Caitlin talks epilepsy, EDS, and life with chronic pain.
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Transcript
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.
[guitar riff]
Brianne: I like to start just by asking people, how was your health as a kid?
Caitlin: I actually was, I would say, healthy to probably age four, and that’s when things kinda got weird. When I was born, I was already two feet long. They already knew I was going to be really tall. And that trend continued, but it was around four or five that my… and for context, I call my birth mom, my birth mom, and my mom is actually technically my stepmother.
Brianne: Okay.
Caitlin: And so my birth mom noticed I started tiptoeing everywhere. And at first she thought it was like a cutesy five-year-old thing. Like who knows?
Brianne: Yeah, it’s whimsical.
Caitlin: She noticed it was going on for like two or three weeks. And she finally stopped me and she was like, “Caitlin, why are you tiptoeing everywhere?” And I said, “Because 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 in my ankles, so everwhere I was walking, I was walking on a broken foot.
Brianne: Wow.
Caitlin: And that’s when we started doing testing, and at least back then, because I’m 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 she’s growing too fast and she’s going to stop. Or maybe she has some form of Marfans or we’re not quite sure,” and they tried to do some experimental testing, but my birth mom shot it down.
Brianne: Okay.
Caitlin: And everything pretty much continued normal until probably around 13 or so.
Brianne: So were you still having 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 those 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.
Brianne: Hmm.
Caitlin: So there’s 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 know any different.
Caitlin: Yeah, so 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.
Caitlin: Quite a bit. Quite a bit of change at 13. 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 sinusitis, but other than that I would move on with my day. That’s it. We’re going to get them out of there. It’s going to be a quick TNA, which is the tonsil and adenoid surgery and not a big deal. But I went for cardiac clearance for surgery and that’s when they noticed a pretty severe arrhythmia.
Brianne: Okay.
Caitlin: From the arrhythmia, it turned into bradycardia to tachycardia to I think it was a four point arrhythmia, where I starting to go and do quadruple runs. I was almost passing out. My heart rate ranged 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 when that started?
Caitlin: That’s actually when it started. I didn’t have a ton of symptoms beforehand besides the muscle spasms something like that.
Brianne: But the lightheadedness or the kind of everything else that comes along with heart rate, arrhythmia issues? All new. Okay, got it. So they found that when they were clearing you for surgery. Sorry for the interruption.
Caitlin: No, not at all. And it started pretty slow. The arrhythmia started pretty benign, and they noticed a little bit of tachycardia, but I was only hitting like 120, which is fast for most people, but for me, found that was pretty normal.
Brianne: Yeah. And like very manageable, right? Like, “Oh, yes, sure.”
Caitlin: Yeah. I would get a little out of breath, and then I’d move on and be fine. But it just kept getting worse and worse and worse because it went from just a single arrhythmia to double arrhythmia to triple to quadruple. And that was over a span of about a year or so.
Brianne: Okay.
Caitlin: Even when I went in finally for that TNA, for some reason I had a really severe reaction to the anesthesia, and I ended up in the ICU for a week or two.
Brianne: Oh wow.
Caitlin: So that’s why everything kind of turned at 13.
Brianne: Yeah, and if you’re in the hospital for a week after what is usually a unremarkable surgery, that by itself is like, something is happening here.
Caitlin: Yeah, pretty much. It started the whole cardiac peds and all that kind of stuff going on, and from there it just kept getting weirder. I eventually did an MRI of my brain. What they then thought was just a pituitary hyperplasia, which would mean that my pituitary was too enlarged, that it was abutting my optic chiasm, which is a fun way of saying it’s kind of nudging the blood vessels in my eyes.
Brianne: Okay.
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. So we moved on with that. That’s one where we did explore doing radiation or move all the pituitary. But again, 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 invasive thing that will have its own side effects, obviously. Yeah. So many questions like that.
Caitlin: Pretty much, yeah. And then, first year of high school, because the TNA was in middle school, eighth grade, in the US… first year of high school, when I was about 14 or 15, that’s when it got really bad. I maybe made it 20 days of school that year. And it was one where we 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 like a drop of my right arm where all of the sudden I would 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 sleeping for easily 20 hours after a blackout. And so I was just completely debilitated.
