Studying while ill and working with a visible health condition (with Kaedee Abel)

[00:00:05] Bronwyn: Hey, mental workers, you're listening to the Mental Work podcast, your companion to early career psychology. I'm your host, Dr. Bronwyn Milkins, and today we are bringing to you a fantastic listener

[00:00:16] They're going to be talking to us about their journey to registration while being diagnosed with complex chronic health conditions and navigating therapy while having visible aids. This is a really exciting topic because I don't think many people have shared the unique views that our guest is going to share today. And I think they're really important for people to hear as well as the impact of what health conditions on your identity as a psychologist and how you navigate visible aids with clients. Here to tell us more about their story is Kaedee Abel. Hi, Kaedee.

[00:00:48] Kaedee: Hi Bronwyn.

[00:00:49] Bronwyn: It's so lovely to have you on the podcast. Thank you for coming on.

[00:00:52] Kaedee: No worries. It's great to be on actually.

[00:00:56] Bronwyn: Yeah. And so Kaedee, could you please tell us who you are and what your non psychology passion is?

[00:01:02] Kaedee: So I am a registered psychologist. I've been working in the field for, I think now seven years, long journey to registration, but I'm assuming we'll get there in the program.

[00:01:16] My non psychology interest... I would say, Oh, I'm an ADHD'er, so I have to say my, probably my two most recent hyperfixations are building Lego. And, drawing at the moment.

[00:01:32] Bronwyn: Nice. What have you built recently with the Lego?

[00:01:35] Kaedee: Blanking on what my most recent build is. I know recently I did the Little Mermaid clamshell and that was a lot of fun.

[00:01:42] Bronwyn: That sounds cool.

[00:01:43] Kaedee: Yeah, I know. I built a, um, a Japanese temple as well, was one of my latest. Yeah.

[00:01:49] Bronwyn: Gosh. Intense. Nice work. That's so cool.

[00:01:52] And so Kaedee, I wanted you to get started with this listener story by talking about a photo that you sent me because I ask all the guests to send me a photo so that I can use it in socials later. And I love this particular photo you have sent me. I'm looking at it right now and I'll just describe it to listeners.

[00:02:09] So it's Kaedee with what looks like an iced coffee. They've got the graduation hat on, they've got the graduation gown on, and they've kind of got their arms up in the air, and I don't know how to describe your expression. Like for me, it's, uh, thank fuck I've graduated expression. but It's just a celebratory kind of pose, maybe.

[00:02:36] Could you just tell me a bit about this picture?

[00:02:38] Kaedee: Yeah, so that was definitely taken on my graduation day and I think everyone around me was like, finally, as well. My friend, um, wanted me to throw my arms up in my air and emulate a Kermit meme where he's just kind of looking a bit, um, deranged.

[00:02:57] Bronwyn: Deranged is the look, yes.

[00:03:00] Kaedee: Yeah, which was probably how I felt about the fact that I finally got to graduation day.

[00:03:05] Bronwyn: Yes. And a huge congratulations to graduation day. And so coming to this picture, you mentioned to me that it took six years to graduate. So maybe you can take us back to the start? What prompted you to study psychology?

[00:03:20] Kaedee: I came to psychology in a little bit of, I guess, a roundabout way. I attempted education first, um, secondary education and then primary education, um, at uni and went, this is not for me. I really wanted to work with people I had and lived experience of mental health challenges and I knew that that's particularly where I wanted to assist people.

[00:03:49] In my primary ed, like one semester that I did, I did a subject on sociology, loved it. And then found psychology.

[00:03:59] Bronwyn: Awesome. And so you enrolled after your bachelor's degree in the Master of Psychology, the counselling one. What prompted you to go towards counselling psychology in particular?

[00:04:10] Kaedee: So when I was looking at the programs, I was also looking at what the philosophy of each program was and like the, you know, the APS guidelines around the standards and all that sort of stuff.

[00:04:27] I looked at counseling psychology. I read it and went this is the sort of psychologist I want to be because in my experience, people don't fit neatly into boxes and that was particularly what counseling psychology was about, that people did not fit into boxes and they are viewed as part of their system as well.

[00:04:50] Bronwyn: So it was really, yeah, recognising the full person and recognising that in the therapeutic relationship.

[00:04:57] Kaedee: Yeah, that that was actually the most important part of therapy is that relationship that you build. I actually interviewed for a number of clinical psychology programs and it felt very clinical, is the word that I would, that I would use.

[00:05:16] Um, And then I went to the counseling psychology interview, which was quite funny. I was late. I'd parked at the wrong place on campus. I ended up with a parking ticket. I've been, I've been caught in like three hour backed up traffic. Um, I got to the interview, but just scraped in, in time. And then I went there and sat there and did the interview. And it felt like they actually wanted to get to know us as people.

[00:05:44] Bronwyn: Ah.

[00:05:46] Kaedee: And that was the first interview that I'd been to. And I went, this is where I want to go.

[00:05:49] Bronwyn: Yeah, so you're using the word clinical in the sense of kind of stilted, like diagnostic boxes type thing.

[00:05:57] Kaedee: Yeah.

[00:05:57] Bronwyn: Yep. Mm. That's awesome. I'm really glad that you had that experience with the counseling interview. And so you got into the counseling course and then I'm just going to presume you started off your studies and you were like, I'm looking forward to this and you're along your merry way. And then can you tell us what happened?

[00:06:15] Kaedee: Absolutely. I thought that I was on my merry way and then I guess my body and my health just decided I was not on my way.

[00:06:26] Bronwyn: Okay. Um, so what did you notice?

[00:06:30] Kaedee: I started to have a lot of gastric symptoms. Not to get into too much detail cause I'm pretty sure no one wants to hear all the ins and outs of my digestive system. But I started to have like both lower GI and upper GI symptoms and stopped being able to tolerate food.

[00:06:49] Bronwyn: Oh, no. Yeah. And I imagine that would have been quite distressing for you.

[00:06:54] Kaedee: It was... so it got to a point where I could no longer continue in the program due to my health. So I started out the program relatively full time. In the second year, I started to become unwell and could not complete that. I had to take a semester off, which I was fully supported to do, and then could only come back in a really part time kind of manner following that.

