Both The Patient And The Provider with Janine Liz, Disabled OT

Janine Liz is a disabled OT navigating healthcare as both the provider and the patient. We talk EDS, occupational therapy, advocacy, red flags in providers, and how small adaptations can change daily life activities. It’s validating, educational and very “disabled people deserve better” energy BECAUSE WE DO!! 

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Transcript

Opening And Guest Intro

SPEAKER_02 0:13

Hello, welcome to Sick I Swear. I'm your host, Caitlin Roadie, and Happy Black History Month, Happy Valentine's Day week. In honor of that, I would like to read one of my favorite poems, which is Roses Are Red, Violets Are Blue, Fuck

Janine’s Diagnosis And Conditions

SPEAKER_02 0:31

Ice. And if you support them, very much so, fuck you too. You know, like that is just very much so a statement we need right now. We have Janine Liz here. She is a disabled occupational therapist, a positive psychology coach, a PP OTD student, a researcher, an advocate, and a just straight up badass. Janine, welcome. First of all, thank you for taking the time and sitting down and being willing to have conversations with me. I think it's really important. And I love your view and perspective on things. So I think it's gonna be really good. Thank you. Thanks for having me. I'm excited. I want to do a little, we have a lot, I want to talk to you a lot about a lot, but I want to know a little bit about your background of getting diagnosed and what your conditions are to kind of give us a foundation of what we'll talk about.

SPEAKER_01 1:22

Yeah, I don't, I actually don't think I've ever talked like on the internet about my background about getting diagnosed, but I was diagnosed a little bit later. So I think I'm right about like five years-ish post-diagnosis. But my healthcare team thinks that's because I was always very active. So, like played sports in college, like all that type of stuff. And my body was able to kind of like keep it together until it was not. But I have a couple of different diagnosed conditions. So EDS is the main one. Um, I do always tell people I have HEDS plus a genetic mutation. It's just so rare, they don't know if that's what's causing it, but there is like familial stuff going on, um, of course, as with most people. Of course. Um, of course. So I have that diagnosed, chronic migraine, as we were just sharing with each other, I think off off screen, MCAS, POTS. Um, I have a syrinx in the middle of my spinal cord. Um, so it's just like a fluid filled cyst in the middle of my spinal cord. I think it's a T4 or five, I forget. Um, but it's there. Um, and then like a bunch of other stuff too, like small fiber neuropathies, like GI issues uh that I should get looked at, but haven't, but like a whole conglomeration of things.

SPEAKER_02 2:38

And so we know EDS kind of comes with a lot of different things. So do you feel as though a lot of your conditions, like EDS is the main thing, and then kind of everything trickles from there?

SPEAKER_01 2:49

Definitely could be. Like as I as the EDS and like the overall hypermobility and issues presented itself, so did a lot of these types of things. Um, but it all started when I got essentially a two-week-long vestibular migraine and couldn't get off the couch, and then like that was it. So I very much am one of those people that has like a day, I think it was like July 13th, um, five years ago, where like that's when it hit, and it just like never uh got better. But yeah, so we're not totally sure.

SPEAKER_02 3:21

I think you know, you know, medical mysteries. We we love it.

SPEAKER_01 3:25

We love it here.

SPEAKER_02 3:26

You are an OT occupational therapist, a coach, a professor, yes, and you're also disabled, and also disabled, yes.

SPEAKER_01 3:35

Girl, you got it going on. Thank you. Yeah, it's a lot, but yes.

Why Occupational Therapy

SPEAKER_02 3:40

Um, how did you get into OT? Like what led you to that?

SPEAKER_01 3:45

Good, really good question. Um, I got into OT. I think I've been in OT for what, six, seven years ago now at this point, which is wild to me. Um, but one of my siblings got occupational therapy, physical therapy, speech therapy growing up. So it was really always like fun for us. Like the therapist would come to the house. Like now I know it was early intervention, but the therapist would come to the house. And I always saw like the physical therapists really working with him, but the OT always just looked like they were having fun, um, which I thought was absolutely so cool, right? Like, how do how does someone come out here and it just looks like they're playing? Um, now I know very much that they're not, but at the being like young, like nine, 10, like that's you know what I had fun. That was your perception of it. Yeah. My perception, exactly. And then I had a friend in high school who was going into occupational therapy, and I was very much between OT and PT. It's so much so that I had done like 250 hours shadowing a physical therapist, um, well, multiple physical therapists, and then went to my first occupational therapy shadowing experience and was like, that's it. Like, this is what I want to do. Um, I love PTs. I have so much respect for PTs. Um, I just knew I could not do what they did. Um, and I loved occupational therapy. So that's how I ended up getting into it, which was really cool. I had a little bit more of a non-traditional like jump into the OT world where we had very much like a family tragedy when I was in college that led to me getting, I think it was like a B minus or something in physiology the first time around. So I was originally waitlisted from my program, which was devastating to me. And then I remember I got a call one day and it was our like admin, and she was like, you know, because I retook the class and got literally like an A plus. Um, because you know, I was in fight or flight and was able to actually focus. Right. You know, like as things happen. And she called and she was like, you know, we have opened a seat for you. Usually the class would have 30, but your graduating class will have 31 if you take the spot, which of course I took the spot. Yeah. Obviously, I'm here today, but it was very much like a little bit of a non-traditional um getting into occupational therapy, which I do think has really like impacted the way that I coach and teach and you know do occupational therapy because it was so kind of like wild how it happened. Um, but I'm so thankful that it happened. I love what I do. Um, I couldn't imagine doing anything else now. And it's been awesome.

What OT Really Does

SPEAKER_02 6:22

So for people that don't know what occupational therapy is, I think there's a lot of like there's occupational medicine and then there's occupational therapy. Can you kind of break down like what it really means?

