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What’s it like to be a Counselor with Psoriatic Arthritis? Amber’s Story

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Summary:

In episode 151 of The Arthritis Life Podcast,  Amber reflects on what it’s like to work as a mental health counselor while managing psoriatic arthritis.  She also shares some of her best mental health tools for life with chronic illness including: having boundaries, allowing yourself days to “just be,” acceptance and family based therapies, and leaning on tools like therapy to thrive. 

 They also discuss the importance of support and community, and Amber shares her experience in Cheryl’s Rheum to THRIVE program. Cheryl and Amber emphasize the importance of adaptability, finding joy in everyday activities like cooking and cheering for their favorite sports teams, and embracing flexibility in the face of unpredictability.

Episode at a glance:

  • Personal Stories of Resilience: Amber shares her journey of managing psoriatic arthritis while balancing work, friendships, and her love for cooking and sports.
  • The Power of Adaptability: Embracing flexibility and pivoting when necessary is key to maintaining a fulfilling life despite chronic illness challenges.
  • Therapeutic Insights: Cheryl and Amber discuss the importance of therapy, setting boundaries, and giving up some control to better manage health and wellness.
  • Support Networks: Amber highlights resources like her counseling practice, the Welcome Project PA, and a peer support group for those living with chronic illness.
  • Lighthearted Moments: Fun anecdotes about Amber’s Taylor Swift-themed party, her love for the Eagles, and her relatable Instagram posts featuring her dog and food.
  • Encouragement for Listeners: Cheryl and Amber leave listeners with hope, showing how living a good life with arthritis is possible by focusing on joy, adaptability, and meaningful connections.

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:

Amber Lynn Connell

I’m Amber and I’m a therapist who is living with two different autoimmune diseases (psoriatic arthritis and Crohn’s disease). I work with clients who also have chronic illnesses. I’ve been very active and a bubbly energetic person my whole life. But managing my symptoms has caused me to need to learn new coping skills and get to know my “new” body all over again. Cheryl’s group helped me immensely in 2023 when I was dealing with a year of flares and felt super anxious and depressed about my health.

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.

Episode links:

Full Episode Transcript:

Cheryl:  00:00

I am so excited here today to have Amber Connell, welcome to The Arthritis Podcast.

Amber:  00:06

Thank you. I’m really excited to be here.

Cheryl:  00:07

Yeah, it’s so great to see you in real time. We’re social media friends and Rheum to THRIVE friends. And just to get us started, can you let the audience know where do you live and what is your relationship to arthritis?

Amber:  00:20

Yeah, absolutely. So, I’m Amber, and I use she/her pronouns. I am outside of Philly. I’ve been a Philly kid my entire life. And my relationship to arthritis is that about five years ago, I was diagnosed with psoriatic arthritis. I have two family members, my mom and my grandpa, who have — my grandpa had, and my mom has rheumatoid arthritis. And we do also have a couple other autoimmune diseases, specifically Crohn’s disease that also impacts joints, that runs through our family.

Cheryl:  00:56

Yeah, and that’s really common. And I know that we’ve had on the podcast, I’ve had researchers from like Benaroya Research Institute in Seattle trying to study like, why? What is this familial, you know, inherited pattern? Yeah, I would love to delve more into your diagnosis journey, or, as it often is, a saga. But sometimes it’s not if you have family members, sometimes you get to get fast tracked. So, what were your first symptoms and what was your diagnosis process like?

Amber:  01:24

Yeah, sometimes I feel like I’m still in the middle of that saga, because things keep changing. As we get one thing addressed, we find others that we have to also take care of. Initially, my first symptom was, well, the first symptom I realized as autoimmune was a lot of abdominal pain, stomach pain. I would feel really full and bloated after I would eat. And I would have all sorts of tummy troubles when I would start to go to the bathroom. If I look back farther in my life, I’ve also always been prone to rashes that we didn’t quite know what they were. We assumed I was allergic to most things, scents, fragrances, whatever. So, I eliminated those throughout most of my life. 