[00:07:23] Bronwyn: Wow. And how was, how did that impact you? Because I've talked about this on the podcast before, but generally psychologists as a bunch of folk, we're usually high achievers. Maybe we've got some unrelenting standards. We, we love to think of ourselves as no, we can just push on and yeah, you know, it's all good sort of thing.

[00:07:41] Kaedee: Yeah, absolutely. I, I a hundred percent fit into what you described. I was an anxious, perfectionistic overachiever, that would always push myself. Like in my undergrad. I was studying full time. I was working like quite a lot of hours on top of that. I was volunteering, doing all of those sorts of things. And then it just came to a, an absolute screeching halt where it was just kind of like a, you can't do this anymore.

[00:08:09] I was seeing a psychologist cause I knew that I had difficulty with unrelenting standards. And it was kind of like, you have to pull back and I think, you know, part of us never wants to pull back, but there comes a point where like. My, like my body physically could not do that anymore.

[00:08:27] Bronwyn: Yeah. So it kind of overrode, I guess, the, the desire to keep on going and your body was just like, I just can't.

[00:08:35] Kaedee: Yeah, absolutely. Yeah.

[00:08:37] Bronwyn: And so you mentioned that you were supported to take time off from the university studies. Did the institution support you? Were you supported by other people around you?

[00:08:47] Kaedee: Yeah. So I was fully supported, um, by the program director at uni, fully supported by, the lecturers and other staff members of the program who just wanted what was best for me. I unfortunately also had to move home during that time as well to take care of my health.

[00:09:08] Bronwyn: Wow. What a, what a difficult set of times for you.

[00:09:12] Kaedee: Yeah, it, it definitely was.

[00:09:15] Bronwyn: Yeah. Did this all occur before you had started like placements, like internal prac or, or external placements as well?

[00:09:23] Kaedee: So I'd actually completed one placement at that time and I'd got a job out of that and was also working in the area. So I had made the decision that, okay, maybe I could do this part time and still work at the same time because it was really important to me that I was having that practical experience as well. Yeah. Yeah.

[00:09:45] Bronwyn: So I'm just trying to, I guess, tap into your mindset around this time. Like I can imagine maybe it was very frightening, um, very distressing, very stressful. I wonder whether you thought like, am I going to be able to return to psychology?

[00:09:59] Kaedee: I don't think that that was ever a doubt in my mind. It was always a, well, I just have to do this and I'm just going to push on.

[00:10:09] Bronwyn: Yeah. Hmm. No. Awesome. It sounds like psychology is like, you know, and studying in that field is a really big core part of who you are.

[00:10:17] Kaedee: Yeah, absolutely. And I think having that to go back to gave me something to work towards.

[00:10:24] Bronwyn: Awesome. Could you share with us if you're comfortable with the health conditions you were eventually diagnosed with?

[00:10:29] Kaedee: Yeah, so um, it, it, it, definitely took time. It was not an easy process, but eventually I got diagnosed with, um, a combination of things. I got diagnosed with Ehlers Danlos Syndrome, which is a genetic connective tissue disorder. There's, I think, 13 subtypes under there. I was diagnosed with severe gastric dysmotility.

[00:10:54] And eventually, um, mast cell activation syndrome, which is where the immune system is overreacting and producing, too many mast cells and acts like, things that are coming into the body are an allergen when they're actually completely safe.

[00:11:11] Bronwyn: Mmm. And with these health conditions, they're chronic health conditions, right? So they're manageable, I guess, not, not curable, air quotes?

[00:11:19] Kaedee: Mm-Hmm. Yep.

[00:11:21] Bronwyn: Could you tell us a bit more about some of the initial signs and symptoms of the health conditions you were experiencing?

[00:11:26] Kaedee: Yep. So, what's really common with Ehlers Danlos syndrome is a lot, a lot of us will be hypermobile. That's kind of one of the defining characteristics. It's because, um, it's a connective tissue disorder and there is a fault in it, so a lot of our joints are unstable. So as a kid, I was quite hypermobile, which is not uncommon for kids, but it persisted into my adult life. Like my party trick was licking my elbow.

[00:11:59] Bronwyn: Wow.

[00:12:00] Kaedee: And I could get, yeah, I can still very much do that. I remember when I was like really young, getting this email that was like, it's impossible to lick your elbow. And then 90 percent of people just tried. And I went. But I can...

[00:12:16] Bronwyn: Yeah.

[00:12:17] Kaedee: And like, I had really hypermobile fingers, like they bend backwards kind of thing. Yeah. Um, it's through my shoulders. It's through my ankles. I can walk on the side of my feet. Like people would be like, I broke my ankle rotating it like that. And I'm like, "Oh, mine just do that".

[00:12:35] Other really bizarre signs that don't sound like much on their own, but when you put them together, you're like, hang on, something's going on. So as a kid, I was always kept being told that I had really poor teeth and that I wasn't looking after them, but I was religiously like, brushing, mouthwash, all of those sort of things, and they just would, they just were not great. And, um, I've learned, you know, connective tissue is actually through your whole body and that's part of what your teeth are made of.

[00:13:06] Bronwyn: Oh, I had no idea.

[00:13:07] Kaedee: The other thing is that obviously I wear glasses. I've worn them my whole life, but I had an astigmatism that kept worsening. And no one could understand what was going on. They're like, oh, it's just because, you know, you're a teenager and you're young. But eyes are also made of connective tissue. And so I have something called keratoconus where, because the connective tissue is weak, they're going cone shaped.

[00:13:32] Another thing is like, local anesthetics don't work as well. Um, so we need more of that. Um, I got like, stretch marks quite early on, which is great. It's just because the tissue doesn't hold together properly. And I had these things, I had to actually write down the name of them. They're called subcutaneous spheroids, which are like little kind of lumps of fat that pushes through the connective tissue. So I have some in my arms and I have some on my feet.

[00:14:01] Bronwyn: Okay.

[00:14:02] Kaedee: And what happens a lot of the times is because these are genetic conditions is that there'll be occurring within a family. So they are very normal for that family. And it isn't until something goes really wrong that someone might actually seek a diagnosis.

[00:14:18] And as a kid, like you only know what your normal is. So you don't have any reference outside of that to know something is not normal for the average person. Um, I actually ended up getting my diagnosis because a friend had seen Ehlers Danlos syndrome on social media and went, Kaedee you need to show your GP all of this that's going on. And I was very fortunate to have a GP who went. Yeah, that's not normal. And referred me immediately to a rheumatologist, and getting my, finally getting my diagnosis that unified everything that I was experiencing.