SPEAKER_01 6:33

Yeah. So like to do that for people who've like don't really know what occupational therapy is, um, they tend to hear occupation and they think that I help you get a job, which like I totally could do. You know what I mean? Um, but it's very much the definition of occupation that we use is like what you use to fill your time. So an occupational therapist will come in and work with you, depending on their specialty and what they do, um, for anything that you do. So like I've seen people for, you know, daily living things like cooking, sleeping, um, getting themselves dressed. I've seen people for things like socializing, going out, like having fun, um, those types of things. I've seen people for work-related things. I've seen people for like intimacy is a really big one, like sexual intimacy, sexual health is a really big one. Pretty much anything that you do throughout the day, an occupational therapist can work with um and through. And we do it through very much a holistic approach. So biomedical, you know, like how much you can move your body, what that looks like, um, sensory-wise, psychological, like it's a very holistic profession, which also leads to a lot of confusion because when you have such a wide net, um, it can be really hard to like sum it up in one or two minutes, you know. But it's a really awesome profession.

SPEAKER_02 7:48

I love it. So you kind of, you mean you kind of have been explaining it physical therapy versus occupational therapy. What's the difference there?

SPEAKER_01 7:56

Very different. Um, there's that like very like age-old saying that like physical therapy is gonna get you to like walk again, but occupational therapy is gonna make sure you're able to dance again. So physical therapy is

OT vs PT For EDS

SPEAKER_01 8:08

very um heavily like a biomedical approach. So strengthening range of motion, those types of things. Um, whereas occupational therapy is more about the doing, right? So, like, yeah, you can do those things, or like you can't do those things, or what that looks like. Occupational therapy is that application piece of it, also taking into account so many other things going on in the background, but very different. We complement each other really well. Like I say all the time, I could not do what my PTs do. They do it because I can't, and they're absolutely vital and amazing. But specifically when we talk about like HEDS, EDS connective tissue disorders, I find people are getting referred to physical therapy a lot when really they should be getting referred to both, or a lot of their problems are would really be addressed very well by an occupational therapist. They're either their provider or like they don't know that this is out here for them, you know.

SPEAKER_02 8:59

Yeah, and I want to take it kind of specifically into EDS, HEDS. You have a different experience with it because you live with the condition. How do you think that that helps a patient, like your patients?

SPEAKER_01 9:16

It helps like so much. Um because there's like frankly, like a lot of the healthcare community has no idea what HEDS is and like how it impacts people. And there's still like so many of these like myths around it. And I think it just helps my the people I work with know that like I intimately understand. You know what I mean? Like I fully get it. I was just talking to my OT students about this the other week. But even so much so down to the way that I approach things in my practice, like the policies that we have, the way that I do the coaching and the occupational therapy is very much built with this intimate understanding, right? Because I I have clients that come to me who've

Lived Experience In Practice

SPEAKER_01 9:56

been previously like essentially put back on the wait list for wherever they are because they missed sessions. Yeah, because they're waking up in 10 out of 10 pain and they're having all these awful flare-ups and nobody fully understands that. Yes. Um, but it really helps my my clients. I've had a lot of clients say things to me like they've never felt understood by a professional till they worked with me. They've never felt like they could open up and like unlike have somebody understand, or that they didn't have to do all of that opening up and having somebody understand because I just understood, right? Like there's a lot of like we're able to kind of skip them having to teach me a lot of things because I have the same thing, which tends to happen for people who don't, you know, know what the conditions are, what they look like, that type of thing. So vulnerability shows up quite a bit for these patients. Oh, yeah, definitely. Yeah, definitely, definitely, definitely, definitely.

SPEAKER_02 10:47

Do you feel like this has influenced your compassion towards your work more? Or have you I mean you've always had a big compassion for the work?

SPEAKER_01 10:57

I don't know, but I think it's just like a me thing. I've always been very heavily involved with like the pushing of my which a lot of people don't know this, but like the pushing of my profession further, right? And like very compassionate care. Like, for example, when I was in grad school the first time around, getting my master's, we put together, and we, I mean, like me and one of my mentors put together like a program working with survivors of domestic violence that had never been done before in our program. Um, so it's very much just like a me ethos. But I do, I do think it makes me overall like very, I mean, very compassionate. And I always say to people, I say this to my clients all the time, I very much lead from the space of being a person first and a disabled person first. Like the occupational therapist is like, you know, back there with like all the other things that I do. Um, but having that compassion and being able to see person to person and really getting to know my clients and really like being able to fit myself in their shoes and understanding being on both sides of that, you know, healthcare table does make a difference for sure.

SPEAKER_02 12:07

Because you're also dealing with people that have a lot of medical trauma. Like these people have been gaslit and totally dismissed and don't feel like they get the proper care. So for you to actually show up and be somebody that believes them, supports them, wants to see them thrive, we need so much more of that in this in the field. And I think it's incredible what you're doing. And as somebody, as a patient, as somebody who deals with it every day, like thank you for really being so passionate about it. And I it it's really touching.

SPEAKER_01 12:42

Thank you. Yeah, and it's something I because I know we talked about like I'm a professor as well. It's something that I talk to my occupational therapy students about all of the time.

SPEAKER_02 12:51

Okay, that was gonna be a question. Like, is it very focused on good? Okay, great.

SPEAKER_01 12:58

Yeah, in my classes, for sure, they know that. Um for sure, right? Uh, which I think they really benefit from having a disabled

Teaching With A Disability Lens

SPEAKER_01 13:05

professor who's not afraid to be like, hey, that's not cool. Let's talk about it. But very like my my students very much know that. And I say to them, like, I think sometimes, you know, just because like the nature of where we as occupational therapists are in like the and occupational therapy providers are in like the medical model, sometimes I think that they don't understand the gravity in which they're able to inflict trauma onto a patient. Yeah. Um, because I think sometimes it's very easy for occupational therapy providers to remove themselves from that thinking of like, oh, well, this is a nursing problem or this is a physician problem, like this isn't a me problem, and it's very much a you problem. Um, but that's something that we talk about all of the time, you know, in my classes, fortunately and unfortunately for them. Um, but it is it's conversations we have every single day in my classes for sure.