Brianne: Yeah.
Caitlin: And we come to find out…
Brianne: 20 days of school is significant. I don’t know how many normal school days there are, but at least nine months where there’s at least 20 days a month. So that’s…
Caitlin: It’s supposed to 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 really vicious migraine cycle that lasted for about a year and a half unbroken. And then I had a weird split in my skin on 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. 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’d be a lot of neurological signs, like my right arm would always lift partially off my side. And that would be followed by a severe migraine cycle and the 20 hour sleep. And we knew it was happening two or three times a week or so. So that would be almost entire day gone every time.
Brianne: Right.
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, was it really quick and dramatic with anti-epileptic? And so that was a really dramatic change.
Caitlin: Really quick change. It would have been… once I titrated on, we tried one, didn’t work. Tried another one. It was like a month and a half titration and all sudden I felt like who I 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. And so where… I’m trying to think of how to formulate this question. It’s the end of the week. You had been still sort of going to school, it sounds like. So how was it to get a lot of your quality of life back after being out of the social environment and out of this academic environment for years?
Caitlin: It was amazing. For me, I personally always loved school and the academic side, not just the social side. I had maintained all A’s. I would literally go maybe once a week, grab all my homework. I would come in for testing. I would literally walk in and take a test, walk back out.
Brianne: And they let you do that? That by itself is impressive.
Caitlin: So at least here in the US, we have what’s called a 504 plan, which is the medical plan for any kind of student who has an issue. 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 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.” I kept my grades up so they couldn’t push that issue.
Brianne: Right.
Caitlin: And we just made it work.
Brianne: Yeah. There are obviously… not everyone is able to do the work when they’re sick. There’s other layers to it. But the truancy problem can be a problem all by itself where schools are just like, “Nope, sorry. Doesn’t make sense. Good luck.” Anyway, so you got to like stream yourself back in basically because you knew what was going on.
Caitlin: 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 to I was able to go back every single day. And I still had that 504 plan in place especially now because of seizure prevention, but I just kind of carried on.
Brianne: Yeah. So, then how has the medication been? I don’t know a lot about epilepsy medication, so tell me about that.
Caitlin: I went through two main ones. I went through Keppra, and I’m completely blanking on the second one. But I was on Keppra until about 19, and then I started having 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. I used to have a really good memory and that was wiped out.
Brianne: On the first one? On the first med?
Caitlin: Both.
Brianne: Both. Yeah.
Caitlin: And I had a lot of those kind of… 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 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. Because 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, which can progress and become worse and worse, because mine were non epileptic or non convulsive and it can change over to a grand mal, or you take the side effects.
Brianne: Right. And when you… I guess I kind of just skipped ahead on the timeline 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 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, or epilepsy symptom… 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 kind of normal in air quotes, high school years, and then you applied to college, got into college. And then, did it feel like it was coming back? Did you expect that you could have… or did you know that you could have breakthrough seizures?
Caitlin: They warned me because 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. The one that I remember so distinctly was, I was sitting in math class and then I woke up on my bed.
Brianne: Yeah.
Caitlin: It was just gone. And 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 because I walked across a busy campus. I walked across a street. And no one knew that I had them because 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 then to 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: Yeah. So the last few years, no symptoms, no drugs, nothing.
Brianne: That’s really something. I feel like… 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 details of it. So between the first thing, which 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. Since 22, 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. It’s one where I went for surgery at 21 and I got completely cardiac free. I no longer have an arrhythmia. I did cardiac rehab. That’s gone. Tachycardia and bradycardia… I have a little bit of a bradycardic rhythm. It’s kind of slow, but that disappeared.
Brianne: And what was the surgery at 21? Did you say that?
Caitlin: At 21 I had gastric bypass
Brianne: Okay.
Caitlin: Or sorry, a gastric sleeve because 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. And I still kind of had this joint issue going on though. 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. That’s a pretty big illness to go through.
Brianne: Definitely.
Caitlin: But it didn’t stop. It was two or three weeks later, and 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, fibromyalgia, rheumatoid arthritis, the whole gamut of rheumatology, and there was nothing. The only thing I got kind of temporary diagnosed with was benign hypermobile disorder.