[00:15:00] I kind of liken it to that, um, to a line in Harry Potter where they described the sorting hat getting put on Draco Malfoy and it barely touches his head and yells Slytherin. It was kind of the same thing with getting my diagnosis.

[00:15:14] Yeah.

[00:15:16] Bronwyn: Yeah, it does sound like those were some kind of classic signs, and I'm really glad that eventually you were able to get that diagnosis because it sounds like understanding that condition has been helpful.

[00:15:26] Kaedee: it's been helpful for my medical professionals to be like, there's a unifying problem, um, it might not be fixable, but it means we have an explanation.

[00:15:38] Bronwyn: Totally.

[00:15:39] Kaedee: It's um, it's kind of cool whenever I've been in hospital, I will have like med students and early career doctors come and examine me and play with my joints and stuff because they, they don't see it often.

[00:15:51] Bronwyn: So you're like an oddity? Yeah. Okay, cool.

[00:15:56] Would you mind sharing with us, did you identify as a person, um, with chronic health conditions or disability prior to these diagnoses?

[00:16:07] Kaedee: I might have recognized that, you know, my anxiety perfectionism was kind of like an ongoing thing that I deal with, but I definitely don't think that I identified as a person with a chronic illness or a person with a disability.

[00:16:24] I should probably add in there that there's been more diagnoses past that, um, while I was under investigation for all the, all of these things, I, um, was sent off to a gynecologist, because we just didn't know what was causing my symptoms and had a surgery and a diagnosis of endometriosis made. And that, that was really just an incidental thing.

[00:16:46] Um, and then during the COVID pandemic, I actually contract, contracted COVID, developed long COVID. And what my cardiologist has explained to me is that due to my Ehlers Danlos Syndrome, it's made my body at risk to develop a syndrome called POTS, or Postural Orthostatic Tachycardia Syndrome.

[00:17:08] Bronwyn: Wow. How does this all feel? Like I'm just imagining like, yeah, it's just like for me, I'm just imagining it just be like a truck hitting you. It just be just a lot, you know? How did this impact your sense of self and who you are?

[00:17:21] Kaedee: That's a really big question because sometimes I have days where I'm like, oh, no, I'm completely fine. Like, I'm just going about my life and other times I'm like, "Wow, I'm actually quite disabled".

[00:17:35] Bronwyn: Yeah. And, and what's it like to think that?

[00:17:39] Kaedee: There's a really kind of fluctuating sense of self in there. And I think it's taken some time to unpack what disability means to me as well. Um, what that actually looks like and what creates that disability, because sometimes it's not just... I have this condition, sometimes it's a these are the expectations that are put on you that I can't meet.

[00:18:06] Bronwyn: Yeah. What do you think is important for listeners to understand about disability? Like, what have you learned in about yourself that is important for listeners to, to know and understand?

[00:18:18] Kaedee: One of the biggest things I'm actually seeing at the moment is that disability is not a dirty word.

[00:18:23] Bronwyn: Mm.

[00:18:24] Kaedee: And I see people trying to use other words such as differently abled or level of ability and I actually have quite a high level of ability, in terms of the fact that I've completed a master's degree, I am working as a psychologist, but I also have a disability.

[00:18:42] Bronwyn: Mm. So it's important for you to be able to, yeah, not be like, you don't have to avoid saying I have disability. It's like, that's what I, that's what I live with.

[00:18:52] Kaedee: Yeah, I guess it's, like, you know, having a disability does become part of your identity because your identity is made up of what you do every day. And my disability is a part of my life every day.

[00:19:05] Bronwyn: Yeah. And so I'm wondering, like, you know, I asked, I only asked small questions on the podcast. I'm about to ask you a big question, but I'm just wondering, like, you know, you described to me how you, you were that perfectionistic anxious person, the unrelenting standards, and then through the diagnosis and your health conditions coming up, there were times when you could not do what you wanted to do.

[00:19:32] How did those two things exist in your identity?

[00:19:36] Kaedee: You're right. Hat is a really big question. And I think that's, that's been a lot of acceptance because it's not just it, it completely like having a diagnosis that is a genetic condition that doesn't have a cure can completely throw off the course of the life that you think you were going to have. And it's had to be this kind of weird acceptance that maybe we can't actually plan what our life is going to look like in the future. And I, I think that's, that is a really big struggle because some, some things that I would have liked to have done are now just things that I, I cannot do.

[00:20:23] Bronwyn: Yeah. It's a hugely, um, existential thing, really. It's like we thought our life was going in one trajectory and then kind of been rudely awakened to another trajectory. And how would you adjust to that? Yeah. It's, I imagine it's been a lot of things for you to grapple with.

[00:20:38] Kaedee: There is a huge amount of grief and loss within that because it's a, a big loss of kind of who you are and then having to put something else into that space, which is, I think for me has been incorporating that I am disabled into that space. And what does that mean?

[00:20:59] Bronwyn: Absolutely. And we haven't even touched on another point, um, of your journey, which is that, eventually, um, you made the decision to be fitted with a feeding tube. Could you tell us about that decision making process and how that's affected your daily life and maybe your professional life as well?

[00:21:20] Kaedee: Yeah absolutely. it, is not a common thing. I just want to say, um, as the kind of disclaimer for that, because I know there will be other people out there going, being like, is this what's going to happen to me? So I live in a city with just under a million people and at the public clinic that does the feeding tubes, there are about 300 people accessing it. And there's only roughly, you know, 5 to 6 people who are similar to me. So it's a pretty uncommon thing.

[00:21:51] Bronwyn: Good to know, thank you.

[00:21:52] Kaedee: Yeah, um, just for anyone who's now, who's now gotten a little bit anxious, um, yeah, it's, it is absolutely a last resort treatment. Um, it is not something that's made lightly because there are risks involved. So it basically involves having to kind of fail every other conservative method to try to manage nutrition to get to that point.

[00:22:19] And then when you get to that point, it is then another kind of journey into what is going to work for you. So , I originally had a, what's called a nasogastric tube placed, which is a tube that it runs from through my nose and down into my stomach and I was drip fed through that. That eventually was not the right fit.