SPEAKER_02 13:56

How do you balance the clients and the students? What is your time like being disabled and having to manage your energy and fatigue and everything that comes along with chronic illness, and then working multiple different jobs and careers?

SPEAKER_01 14:13

Yeah, really good question. So that's actually why I ended up getting my doctorate was because I love treating patients. I love it. It's like so cool and fun for me. Um, I can't over-explain how much I love it, but I love it. Um, and it became very evident to me that I was not gonna be able to do this for much longer. So I made the decision to go back to get my doctorate so I could research research, sorry, and teach like full-time as my main situation. Uh, finished my doctorate back in August. So I am working on becoming full-time in academia, but I do do my own private practice stuff, which is why I set up my private practice because it's very much a space where I'm able to still be client-facing, right? And work with my clients in a sp in a way that works for both of us, right? Like me and the client. But right now, my breakdown is pretty, I would say like 75% teaching research, and then like 25% client-facing. I need to put together more groups for the coming year and stuff like that. Um, but I'm hoping to be full-time in academia soon. But even though I'm gonna be like full-time in academia, um, I'm still going to have space for clients. I don't think I'll ever stop treating. I don't think I'll ever stop doing things the way that I do and doing things the way that I do. Uh, because I just love both so much.

SPEAKER_02 15:36

What do you think is the hardest part about being a provider and a patient at the same time?

SPEAKER_01 15:42

Oh my God. Um, really good question. Really, really good question. You can think about it. I think just the understanding. I'm trying not to get all my sitbox right now, but the understanding intimately of the medical model from both sides. I think that's

Balancing Academia And Client Care

SPEAKER_01 16:00

the hardest part. And like consistently balancing that. It's it's a very heavy balance. But I tend to always just lean towards my clients more so. I I will protect my the clients, I will protect the patients 10 times out of 10 times, in my opinion. But like intimately understanding that power dynamic and um trying to stay tactful in some of these like situations as they arise.

SPEAKER_02 16:32

Well, it's a very unique position that you're in to understand both sides. Yeah, that's not yeah, quote unquote normal.

SPEAKER_01 16:40

No, and that's something I talk about like even on my social media. Like, I don't think people are fully aware of this because I don't talk about it often, but I'm very aware of occupying both of those spaces, right? And like the gravity still, and like walking on that knife's edge in both of these spaces. Like, that's something I'm very aware of. That's something I'm very conscious of. Um, and that's something that I think about all the time, honestly.

SPEAKER_02 17:07

For the emotional side of the work, what are the challenges emotionally that come with you? Because I'm sure it's a lot. I mean, you're already dealing with your own emotions around being living in a disabled body and then experiencing other people with the same thing.

SPEAKER_01 17:27

Yeah, I was talking to one of my um mentors about this actually. We had a really nice conversation. I'm so fortunate and lucky that I have like the genuinely the best mentors in my corner who've always been championing me. Uh, but we we talk about this a lot because it it does take an emotional toll. And I talked to my partner about this too, but like it definitely does take an emotional toll. But I've just gotten really good at taking care of myself, you know, and like understanding that I can't show up for other people if I'm not showing up for myself. Uh, but it is hard, you know, and like we I feel like when you're somebody who like I've always naturally just been so many people open up to, but like, especially like you mentioned, like I'm sometimes the first healthcare professional that people have felt have listened to them. I hear so many things, like so many stories, even from my students, right? Like I hear just so many stories and like so much of this, like, uh, what did my friend Kirby call it? It's like it's not like secondary trauma, but it's like he like hearing from people's trauma can also be a traumatic experience. Yes. So we've really like we've had a lot of conversations about this,

Provider And Patient Power Dynamics

SPEAKER_01 18:36

just with mentors, with family, with friends, with my therapist. I'm obsessed with my therapist, she's amazing. Um, but it's it's very much like a conscious thing that I deal with a lot, honestly. Um, but I think every provider in a healthcare profession deals with this too, you know. But yeah, it's definitely something that I am very conscious of, right? So I really take care of myself first um before I'm able to take care of other people, honestly.

SPEAKER_02 19:04

I mean, and if you don't have your health first, you're not gonna be able to do anything else. So it is really the most important thing.

SPEAKER_00 19:11

Yeah, exactly.

SPEAKER_02 19:12

You have your own occupational therapist.

SPEAKER_01 19:16

Really good question. Um, I'm smart enough to know that I need my own OT sometimes, but I do, but I do OT myself a lot. Like I talk to somebody um, or I've talked to multiple people actually about this, but like I would be so much worse off if I was not an occupational therapist, right? Because I changed my entire life. Um, but I do. I have my own OT. I just worked with one through the Office of Vocational Rehab for like um helping me get full-time work. I've worked with OT specifically for hand stuff. If I'm really, really, really struggling for it, um, and I say this with all the love of my heart, but I never want to overwhelm her. My best friend is also an occupational therapist. So if I'm really like hitting a wall, yeah, I'm like Kimberly, help a girl out. And um, but yeah, I'm smart enough to know that like I do need the um opinions of other therapists as well, just because we all learn from each other um so much. And in those relationships with other occupational therapy providers, um, I've learned a lot and they've learned a lot. Yeah, you know, I think I should take that pressure off myself. Like I love not having to think about it professionally.

SPEAKER_02 20:23

Oh, 100%, especially if it's what you do all the time, constantly. All the time, yeah. Okay, I think advocacy is something that's super important that I mean you touch on quite a bit. And I think one of the big ways that you do advocate for us is teaching students how to approach bodies like us and disabled bodies. Have you witnessed or do you have an example of the system like first-handedly failing one of your patients or somebody all every single patient?

SPEAKER_01 20:55

Um, okay, okay. Well, that says a lot. Um, yeah, oh yeah, all yeah, all the time. All of the time. I always say this to people and I always joke with people about this. But when I was in school the first time around, they said to us, you know, like you're gonna be advocating every single day. And I was like, that's awesome. Probably

Emotional Toll And Boundaries

SPEAKER_01 21:12

not though, right? Like, even if I worked in acute care, probably not. That's untrue. I advocate all the time, probably like I've worked on my advocacy skills a lot, um, because I am someone who does get so annoyed in the face of injustice and frankly heated and a little pissed off. But I advocate every single day.

