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Patient Stories, Podcast

“Disability is not a Dirty Word:” Catherine’s Story of Fierce Hope & Young Patient Advocacy

3 weeks ago
57 min read
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Episode Summary:

What’s it like to be a young person living with chronic illness? On this episode, Chronically Catherine shares her personal story of being diagnosed with multiple overlapping conditions as a teenager including: immunodeficiency, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos Syndrome (EDS) and migraine disease. Through sharing her own story publicly, Catherine learned the importance of disability representation and advocacy for young people. She also delves into why it is crucial to include the voices of young adults in the research and advocacy process. 

Cheryl and Catherine explore the process of dismantling their own internalized ableism and challenging societal norms around what constitutes a “normal” life. They also challenge the idea that disability is necessarily a “bad” word.  They emphasize the importance of self-care and finding joy in everyday activities, even if they require accommodation.

For Catherine, participating in activities like surfing, albeit in an accommodated manner, brings fulfillment and contributes to her definition of living a good life with chronic illness. Throughout the conversation, Cheryl and Catherine underscore the values of self-advocacy, self-acceptance, and finding happiness on one’s own terms.

Episode at a glance:

  • Catherine’s Diagnosis story – initial diagnostic ambiguity followed by official diagnoses 
  • What’s it like to navigate multiple overlapping health conditions?
  • Language matters: Cheryl & Catherine discuss “identity first” versus “disability first” language
  • Internalized Ableism: The conversation touches upon the process of dismantling internalized ableism, challenging societal norms, and redefining what constitutes a “normal” life in the context of chronic illness.
  • Research and Advocacy: 
  • Acceptance and Tolerance: There’s a focus on the importance of acceptance and tolerance of uncertainty when living with chronic illness, emphasizing the need to redefine notions of success and happiness.
  • Self-Care and Accommodation: The value of self-care and finding joy in everyday activities, even if they require accommodation, is emphasized as a key aspect of thriving with chronic illness.
  • Social Support and Connection: 
  • Tips for Newly Diagnosed Patients:

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Catherine Ames

Catherine Ames is writer, speaker, patient advocate, and patient herself. She is routinely asked to speak at national events to provide the young patient perspective. In response to on-going requests for writing and speaking, she opened her own business, Fierce Hope Patient Advocacy and Consulting. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript:

Cheryl:  00:00

I’m so excited today to have Catherine, also known as Cat Ames on the Arthritis Live podcast, somebody who I’ve actually met in real life, which, at the rheumatology Conference, which is actually most people I talked to on the podcast I’ve never met. So, I’m happy to have you here! Welcome. 

Catherine:  00:14

Oh, thank you. Thanks so much for having me.

Cheryl:  00:18

Yeah. Can you just let the audience know a little bit about you? Like, where are you located? And what is your relationship to arthritis or chronic illness? 

Catherine:  00:26

Sure. So, I’m a San Diego native, West Coast, best coast. I was actually born in Hawaii, military family, and then moved to San Diego when I was, like, three. So, I’ve always enjoyed nice temperate climate, which, when I was diagnosed with multiple overlapping chronic health conditions in 2018, I didn’t quite realize how much the weather actually affected my health. So, you know, I would try to travel after I got sick and, you know, learned about how much the climate has an effect on my joints, and my skin, and all that stuff. So, yeah, I’m based in San Diego and pretty lucky to be here. And my main conditions, my relationship with chronic illness, my health collapsed when I was 21 in 2018. And I’m one of those question mark patients, you know. Is it ankylosing spondylitis? Is it lupus? We kind of don’t really know. So, we’re still, you know, using lupus to get things covered by insurance. But yeah, still one of those question mark patients who is just basically throwing spaghetti at a wall, and seeing what sticks.

Cheryl:  01:45

That’s so hard. I often call that diagnostic purgatory, where you’re just like, not sure. 

Catherine:  01:50

Yes.

Cheryl:  01:51

What you have.

Catherine:  01:52

Love that term. 

Cheryl:  01:53

Yeah. And yeah, I would love to hear more about your process of getting diagnosed, you know, what were your symptoms? And, you know, in 2018, how did you actually get to your at least preliminary diagnosis of some sort of lupus type thing?

Catherine:  02:13

Yeah. So, I’ve always been somebody who was burning the candle at both ends. I was doing theater; I was doing varsity sports. I was doing speech and debate, community service. If there was an after school anything, I was doing it. And I was also a super hardworking student. So, anytime I got sick kind of growing up throughout middle school, high school, even first two years of college, it was always like, “Oh, you just need to slow down. You know, you just need to, just do less pick one.” And I’ve never been to pick one kind of person. I’m like, I can have it all. 

Cheryl:  02:49

So, similar. Yeah. 

Catherine:  02:50

And so, anyways, that was all sinus infections, mono, whatever, whatever was spreading at whatever school I was at, I got. And that evolved into when I went abroad in my semester to New Zealand, fall of 2018. I got there, and I was like, whoa! Let’s party! I’m a single girl, woo-hoo. I’m gonna, like, go out in the town, meet a cute Kiwi. And was having the time of my life and figured these weird symptoms that started to pop up were just like, I was just too hungover too often. You know, stayed out too late dancing in the club. And then, they didn’t go away. My knee and joint pain, you know, I thought it was from like walking miles around the city, you know, just while wildly crazy with my friends until 3am. I was like, oh yeah, it makes sense that my knees are red and swollen the next day, or that I have a migraine that lasts 48-hours, or that my cheeks are super flushed, and they have a low grade fever. I’m just sick, you know, I just didn’t, like, my body, I put it through too much last night. 

So, as I tried to ease off of that a little bit because it started to affect my ability to attend class, the symptoms never subsided. And that was raising a lot of alarm bells for me because it started interfering with my daily life. So, I would lie down to go to bed at night. And my heart rate would be through the roof. It was like a horse was galloping on my chest, like I was running a marathon and lying completely still. And I would take my heart rate and it would be 181, 190, just lying, lying still, trying to sleep. It was insane. And I started getting nauseous all the time, rapidly losing weight because I started to get so nauseous. Anyways, long story short, I went to the urgent care in New Zealand many a time. And because they have stepped therapy there, I needed a step 13, which was a steroid and an antibiotic, but you have to go back for each step, in order to basically get the next step crossed off the list so you can graduate to the next therapy or escalate your care. I quickly realized that was not going to be fast enough care and get me better fast enough to stay for my semester abroad in New Zealand. 