Brianne: Okay.
Caitlin: Which is just the fun way of saying your joints move the way they shouldn’t move.
Brianne: Right. You are hypermobile, and we don’t think that there’s any like underlying connective tissue problem. Probably.
Caitlin: That they 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 became the series of, “I’m sorry. I don’t know what to do. You should probably do more research.”
Brianne: Again, astounding. And on a completely irrelevant note, I was just having a conversation today with somebody who has Ehlers-Danlos syndrome, and she was telling me about how the geneticist who diagnosed her was very frustrated that so many doctors won’t touch it, basically. Because for hypermobile type, you don’t need a geneticist. And there’s no reason that more doctors aren’t more comfortable with it. I mean there’s reasons, but there’s no educational reason.
Caitlin: That’s actually what I finally got diagnosed with. I have hEDS.
Brianne: Okay. Okay, so let’s get there. So you had seen somebody because you had all of this joint pain during your senior year of college, you said.
Caitlin: I think it was either my junior or senior year.
Brianne: Okay, yeah, late 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 so you’re looking for an explanation. The best that they have to tell you is that you are incidentally hypermobile, but that’s not really an explanation. Yeah. Okay. 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 guess I just suffered with it. 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, were are your doctors suggesting, or did they seem to believe that losing weight would make that go away? You’re nodding very vigorously in addition to agreeing. Okay. Yeah. Just checking.
Caitlin: Oh, I had a lot of ablest or kind of ablest 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 going 220, I don’t think losing weight is going to fix that.
Brianne: Right. It’s clearly not the driver of those issue. Maybe there’s a relationship, but it’s not going to fix this. Yeah. Yeah. Okay. And so, 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. Yes. As a different, interesting aside, I’ve just done too many interviews lately. I also recently interviewed someone who was about to get, I think a 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 fat cells hold a lot of hormones and they dah, dah, dah, dah. And it was really interesting to hear this other perspective of so many doctors just blame everything on weight, which is ludicrous and not scientifically sound in any way, but it was interesting to hear 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 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 completely understand because 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.”
Brianne: Yeah. You don’t need medical help.
Caitlin: I was there for completely different reasons. I’m like, “I agree. Medically I am overweight, but I’m not sure what impact this has on our discussion.”
Brianne: Yeah. Yeah. It’s such a huge problem. And did you also 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… because 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 after I lost a lot of weight. Before they’d be like, “Well, we need to double check your A1C.” I have no history of A1C issues. “We need take your blood pressure.” I have low blood pressure. It was always an assumption that I must have a lot of chronic things that are attached to being overweight. And it was never actually… I would have to get through a 30 minute discussion before I could actually talk about what I needed to talk about.
Brianne: Yeah.
Caitlin: And now, especially after I lost weight, especially at 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.” No one cared.
Brianne: Right, right. And of course, everybody should be monitoring those in the broadest sense. But that kind of bias is, like you’re saying, it’s preventing good care. It’s absurd. 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 right?
Caitlin: About a year later.
Brianne: Okay. And did anything happen in the middle?
Caitlin: So yeah, actually one thing did happen. So after surgery, everything was going great. I got married and I’m now divorced, which is fine. And after that we were living together. Everything was going great. And one day, something really bad happened. So I had already lost all the weight. I was still on epilepsy medication. 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. My husband then he picked me up, put me in bed. I like stayed in bed all day because it was around nighttime ish. And the next day I woke up, I couldn’t get up to go to the bathroom. I literally was in searing pain, it was raining down my leg. And I had just had a friend who had sciatica 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. Just rest a little bit more.” Like, “No, I need to go right now.”
Brianne: Yeah.
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. Go wait it out,” basically.
Caitlin: No. The first time, they were like, “Okay, you herniated L2 and L3, and obviously there’s a sciatic impingement,” which that was fine. And then in between, I had an 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 because I’m like, “Okay, I have a herniated disc. I need to at least go to therapy, be 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 and said, “I need a new doctor.” I got transferred back to an old one. And before I could see her, I had to go to the ER again because it was… I couldn’t move. And that’s when they found out L1 broke in a compression fracture, which is almost like a door wedge.