SPEAKER_02 21:33

That's the energy we need, though.

SPEAKER_01 21:35

It's a it's like it's to the point where like I I always joke, I have been in therapy for four years to learn to not do that um and to not show up as one side of my family, but I just continually do it. Um, but especially for my patients, I will advocate for them till I'm blue in the face. For my students, they know that as well. Um, until I'm blue in the face for them. Because yeah, the systems are failing us and disabled people everywhere. Left and right. Literally left and right. Um, I advocate to my national, you know, organization, which a lot of people don't know because I don't usually share that on like social media stuff. Um, but I am just, yeah, it's all the time, nonstop.

SPEAKER_02 22:16

Starting my journey, especially, I was like, oh, doctors are right. They know what they're talking about. I will just listen to them, whatever. I've quickly learned that that is just simply not the case. In your experience and in the profession that you're in, what are some red flags we should be looking for in providers? Do you think? That's like one of the one of the biggest.

SPEAKER_01 22:37

That's a really good question. I think one of the red flags that I have come to look at is a provider who thinks they know it all, right? Like, for example, I've worked with providers who are quite literally in Philadelphia, like at the top of the, you know, medical, like I'm talking like teaching at prestigious healthcare institutions. Like award-winning, award-winning, department leading. Like that's just who I'm fortunate enough to get some care for. And I've in working with them too, I've had providers who are award-winning at the top who genuinely want to learn more and care. And I've had ones who think that they know it all and they don't. And I'm not afraid to be like, this isn't working. Um, but that's something is like this inability, this this either inability or want like like not wanting. There's definitely a better word for that, but not today. Um not wanting to be so real. Literally, like it's just that um, like not wanting to learn, not wanting to like take a quick Google search. Like it literally takes a Google search. My cardiologist called me once at 9 p.m. and was like, I looked into this and I was wrong. Let's do something. Yeah. Um, so like that inability or like unlike wanting to learn is something that is uh to look out for for sure.

SPEAKER_02 24:00

Definitely. I think I've well, I've experienced that firsthand too. And I would a hundred percent agree with that red flag, like waving that.

SPEAKER_01 24:09

Yeah. It's it's a it's a big one. And I do think um, too, on the flip side as well, I always tell people like

Using OT For Herself

SPEAKER_01 24:16

sometimes you might have to work a little to build a relationship with a provider. Like I worked very hard to build one with my neurologist, and now he's in my corner, no matter what the problem is. And it did take like two, three times, right? So, like, but like also knowing when to call it quits, because I had another provider who I was on my third time, and I was just like, this is not working. So, like being able to know when to move on, but also still like understanding that like maybe it does take more than one session if you're able to afford it. But I know there's so many intersecting reasons as to why people can't do that, you know. Um intimately, no. But yeah, that's a big red flag, I think, for me.

SPEAKER_02 24:56

Well, then so the systematic barriers, what do you think are the biggest systematic barriers for patients accessing proper care, especially in the OT?

SPEAKER_01 25:07

Literally everything and anything. Um literally, like literally everything, like racism and healthcare, misogyny and healthcare, um, homophobia and healthcare, ableism in healthcare, healthcare is extremely ableist, um, down to where you live, down to if you're able to use insurance or not, down to if your ability to understand and like process stuff, right? Or like even just like scheduling, you know, like it seems like such a silly, frivolous thing. But my my private practice has a texting number for that reason because like I know people, there are people who hate the phone and like can't use the phone. So, like, or like a phone call. So, like, why would I make them do that? Um, but literally everything is a barrier and it's set up in a way where like it is so hard to access healthcare here for on multiple levels, and it's only gonna get worse. Yeah, it's only gonna get worse. But even like occupational therapy, like I talk to providers all

Systemic Failures And Daily Advocacy

SPEAKER_01 26:08

the time because we think that we don't have this problem. I'm like, yeah, we have this problem. This is a huge problem, actually, that we're having, but it is, it's there's barriers to care. Even like, you know, we started this by talking about what is what is occupational therapy, like this unknowing, right? It's not people's fault, but like people not knowing what we do is in self a barrier to care, you know, like they don't know, so they're not accessing us, doctors not knowing, physicians do not know what we do all the time.

SPEAKER_02 26:35

That's that's I can't wrap my head around that.

SPEAKER_01 26:38

That's crazy to me. Primary care physicians have zero idea what I do, like zero idea what we do, and then they're not referring, which is in in itself like a barrier to care, just oh the the entire thing. It the end it's everywhere, the whole thing. It's everything is a barrier. Throw the entire thing away. Um, yeah, the whole thing is a barrier for sure.

SPEAKER_02 26:57

I have some questions on advocac advocacy written down because I think that that's really important. Um, okay, the ripple effect of advocacy, how supporting one patient um and training one professional can impact the larger chronic illness community as a whole.

SPEAKER_01 27:12

Yeah, this is something that I'm very um passionate about because I don't think people online know this about me, but as a professor, um, it was very much a calculated move on my part to get into academia. Because not only am I in one day reaching one patient, I'm reaching 70 occupational therapy students. Like that's huge, you know, but it very much is a ripple effect. Every single student that comes across my classrooms learns about a different way of viewing occupational therapy practice, which is very much from a disability justice-oriented lens, um, which we need more of. They learn about like what it is being a patient and a provider, right? Like they, I was talking to one of my um good friends. Her name is Dr. Kristen Mitchell. I'm she's amazing, one of the most amazing people I've ever met, um, honestly, in my journey as an occupational therapist. But we were talking about how important it is even for students to just see a disabled professional teaching them is huge, right? Because it it makes some of them very uncomfortable and it shifts a lot of, you know, lenses. And we've talked about how like it does cause a ripple effect. But I do feel like with advocacy as well, you know, like we always talk about in advocacy spaces, the idea of like it's definitely a marathon, not a sprint, but also being calculated with which path am I running has been very important for me. And knowing that academia, specifically where I am and what I am doing, provides such a huge piece for advocacy work, has been where I've put my efforts. You know, like I would love, I say to all people all the time, I would love to fight every fight for everybody. I'm also disabled, so I need to make sure I'm very calculated in where I am advocating and how I'm doing this um this work for sure.