So, I came back home early, that was like the saddest 13-hour flight I’ve ever been on. Within a month of getting home, my primary care — who now, looking back, probably said the thing that changed my life the most — went to her first and she was like, “I don’t know what to do with you. So, I’m gonna send you to somebody who I think will know.” And because she admitted she didn’t know what to do with me, I started seeing specialists. In about two, three months, I had, I think, 8 to 10 specialists. I was going up to LA to get care, all my symptoms continued to worsen. That resulted in a three-year medical leave of absence in the middle of my college experience, transferred schools to be near my care in Los Angeles, and finished up my college career much later than I had anticipated, but finished it, and graduated last year. And throughout all of that, really, it was lonely and wanting to make friends who are going through something similar to what I was going through my age. So, I started to get creative with ways to meet those people. And one of those big ways was writing, putting my story out there first, and then hoping people would respond to it. So, that’s the Spark Notes. And now, I’m here with you.

Cheryl:  06:54

Yeah, and what — wait, what was your blog called? Or what is it called? Didn’t you have a blog? 

Catherine:  06:58

Okay, yeah, I wrote an opinion column at my school’s newspaper called Chronically Catherine. And it was the first anything at the student newspaper that shared first-person perspective of a student living on campus with disability, and chronic illness. And the response was overwhelming. And really beautiful. So, that led me into patient advocacy and wanting to get involved in research. And I ended up meeting a lot of really cool young people who are already doing that. And I was so new and so fresh, and I really hadn’t considered people living with disabilities until I became disabled. I think that’s the truth for a lot of people who aren’t born with a disability.

Cheryl:  07:42

Absolutely, you know, and I have so many parallels to you. Sorry, I’m like, I’m not making this about me. But I got diagnosed right after I went, did my study abroad in my senior year of college in Australia. But I, I know, I was lucky enough to be able to finish it. And because it was still, I was a mystery, I had mystery illness, but it was not as severely debilitation as what it sounds like you were going through. It was more like, I could still use that kind of athlete mindset of like, I know something’s wrong, I’m just gonna push through it, you know? I went to various doctors got different scans, got different tests, and no one knew. But yeah, it’s like, life interrupted, you know. Like, you have this plan for your life. And if you’re a high achieving person who is used to saying, “I’m making a goal, I’m gonna achieve this.” And, you know, it’s very — so disorienting to, you know, as a young person be told, “Well, you have this problem that we actually don’t know how to solve.” You’re like, what? So, what was — I have, like, 9000 questions. 

But the difference between you and I is that I got a very definitive, like, they were like, “All of your RA-related blood tests are like off of the charts, like the charts are high enough, like you have moderate to severe rheumatoid arthritis. Like, you need to get on this medicine.” And then, I was very lucky that the medicine put me into remission for six years. So, I was able to kind of have this — this was my hero’s journey, right? I figured out I have a problem, figure out it was RA, took the medicine, felt better. And I thought that was what I was gonna do the next like, seven years of my life. And then, then I had to contend with, oh, this is actually more complicated six years later. But in your case, it was like, it went from complicated without any sort of framework of what it is to it’s still complicated, but we know it’s maybe something autoimmune sounding.

Catherine:  09:29

Yes. Yeah. That’s accurate. It is autoimmune in nature. It’s rheumatologic in nature. It’s immunologic. I do have a diagnosed immune deficiency, which is a subclass immune deficiency. So, it was, like, a little sneaky trying to figure it out because it was a special test for this one IgG subclass that isn’t tested on. That’s how it was explained to me. I definitely have PoTS, I definitely have some sort of EDS/MCAS interaction, definitely have chronic migraine. But all of these are sort of, I think, the chicken before the egg was this autoimmune condition and it’s now gone untreated. I don’t have, you know, I don’t have an immune modulating treatment like most people with autoimmune conditions get once they have a diagnosis. 

For me, it’s really been just plugging holes on the leaky boat, you know, sticking band-aids on, you know, a war wound. It’s like just trying to, like, hold things together so I can have some semblance of a quality of life without really knowing which biologic, let’s say, for example, to invest my time and body into. It was really just like, let’s get her over the finish line of college, then we’ll see how she’s doing. And if we want to move forward with some sort of immune modulating treatment. So, it’s really just been symptom management. I don’t even know, I’ve probably gone through over a hundred medications at this point. And I’m on a regimen that allows me to work remotely to do things that bring me happiness. But it’s really every day, when is the shoe going to drop? If we make it to the end of the day, and the shoe didn’t drop, that’s a major win. Usually, at some point in the day, I have to pause my life and address what my body needs. 

And I thought I was, like, so special and unique, you know, being like, oh, they don’t really know what I have, you know? Like, yeah, I’m not like other girls. Wrong. Most people don’t have a diagnosis for a long time, or don’t have a clear diagnosis, or get misdiagnosed. And, unfortunately, the people who do have a diagnosis — well, I mean, not unfortunate for them, like, awesome for them. But getting a diagnosis quickly is really not common. So, yeah, that’s been the more I talk to young people, the more it’s like their diagnosis is delayed because, “You’re too young to be that sick. You’re not supposed to be in that much pain. Other kids your age don’t complain about this.” And the sexism when you’re a young adult, especially. So, yeah, I think I luckily fell into the hands of people who are like, “Right, yes. We don’t know what this is. But we’re going to help you anyway.” I think a lot of people fall into the hands of, “We don’t know what this is. See you later.”

Cheryl:  13:04

That’s what mine was. Actually, not just see you later, but, “Go to psych, it must be psych.”

Catherine:  13:09

Yeah. Yeah. 

Cheryl:  13:10

And I don’t know is there anyone who would have their body be ravaged by an unknown diagnosis with lots of diffuse symptoms across their body that wouldn’t feel a little anxious about that. I’m like, is it actually, like, why — anyway, that’s a whole other issue of, yeah, I definitely fell in that category of, “We don’t know what’s wrong with you. You must be just crazy,” quote unquote. Yeah, it’s like, and it’s so frustrating. And it’s so funny, because I’m 42 now. And I’m still, I’m like, “Yeah, us young people with arthritis.” And I’m like, wait, because now I’m a mom to like a 10, you know, an almost 10-year-old and I know I’m not young anymore. But it’s weird because the word ‘arthritis’ for most people conjures an idea of an elderly person. I’m like still ‘young’, quote unquote, for arthritis. But I’m not a young adult anymore. Like, I’m not a, you know, in my 20s, like you are. So, I really like what you said. And I remember from when — I got diagnosed was 21, by the way, just for the record of anyone listening — so, similar age to you, and at the time of your diagnosis, if I did the math right. Wait, how old are you?