And then, when I was a kid, I started with joint pain. So, if we look back, we can definitely see it. But I didn’t actually get diagnosed until around 2020. I had had a major injury and surgery on my knee. I tore my ACL and my meniscus, both my meniscus, in 2015, 2016, around there somewhere. And after recovery from that, I really started to notice more symptoms. And then, I went down the kind of rabbit hole of specialists. And now, we’ve basically settled on my treatment is predominantly for psoriatic arthritis, but it does also alleviate some of the stomach issues that come along with Crohn’s, which I’m not officially diagnosed with because I wasn’t sick enough for that. I didn’t have enough damage to my colon, but because they’re interrelated, my treatment does work for both. Yay. 

Cheryl:  03:12

Yeah, no, and that’s so — I should, you know, I spoke to soon, saying maybe your diagnosis was fast tracked because you have a family history. No, it’s hardly ever so simple. And yeah, I mean, I really relate to your experience with GI symptoms, and without knowing the relationship between things like Crohn’s and inflammatory arthritis, like rheumatoid arthritis, psoriatic arthritis, I never in a million years would have connected like stomach issues might be related to a joint condition, right? Like, that’s just shocking when you know.

Amber:  03:47

And interestingly, you know, for my mom, nowadays, with her treatments, when she’s due for a treatment, the symptoms that she actually notices the most are her joint symptoms, even more than her stomach symptoms flaring. So, for anybody out there listening, like, this stuff, I always say, you know, autoimmune diseases, just like our mental health, It’s buy one, get two free. It always comes with stuff you might not be expecting. And sometimes things that might seem like a little annoyance or whatever can be connected. I know a lot, I’ve met a lot of folks recently who, with their autoimmune stuff, have had eye things that are just more complicated. And you wouldn’t know that that’s something to look out for until you’re in the process of all this.

Cheryl:  04:34

A hundred percent. Everything is so interrelated. And I love that you mentioned. It’s the same with mental health. And actually, I want to jump ahead, because I have a little order that I ask these questions in, but sometimes I just go with the flow of conversation. And I would love to hear more about your work as a mental health professional. And, you know, I think I would — okay, let’s start with that. How you know, what do you do as your job? And then, we’re going to talk about kind of like, how that can help, what your perspectives are on helping other people with chronic illnesses? 

Amber:  05:08

Yeah, so I’m a therapist. I’m a licensed professional — bleh, we’ll edit that. I’m a licensed professional counselor in Pennsylvania. I graduated grad school in about 2010. So, I’ve been coming up on about 15 years in the field working with folks. Predominantly my career has focused on working with queer and trans folks, as well as lots of families, people who are neurodivergent, kiddos and their families, learning strategies and management. And then, as I went through the process of getting my diagnosis, quite a few of my clients that I still see to this day have been on that journey with me. They’ve seen me come to the office in my clear liquid diets. I wore a backpack for an endoscopy, a capsule endoscopy one time. And thankfully, everybody I work with is so very, very flexible and wonderful. 

The thing that I think so many of us don’t like to admit is that we’re probably more stressed out than we think we are. I think we all try to do too much. And that can be a really big trigger factor for a lot of folks, you know. Being overworked, stressed out, not having enough time to rest and rejuvenate with our families, with our friends. That really takes a toll on our body. And if you’re already running a little bit below baseline because you’ve got an autoimmune disease, it can make it that much more difficult to get out of a flare if what happens. So, as my career has evolved, I’ve actually become intertwined, basically working with folks who are also chronically ill. And I think that’s because I approach my practice very transparently, and I like to let people know, you know, as relevant, what’s going on for me, if it’ll impact or update treatment in any way. 

And I think that that’s actually been really attractive to a lot of people. Because in this life, you know, dealing with autoimmune diseases, dealing with chronic health, pain, whatever it can feel extremely isolating, even if you have a great support network and people who get it, it can just still feel really isolating. And having a therapist or someone with some shared lived experiences can really help. So, I think it’s actually, in a way, helped me connect with a lot more of my clients, because mental health and physical health are just so intertwined.

