’m just living my life.
Caitlin: And so it was one more, at least for me, my mom, we sat down and she’s like, I would really love to know what’s going on. Like tell me if you’re in too much pain. Tell me if we need to stop the car and get out if you’re hurting, tell me if you need to be to put the heats, the S C, um, heaters on like. Don’t just keep it to yourself because for me it seems like everything’s going fine.
Brianne: right. And Oh yes. Cause that’s a huge problem too. I think like simultaneously we learned that it’s easier if we don’t let people see whatever is happening symptomatically because. You know, if you have to manage someone else’s emotional reaction to your symptoms, like twice, that’s enough times to realize that it’s not something you want to do every day. And then simultaneously you learn very quickly that when someone can’t tell that you’re symptomatic, they assume that you’re not. And like they’re. Both of these things are happening at once. Like, do I want to do the work of like supporting this person is they get upset when they realize that I’m actually in pain? Like, no, that’s, I don’t want to do that work when I’m in pain, but also do I want certain people to be able to actually support me because they actually understand what’s going on and like, yeah, we’re
Caitlin: I like
Brianne: about a lot of the emotional work today.
Caitlin: Well. So going back to what you said about the holidays, it’s making that decision with each person, the meat, which is exhausting in itself. Like, okay, do I really want to sit down and be like, no, actually I’m doing terribly today and I’ve been having a bad last few weeks. Or saying like, Oh no, I’m fine. How are you going? Like it’s picking your battles with each person.
Brianne: Yeah. And some, some people, cause I just asked about this on Twitter, so I got a lot of lot of different answers, but some people had also said like one, I’ll judge whether or not this is just like a pleasantry or the person actually wants to know, which is fair. That’s an easy one. And they’re like, now if I think that it’s someone who genuinely wants to know and I genuinely want to tell about it, I’ll basically be like, let’s pick another time to talk about this. Like, let’s get coffee. Let’s have a phone call. Like. Not right now at this holiday party, like it’s not a conversation for this. We can’t have it properly, and we’re both going to be dissatisfied at the end. So again, like deflecting
Caitlin: Cause there was some family members where I’ll go into all the detail, like my grandmother, like Oh, we’ll see. We’ll sit down and I’ll work through her. Like what exactly everything means. And then there’s other family members where I’m like, we don’t need to,
Caitlin: you know, the just.
Brianne: Yeah. Yeah. And like even when you have new information, it’s usually like, things haven’t changed that much. The only thing that I really need some people to understand is that it’s not gone because I’m not talking about it, and that’s the part that matters.
Caitlin: Well, it’s that idea of like invisible disabilities where I, I am so excited to have my new disabled parking pass, but I also am experiencing really, really deep anxiety because I, even with a cane, I’ve had people make comments because of my age. Like, why do you even have cane? Well, you’re just faking it like random people at Walmart will share these experiences with me.
Brianne: Yeah. So many people think that they’re the disability police and it’s so confusing. Why, like.
Caitlin: I don’t get it either.
Brianne: Yeah. Like the only person that I could like conceptually understand having any right to do that is if there is not enough disability, like parking accessible parking, and you really need it and you’re like pissed about it and you’re like, that person doesn’t need this parking as much as I do. And I’m not condoning that. I’m just saying that I think that is more valid than most people who are the disability police.
Caitlin: The funny thing is I’ve never, at least so far, I’ve never been stopped with someone who either has a very visible or an invisible disability that will say like, you shouldn’t be using that bathroom or you should be doing this. It’s always someone who will openly state they don’t have a disability. That are always the angriest, which makes less sense to me.
Brianne: You’re like, where is this coming from and why?
Brianne: that’s also like a bigger societal problem basically. And a representation problem. Okay. We’ve been all over. Um, and I did ask you already if there’s anything else, is there anything else that we missed that you’ve been thinking about?
Caitlin: No, um, that pretty much sums it up where I. I have gone through a more like whole menagerie of things I’ve answered to some of them. I might never have answered for this. Some others and I just keep going.
Brianne: yeah, yeah. That’s it. That’s a good summary. Thank you for taking the time and the energy to talk to me. I really appreciate it. I know that these are a lot of energy to like dig into everything.
Caitlin: I really appreciate you kind of having a collective all of these stories together.
Brianne: Yeah. Yeah. I’m really grateful for the chance to talk to so many people. It’s made a huge difference in even my own experience of my health and my medical care, et cetera. Thank you.
Thank you for listening to episode 66 of No End In Sight!
You can find Brianne on instagram and twitter @bennessb and and you can find this show on instagram @no.end.in.sight.pod.
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As usual, don’t forget that Brianne 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 also, Her cross stitch pattern store, Digital Artisanal, is back online! Shes giving away unlimited free patterns right now with the coupon code NEIS.
Thanks for listening.