Catherine:  14:19

I was 21. Yeah, in 2018. I’m 25 now. 

Cheryl:  14:23

Okay, okay. Yeah, exactly same age. And you said, you know, you never thought, you’d ever really thought about disability in young people one way or another, right?

Catherine:  14:35

I hadn’t, you know, except that like one kid in high school who has cancer and everyone does Relay for Life for him one time then we all kind of like forget about it, you know? Like there’s always that one kid where we’re like, oh, yeah, like, oh, life is so short, you know, oh, don’t take things for granted. And then, everyone just kind of like gets on with their high school, whatever shenanigans And aside from that, I didn’t know people in my high school — people did not talk about, when I was in high school, which was like 2012 to 2016-ish, we were not talking about gender, race, disability, neurodivergencies, you know, queerness. We weren’t talking about what it’s like to be an immigrant. We weren’t talking what it’s like to live in an immigrant household. We weren’t talking about socioeconomic status. I mean, truly, when I graduated high school in 2016 is when that sort of those terms slipped into the norm, or were more slipping into the norm. 

And it wasn’t really until Trump was elected when I was in college that all of a sudden that was a part of common discourse in the college classroom, those terms, these concepts. So, I think I kind of missed the boat in high school for discussions or safe spaces where differences were like celebrated or acknowledged in the first place. So, when I became disabled, I was like, I literally didn’t know anybody else in my life who had ever had a chronic illness. Not RA, not Crohn’s, not even somebody with like a T-1 diabetes. Nobody. So, it was super confusing to me to, like, look in the mirror, see my same body if I didn’t have an IV or a PIC or a port access, and I looked exactly the same. And I’m like, okay, well, I’m not allowed to call myself disabled. Like, I’m not missing a leg. I don’t use a cane. You know, I didn’t even have a handicap parking pass at the time, which oh, my God, can I tell you? That is the best, best thing in the world is having a handicap parking pass. I have one now, it saves my life. But it was super confusing being a young adult, not looking disabled. I didn’t know I was allowed to call myself disabled. That was a term for, like, people who really, were really sick. Or who — yeah, it was confusing. It was so confusing.

Cheryl:  17:14

I — no, I appreciate you, like, this is very vivid description of invisible illness. And I think, you know, we’re often aware of acute injuries, or acute illnesses, like cancer used to be. Now, kind of cancer’s considered a little more of a chronic illness for most cancers, if caught early, but let’s just say, you know, you either overcome your battle — you break your leg and you get better — or you, you know, you have cancer and you overcome it. Or there, you don’t have a framework from a young age, even as a child for, you know, some people get sick and never get all the way better, but they also don’t die. Like, they just exist in the world. And like, and I’ve actually had this book idea for a few years called, like, ‘The Owie that Didn’t Get Better’.

Catherine:  18:06

I love it, I would buy it.

Cheryl:  18:10

I know. And that’s like, I just think we need, like, and even my son. Like he’s, you know, over the years, it’s been fascinating to see it through the eyes of a child of trying to, you know, I’ve always been really honest with him, like, you know, like, and I want him to know, from a young age, like some owies don’t get better, but that doesn’t mean that all owies don’t get better. But it also doesn’t, you know, it’s we have to learn how to cope with the discomfort or the uncertainty and discomfort. And I’m curious about the friends, your friend group or your peer group, like how did — a lot, oftentimes, with younger people in their 20s or late teens who get diagnosed, it’s very, it can be very isolating, because it’s hard for you to wrap your mind around. And now you’re asking your friends to wrap your mind around it. You’re like, I can’t even wrap my mind around that. But I’d like you to try to wrap your mind around it because. 

Catherine:  18:55

I think if I could go back and give myself some advice when I first got diagnosed at 21, it would be not everybody is going to weather the storm. And that’s okay. And I had friends who, for whatever reason in my life and their life, we couldn’t weather the storm of what was going on with my health together. And I don’t blame them. And I don’t blame myself for the fact that our friendship didn’t work out or it didn’t stand the test of time. Because I had no idea what was happening to me. They certainly weren’t going to have a better understanding than I did. And what was happening to me was scary. I was in and out of the hospital; COVID hit. Everyone was isolating. I’d already kind of been living like that for two years. So, when COVID hit my family was like, welcome to our world. But I was like in and out of the hospital for not COVID-related things three times in 2020. And it was scary for my family, for my friends. 

The friends who did weather the storm, my advice to, like, to myself and to other people who are trying to support somebody with chronic illness, and haven’t necessarily experienced it for themselves, is to set boundaries and to do your own research. Don’t expect somebody with chronic illness to teach you everything about the way they live their life, because sometimes they won’t have the energy to. But also, the greatest form of love and appreciation and understanding is if you Google it yourself and ask them questions. And then, with the setting boundaries thing, it’s okay to say to a friend with chronic illness, “I don’t have space to support you right now. Do you have somebody else you can reach out to?” Or, “I love you so much. It sounds like you need somebody who can be really present for you right now. I can’t be that person in this moment. Could you call your mom or someone else available?” And those relationships, those friendships, even in romantic relationships, that gives me — it builds a lot of trust. 

Because not everybody at every time of the day is going to be able to drop everything and listen to you vent, or feel secure enough to hear about really hard things like being in chronic pain, or having a high pain day, or feeling incredibly distressed by the existential, early mortality of, you know, of you or, you know, like, these are really heavy subjects. And so, even my family, too. There are ways that I cope with it in therapy, poetry, song writing, writing my column. And then, I have different people that I go to in my now strong network for different things. And I wish that my younger self had had somebody just tell her that.

Cheryl:  22:17

Yeah. I think, again, I think of it from a lens of like social scripts. And again, going back to pediatrics, my first career as an OT was in pediatrics, children with actually developmental disabilities. I was always very aware from young age, because I had some family members with developmental disabilities. So, I was very, very aware of like, you know, cerebral palsy and autism spectrum, global developmental delay, or intellectual disabilities. I was not aware of chronic illness at all. But, you know, that we learn through social scripts that we are taught at a young age. And we don’t have a script for being there for somebody who’s in pain, when there’s not — everyone wants to get well soon. You’re like, but I’m actually not going to get well soon. Because I’m chronically ill. And chronically means forever. 