SPEAKER_02 29:06

Yeah, just kind of a quick question. Have you always been consistently in a job, or was there a time where you couldn't work at all?

SPEAKER_01 29:15

Really good, really, really good question. I was consistently

Spotting Red Flags In Providers

SPEAKER_01 29:22

air quotes, working up until two years ago when I won a research grant to be able to take off of work and just research and just focus on academia. Oh, yeah. I didn't know that was a thing. Yeah, yeah, yeah, yeah. So I won, I literally won a grant um for being a disabled researcher. Slay Queen. Slay. It was it was amazing though. Um, and that's what I'm saying. Like my mentors who are so like honestly, I don't know what I would do without them. Um, they came to me and were like, We want to apply you for this. What do you think? And it was like, I remember I think literally crying in our Zoom meeting, or I didn't cry in the Zoom meeting, I cried as soon as I got off because it was like the first time I was able to take a step back and like not be putting my body through the absolute ringer because Philly's not an accessible city. Uh, the work I was doing was not accessible at all. So up until about two years ago, uh, I think it was two years ago at this point. I don't know, I'm really bad with dates. Um, I had been working, air quotes, but um not super consistently. At one point I was working, like, you know, the usual 40, 50, 60 hours a week. And I was down to before that, like maybe five. And I was it was bad. It was really rough. Um, yeah. I was talking my with my partner recently because he uh met me around that time in like that transition, and it never dawned on me how bad it was up until like now, right? But it it was not good for my body. I couldn't do anything else, literally anything else. I was I was working and I was coming home and I was destroyed. And then I was working and then I was coming home and I was destroyed. So my quality of life has gotten so much better. But that was definitely like a calculated move on all of our parts was to get me into a space where I don't have to destroy my body every single day, which is in and of itself a huge privilege. What got you into that space? Um, not having to destroy my body every single day.

SPEAKER_02 31:17

Okay. So it was like you needed a break

Structural Barriers To Accessing OT

SPEAKER_02 31:20

in order to like build back up to a point where you can work now.

SPEAKER_01 31:25

No, it was definitely that that shift. Like I knew I want to be clinical. So I made this, I really wanted to get into research on academia because like I'm able to better accommodate myself in there. So like that shift from being super clinical all the time, rolling around with kids, you know, like in my car all hours of the day, all over Philadelphia, um, into just research, being able to work from home, being able to, you know, do what I need to do really helped.

SPEAKER_02 31:54

Really for sure. How can the healthcare system better support patients and providers? Like I obviously there's so many that you that's like a broad question. But it top of your head, like one of the most important, do you think?

SPEAKER_01 32:10

One of the most important way that we can help providers. I think for disabled providers, stop treating us like we're patients all the time. Um yeah, like when I am talking with you at a meeting, I am your equal, not less or then. Really important. But I do think just in general, like we really have to get comfortable with chronic conditions. That's something I talk about in occupational therapy practice all the time because the vast majority are not comfortable with that. Um, but really getting comfortable with that and like listening and uplifting disabled people and knowing when you need to learn more, which in for healthcare providers is quite literally all of the time with disability like justice principles, I think is a huge thing. That should be embedded in every single curriculum. Every single curriculum should have a disability rights history class for sure.

SPEAKER_02 33:10

And I think that that's uh hopefully starting to happen, but that's a very small way that you can just do something because really not a lot of disability representation in the medical uh in the healthcare field at all.

SPEAKER_01 33:27

No, and it's very much like if there is, it's very much in the idea of like this physician's disabled, this is so functional. And it's like, no, they're just doing their job, right? And like I know you've spent so long trying to bar them from doing their job. Um, but they're yeah, the representation's very um low. Healthcare in general is extremely ableist as well. And I don't think that healthcare in general has taken that look in the mirror and gone, we're extremely ableist. I hope it happens at some point, but I was gonna say, do you have hope that that could change? I think in occupational therapy practice, there's enough of us screaming and yelling and fighting for it that maybe like I think

Ripple Effects Of Advocacy In Academia

SPEAKER_01 34:08

hope is what's gonna drive us. So, yeah, absolutely. Um, I just hope that I'm not 80 years old by the time that happens. I know. I know, you know, um, I I really do, but I do think it there's enough of us out here now, literally allowed out of the house now, uh, to be able to be in these spaces and forcing it almost. I also do think though, I say all the time, occupational therapy is gonna have to adapt to survive. I think all these healthcare professionals are gonna have to, all these healthcare professions are gonna have to adapt to survive. So the more you go kicking and screaming into it, the just the longer it's gonna take. But I do think it's I think it's it's coming, hopefully.

SPEAKER_02 34:49

Um, so OT is obviously resources, support strategies, tools. What what are specifically when it comes to EDS? What are some of the biggest tips you have for that or the biggest strategies and tools that people can use?

SPEAKER_01 35:05

Um, environmental modification. One, like modify your environment. I think there's also this like commonly held myth that you need to one have a diagnosis or two wait for someone to come in to help you do these things. You do not like make your life easier. And usually what I tell people to do, or what I work on with my clients, is how can we make your life even just like 3% easier? Or how can we change the environment to facilitate you being able to do what you need to do? Whether that is the way you arrange things, like the way that you, you know, set up even just the lighting in your house, like all these different things go into your ability to do the things that you want to do successfully, whatever that looks like to you.

SPEAKER_02 35:52

And it's very customizable, obviously.