Brianne: Okay.
Caitlin: So L1 was now broken. L2 and L3 were herniated with nerve impingement, and I was in 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.
Brianne: Yeah.
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 care providers.
Brianne: And were you experiencing any relief from that treatment combination?
Caitlin: Yes. So I did experience some relief 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. Okay. But the injections were helping. So you move and you need to find new care providers and a team basically at this point, because you’re managing a lot of conditions, or a lot of symptoms, right? Yeah.
Caitlin: And at my old family doctor, they again 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 hypermobile,” 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: I now have a horrifying fear of the dentist. Because 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 weird about stories about doctors is that 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 not prepared, and they’re not taking care of themselves the best that they could because their doctor has 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 it to you like it’s a fact.” I’m like, “How are these both happening at once? It’s bizarre.”
Caitlin: And I had an experience like that before. 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, 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.” I 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 then ultimately this person tells you all your teeth are going to fall apart, basically.
Caitlin: Yup.
Brianne: Different issue, but not better.
Caitlin: Different issue. But I just tabled it like, “Oh well.” I did go and get… I had to get teeth pulled. I got those pulled for just the regular… oh my gosh, I’m forgetting… your extra… wisdom teeth, yup. And got all that over with immediately because I’m like, “Oh my God, I don’t know what’s going to happen.” And on a weird side note, 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.
Brianne: Huh?
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 wisdom teeth, I guess, sometimes dentists, sometimes surgeons… yeah. Okay.
Caitlin: So I tabled it. We moved. I started getting a new care team. 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’ve been listening to everything you’re talking about and it’s everything that she complains about. Maybe you should follow up on that.” And it was a weird enough experience where I started seeing people. I saw… weirdly enough, the primary care at the moment was actually really well versed in EDS. She had multiple patients. And then I started seeing an orthopedic, and they’re both like, “Yeah, you pass…” I pass a standardized EDS test.
Brianne: The Beighton score?
Caitlin: Yup.
Brianne: So for hypermobile hEDS. Do people say it hEDS?
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 a thing that’s happening or if I’m going to start saying this on the podcast and no one will know what I’m talking about.” Anyway. Okay. So the orthopedist does the Beighton test or gets your Beighton score.
Caitlin: Yup. And I keep passing it. I pass the history wise. I do have a little bit of strange scarification that happens on me, which is like the… 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 Marfans and occasionally people of the general populace have it, but primarily EDS or Marfans. And so that is what cleared me for, I now have EDS. We tried to do genetic testing, but like you said, it’s not really needed for hypermobile, and we just didn’t have a geneticists near us.
Brianne: Right, right. I understand that it’s because there are genetically identified types, but it’s strange that most doctors are totally uncomfortable diagnosing 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 say the same.
Caitlin: It was one where they’re like, “Oh, well we can then rule off cardiac.” I’m like, “I can almost guarantee I don’t have cardiac EDS.”
Brianne: Yeah. And those ones are more… I feel like the histories on those can be more 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 it probably… as I turned 23 is when I officially got my very first diagnosis of 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 osteoporosis arthritis clinic. I literally got a call from the receptionist saying, “I canceled your appointment.” I’m like, “Why?” And she’s like, “Because your age. Why are you even here?” And 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 my orthopedic basically said, “I’m not really sure what I can do for you. I can try doing a…” where they go in and do the ablasion of your nerves in your back because I was still really debilitated by it, and it’s something I still 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. Yeah. Okay. So after diagnosis… okay, I just want to make sure that 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.
Caitlin: Correct.
Brianne: 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 kind of nerve fallout from that.
Caitlin: And also right before I moved from Texas, I did a followup MRI because of 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, not to say that EDS is easy, but certainly it varies a lot how it impacts quality of life and 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. I’m flexible and some stuff hurts. Fair enough.”
Caitlin: I mean, that’s exactly how I felt. I’m like, “Okay. 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 standardized treatments for EDS, but was there anything going on… anything else going on in 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 because the primary pain at that point was the low back where they did followup 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 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?
Caitlin: So I went to school initially to become 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: Yeah or the testing to get into the medical field.