But I know what you mean, you’re saying it as like a shorthand for ‘I hope that you shortly are not going to be in as much pain as you are currently’. But it’s hard. And I think you’re so right, that we can’t expect everyone in our life to be what we need at every moment. And maybe,  getting a little eclectic collection of different people. I don’t know if you’ve found this, but I had a couple of friends who actually were more there for me when I was doing poorly. Or actually, that was their superpower was like they — and then, but when I was doing well, like they were either like maybe a little jealous or a little, like, just uncomfortable for whatever reason, and it’s like some people, you know, will actually be better at being there for you when you need help. Which surprised me.

Catherine:  24:02

Yes, that is true. That, yeah, I wish I could tell my younger self, like, just wait, who comes out of the woodwork. You know, it was — so, I had my graduation party for university this past May of 2023. I invited everybody who had ever had a hand in helping me cross the finish line with school, whether it was a physical therapist who came to my house during COVID. And then, when I went to school, I didn’t see him for many years, but he had a hand in getting me back on my feet well enough to be independent enough to go back to school. You know, I invited my doctors. I invited a doctor who took care of me one time in a hospital that changed my life. I invited pharmacy staff from my local pharmacy who took care of me. Anybody and everybody. And even if they didn’t come, just a way to say, you know, let me give you some cupcakes and some food and a hug. And it was like the coolest. It was like the most epic, intense, like, Avengers collision of worlds. Because all of these people showed up who did not know each other at all. Only a few of them had met before. 

And I just got to walk around my house and hear about the way these people were connecting was over me. And at what point had they met me, and how did they help me. And then, they would turn to somebody else and be like, “Oh, how do you know Catherine?” Or, you know, like, “At what point were you involved in her life?” And I just sat there and was like, wow, I really have a village. And it was very special to see all of them in one place. Because over like six years, I had met all these different people all over Southern California. And now they’re all in one place meeting each other. It was so cool. It was so cool. I was like having an out of body experience. But it really does take a village. And building that village took time. It took years. But if you told me it’s going to take years to like, you know, figure out how to be independent, I would be like, I’ll give up now, you know? All right, you know, might as well turn and give up. So, I think it’s all about just doing the next right thing for you. And then, you can turn around and look at this wake of right things you decided to do for yourself with the information you had at the time. And suddenly, you have — you’re like little Pied Piper, you have all these people who have followed you in your wake and helped you get to where you are today. 

Cheryl:  26:56

That is such a fabulous idea. I want to do that now, like have a party where I just invite everyone who’s helped me over the years. Because, you know, you’re right. It’s like, it’s such a — it’s hard to put together, hard to put it put a word to it — but like a collective experience. But you’re going to this facility for this, you went to this person for that. And yeah, and it’s such a massive labor of executive functioning, and to manage it all. And you never get this kind of moment of cohesion unless you’re in like a multidisciplinary center, you know, that’s kind of a very rare experience. So yeah, I love that. I feel like this should be a normal thing. We should do this. I know you maybe can’t do it like every single year. But oh, I also meant to ask, I’m sorry, I just didn’t remember to ask this earlier. What did you study? What did you get your degree in?

Catherine:  27:49

Oh, so, I started as a poli-sci theater double major at the first school that I went to, and then I transferred to a school closer to my care in Los Angeles. And then, I did this major, it’s an interdisciplinary major called law, history, and culture. And you can take classes in anything law, history, and culture. And when I went back to school, I really knew I wanted to do patient advocacy, disability advocacy work. And so, I chose this major so that I could tailor it to doing you know, all classes related to patient advocacy, healthcare, narrative medicine, disability law, stuff like that. And then, I was also a theater minor because like, I’m a theatre girl at heart, and I’ll never let go of it. So, that’s what I majored. You know, there’s no patient advocacy major undergrad. UCLA just announced a disability studies major undergrad. I think it’s one of maybe three in the country. There’s three to five undergrad programs where you can major in disability studies in the US. There are some in Canada. But even grad programs in the US there’s very few, there’s very few in Canada. So, I went to USC, but plug for UCLA for having a disability studies major undergrad.

Cheryl:  29:13

Oh, that’s, yeah, I went to a liberal arts undergrad. So, there was definitely not — not that disability wasn’t addressed at times. Like, I took a medical anthropology class and that was really fascinating. Yeah, that was so, medical anthropology is so, so fascinating. But we didn’t have, there was no, like, actually practical majors. I mean, I just majored in psychology, but you know. But and then, are you are you in academia now?

Catherine:  29:41

Well, technically, yes. So, I’m on a PCORI-funded project that is run through University of Wisconsin River Falls. And one of our project leads is faculty there. And the PCORI-funded project is called the Young Patients’ Autoimmune Research and Empowerment Alliance, or YP AREA for short. And we are like a council of young people all across the US, we’re 15 with three project leads, who are basically professional, young patients with autoimmune conditions who are trained to work with researchers. So, we have this abundance of research about young people with autoimmune conditions that doesn’t actually involve young patients in the research process. And that was —

Cheryl:  30:33

Why don’t they include the people that this is about? What could that possibly help? Just sarcasm font.

Catherine:  30:38

Yeah. So, I actually did not join the group with any formal scientific research experience. That’s the point. The point is that anybody can join, learn how to tell their story, do some basic scientific dissemination, research process training, and go forth and be an advocate in research spaces. And help trusted advisors and adults who are researchers also themselves to ask questions about the process, make sure they’re not be taken advantage of, you know, be able to recommend things and language that researchers will understand, like work together with researchers and make it as a cohesive and efficient process as possible. But the young people I work with, I joined because it was posted on Savvy, on Savvy Cooperative. 

Cheryl:  31:31

I interviewed Jen for this podcast, she’s amazing. Yeah. 

Catherine:  31:36

So, she — my mom sent it to me and was like this, someone’s forming a council. And this sounds like you should be on it. And I was like, heck, yeah. Young people? Like, sign me up, I want to make friends. I was like, I don’t really care what I’m doing. I just wanna make young friends with chronic illness. And it was during COVID. So, it was gonna be all virtual. And that was like, great, that’s accessible. Joined it and was like, wait a second, I really like research. And I had already been reading a ton of it for my conditions, because I’m like, the more information I can get my hands on, the better. I’m like, all of those, like, stalking cute boys, stalking potential dates, or like, sleuthing for a friend. 