[00:22:43] I had to then get refitted with a different tube that bypassed my stomach and went into my small intestine. Trialled that, works great. I was no longer in pain. Um, and then had a more permanent version of that fitted, but then also had to go through three different trials of feeds to find the right thing for my body as well. So it was a long process, but it was such a relief to actually be able to access consistent nutrition during that time.

[00:23:13] Bronwyn: Yeah, yeah, it does sound like it was the, the right decision for you at that time.

[00:23:19] Kaedee: Yeah, it absolutely was.

[00:23:21] Bronwyn: Yeah. I'm curious to know, did you go back to, uh, seeing clients maybe back to the workplace and how did having a visible, aid, how did, how did that go down with clients? Like, did it come up like or not?

[00:23:35] Kaedee: Yeah. Um, it, it absolutely came up because I'm sure I sent you some pictures as well, but it's not something that you can hide as well. So what had happened was when I got fitted, I actually had to be in hospital for just over a week because there are risks with reintroducing nutrition, um, suddenly, so I had to be in hospital, had to be monitored, but then also once I was safe from that perspective, was discharged home and then had to learn how to manage at home before I actually returned to work and that in and of itself was a process and I had to seek quite a lot of supervision around it and what I was going to do in that situation. None of my supervisors had ever come across this and I'm actually yet to meet another psychologist who's been through this as well.

[00:24:30] The way that I approached it is it's a visible aid that is no different to any other visible aid. At a relatively similar time, I'd had a work colleague who was on crutches, from, you know, a broken leg, and went, well, this is no different to that, in terms of needing a visible aid, so that I can get about in my day to day life.

[00:24:53] However, I did have some extra considerations. A big proportion of the clients that I work with are actually eating disorder clients. For them, feeding tubes can be quite distressing. Um, and some of them may have had experiences of those being used in quite a coercive way in their treatment. So I sought like specific supervision around that. And I, I openly made the decision I had to disclose the reason that I had this. Otherwise, I think my clients would have jumped to their own conclusions about why I had it. I did not really have a problem with that level of self disclosure. It was visible. It was in their faces. They were going to have questions.

[00:25:41] Bronwyn: So it's like, you know, you know, they know that they can say it. Yeah.

[00:25:44] Kaedee: Yeah, absolutely. And so by self disclosing it, it actually made them feel safer to then ask questions.

[00:25:53] Bronwyn: Okay. And were you happy to answer those questions or was there a bit of discomfort around that for you?

[00:25:58] Kaedee: For me with clients, not many of them had that many questions. I did have a client who found it quite distressing at first and we actually spoke through how my experiences were different to their experiences because I was very much in control of that and then over time and having that exposure actually really just settled that down.

[00:26:22] There's also disclosure that you don't actually also necessarily think about when you're going in like that. I had to not only disclose to my clients, but actually to most of my work colleagues as well.

[00:26:38] Bronwyn: Yeah. What is, what is that like? Like, would you, I, are you a private person and would have preferred like, I guess to have kept this, like, I wish I could keep this under the radar sort of thing or where are you kind of an open book person and was like, well, this is fine.

[00:26:52] Kaedee: I have ADHD, so I can't shut up.

[00:26:55] Bronwyn: Yeah, I hear that.

[00:26:56] Kaedee: Yeah, so I don't. I don't really have that much of a choice in how much I share with people because sometimes my mouth just runs away. Um, sometimes it, it would be nice and there are certain situations where it would be nice having to not share that. The one thing that you don't think about is job interviews.

[00:27:16] Bronwyn: Yeah. Tell us about that.

[00:27:18] Kaedee: Yeah, so I have to go in there, um, I have a very visible aid and then I have to disclose that to them at the interview.

[00:27:29] Bronwyn: Yeah. What was that like? Okay, because here's my, here's my thing. If I see someone with a feeding tube, my automatic thought, which may be incorrect, is that they are unwell. And so I'm like, how unwell are they? Are they going to be okay? Um, I'm concerned about their health. I'm concerned about them as a person.

[00:27:47] I imagine that if in a job interview, they're like thinking how's this going to impact their ability to do their job? Like, I don't know whether you've, you felt that views or maybe they were very open. Like what was your perception?

[00:28:00] Kaedee: One interview that I went to was really, really great with it. But others that I have been to, it has felt a little bit uncomfy. And, you know, I've, I've had to deliberately ask those questions. How is this workplace flexible? Is this going to be inclusive for my needs? Because I can suddenly have things happen and have no control over those things. And how is that going to look? And can you accommodate for that? And even though they should be, um, accommodating for that, you know, we say that you can't discriminate against people, but they can make the choice to hire someone else.

[00:28:41] And, you know, I've, I've been to a job interview and being like, Oh, I'm doing really, really well. Like I have, like, I feel really stable. Haven't had any problems. That night I ended up back in emergency.

[00:28:52] Bronwyn: Oh wow. So it really speaks to the unpredictability of the health conditions and it sounds like you really needed that flexibility from your workplace.

[00:29:02] Kaedee: Yeah, absolutely. Which is why I'm at the place that I am now because they, they were really, really great with me.

[00:29:10] Bronwyn: Yeah. With that, are there any other aspects to your health journey that you wanted to share with listeners?

[00:29:16] Kaedee: There is so much I want to share.

[00:29:18] Bronwyn: You're like, Bronwyn, you've got five hours?

[00:29:22] Kaedee: Yeah, yeah. I'm going back to the client stuff... I've actually had really positive reactions from a

[00:29:32] Bronwyn: Thanks. Cool. Like what kind of reactions?

[00:29:35] Kaedee: So working with people with eating disorders, some of them have been like, "Oh, well, your experiences are different", but seeing the feeding tube means that you've been through something too.

[00:29:47] Bronwyn: Uh, I'm so glad you're bringing this up. I wanted to ask you about this and then I remembered like 20 minutes ago and then I forgot. So I'm really glad we're talking about this.

[00:29:54] I know you say that you were already seeing a psychologist, but has this experience given you some greater insights into what living with a disability is like and living with chronic health conditions and does that help your work?

[00:30:06] Kaedee: Oh, look, absolutely. Um, and sometimes it's just, you know, we spoke about earlier that counseling psychology has a real focus on the, on the therapeutic relationship. And like, I'm just thinking about that, and I'm remembering one client where their parents said to me, I feel like my child is doing really well because they're seeing you existing with a feeding tube unapologetically in the world. And it gives them permission to be themselves.