SPEAKER_01 35:54

Very, very customizable. Um, I also do, and this is also just like my ethos in the way that I approach things, is I also talk to clients about the idea that like there's no right or wrong way to do something as long as you're safe. And that's something I tell my OT students as well. Meaning, like, even if it like looks weird, quote unquote, or like you take longer to do it, like that doesn't matter. As long as you're doing it, I genuinely don't care what it looks like. Um, and as long as you're safe doing it, it doesn't matter what it looks like. So that's a really big thing for people, too.

Shifting To Research For Accessibility

SPEAKER_01 36:28

Cause there's there's so many clients I work with and they're like, I really think this would work for me, but like it might be weird if someone comes in the house and sees X, Y, Z, and I'm like, who cares? It's your house. Like, yeah, just do what you need to do in order to make your life um easier. That's a really important thing for people.

SPEAKER_02 36:45

Well, I think that's a big barrier too for a lot of chronically ill and disabled, is the perception of other people's judgment or whatever on your adaptive tools. And that's something I'm working through every single goddamn day, too. Oh yeah. Um, 100%. I'm you get it. Yes. When I was in OT, one of the biggest things I took away from it was just like the awareness of my body. Like I really got a better awareness of it. Like, for instance, when I carry in a bag of groceries, like I would just like pick them up and carry them. I didn't like closer to your body the better. That was like a big thing for me and like emptying the trash, like make sure you're not like I don't know. It was it was a very good tool just to put the awareness of where my limbs are when it comes to like the limb part of obviously there's every single part of your body is affected by EDS, but that specific part.

SPEAKER_01 37:35

Oh, yeah, yeah. And I tell clients all the time, like, general rules of thumb are also things like big muscles over small muscles. So I like that's very much what you're talking about, is instead of using like these little teeny tiny arm muscles, like bringing these things into the center of your body lets you use like your trunk muscles and like your back muscles, leg muscles, and all these muscles that like we should be offloading stuff onto. Um, very, very helpful for people with EDS. Um, is this idea of like when in doubt, try to use a larger muscle group than these small ones?

SPEAKER_02 38:06

That was a huge one for me. If you could design a dream program, would it be?

SPEAKER_01 38:14

I probably is such a hard question, but no, it's not because I need a kiss for this. Um, this is like a passion area of mine, is like program development. And yeah, in the occupational therapy world, like program development is my like my bread and butter, my whatever, whatever insert your favorite comfort food ever. Um, I love talking about shit like this. So it would have to be completely customizable. One, um, I literally have so many ideas in my head and I'm working on designing a program for us, and or like some type of situation. But I think there needs to be a combination between quality education. That's something that I've heard from a lot of my EDS, uh my EDSers or like my clients, and empowerment as well, because the only person that's going to be able to help you 24 hours a day is you, right? Or like, or like your um like partner, right? Like your support team. But like that's really pioneered by you. Um and I think that it needs to have both of these things. Obviously, like there'd be things like strengthening, but I think those things exist, but I don't see much on like education

What Systems Must Change

SPEAKER_01 39:16

and also like how do you apply this in a way that like essentially enables you to do so confidently. Um, that's why I love coaching. And that's why I do coaching because it's very much that second half of the piece where it's very much like, cool, you know, like given all that you've learned, how do you apply this in your life in a way that makes sense for you, right? That isn't me giving you 25 different things that are never gonna work because I'm not you and I don't live your life. Um, but that is like my ideal, my ideal vision and program, specifically for people with EDS. I think that would be brilliant.

SPEAKER_02 39:49

What I love about you is how passionate you are. Like a lot of people sometimes go into careers just for a paycheck, and you're like, no, there's a reason behind this, there's a purpose behind this, and that is so fucking inspirational. And I think I wasn't sure we were able to curse on here. Thank you. Oh, dude, I okay, thank God. Because I worst, I have the worst mouth and I try to filter as much as I can, but okay, yeah, no, I okay, perfect.

SPEAKER_01 40:16

Yeah, no, let it out. It's like I just like think about these things and I like love these things, and I I love what I do, I love who I I do things with. Even with coaching, I always joke. My my bank account would be so much happier if I was just doing OT anymore, right? Like, but I'm so passionate about people being empowered to take back that control, right? That like is taken and stripped from them in a way that like works for them, where they feel confident that it works for them uh is super fun for me. You to your core want to help people.

SPEAKER_02 40:47

And we lack a lot of that these days.

SPEAKER_01 40:49

Yeah. And like empower them. Like, I don't necessarily like want to help them as in like, come on, like you can do it. Like, I genuinely want to like give you that boost up so like you're doing it and I can just like see you shine. And I think that that's um, that's what's always fun for me is it's never about like I never leave my sessions like oh pat on the back, I did a good job today. I'm like, that's so fucking cool. They were able to do this thing, right? Or like they they set this goal and they did it. Like that's what is so cool for me, and like across the board, even with my students,

Practical OT Strategies For EDS

SPEAKER_01 41:20

right? Like, I leave my teaching and I'm like, they got it. And like that's the cool thing is watching them learn and them become their own providers and them change that. I love watching that. I love just empowering people. I think that's the most exciting thing. You're putting a fire under their ass to a hundred percent. Yeah, I I will light it up and like cheer for you as like you're going.

SPEAKER_02 41:44

Cause that's my favorite part about it. I love that so damn much. What is a I know, oh god, there's like so many, but for people that have EDS and they're listening, what is like one DIY low cost adaption you think that they can make that would that I mean has helped you personally too?