All of those skills came in handy when I was doing research, like looking at research and reading it and being really discerning with the information that was — honestly, like, what’s the word? Information that was having a trickle down effect to the medicines and treatments available to people my age, to people with my conditions that were affecting legislative decisions. And I was like, well, well, well, this research thing, this is kind of important. This is kind of a — we got to get in on this. Because it’s the farther up the ladder you go in terms of power, especially in the US, people are using research to make real sweeping decisions. And you can kind of cherry pick research that supports an agenda. And so, how can we get young people involved in the very, like, fundamental, most bottom layer of how policy and legislation is often decided, which is the data that these legislators are making decisions based off of research?

Cheryl:  33:40

So, we’re talking about scientific research? 

Catherine:  33:42

Yeah, scientific research. Qualitative and quantitative. And for our listeners, qualitative is usually has to do, something to do with, like, the quality of the experience of something or someone. It’s not — it can be numbers driven, but it’s not necessarily hard data. Quantitative, quantity, think numbers. Like, I can probably explain that better. 

Cheryl:  34:07

Yeah, no. Like, so typically, qualitative data is derived from interviews or, you know, patient reporting. This is what I felt like, you’re right, that you can put a number on it right on a scale of 1 to 10, how much pain you were in, how much pain you were in, a before/after X-intervention. But the real, the real quantitative research tends to get a little bit more, you know, visibility in policy and stuff like that, because it’s, you can’t just argue that, well, it’s just someone’s perception like pain, saying, I’m rating my scale and pain — saying I’m rating my scale, my pain on a scale of 1 to 10 is still subjective, even though you can put a number on it versus my blood markers are X. Like, you couldn’t be like, “She just thought they were X,” like no, they were X, you know, they were 17 or 240, you know. So, yeah, and PCORI stands for Patient-Centered Outcomes Research Institute. And so, I’m gonna put a link to them in the chat too — and not the chat, what am talking about — in the show notes. In the chat, like this is a live? No, it’s not. And I just think it’s something that I never thought — I was not plugged into anything. There was no, when I got diagnosed in 2003, there wasn’t any social media, you know, that it was all totally different back then. So, right now, it’s great that people, through the power of the Internet, can learn about these opportunities. And was your first — so, was your involvement with PCORI the first time you got involved? That was the first time you got involved with research, right?

Catherine:  35:48

It was the first time I was involved in formal research, you know, with an IRB that had a huge source of funding from an institute. And quick plug for YP AREA, we are recruiting right now. So, if you are 16 to 23 with an autoimmune condition of any kind, it’s @YP_AREA on Instagram. You can also go to our website. Please come join, apply. And so, quick plug for that. But to answer your question, my first formal research experience was actually in undergrad. I was in a class called ‘The history of discrimination’ at the university. And it was a class where you are meant to directly examine how the university has participated in discrimination against any group in the history of the university. 

So, some people chose racism; some people chose homophobia. Me and my partner were like, “Well, what about disability discrimination?” And we very quickly found out that, much like doing the hard history projects that are that are pretty popular now with universities examining their historical relationship with slavery, nobody has done a hard history project on disability discrimination. And we were looking for other similar projects at universities and couldn’t find one. So, we decided to do our own. And it was like a treasure hunt, finding these old, old articles, these old pictures, these old testimonies. We were like digging through the archives at the university. And that’s when I got the bug for research. And I felt like a little — I always wanted to be a spy growing up because I was like, acting and political science? Spy.

Cheryl:  37:49

You are a spy.

Catherine:  37:52

I felt like a spy. And I love a good, like, I love tea, I love gossip. And so, we definitely were getting our fix from doing this research. And so, that was my first experience into research. And it was by accident. It was, like, truly by accident. I used to think people who did research who were young, I was like, you’re so cool. Like, you’re like, whatever, 16-year-olds were like, “Yeah, I do research.” And I’m like, how do you even get into that? What does that even mean? That’s, like, I don’t even understand how that works. It can literally be as simple as something like taking a class and then being like, oh, I kind of want to just like continue this paper that I’m writing or continue the subject that I’m finding really interesting. And bam, you’re doing research. That’s it. 

Cheryl:  38:42

And, you know, I think if we zoom out a little bit to like the history of — sorry, I like to nerd out, but hey. Yeah, the history of like scientific research and the history, it kind of mimics the history of the patient/doctor relationship where it used to be, you know, let’s say, you know, I remember my mom was telling me about when she was, you know, just some of the horrible things that her doctor said to her when she was, you know, in labor with me. Anyway. You know, how the doctor used to be the voice of God, you as the patient had no power, no say. It was like the doctor said, “You do this, you do that. Don’t do,” you know. And now, there’s been a transformation where patients are ideally — not actually in practice, but the best practice — is for patients to be equal partners in managing their care, particularly for chronic conditions. And then, that’s the same with research, scientific research. 

Let’s say a research, a research looking at rheumatoid arthritis. In the in the olden days, it used to be well, we just get a bunch of people with PhDs together. And then, the only role of the patient is to come into the research lab and, you know, either answer a questionnaire or participate in an intervention. Like, let’s say from my world as an occupational therapist, it could be an intervention where you are given an exercise program, just something really simple, like you do exercise for 30 minutes, 5 days a week, with the people in the study and, you know, with the researchers. And then, you have no say in anything else about, you don’t — you don’t, as the patient, you don’t get to contribute to the research design, you don’t get to give any feedback. You’re just kind of a rat in the scientific study. Nowadays, there’s such a movement, and I don’t even know what the right word for it is other than just patient partners in care. Patients are seen as partners in the development at all stages of scientific, you know, research studies.

So, they would say — I remember Jen Horonjeff, who I’m going to put her — I always pronounce her last name wrong — but I’m going to put a link to her podcast episode. But she said, you know, she was on like an FDA, like, she’s a really amazing patient advocate. And she was on some sort of, you know, FDA panel. And she was like, “Well, why aren’t you guys asking about fatigue?” Like, this is like, my pain is one thing, but my fatigue is really bad. This is Episode 20 of the Arthritis Life podcast. And they’re like, “Oh, we didn’t think about asking about fatigue.” Like that is why you need patient partners, right? To tell you what’s actually important to patients. So, with YP AREA is it right to say — I’m looking at the website right now, just so I’m not saying anything wrong — but that you help patients, young people, become involved in research studies? 