[00:30:41] Bronwyn: Oh, amazing. What, what amazing feedback that really, um, tugs at my heartstrings. I'm like, Oh, I was like, you know, you can make a difference just by like being unapologetically yourself. Like, awesome.

[00:30:52] Kaedee: I think the way that I work with clients and my understanding of things has majorly shifted. I was actually kind of reflecting on this the other day in like, in relation to coming on and doing this podcast and how I actually have clients that are deliberately seeking me out because of my lived experience of disability.

[00:31:19] You know, we've got this kind of top down and bottom up model of therapy where, you know, the top down means we're trying to cognitive, cognitively understand someone's experiences, but we've got this, it's this bottom up approach of, "I have lived your experience and I feel that in my body and I embody that experience" that is so different.

[00:31:46] I'm absolutely not saying you can't develop empathy for your clients, but having experienced that in like, in my body and in my bones, it like, you just relate to people in a different way.

[00:31:58] Bronwyn: I really appreciate hearing what you're saying because I agree with you that of course you can develop empathy for people's experiences, but there's so there are some experiences which you've lived through, it's like, let's say that that experience has produced shame or grief or loss. You don't have to guess or try and work out what the feeling is. It's like you already know. And that can create a unique shared connection between you and the client.

[00:32:23] Kaedee: Yeah, absolutely.

[00:32:26] Bronwyn: Nowadays, like, do you have in your therapist profile, it's like, I'm a disabled person.

[00:32:31] Kaedee: I don't, it's been something that I've been debating putting in. Um, I think there's, you know, there's still a lot of stigma about the lived experience and this is particularly why I chose this podcast to come on because you've really unpacked some of those things and actually in my first year of my master's course, all those years ago, I had a lecturer stand up in front of the room of people and tell us that anyone with a DSM 5 diagnosis should be considered an impaired practitioner.

[00:33:07] Bronwyn: Oh, shit.

[00:33:09] Kaedee: Yeah.

[00:33:10] Bronwyn: Damn. Okay. That excludes all of us.

[00:33:13] Kaedee: Yeah, no, I'm, I'm pretty like that, that hit me really hard and I'm pretty sure it hit quite a lot of other people in the room hard. And I actually wrote to my, like, course director and went, "What the fuck?"

[00:33:27] Bronwyn: Yeah. That's not cool.

[00:33:29] Kaedee: Yeah, no, I, I felt such strong stigma. I, I sometimes still am not sure how that's going to be perceived. So I have, I have a profile on the Ehlers Danlos website that does say I have lived experience, but my general profile at work does not, but I will self disclose when I'm in the room with people. Um, my feeding tube is no longer on my face. It. slightly more hidden and goes from my stomach into my small intestine. I, I still have to carry around a pump and equipment with me, which is in a nifty little backpack that's been all adapted.

[00:34:05] Bronwyn: Oh cool.

[00:34:05] Kaedee: So I, I still have to have a little bit of a level of self disclosure. And I usually just tell people my stomach doesn't work. These are my robot parts, um, which, which usually gets a bit of a laugh.

[00:34:16] Bronwyn: Yeah, I love that.

[00:34:17] Kaedee: Yeah, it goes down fairly okay. But like that, that disclosure, like I'm never quite sure how it's going to be received. And when I'm thinking about systems and working within systems, I'm not sure how that's actually going to be perceived within that system.

[00:34:33] Bronwyn: That makes me think about safety as a professional, it's like, do you feel safe, if you disclose to clients, I guess, um, what am I trying to ask? Do you feel safe as a professional that if you disclose to clients, like your colleagues aren't going to be like, Oh, like they're a bad practitioner sort of thing or like, Oh, how dare they use their lived experience?

[00:34:52] Kaedee: So where I am now, and I think being also being fully registered, I feel a lot safer. I think as when I was back in my provisional days, I felt less safe to do that. But I have really good, like I unpack some of this stuff with my supervisors who encourage me to step into that identity and I think I've got into a place where I'm like, I'm actually done hiding that it's part of who I am.

[00:35:19] Bronwyn: Yeah.

[00:35:20] Kaedee: And I don't have a choice in it. So, why should I hide that from people?

[00:35:25] Bronwyn: Preach.

[00:35:27] Kaedee: Yeah.

[00:35:27] Bronwyn: Yeah.

[00:35:28] Kaedee: So I think, I think I do deliberately seek out workplaces that support and enable that, um, versus workplaces that might not have that same view.

[00:35:41] Bronwyn: Yeah. And yeah, I do the same thing, because yeah, I'm neurodivergent, and like, I reckon, I reckon we're on the cusp of this because we have like, I agree that lived experience has been stigmatized amongst psychologists, amongst mental health professionals, which it shouldn't be, but I reckon we're on the cusp of like finally kind of incorporating lived experience and listeners can't see it, but I kind of doing this like, encapsulating things with my hands that I want them to join.

[00:36:05] And I hope... because there's lots of folks who are in the queer community, who, um, are gender diverse, who are neurodivergent, and I feel like a lot of folks are coming out now and being proud of that, um, which is fantastic. And yeah, I hope we can get more of this in the future, actually, because I do feel like it, it comes at a cost when we have to hide parts of ourselves.

[00:36:25] Kaedee: Yeah, absolutely. It doesn't feel authentic and it doesn't feel authentic when you're sitting with people in the room. Yeah. Absolutely.

[00:36:34] Bronwyn: And yeah, like you say as well, it's like you can't like not, it's like yours is visible as well. Like you can, you can see something is happening here. It would just be weird if you were kind of just like ignore the, the robot parts.

[00:36:46] Kaedee: Yeah, ignore the pump when it beeps because it's having a little hissy fit.

[00:36:52] Bronwyn: Yeah. It's yeah. It's, it's indisputable that you are human.

[00:36:56] Kaedee: In, in my first role, it was in youth mental health and you could see a lot of parents when, people can't say, um, obviously on the podcast, my hair is a rainbow.

[00:37:07] Bronwyn: Yeah. It's lovely.

[00:37:08] Kaedee: And I'm very tattooed and a lot of parents would breathe a sigh of relief that I was not a person in a suit coming to speak with their teenager that it looks, looked like I could relate to them.

[00:37:20] Bronwyn: Yes. Yeah. And I bet they wouldn't. And I bet your clients would appreciate that as well.

[00:37:24] Kaedee: Yeah.