SPEAKER_01 42:04

Oh, really good. Oh, sit the hell down. Sit down, sit down, whatever you're doing, sit down. Like literally was like, what can I do? Sit down. You can sit down while you brush your teeth, you can sit down while you go through your mail. You can sit down while you like sit the hell down, please, for the love of all things holy unholy. Um please, God. Um, that's a big one that most people don't realize. That you you literally can put your makeup on while you're sitting down, you can do your hair while you're sitting down, you can chop your vegetables while you're sitting down. Sit the hell down, please sit down. Oh, what's another good one for them? Um, use what you can to like support yourself physically, support yourself. Like um, a big thing I I do for me, um, something that I absolutely love is like I'm big into knitting right now, right? So, like instead of sitting here like how I am with you, with like nothing, like free flow and arms underneath, like, you know, in just outer space, put your pillows underneath of them, support yourself, give your muscles a break, like a genuine break. Don't be afraid to use those braces, especially overnight. Oh, yeah. Use them. Give your muscles a break, give your body a break, and like getting comfortable with that idea, right? Like, it's okay to take a break. You you probably need to take a break. You actually probably need to take more breaks than you're taking, even if you think you're doing a good job. Um, but those are all like super easy things you can do now. Look at like the heaviest piece of equipment in your home, whatever that is for people. Like, I always bring up in my OT classes, like the the KitchenAid mixer. I don't know if you have one. Uh a lot of people in my life have them. Why the hell are you putting that where you have to lift it up every single time? Why? What is the point of that? There's no leave it on the damn counter. Leave it on the damn counter. Like, don't like it's like things like that where it's like think about like the most annoying part of whatever you're doing, like the part that you dread, right? And then think about like what could you do to make that even just five percent easier? Um, and it it's usually low cost, a lot. People think that like these like accommodations and adaptations need to be like super high cost for it to be effective. Absolutely not. Just like get creative with it. But yeah, sit down, please. Sit the hell down. Sit the hell down.

SPEAKER_02 44:12

Do everything sitting for just a week and see how you feel. Like you're gonna be okay. Like I do something sitting down, but for instance, yeah, I could brush my teeth sitting down. Could do that.

SPEAKER_01 44:23

I literally like just sit on like the put the toilet seat down if you want to brush it up, whatever. Floats your boat and like sit down and try it. Like, cause it is. It's like these little, like, these little like moments, or even if it's just like five percent extra that you're like sitting down throughout the day, like that's gonna give you a lot more energy to do the things that you want to do, right? Not just necessarily the things you have to do.

SPEAKER_02 44:42

Yeah, these are such little tools that you just don't even think about. And that's why OT is such a powerful thing because you learn all of this stuff. And I think it's really important for every EDS patient and other people that need accessibility and adaptations and stuff like that. Definitely, definitely. Yeah, because we we've really touched on like growing the awareness and the advocacy, and that was something that I really wanted to talk about as far as getting people

Low Cost Adaptations That Help

SPEAKER_02 45:06

really educated about conditions.

SPEAKER_01 45:10

That's the that's like the important thing. And I always say, oh, something I forgot to say earlier about that is like um get yourself into spaces where you can pass the mic. That's like a big thing for me, right? And like that, people don't know. Like I always said, like getting into academia is very calculated for me, right? Like that's a goal. But like in multiple aspects, right? Like, not only like me being in there, but also like when I am the head instructor, I'm able to pass that mic to whoever I damn well please, right? So, like I always say this to people. I am consistently looking, like, okay, who can I have in to my class to give a guest lecture that like one people need to hear from that maybe they're not hearing from, right? Like the people that we've barred, you know, but pass that damn mic to to everybody who needs it. It's it's necessary for sure. And that's a calculated move.

SPEAKER_02 46:01

When you have high flare days and migraines, how do you get yourself to work?

SPEAKER_01 46:07

Good question.

SPEAKER_02 46:08

Really poorly.

SPEAKER_01 46:10

Yeah, I was like, because that's really poorly. Um it's a talent. It's part of I'm actually so, so, so excited. My like my wheelchair should be here tomorrow. Barring a meteor hits Philadelphia. Okay. Like so that physically getting myself to work, like that'll be that'll be taken. That'll be done. But very much I work very strange hours. I also am privileged enough to know, like, to have a schedule that I do where like I work like a couple hours, like four hours, I would say, like in front of students and like the mornings usually. Then I have like a little bit of a break, and then I work like tonight I'll be working like eight to nine p.m. Right. So like I have this space. Um, but on really bad flare days, it's really hard. That being said, I am also a big fan and proponent of the idea of like, you know, talk the talk, but also walk the walk. So like all my students know I'm disabled, right? They all know that, you know, Dr. Janine might lecture sitting down, right? Like, I'm also usually very like animated in my lectures. Like they know that there are days that's not gonna happen. They know that if it's a migraine day, I just say it like, you know, I'm trying my best. Google it, right? Literally, put it in the Google. Um, if I write like a bad, like a bad spelling on the on the board, like just roll with it, you know. Um, if you can fill in as I'm talking, go with it. But like I think that that's important for two different reasons. One, it keeps me from having this like this like terror of like not coming off. And it's definitely just ableism rooted, of like not like showing up, right, in like the best way, or like looking like I can't do my job. I can totally do my job. But it also like I'm well aware I got disabled students, right? And like if they hear that like Dr. Janine always has the lights off in her class, they might turn the lights off in their meetings. And like that's such a small, silly, frivolous thing, but it makes a really big difference. Um, but I always am very like open and honest in like

Working Through Flares And Modeling Accommodations

SPEAKER_01 48:08

accommodations for myself. Like, I I even just start every single class day with like keeping I keep overhead lights off because that will trigger my migraines. Yeah, but like I start every single class being like, cool, if we leave the lights off today, it'll trigger a migraine, right? If I have a student who's like, no, I need them on, then I just wear sunglasses. Like, you know, I'm very like, I'm not afraid of getting in front of my students and being like, today's a really high pain day. We're gonna try our best. Like we're all in it together. But that's very much so how I set up my classrooms. In my classroom, it is not me versus you, it's all of us together. This is our learning environment, this is our house, like that type of thing. We are one here. We are one here. Like, I want you to succeed, which means that I'm in there with you, type of a situation. And in doing so and creating that environment, we like give each other a break when we need to, which is great. But yeah, there's there's days if I'm in a really bad flare day, like people know, like I might not be on my email right away. You know, like if I write a grant, it might make no sense. If I am like writing my manuscript, it might make zero sense. But we'll go back and edit it. But like that's very much also like the type of people I keep around me, right? Where it's like the the groups that I'm a part of and like the research teams I'm a part of, that's just how we are with each other. We're very much like understanding that someone might be writing something at 3 a.m., someone might be doing something at, you know, 9 p.m. Someone might be doing something, you know, whenever it works for them, um, which is really important.