Cheryl:  07:50

That’s such a poignant point. You made numerous poignant points there. Sorry, yeah, yeah, I remember thinking, I personally didn’t go to a therapist until my son was about almost a year old, and I went because of postpartum mood disruption, I call it, because it didn’t feel like depression to me. Anyway, long story short, I ended up, it’s like I went to therapy for postpartum mood unhappiness, and then I stayed to unpack all the chronic illness stuff. And I remember saying to her, “I wish I had gone earlier,” like many people, I’m sure you hear that every day. But also I thought the one of the reasons I didn’t go earlier is because, like you said, it could be you feel isolated, even if you have a great support network. I kept thinking, “Well, I don’t really, I shouldn’t go to therapy, because I have all these great support people in my life,” like, I don’t I don’t deserve it in some weird way, not that I’m not worthy, but like, isn’t therapy for people that, like, don’t have anyone to talk to? I have like, a million people to talk to, but it’s a different relationship with a therapist, right? 

Amber:  08:54

Yeah, I go to therapy. I tell my therapist all the time, this is where I get to cry about it, and she gets to hear all the thoughts that sometimes I don’t want to tell my friends, or I just don’t feel like talking about when, you know, I’m out on a Saturday, you know. And one of the things that’s really helped me engaging in therapy has been that I can fast track how I talk about stuff. It’s helped me get a better understanding of what some of my needs are from my support network, and I can talk to them more clearly and I guess eloquently about what I might need or when things are flaring, instead of it just being, “Oh, I don’t feel well,” I can talk more specifically, which has been really helpful.

Cheryl:  09:42

I love that. And I think one of the things that surprised me the most about the impact of therapy for me was that I had a lot of really wonderful loving people in my life, but none of them are have a completely like objective outsider point of view. They all know you from — and I’m saying this, I know you already know this, but for the people listening, the people who are on the fence about therapy, I think in almost every episode therapy comes up. And, you know, I would love to help reduce the stigma against going to, you know, where people don’t feel like they should go to therapy or for whatever reason. And I think like having that objective outsiders point of view, they can just casually, the therapist can point out things or connect dots that you never would if you’re like, inside the painting, right, of your life. 

Like you’re in it, versus the person’s like, looking at, like, the gallery and being like, “Oh, that kind of, I wonder if that relates to that,” you know? And so, yeah, yeah. And I think the second thing I wanted to follow up on is just the importance of representation in our health providers of people with chronic illnesses, like you said. A lot of people they want, and I’ve heard this on the podcast, or heard it in the support group I run, people will ask me, “Do you know anyone in my city who has chronic illness who’s a therapist?” Because it can feel like it’s it’s really hard to — they say, you don’t get it till you get it, right, you don’t — yeah. And so, you know, if anyone you know, is there any good way people can find a therapist who specializes in chronic illness or who has the lived experience?

Amber:  11:17

Yeah. I mean, if you’re in Pennsylvania, I’ll do a shout out for myself, and a couple of my interns. I actually have a few folks who work with me, who I supervise, that also are living with chronic illnesses, and they’re amazing therapists as well. If you were to look on some of the directories, the biggest one that you’ll probably find the most amount of success with is Inclusive Therapists. Inclusive Therapists is a newer therapist directory. They can sort — you can sort by all sorts of topics, if you’re gay, lesbian, bisexual, if you’d like a therapist that matches your identity in those realms. If you’re an indigenous person or a person of color, you can search for therapists who match that they have. They can be broken down, therapists who specialize in or who also have lived experience as neurodivergent or folks with chronic illnesses. So, they’ve got the broadest search tools, I would say. 

There are other directories like Therapy Den, Psychology Today. And for folks who have insurance and want to go through their insurance, or even your doctor’s offices, I recently started working with a new provider, and throughout their offices, they had flyers of multiple support groups that their practice as well as a local therapy practice are co-sponsoring. So, you just have to get creative, do a little online searching, and don’t be afraid to ask the providers that you already see. Every time I go to a doctor’s office for an appointment, I also think of it as a little bit of networking. I wish we could maybe get co-pays as a write off. That would be great. Maybe someday. But it’s an opportunity for me to let other providers know, hey, we exist. We’re there, and your patients are looking for people who share some lived experience. 