Caitlin: Yup. So I gave up on that because I realized I just can’t do it at this time. And I started going for 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, my school, I wasn’t able to go back to. So I started working, and weirdly enough I started work in the medical field, in 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 many accommodations to… 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: So I’m sticking to the administrative. I thought about pursuing clinical, but I don’t think my day to day would ever be able to handle it. And so I usually work at a desk. Right now, my job is great. I work at a hospital. I have a sit/stand desk. I can move around. 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 all over the place and they see me twisting around just like, “Let me do my thing and I’ll figure it out.”
Brianne: So as long as you’re able to physically get as comfortable as possible, you have figured out how to get your focus and get some work done. Gotcha. Okay. So, where did we leave off? 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 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 THC. And so I found that worked really well. I did not like taking 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 but this time at least going forward, I could sit down and say, “By the way, I have hEDS. This is what I have.” And kind of try and go from there.
Brianne: Yeah.
Caitlin: I got very mixed results.
Brianne: Yeah.
Caitlin: And also my new primary immediately sent me because my history for a brain MRI just for a checkup. That’s when I immediately get a call back from her afterwards that says, “I’m booking you for a neurosurgery.” And I was like, “What do 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 it is an actual pituitary tumor. 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: It’s one where my actual glasses aren’t bad. They’re maybe -125, 175, 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.
Caitlin: Yeah.
Brianne: And weirdly, I guess when this comes out that this will be kind of in the past, but the episode that I put out today was somebody who had had a pituitary tumor, also lupus. So it was more about lupus, but it’s fresh on my mind right now. And the optic effects that can happen because she talked about that specifically because hers was missed for a long time. She was like, “If I didn’t 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 going to lose your vision.” And it was one where because I had been told, “Oh, don’t worry, the pituitary tumor is gone.” I from ages of 23 to 25 started having a severe drop in vision where I went from like -75 to -175 in a span of six months. But all of us were like, “Hmm, 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 have no reason to ask questions about that because one thinks that imaging is precise or one hopes and imaging is precise. Yeah. And so how long ago was that?
Caitlin: 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 with a really good neurosurgeon here. He’s done a lot of pituitary tumors. But I switched insurances, so I can’t go back and see him anymore. 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 and I already have nerve damage, I don’t want to take the risk.
Brianne: Right.
Caitlin: So that’s what I’ll be pursuing with my new neurosurgeon.
Brianne: Yeah, and I guess since it’s still in the future, you can’t really know how that goes or what that involves. Have you found a new neurosurgeon?
Caitlin: I have. I see them in January. I’m weirdly excited to go to neurosurgery. 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 is brain surgery, so it’s all the usual risks, but it’s, I guess, the least invasive of the brain surgeries.
Brianne: And they feel pretty not worried about doing it, which is I’m sure comforting.
Caitlin: It’s very comforting.
Brianne: What a job to have being a neurosurgeon. Yeah. Okay. So that’s kind of a present into future thing. So I will go back to my question before of having had all of these different experiences, how do you feel like your health impacts your life now? Or do you feel 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 because 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 complaint that a lot of people with EDS have is that it depends on the day. And that one of the most frustrating things is that some days 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 out of bed. It varies greatly, and it also varies… where I live is really cold, so the cold really hurts. And right now it’s winter.
Brianne: Right.
Caitlin: So this is my worst season at the moment.
Brianne: Yeah. And have you done any experiments or have you found anything that helps with symptom management? That’s not just… 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. I guess you mentioned the THC lotion. But people try all kinds of stuff like heating pads on the relatively normal side and diets or supplements or I did see an Instagram post about a turpentine cleanse yesterday, so people… yeah, that was my reaction too. But people try all kinds of things.
Caitlin: So I tried to get back into pain management with 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 not tell me why. They just said, “I will not see that diagnosis.” And not just the head doctor, every single doctor at that practice.
Brianne: Whoa.
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 a heating pad. I know doing swim therapy really helps because it does keep your joints stabilized. I found arnica cream is really nice. I really love that one. Another cream called Penetrex, 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. So I found all that because 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. I found bracing really helps. I have braces for my ankles. I have 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 with EDS like to use.