Catherine:  41:33

Yes. So, we, we’re kind of like a clearing house. We have requests coming in from researchers all the time, like, “We want to do good, we want to do right by young patients. Do you have people that you can give us with X,” like, basically, we’re trying to matchmaker sometimes with researchers who want to involve young people. The flip side is we also do education for young patients. So, we will put together materials for a young patient who’s getting involved in research for the first time, and we’ve created some materials. We’ll also give materials to providers and community partners who have young patients who are asking them questions, and they want to pass along our information. But we have a few different functions. And one of them is also offering our own research and doing research by us, for us. And the, really, the ethos and what makes our group different from other organizations is that every decision made by the group is democratically done by all young patients and all members of the group. 

And the social community aspect of things is huge. It’s we meet monthly; we have weekly meetings with different committees. And it’s completely a group run by 16- to 23-year-olds, and we get stuff done. Like, these are motivated people. I think young people often get the reputation for being lazy, or not proactive, or I don’t know, just being labeled as selfish or self-interested. And I’m like, no, we just get, we just know too much nowadays. We have too much information at our fingertips to feel like we’re overwhelmed by, like, the death of the planet, by gun violence, scared to go to school, you know, people who are making decisions about our bodies. And like, yeah, no wonder we’re a little pissed and angsty because we have to clean up a big mess. A very big mess. And so, there’s a lot of really good, feisty, passionate energy on the council. And we really all help each other channel it towards working within systems that already exist and can do good, and helping refine those systems.

Cheryl:  44:22

That’s, yeah, that’s amazing. I think this, yeah, the young people — I feel so old thing saying this — the young generation currently is just, like, so much more, you know, they’re just so much more — how do I put it? Like, understanding of systems. I had no idea what systems were at play, like systems of oppression and like things like that. I kind of, I was just really naive when I was your age. And so, I think it’s I’m just really inspired by the work that you’re doing and  I definitely think the young voices needs to be heard, you know, in research. And I think I often do encourage people, you know, who are feeling in a state, regardless of their age, if people are feeling really frustrated and disempowered with like the healthcare systems and stuff, you know, becoming involved either in research or within like legislative advocacy is so helpful. If you have the mental energy, the cognitive and emotional energy, to do it in and you don’t have to do it on your own. You can go through the Arthritis Foundation or Creaky Joints or other, you know, Autoimmune Association, they’ll help hook you up with your local legislator. And you can say, “Look, this is what step therapy did to me, this is how I have suffered as a result of these inhumane systems. And this is why we need, you know, health care reform,” it’s like, it gives you something positive that you can do to hopefully change, right.

Catherine:  45:50

Yeah. I think my best tip to people who want to like get their feet wet is if you’re if you’re on social media — it took me a while to learn how to do this, to make it to make Instagram, for example, a place that wasn’t triggering, honestly. And so, I have an Instagram for my column, it’s called, my handle is @ItsChronicallyCatherine, spelt with a C. And I made it such that the people I follow, if you just scroll who I follow, and you follow all of these people, these are good people who are doing good work and are great educators. Go give them a follow, go see what they’re about, and see if some of that resonates with you. It made me feel a lot less alone, especially during the pandemic. But there are other young groups like Generation Patient, which is a fantastic group doing a lot of legislative and policy activism work on behalf of young patients. They are a fantastic group to follow. Also, like YouTubers, just seeing people live their daily life with disability and whatever still be into fashion or still being into sports. And, you know, it was super cool. 

You can also do things like apply for fellowships, the CIELO Center for Disability, Law, Policy and Innovation at LMU in Los Angeles, they have a disability law fellowship. It’s a year long; it’s fully remote. There are things you can do formal and informal, just to get your toes wet. So, there’s a lot of ways to get involved. And each way can be tailored to what’s most accessible for you. And that’s what’s kind of cool once you realize you’re part of the disability community is like, ah, we’re so here to welcome you with open arms. Like, it’s like, no, get over here. You’re one of us, yeah. So, that was kind of the best part about coming to terms with my identity as a disabled woman is, you know, the term is it is an accurate descriptor, but it drops you into the world of people who get it and when somebody who hears that word and also identifies as being disabled, it’s like, you guys are speaking a secret language.

Cheryl:  48:11

Completely, and I think — [Siri speaking] “I found this on the web.” Oh, I found this on the web. Are our devices listening to us? Before we go to the rapid-fire questions, I want to — I didn’t prepare you for this question. But I think you’re going to be able to, you’re going to be just fine. But, you know, when I grew up and actually even when I was teaching at a, I was teaching at an occupational therapy assistant program, and the textbook — this was in 2016 — said, “Always use person-first language when talking about disabilities.” It’s person with disability, person with autism, person with, because it’s dehumanizing to say ‘disabled’, we don’t want to say that, or ‘autistic’. And I am saying this to frame the question to you, which I know kind of the answer, but for the audience, can you explain why you identify as disabled and why someone might choose that over ‘person-first’, quote unquote, language?

Catherine:  49:14

Yeah. So, I have an A side and B side response to this, for those of us who had cassettes growing up or record players. The A side is words matter. And languaging matters. Being cognizant of how words have impact is super important. My mom, when I started identifying with the word disabled, it was literally just, like, one week I just started saying it, and I didn’t quite realize that I did. And at the end of the week, she was like, “So, I noticed that you’re using this word disability and disabled. Can I ask you about it?” And I kind of told her, oh, yeah, like, I don’t know. I just, it just makes sense. It just feels like it makes sense for me. And I ended up writing a column on sort of that journey. But she also then asked, “Well, you know, help, like, help educate me, you know, I thought it was supposed to be person with disability.” And I validated that and was like, thank you for asking. And thank you for thinking about that, and being proactive about your language and your words, because that really does matter. 

The B side is I don’t think that much about how I language the word ‘disability’ anymore, because it’s such a common part of my vernacular now. I think in specific instances, it can make a big difference. And it it can describe someone’s lived experience in a way that may be truest to them. For me, personally, I’m like, if I’m using the word disability or disabled, if I’m talking with you, even when I’m talking to my friends who don’t have a disability, I don’t even notice that. I don’t frankly care. In those instances, some instances I do, you know, if I’m speaking or if especially if I’m writing. So, I think, I think it’s important to be mindful of that languaging. And there may be specific instances where that really does matter that you use person-first language, but in my every day, I really don’t care. It doesn’t bother me a whole lot. And I also think there’s nothing wrong with having a preference and expressing that. 