SPEAKER_02 49:35

Really important. Oh, it's so important that you're getting up there and being just completely real with your body, your conditions. Has it always been that way? Because okay, that's okay. I've called you this already, but a goddamn inspiration because we I think well, uh in my personal experience, it's been really hard for me to accept the fact and that I need accommodations, and sometimes I don't do them when I need them. So that's really I just I love seeing people do it and like working up my confidence to do it myself.

SPEAKER_01 50:11

Yeah, I'm a very real, honest, blunt person in general. And like, you know, like everybody else, I've gone through like the internalized ableism thing. Yeah, like and like I still go through it, right? Like people tend to think, especially online, they tend to think like, oh, she has it together. She's an OT and she's out here like disabled and visibly disabled and running around or hobbling around and she's great. Like, no, I still have days. Like I went to our conference this last year and I was like crying the night before because I'm a visibly disabled practitioner and like that's a lot. And like I knew it was gonna be a lot on my body, but like I'm very fortunate that I have people around me who, when I am feeling shitty about myself, pick me back up, right? And like people who very much like help me if I am having one of these, I call them a moment, right? If I'm having a moment where I'm like, I'm not good enough, and like everyone was right, you know, like the person at my accommodations office who told me I should rethink being in this program was correct, like to be like, absolutely the fuck not. We're not doing this, and like that's really helpful, but like also like I do a little bit of like fake it till you make it. Um, but especially with my students, right? Because like I don't want them seeing me like uh really having like a pity party for me, you know, because I might be the only disabled professor, like who they know is disabled that they see. And I want them to also be like, no, Dr. R asks for the lights off, so I will too. Like Dr. R just tells me that, like, hep, this weekend ended up going awry. So like we don't have this back right away. Um, so I will too. And that's something that I'm very like passionate about is like making sure that no, they know, like you can do whatever the hell you want to do. It's gonna be hard, right? We got a lot of systemic barriers

Owning Visibility And Community Support

SPEAKER_01 52:00

against us and a lot of people pushing back. But like, if like I had the seat pulled up for me, so I'm gonna pull it up for you, and we're all just gonna sit here and we're gonna do what we need to do. Um, is something I'm really passionate about.

SPEAKER_02 52:12

Yeah. I think you touched on that perfectly about having the support group around you that really lift you up and are really in your corner a hundred percent. Yeah, all the difference because when the people that aren't that it that fucks you up.

SPEAKER_01 52:25

Oh, for sure. Yeah, and I've I've been in spaces where I am like not valued, right? But um being where I am today, I can confidently say like I have people around me who are in my corner, which is amazing. Yeah.

SPEAKER_02 52:42

And it not necessarily it took some time to get there, at least in my opinion. Oh, for sure. Yeah, it takes time to you know, really build up the people that you completely trust.

SPEAKER_01 52:53

For sure. I tell my students all the time, I'm like, your frontal load will click on and you'll be like, yeah, you'll be fine. How old are your students? I teach a wide, wide variety of students. Um, I teach like at an undergrad program. So I have some as young as like 18, right? And then I have like I've like some older students coming back. Like there's a couple of different programs I'm in. Like one is like directly into a doctorate out like right after undergrad. And then I have like a like weekend program, which is so nice. And like I love that program. Um, but then we get people like this is their second, third career. So like I have students who are like 50, 60, I have students who are 18. We have like a wide variety, which is so fun. I love it. Um, I learned just as much from them as they learn from me, but it's it's really cool. But some of my younger students, I'm like, just take a deep breath. Like, you'll trust me, you'll get to 30 and you'll be like, okay. You'll get it. It'll click. You'll be like, okay. They'll be like, oh right, yeah.

SPEAKER_02 53:49

Yep.

unknown 53:50

Right.

SPEAKER_02 53:50

And I mean, a lot of these younger people too. I mean, when I was 18, I didn't know I had EDS. So, like, potentially some of these people could develop conditions that they're this class really they remember and resonate. And that's gonna be very good as far as like the change and the hope of for sure. The medical field.

SPEAKER_01 54:08

Yeah, even just saying I'm Dr. Janine and I have Eller Sandler syndrome, like they the amount of students who come up to me and are like, Well, I was just diagnosed, or like I hear from them like uh a little bit later, or like they had never heard of it before, now they do, is like it's amazing. Yeah, so rewarding. Yeah, it's amazing.

SPEAKER_02 54:27

Okay, well, so you're an OT, a coach, a professor, you're disabled, but you're also a content creator. You put content online and you share. I do about all those things. Where can we find you?

SPEAKER_01 54:40

You can find me on I think most or all social media platforms at it's Janine Liz, J N I N E, and then L-I-Z. I try to be consistent. Sometimes I go through where I just don't feel like doing it, but to be so blunt and honest. Um, but that's usually where you can find me. I am on Instagram, I am on TikTok for sure. And then just around that, yeah.

Students, Representation, And Hope

SPEAKER_01 55:04

Content is so hard. It people think it's so easy. It's like no, it's you know, I was talking to someone recently and they were like, Oh, can you do like an ergonomics of knitting? And I was like, No, I just want knitting to be just for me. Like, I will, you know, yeah, I already have ideas, but like, yeah, it's so hard. I also never thought I would do this. I'm a very private person in general, so I never thought that I would be on social media.

SPEAKER_02 55:30

Well, I'm so glad that you are because that's how I found you. And you are so, so needed in these spaces, and your voice and your fire and everything about you is gonna go a long way. And I can't wait to to watch your journey more.

SPEAKER_01 55:45

Oh, I appreciate it. Yeah, thank you so much for having me. This was so fun. I really appreciate it. Oh, I'm so glad that you wanted to come on and chat. Literally anytime. Oh done. Any anytime. Email me.