[00:37:25] Bronwyn: Yeah. Rather than being like, hello, young person,

[00:37:31] Kaedee: Yeah.

[00:37:32] Bronwyn: So Katie, we've, we've heard a bit about your story. Thank you so much for sharing it with us. There may be listeners who are hearing this and they've faced similar challenges or they are navigating their own disabilities or chronic health conditions. What advice or tips would you give to them?

[00:37:51] Kaedee: My biggest thing is asking them to please keep going with psychology. Um, and like saying, we absolutely need more, disabled, people with diverse experiences in psychology. My other big thing is use all the accommodations you can get. My problem and my anxious little brain went "Oh no, I can't possibly use these because they're giving me an advantage over other people". They are absolutely not. They are putting you on an even playing field with the people who are not experiencing the same challenges that you are.

[00:38:26] Bronwyn: Equity!

[00:38:27] Kaedee: Yeah.

[00:38:28] Bronwyn: Yep.

[00:38:29] Kaedee: I, I absolutely think that supervision is with someone with some level of experience or some understanding of disability and how it might actually shape your identity is absolutely necessary.

[00:38:43] Bronwyn: Oh wow, that's really good tip actually. And have you found a supervisor who really does understand that?

[00:38:48] Kaedee: Yes, I do. Um, I've got, so I, yeah, I've got a couple of great supervisors. I've sought out one specifically who has lived experience as a neurodivergent person. And then I've got another supervisor, um, who I started working with actually for, when I was first getting trained up with working with eating disorders, like four or five years ago, something like that who also has a kind of separate experience with disability.

[00:39:18] Bronwyn: Oh, wonderful. I'm so glad you've been able to find that guidance.

[00:39:21] And, you know, we've talked about how we, we started off with you and your graduation photo. And so, you were able to complete your master's after six years, numerous hospital admissions, lots of challenges. What kept you going during this time?

[00:39:36] Kaedee: When I was thinking about that, I think it was less that, I, I kept motivated to complete my master's and more that completing my master's kept me motivated to keep going in my life. It gave me something to work towards and some kind of purpose outside of being chronically ill.

[00:40:00] Bronwyn: So it sounds like it helped give you that sense of purpose, like a reason for getting out of bed in the morning.

[00:40:06] Kaedee: Yeah, absolutely. Like, um, when I was Because while I was completing my masters, I was also working part time. And, you know, going to work and getting to put on my identity as a psychologist meant I could kind of step outside of that role of being sick and step into another role where I could bring meaning and purpose into my life and someone else's life.

[00:40:32] Bronwyn: That's really good to hear.

[00:40:34] Kaedee, in what ways do you think the field of psychology can better support and accommodate our colleagues with disabilities?

[00:40:43] Kaedee: Ah, look, I think there are so many ways, um, that, um, Psychology can look at that and I think one of the biggest one is actually valuing the lived experience of people with disability and I mean this that in an actual kind of meaningful way, whereas I think sometimes it can be done quite tokenistically or as a tick box exercise.

[00:41:10] Oh, yes, we've got that one person on it on our panel with that and, but we actually listen to the, the people who do the clinical work rather than the person living with it. So, I think it, you know, that lived experience needs to be integrated at all levels.

[00:41:26] Bronwyn: Yeah, so true co design, it's like they're setting the research agendas, they're involved in the research, they're giving feedback, they're like navigating and telling what needs to change.

[00:41:37] Kaedee: Yeah, yeah,

[00:41:38] Bronwyn: Mm. Mm.

[00:41:39] Kaedee: One of the biggest things that I've always held is that I also feel that the pathway to registration and full registration is often actually quite inaccessible for a lot of people.

[00:41:52] Bronwyn: Yeah. Tell us a bit about that.

[00:41:55] Kaedee: Yeah, so like I'm, I'm just kind of thinking about, you know, I was fortunate to actually get through my undergraduate and honours at a point where I was well. I don't know that I could have done that while I was ill because I would not have been able to study full time. I would have had so many other things going on outside of attempting to study. I am someone who does have to work to pay my bills. I don't know that that would have been accessible to me. And at least, at least in a way that I would have been able to keep up the necessary grades. And then, you know, getting into a master's program, they also want you to have, some sort of experience as well. And I could not have done that on top of everything else.

[00:42:45] Bronwyn: Totally. I, I, agree with you.

[00:42:48] Kaedee: And then we've also got rid of the 4 plus 2, which was a very accessible pathway for a lot of people. When you consider that like a two year master's degree is a full on program where they tell you, you can, you cannot work during this.

[00:43:03] Bronwyn: Yep. Yeah, no, it's so true. They absolutely say like, we recommend you, you don't work. And yeah, a lot of people need to work to money, that thing that keeps them supported. and so it's inaccessible to people who lack financial security. And I guess it's inaccessible for people who may need greater flexibility in how they, and when they study, but which the four plus two enabled people. It's a very full on course, but there's some more flexibility in that because you can be like, okay, I'm going to work like part time for, uh, for a few months now. That sort of thing.

[00:43:36] Kaedee: Yeah. Yeah.

[00:43:37] Bronwyn: Yeah. No, I totally agree with that. It's like, when you think about the pathways for psychology to full registration, it does rely on you being able to have a relatively stable health and a stable life, life opportunities, and like probably very little or no caring responsibilities. yeah, no misfortunate events , and we just know that life often doesn't work that way.

[00:44:02] Kaedee: And with the increased cost of living at the moment, it's becoming inaccessible to people from more of a low SES.

[00:44:11] Bronwyn: Yeah. Mm. Which we absolutely need. Um, yeah, how can people who are from high SES backgrounds possibly serve everybody in Australian community?

[00:44:21] Kaedee: Yeah. And that, that comes back to that embodied experience of I know what this is like. And I've, I've directly said to some of my clients, you don't need more therapy. You need more money.

[00:44:30] Bronwyn: Yeah, absolutely. Yep, definitely.

[00:44:33] Kaedee: I, um, I think I have another point, I'm just looking at my notes that, one of the things that I've noticed as a result of, you know, being chronically ill and disabled is how flawed our systems are. So, and how inaccessible they are. And sometimes I actually have to have a conversation with clients about, know, going to hospital does not necessarily mean treatment. It means that they stop you from dying.

[00:44:58] And that how, how hard it is to actually get on the NDIS for people who are disabled. I identify as disabled. And I'm struggling to, I'm a psychologist, and I am struggling to navigate the system to apply for it.