Cheryl:  51:46

Yeah, I appreciate the nuance in your answer. And it’s definitely it’s not a unified preference. There’s not a unified preference that everyone prefers to be. And I think that the assumption, what I was taught in school, and I actually had to, I pushed back to my supervisor, when I was teaching at the OT assistant program. I said, this is not, I’m not going to teach them that they have to use person-first, because some of our patient communities do not like that, like, and especially like, I don’t know, if you’re aware of like the Autistic Self-Advocacy Network, but they have, they’re saying, in general, the preferred term that they are recommending is ‘Autistic’ versus ‘Person with autism’, because the person-first language, when it comes to something that affects your identity and the way you view the world so deeply, like, let’s just say autism, it is — the presumption of ‘Person with’ is to say, “Well, you’re a person first and then you have this terrible thing.” Like, you’re a person with cancer, you’re a person with, you know, rheumatoid arthritis. 

Oh, yeah. If I could choose to not have rheumatoid arthritis, I would choose not to, right. I don’t like it. It doesn’t, I’m going to live my best life with it. But I prefer not to have it. Whereas, a person with autism. Well, wait a minute, you’re saying like, you’re still a person, you’re just a person with this problem we’ve got to figure out, you know. So, I think that a lot of people, that they call it identity-first language to say, you know, autistic, or in the case of, let’s talk about disability and disabled, “Oh, you’re not disabled, you’re just differently abled,” or like they’ll say, like, they’re saying, I’m going to be nice to you by saying you’re a person with a disability, because in this almost, like, this way, where it makes it seem like, “There, there, it’s okay, you’re still a person,” of course I’m still a person, you know? So. 

Catherine:  53:41

I like your thoughts on that. Yeah, I hadn’t heard it sort of described in that way. And I think that’s more why I don’t, you know, if somebody likes person-first language, sweet. Sounds good to me, you know, it’s not — it’s like the whole pronouns thing. Like, if you have a specific way like to be referred to, easy peasy lemon squeezy. Sounds good to me, you know, it’s like, it’s not a big deal. Because like, at the end of the day, words, words really matter. And so, yeah, I think it doesn’t bother me if it’s person-first language. But I like how you’re making me think about identity-first language as something, it’s just matter of fact, just the way it is. It’s, you know, I’m not somebody with something. I’m not, like, Catherine with. Like, it’s a part of my many, many, many other identities that I have. But it is an incredibly immediate signifier of my lived experience. And that’s really valuable in some situations. There are times where I’ve had to, somebody has said something to me or a doctor is treating me a certain way. And I’m like, “As a disabled person, that’s really wrong to say.” Or, you know, like, “As a disabled woman, I get treated like that a lot. And the way I’m speaking to me now is inappropriate.” And, or if somebody is — I’ve been on some days recently where people just said the most out of pocket things about disability. And no, no, I just, it’s funny. There’s, like, funny stories. And they don’t know I’m disabled. And then, I disclose. Yeah. And then, I disclose. And they’re like, “Oh, I had no idea.” So, like, it’s an important word. Disability is an important, important word. And so, yeah, it has a time and place and a purpose. And differently abled — I wrote a column on this if you want it.

Cheryl:  55:50

I literally pulled it up. Because you said you wrote one. Disability is not a bad word. So, I’m putting this in the show notes because she’s not going to brag about herself. So, I will. Catherine is an amazing writer. I love it. Right here, you say, “The word ‘disability’ was a word that gave me the same feeling as hearing the word ‘beefy’ — uncomfortable.”

Catherine:  56:08

Yeah, that’s how I used to feel. So, it takes time. Everybody comes to it on their own terms, or doesn’t come to it. I have friends who are like, I don’t really like the word disability. Okay. Sounds good.

Cheryl:  56:19

It’s kind of like the process, it reminds me the process of like, dismantling your own internalized ableism, right? Like, and I’ve had, I have pointed that out to a rheumatologist before, I was once interviewed in a podcast. And that person was like, “Well, you know, like, we’d like to tell patients now, like, you can have a totally normal life with rheumatoid arthritis.” And I was like, yeah, that that word is like, kind of funny to me, to say ‘A normal life’ because I have a kind of funny relationship with that, because it sounds like what you mean is that a normal life is a life where disability is not part of it. You don’t have to worry about because you just take your medicine, and then you’re totally, quote unquote, ‘normal’. And or, you know, and when I was pregnant, “As long as it’s healthy, as long as,” everyone said that, “As long as it’s healthy.” Oh, yeah. I’m sure you’re just, you know, blah, blah, blah, as long as it’s healthy. Everything’s — it’s like, what if it’s not, like, not everyone’s healthy? I’m not healthy, by the way. I know I looked like a cute, little pregnant lady, but I’m not, you know, and so —

Catherine:  57:14

What about me? I’m not healthy.

Cheryl:  57:16

So, yeah, also, there’s that. But, you know, the process is saying, like, there is not only one way to live a beautiful life, you know. And if we say that the only goal of our life is kind of what all my conversations end up being about on the on the podcast, kind of back to, like, acceptance and tolerance, being tolerant of uncertainty. It’s like, what that which you hold, holds you. If you hold this idea that the only way to be a vibrant young person is to conquer your chronic illness and find the solutions to your health issues. And that’s the only, that’s the goal of life. You’re kind of held, that holds you. That means you’re not going to be happy unless you achieve that, where there’s a different way, like, that you’ve built as a testament to your life as you’re figuring out. Like, hey, I’m a vivacious, cool, young, hip — sorry, I’m so 42 right now.

Catherine:  58:13

I love it. 

Cheryl:  58:15

I’m like, we’re cool, right? Like, the mom in Mean Girls. Like, hey guys. 

Catherine:  58:19

That’s so true. I have a quick, quick anecdote and then we can get to the rapid-fire questions. Which is I, I don’t know, a couple years in my diagnosis journey, had this like complete revelation. I was just like, in the shower, you know, minding my own business. I was like, wait. It was like some plans that I had cancelled for the night because I was not feeling well. Like, I can either sit at home and not feel well, or go out and still not feel well. Either way, I’m gonna wake up feeling like shit tomorrow morning. So, I think I’m just gonna go out and feel sick but still have a fun time. That changed my world. I’m like, do it scared. Do it sick. Show up with a migraine. You know, obviously, if it’s gonna really harm you, don’t. But I have gotten to know my body so well that I’m like, Yeah, my head is gonna hurt about the same if I’m going to be at home versus if I’m going to go out with my friends. So, I’d rather feel fulfillment from, you know, by being with my friends even if I have to cut it short. Even if I ca only be there for 30 minutes. Even if my parents has to drive me and I’m 23, you know? That’s the thing. But I’ve just decided to do it sick anyways, and I have really grown my, like, I’ve totally become a social butterfly as a result. And I did it scared at first. And now, I am like really skilled at knowing my body well enough to decide, oh, yeah, I could kind of just go do this sick anyways. And I think that’s part of the acceptance and part of the making a beautiful life despite the infiniteness of chronic illness.