Caitlin: I’ve tried kinesio taping. Both me and one of my local friends who has EDS, because of our skin type, because it does often lead to fragile skin, it’s not really a great way to do it.
Brianne: Yeah, I never thought about that before, even though I know I’ve seen a lot of people with EDS who are talking about bandaids and the tape that they use after a 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 tried to kinesio taping for the left shoulder once because when I am able to I really like to do boxing and hiking, things like that and 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.
Caitlin: Nope.
Brianne: Totally. Yeah. And so we’re pretty much caught up to the present, right? We got into the future a little, so hopefully. And you mentioned that you incidentally have met a few people with EDS now.
Caitlin: I have. The first one was super funny because I was at work, and we were talking about flexibility of our hands, and I did something like, “Ha ha, you think you could do that?” But I bent my 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 whips around like, “What did you to say?” And I’m like, “Oh, I’m hyper flexible. I can kind of move things.” She’s like, “What is your diagnosis?” And I’m like, “Oh, I have hEDS.” And she’s like, “There’s no way. I do too.” And it’s someone I’ve been working with for six months and we all of the 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. I wouldn’t say she’s worse than I am or that I’m worse than her. She has a little bit of a different experience. She has a lot of problems walking now, so she tends to sometimes use a walker and wierdly enough, we’re also the exact same age.
Brianne: So there’s two of you with mobility aids.
Caitlin: It was one where we got to like, “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. We just share tips with each other.
Brianne: Yeah. Yeah. Because one thing I think that a lot of people talk about is how finding community online can make such a big difference when you have nobody to talk about it with. And what a world when you also meet someone in your office who you’re able to 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- one of my best friends from college, I was talking with her one day and then she’s like, “Oh yeah, by the way, my roommate has to have surgery. 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 again, it’s that weird experience of like we have so much in common just right off the bat.
Brianne: And it’s shaped so many of your experiences, right? Yeah. That’s pretty cool. Do you connect with people very much online? I’m always interested in people’s experiences with online communities too.
Caitlin: Actually I do. There’s some really cool Facebook groups that are even kind of local to us. And then actually I found you through EDS on Reddit. Someone had shared your open letter and I had read through it, and saw you asking if anyone wanted to be interviewed. And I found that’s really nice. Like I think three weeks ago I had a really depressive state where everything just felt like it was going wrong and just being able to post online and be like, “Do you guys experience this? Because 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 sometimes… 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 thinking there’s an agony involved, 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 situationally depressed, that just realizing that you’re not the only person who’s experiencing this by itself can make such a difference. And it’s hard. It’s really hard 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. 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. 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 active on social media, on Instagram and Twitter. I think sometimes she does a lot of great activism. Sometimes people get frustrated with her. But she has Ehlers-Danlos Syndrome, and she talks about it. And then Lena Dunham, and those are the only two people with EDS that I could think of and I…
Caitlin: And Sia.
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 hadn’t put a comma, and so… I forget the exact situation, but she had forgotten punctuation somewhere, and so they read it all together and it seemed really ablist.
Brianne: Yeah. And I think it was published in some publication and nobody on their team fact checked it, so it was just like, “Ehlers-Danlos Syndrome, a neurological disease…”
Caitlin: That was it.
Brianne: Yeah. Yes. Okay. You’re right. So like three, but they’re not out there 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. So I think it’s really cool the way that the internet has made this stuff more available to people, these experiences. I’m super rambley today. I just want to go ahead and comment again.
Caitlin: No, I appreciate it.
Brianne: So, yeah. Is there anything about chronic illness that we haven’t talked about that’s been on your mind or from your experience?
Caitlin: So for me, part of the reason I like working in the medical field, I’m not on the clinical side, but 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 I happened to meet them, and I get to talk to them. And I’ve had experiences with people who are young, who are old, 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. It’s always a really nice experience. I’ve sat down with people and been like, “Oh, you can do this, this, or this,” or, “There’s this support group.” And 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 feel better now.”
Brianne: Yeah, and I think a lot of the time it can also be about the practical tips, but what works for one person might not work for another person, so that’s not even the primary benefit. I think for a lot of these groups it’s exactly what you just said, like, “Oh, I’m not alone in this,” and that’s powerful.