[00:45:15] Bronwyn: Yes. So you think of somebody who doesn't have that knowledge that you bring as a psychologist trying to navigate applying for NDIS.

[00:45:22] Kaedee: Yeah, and trying to understand it and get all the reports together. It's quite similar for DSP as well. And there's a lot of us who sit, I think, in this strange area of we're not quite well to be able to work full time, but we're not unwell enough to access additional financial support.

[00:45:48] I don't, I don't know that I've heard many people talk about that. Like I am someone who would have to frequently use my holidays and sick leave for medical treatment. And when I run out of those days, it means that I have no income coming in and I am then forced to save up enough just in case that happens and you can end up kind of going down a bracket like in terms of your social class, because you've become unwell and the systems in place don't allow people to actually get ahead.

[00:46:26] Bronwyn: Hmm. You're right. I think it's something that we don't speak enough about, um, and thank you for articulating it. The, the only like experience I've got with that is that, um, I've had my brother on the podcast, Cameron, listen to his episode is great. Um, and he has mild cerebral palsy and a mild intellectual disability.

[00:46:43] Uh, my gosh, dramas to get him on DSP and NDIS were immense, but it's because everything is always in comparison. So it's like, well, you're not a person with severe cerebral palsy, um, and they totally underestimate the impact of disability on your life and your well being and your capacity. And it's a systemic thing.

[00:47:03] It's, it's so difficult, but yes, it's like, I'm unwell, but I'm not well enough, unwell enough by your standards. How sick I to be to get some help around here?

[00:47:12] Kaedee: Yeah, absolutely. And I think there are some of us with disabilities who will, who do have to drag themselves out of bed and go to work no matter what, because if they don't go to work, they don't get money and then the bills don't get paid.

[00:47:30] Bronwyn: Yeah.

[00:47:30] Kaedee: And I think, you know, that, that was part of how I was surviving as well and it led to a lot of people saying, "Oh, you're really resilient". And I'm like, No, I'm doing what I have to do to survive.

[00:47:46] Bronwyn: So do you feel like it's when we're talking about how we can support other practitioners in this field who identify as disabled, like I know, should we be acknowledging more the systemic factors that make life harder for them than it has to be?

[00:48:02] Kaedee: Yeah, absolutely because, you know, I'm thinking of the new like neurodiversity movement and the view that sometimes disability is actually caused by systems and society more so than the difference itself.

[00:48:17] Bronwyn: 100%. Yes, it is. Yeah. And so, and I guess psychology has typically taken a medical model of disability. We haven't looked to that social model of disability and being like, what are the systems in place that are making people like disabled? How could we help them?

[00:48:34] Kaedee: It's, I'm just going like I could talk on this all day, but you know, thinking about like people coming from a complex trauma background and the systems that keep them traumatized.

[00:48:45] Bronwyn: Yep. Absolutely. No, I think it's really valuable for you, like, like we said at the start, it's like having that embodied experience and really knowing systems have these effects on people. So being able to say to your clients, like, you know, it's not necessarily that, um, you're unwell and you need treatment for that, you need money or you need resources.

[00:49:03] Kaedee: Absolutely.

[00:49:05] Bronwyn: Katie, is there anything else you wanted to share with us before I ask you what your takeaway is?

[00:49:11] Kaedee: I think one of the other things that I wanted to get across, especially like talking about people with disability. One is that the, I don't, think that until you go into it, you don't realize how disjointed the medical system is. I have a systemic condition, meaning it affects my whole body, but the medical system breaks that down into different parts. So, I will see someone for a digestive system. I will see someone for my heart. I will see someone for my eyes. I will see someone for my teeth. I mean, that's always been a kind of separate thing. and then I will see, you know, I might see one person for my digestive system, but they don't do the surgery that I need. So then I have to see a surgeon in that area.

[00:49:58] It's just so disjointed trying to access that. And I've also noticed this huge gap in medical care where we kind of think of the mind as separate to the body and it's not.

[00:50:10] Bronwyn: Mm.

[00:50:11] Kaedee: And when they're evaluating risk, they're also not kind of considering that person's mental health in their risk assessment and what that might look like for them. It's specifically focused on the organ and not the whole person.

[00:50:25] Bronwyn: Mm. So what needs to shift in your opinion?

[00:50:28] Kaedee: Oh, definitely. Like there's a huge need, I think, in the medical field for holistic care and to look at a whole person approach as well as an individual system approach.

[00:50:40] Bronwyn: Mm. And do you feel like that could be applied to psychology as well?

[00:50:44] Kaedee: Absolutely. Like, you know, we, we sometimes break people down into what box or category do you fit into and what's the individual thing that's going on with you versus seeing them as part of the systems, and, you know, is this actually a diagnosis or is, is this a really normal reaction to abnormal situations?

[00:51:07] Bronwyn: And is this the approach that you now take, like, it sounds like it's just part, part of how you work.

[00:51:14] Kaedee: Yeah. And I think that's part of why I was drawn to counseling psychology well, because that, that was actually, you know, we all get trained in making a diagnosis, part of my training was considering all of those broad factors as well. And thinking, is this actually a diagnosis or is this just a reaction to the situation that's going on for you?

[00:51:37] Bronwyn: Yeah, and it sounds like we miss a lot if we don't consider that.

[00:51:41] Kaedee: Yeah, that, that formulation really guides how you work with that person.

[00:51:45] Bronwyn: Yeah, absolutely. No, I, I I've heard on the podcast a few times now, people calling for this systemic approach and really considering the person in interaction with their systems in the environment. And it seems, it seems so obvious, but also something that is, is so neglected, um, in our practice and training. And I really hope that, yeah, people listening can incorporate that into their practice.

[00:52:08] I know that I definitely think about it a lot more. It's not something that I was taught. It's something that I've been taught by my clients, to not ignore. So whether it's like through like reprimand and being like, Hey, you're not thinking of my environment. And I'm like, shit, I was not, that now it's, it's in there all the time.

[00:52:24] Kaedee: My, my other point is there always feels like this huge pressure to, like, look like this inspiration to people. Which is quite interesting when I say that to people, because they're like, "Oh, look, you're, you're so resilient, you're doing so well. Look at all the things that you're doing", and this kind of pressure to, to be like, you know, "Oh, look, if I can do that, you can do that too", and it can feel really false.