Cheryl:  1:00:12

Yeah, that’s so beautiful. I’m so glad we’re recording this.

Catherine:  1:00:16

Yay. All right rapid-fire. 

Cheryl:  1:00:18

Okay, rapid-fire, which you know me well enough to know now that I’m not capable of actually keeping anything rapid-fire but we’ll try. Aspirational goals. Okay. So, best words of wisdom for newly diagnosed patients?

Catherine:  1:00:31

Oh… [Pause] This is so hard.

Cheryl:  1:00:41

I know. Do it scared, do it sick? I like what you just said, it was great. 

Catherine:  1:00:45

Yeah, yeah, maybe that. Or take time off. Take a month off. It’s gonna change your life. Step away from work. Step away from school. Take the time off. Nothing is more important than your health. If you can, obviously there are situations where, you know, that’s just really impossible. But if you can, just say no, take time off. 

Cheryl:  1:01:10

Yep. Don’t wait till it gets worse to take time off. Do you have a favorite arthritis or chronic pain gadget or tool in your toolbox? 

Catherine:  1:01:20

Oh, yes. It’s called the box. And I made it during COVID. Because I would have to lie down because my neck would hurt so bad every 45 minutes when things were flaring. So, I took a cardboard box, one of the ones that my medicine came in. I laid in the box underneath it with the opening, obviously, like so that my shoulders could go into it. I’m lying flat on the ground. Cut out a hole in the top of the box the size of my phone. I placed my phone on it. And then, I could watch the show while I was lying down icing or using the massager on my neck. And whenever I get cranky, my family would be like, “Catherine, go lie in your box.” And I — patent pending. Like, I’m making this thing. I know they have it on Amazon. Yeah, but I mean, the box was free. It’s probably $2 at Home Depot. Make yourself a box.

Cheryl:  1:02:17

Accessibility 101. We need to do a video on this. In all your spare time and my spare time. We should do video showing this. 

Catherine:  1:02:25

Yeah, we totally should. But yeah, that one’s basically free. So, make yourself a box.

Cheryl:  1:02:29

Okay, I love it. This is not what I was expecting. And that is amazing. Do you have a favorite book or movie or show you’ve been watching recently?

Catherine:  1:02:40

Oh, my God. Community. One hundred percent.

Cheryl:  1:02:43

Classic.

Catherine:  1:02:45

Community. And then, for a book. Obviously, anything Michelle Obama. I’m a huge comedian autobiography reader. Tig Notaro’s book. Tig Notaro is a comedian. 

Cheryl:  1:02:55

Yeah, I listened to —

Catherine:  1:02:56

She had a double mastectomy. 

Cheryl:  1:02:58

Yeah. I’ve listened to her podcast. I haven’t read her book yet. 

Catherine:  1:03:02

Oh, my God, read her book. Tig Notaro changed my life. Dark humor, if you like that kind of stuff, what she went through with cancer. And yeah, she’s hilarious.

Cheryl:  1:03:09

She is great. If you — did you hear her interview on the Conan O’Brien podcast? It’s really hilarious. 

Catherine:  1:03:15

Okay. I’ll go listen to that. 

Cheryl:  1:03:16

She’s so good. Okay. Do you have a favorite, like, mantra or inspirational saying?

Catherine:  1:03:24

Yes, it’s actually right here on my computer. It’s a little picture of a dancing skeleton. It says, “I may be chronically ill, but I’m also chronically fabulous.”

Cheryl:  1:03:31

I love it. I love that. That’s so great. That’s so great. And then, two more, what’s something that’s been bringing you joy recently?

Catherine:  1:03:41

[Pause] Doing things where I show up my for myself without an audience. Yeah. So, like, doing, like, basically showing up for myself and doing things that make me happy, even when there’s no audience. No one to say, “Good job,” no one to say, “Look at you go.” No one to say, “That’s awesome that you do that.” And for me that’s been surfing. It’s just been, like, I’m just not going to tell anybody that I’m going and I’m just gonna go do this for myself and show up for myself once or twice a week. Get out in the water, do it. There’s not an audience. No one knows I’m out here. No one’s gonna — and those things have been incredibly fulfilling.

Cheryl:  1:04:33

That sounds amazing. I want to move to San Diego now. 

Catherine:  1:04:35

Yeah. No, honestly don’t come here though. Like, because it’s so expensive to live here now. 

Cheryl:  1:04:43

Yeah, I went to a conference in November, still recovering my wallet from that. 

Catherine:  1:04:48

Honestly, truly, so maybe wait a little bit.

Cheryl:  1:04:51

Okay. I’ll wait a little bit. Okay. What — this is kind of a little bit redundant of things we’ve already talked about. But what does it mean to you to live good life and thrive with chronic illness?

Catherine:  1:05:06

To be able to participate in the things that make me happy, even if it’s in an accommodated way. So, like with surfing, would love to go every day. Nope. I can’t handle that. I go once or twice a week. With exercising, you know, used to love to do multi-day hikes, backpacking, can’t do that anymore. Instead, I do in-and-outs and I sleep somewhere comfortable, you know, make sure that I have access to medication, so and not getting down on myself and thinking I’m weak or not as strong for doing it in an accommodated way. 

Cheryl:  1:05:39

That’s huge. That’s huge. That’s like, I’m gonna give you like an honorary occupational therapy degree because that’s like the whole purpose of our field, is figuring out how to find that ways to accommodate and still find ways to participate. I love it. So, I’m going to put — thank you so much — I’m going to put your social media links and links to in the show notes which are on the Arthritis Life podcast, arthritis.theenthusiasticlife.com. That’s my full website. And I’ll as well link to the YP AREA and PCORI, and yeah. I’m so good at linking, not to brag. No, but this was so great. I really appreciate you taking the time and hopefully we’ll chat again, we’ll chat again someday, I’m sure. There’s so many more things we could talk about.

Catherine:  1:06:33

Absolutely. 

Cheryl:  1:06:34

Yay. Bye-bye for now. 

Catherine:  1:06:36

Thank you for having me. Bye, everyone. 

Cheryl:  1:06:38

Bye!

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