Caitlin: Sometimes it’s sharing and saying like, “Hey, 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 a part of the experience of being sick is you start to realize how inadequate a lot of the platitudes that you hear are, and you’re able to be like… not that I never use platitudes, but it changes the way that you respond to other people’s experiences because you get so much junk thrown at you and you’re like, “That wasn’t helpful. 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: It’s the difference between sympathy and empathy. So with 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 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 very cathartic to someone. Instead of saying like, “Oh my gosh, my hip really hurts. It’s dislocated twice today,” and so instead of someone saying, “Oh, I’m so sorry. Can I do anything?” It’s, “Oh, I’m really sorry that’s happened to me before.” And sometimes that’s enough.
Brianne: Yeah. Yeah, definitely. And I think 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 it’s my work to come to terms with that or make that work or make peace with that. But I don’t need other people 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 that was one of the big issues I had with my ex-husband and his family. 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 because my spine is broken and 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 because he want to help pick me up.
Brianne: Yeah.
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 there’s so much work that everyone has to do for that stuff to start to make sense, which I think is kind of what you’re describing. One, this other person has to be ready to do a ton of work to just even 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… 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. It is emotional labor to support someone as they become comfortable with your illness and to really try and dig into the experience to help them feel empathy because you don’t have to have had an experience to be empathetic, but you do have to carve out the difference between sympathy and empathy. And giving someone enough information so that they can do that is work.
Caitlin: It’s a lot of work. And it’s one where I think we got closer towards the end, especially because 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 because 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 open my eyes up to an experience I’ve never really had to have.
Brianne: Yeah. Yeah. Which bandwidth… in any of these situations, a lot of bandwidth is required in order to get out of your own experience and then inside the other person’s experience. Yeah. Yeah. 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 not really. 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 your tactic is deflection, which I’ve learned that a lot of people do, and I’m going to try this year, but just being like, “Oh, you know, same, same. How are you?” And not getting into it, but 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 she had said something that had really hurt my feelings where she said, “Oh, well you’re really not disabled because you don’t face chronic pain.” And it’s one where 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.” I always rate it. My chronic pain usually is a five or six, but I never show it because, at least from my last experience, especially with 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.”
Brianne: Yep.
Caitlin: And so it was one where at least for me and my mom, we sat down and she’s like, “I would really love to know what’s going on. 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 me to put the seat heaters on. Don’t just keep it to yourself because for me it seems like everything’s going fine.”
Brianne: Right. And yes, because that’s a huge problem too. I think simultaneously we learned that it’s easier if we don’t let people see whatever is happening symptomatically because 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 both of these things are happening at once. Like, “Do I want to do the work of supporting this person as they get upset when they realize that I’m actually in pain?” Like, “No, 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 yeah, we’re talking about a lot of the emotional work today.
Caitlin: So going back to what you said about the holidays, it’s making that decision with each person you meet, which is exhausting in itself. 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 doing?” It’s picking your battles with each person.
Brianne: Yeah. And some people, because I just asked about this on Twitter, so I got a lot of lot of different answers, but some people had also said, “I’ll judge whether or not this is just 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. Let’s get coffee. Let’s have a phone call. Not right now at this holiday party. 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, deflecting.
Caitlin: Because there are some family members where I’ll go into all the detail, like my grandmother. We’ll sit down and I’ll work through with her what exactly everything means. And then there’s other family members where I’m like, “We don’t need to.”
Brianne: Nope.
Caitlin: “You know the gist.”
Brianne: Yeah. Yeah. And 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 invisible disabilities. I am so excited to have my new disabled parking pass, but I also am experiencing really, really deep anxiety because 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?
Caitlin: I don’t get it either.
Brianne: Yeah. The only person that I could conceptually understand having any right to do that is if there is not enough accessible parking, and you really need it, and you’re 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 by 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?”
Caitlin: Yeah.
Brianne: That’s also a bigger societal problem basically and a representation problem. Okay. We’ve been all over, 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, that pretty much sums it up where I have gone through a whole menagerie of things. I have answers to some of them. I might never have answers for 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 dig into everything.
Caitlin: I really appreciate you 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, etc. Thank you.
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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.