[00:52:52] You know, I've heard, um, I've heard the term like, um, using people like disabled people as inspiration porn.

[00:53:00] Bronwyn: Yeah, I always think of that video by Stella.

[00:53:02] Kaedee: Yeah, that, that sort of turn of phrase and there's, there's, you know, benefit in meaning making, but I think there's this kind of missed acknowledgement of, I've actually been through something awful and life changing, and, you know, my, my life will never be the same again, and I'm really like, it's okay to acknowledge that and not feel like you have to find meaning out of it. It's allowed to just be awful.

[00:53:32] Bronwyn: Yeah. Again, thank you for sharing that. It sounds important, like that, because I guess some people can try and alleviate their own distress by being like, "Oh, but such an inspiration", and like they try and put a silver lining on it. But sometimes are just really awful, like you said.

[00:53:47] Kaedee: Yeah. And, um, for, for my own personal experience, I, I watch people do that and I can see their own discomfort in not knowing how to respond to that and not feeling comfortable with their own emotions about that. And so they try to find something in it and it feels really false for me because that not be the way that I'm feeling internally and then that leads to a lot of masking because it's like I cannot be myself around you because you are not comfortable to hold my emotions.

[00:54:23] Bronwyn: Yeah. And I wonder if there's things that you bring to your client work, maybe with clients who are going through like chronic health conditions or living with disability.

[00:54:30] Kaedee: Yeah, absolutely. I think that that's really something that I sit with with them that maybe this is just awful and unfair.

[00:54:39] Bronwyn: Yeah. So a lot of that radical acceptance around that.

[00:54:43] Kaedee: Yeah, and that you're, you're allowed to feel those emotions and you're allowed to kick and scream and acknowledge that your life has changed like, like irreparably.

[00:54:56] Bronwyn: Yeah. So let's make space for those emotions. We're not trying to necessarily make them better. We're just allowing them to be here.

[00:55:03] Kaedee: Yeah. Yeah. And allowing you to feel those things.

[00:55:07] Bronwyn: No, I think that's really beautiful.

[00:55:09] Kaedee: And um, the, the other thing that up is so, so many people want to offer a fix.

[00:55:16] Bronwyn: Oh, yes, they would.

[00:55:17] Kaedee: Yep, yep. Have, oh, but have you tried this? Have you tried that? I'm like, yes, I've tried the underwater horse yoga.

[00:55:24] Bronwyn: Yeah, it's always like, it's, it's always mind boggling having grown up around disabled folk, like my whole life and like, you know, had lots of, have lots of friends who are disabled and just the shit that I hear from my friends, like people wanting to pray over them in public, like stuff like that. And I'm just like, How do people think that's appropriate? Um, and like, yeah, telling them about like cures they've seen on the internet and stuff. And I'm just like, Jesus Christ. But it just, I'm so glad you brought that up, cause it's just a great reminder. It's like, don't do that.

[00:55:55] Kaedee: No, we, I'd rather that you just validate and are like, oh wow, that's awful and I don't know what to say, because that, that feels real and that feels like I'm understood and heard. And when I've seen like my own practitioners hearing that validation and them just holding that space for me has been so much more important for me than any kind of like evidence based practice that, that, you know, could be put onto that.

[00:56:21] Bronwyn: Yes, absolutely. Oh, thank you for sharing that. It just, yeah, really acknowledges the humanness, um, about this all.

[00:56:29] Kaedee: Oh, my, my brain just tweaked of something else. One of the other ways that my practice has changed is working with eating disorders. Um, sometimes when we're like, you know, thinking about body image and things like that. One of the ways we might help people to kind of feel different about the way that their body is is we shift their focus from what does my body look like to what can my body do?

[00:56:54] But you know, then I had this lived experience and I went, my body can't do things. And it's actually changed the way that I work with people because I have some people who have a chronic illness. and an eating disorder. And it's been a shift away from what can your body do because their, their body in some ways is broken.

[00:57:16] Bronwyn: Yeah. How do you, how do you do that? Because literally like, you know, I've been trained in working with folks who have eating disorders and what are the mantras that they tell us to give to them is like, my body is fine and functional as to, yeah, yeah, that's the thing that I was, that I was shown in my training. Um, so yeah, just curious. Uh, what do you do when your body's not functional?

[00:57:39] Kaedee: Um, so one of the things I've looked at is like, you might always have to deal with these things. Do you also want to deal with an eating disorder at the same time?

[00:57:49] Bronwyn: Oh, that's a good one. Yeah. Perhaps not.

[00:57:52] Kaedee: Yeah, a lot of them have been like, no, or shift shifting away to, um, what is going to add value to your life? Is it going to be remaining in your eating disorder? Or is it going to be shifting outside it to find other things that you value outside of it rather than what can your body do?

[00:58:12] Bronwyn: I love that. Thank you for sharing that. I will remember that and replace that with that. My body is fine and functional.

[00:58:19] Kaedee: And, you know, for some people with eating disorders, they will recover into a body that is not fine and functional as a consequence of their eating disorder well. So saying that is so false to them.

[00:58:32] Bronwyn: Mm. Absolutely.

[00:58:33] Okay, Katie, I just want to thank you so much for sharing your story with us and your insights. I'm so grateful to have, learned from you and your experiences. Um, and thank you for sharing that with our listeners. I reckon that there will be people listening who are disabled, who live with chronic health conditions and have no idea how to journey through their careers as a psychologist and just listening to you has been very validating for them.

[00:58:57] And I just wanted to wrap up by asking you, what's the biggest takeaway that you hope listeners will learn from our conversation today?

[00:59:05] Kaedee: I think the biggest thing that I would probably say is like, I guess from everything, is never underestimate the importance of just being in the room with someone and having space for their experience.

[00:59:20] Bronwyn: Yeah, beautiful. And thank you again, Katie, for coming on. It's been such a pleasure to have you.

[00:59:25] Kaedee: Oh, no worries. Thanks for having me. It's been quite nice.

[00:59:29] Bronwyn: Great!

[00:59:30] Listeners, thank you for listening. If you enjoyed this episode or any of our previous ones, please do leave us a five star rating and review on podcast app. It really does help make sure that the podcast gets into people's ears. And that's a wrap. Thank you so much for listening to Mental Work. Have a good one and catch you next time. Bye!