And I keep saying that word a lot. It’s a little bit of a buzzword in the therapy world. I’ll just kind of give a little bit of background there. This has been studied for decades. I mean, at least 50, 60 years, they’ve studied what has the biggest impact on therapy outcomes. And what we have found is that the research shows that as long as there is some sort of shared lived experience. So, obviously, I couldn’t be your therapist, we know each other in a different capacity, but the fact that we’re both women, or that we both have chronic illnesses, or we both wear glasses. Maybe you’re a really sporty person, and you’d like a therapist who’s also into sports. Or if you’re into theater, and you’d like a therapist who shares that interest with you. So, having some sort of connection with your therapist outside the therapy actually helps the therapy work better.

Cheryl:  14:17

Wow.

Amber:  14:18

So, for therapists out there listening and for potential clients, you know, living your life as transparently and as safe as possible for you, I know not everybody can dive into that the way I have safety for, but if you’re able to, it’s really good for everybody. For business practice, and for the support that we can provide as therapists, and as clients, if you find somebody who has a little bit of an understanding it’s just one less person you have to educate, which is a large part of this process for a lot of us.

Cheryl:  14:52

Yeah, yeah. And I remember, I remember when I was in occupational therapy school, because, you know, we build, we also call it like a therapeutic alliance, like, you know, a connection. Like, human beings are never going to be able to just connect on like, or, in my opinion, there’s never going to be this complete, like, objectivity, you know, or a sense of, like I am a robot and like I’m not treating, you know, whatever. So, point being like in occupational therapy school, talk a lot about therapeutic use of self and how, like the self-disclosure, you in the role of the therapist, at least, this is just what I was talking curious, if you have the same thing or same outlook, is should always be in the service of the patient, right. 

And, I mean, yeah, it seems obvious like that. I’m not just going to talk about, you know, how I have to replace the shower head in my shower, and, like, randomly talk about my life. Like, that doesn’t have anything to do with what the client’s talking about, you know, but that you bring in your experiences. In the old days, it was like, “Oh, you don’t tell your client or your patient anything about yourself, and like you’re just like a blank canvas.” And it’s, yeah, it doesn’t seem like that’s really humane, you know. But I guess, I’m sure there’s some practitioners who prefer that. That’s just the way they practice. So. 

Amber:  15:59

Yeah, it’s interesting. When I was like, coming up as a therapist, that’s how we were taught as well. You’re very blank slate, what some people call the, like, smile-and-nod therapists. And I’ve come to find for the patients that I work the best with, that style is not what they gravitate towards. So, it’s a very individual thing, per client, per therapist, the toolbox that you use, the different theories we all come from. I tell everybody it’s like lasagna. If I say lasagna, every single person in the world kind of knows what that is, right? It’s a dish. They’ve all got pasta; they’ve all got some sort of sauce. And they usually all have some sort of cheese. And they’re usually delicious. 

But if I make lasagna, it’s probably going to be different than how you make lasagna. I might have veggies; yours might have meat. Somebody else might have a white sauce or a red sauce. I might use vegan cheese. You might use Parmesan. Who knows? So, everybody puts their own little twist on it. But at the core, it’s the same thing. And that’s kind of, that’s the therapy experience too. At the core, it’s the same, but each therapist and each client is going to have their own unique spin.

Cheryl:  17:12

I love that, and that’s why you’ll often hear, for those of you, again, I’m speaking to the people on the therapy fence right now, or who maybe have had, who talked to one therapist and had a bad experience, that it’s like dating too, where you have usually the first — not usually, often, you have to talk to a couple of different therapists till you find a good fit. Now, that wasn’t the case for me. I got very lucky. But even my first therapist that I went to eventually there, there was one issue, my claustrophobia, that everything else had kind of had a very nice trajectory of, you know, of course, there’s ups and downs, especially with chronic illness. But it was like I built a toolbox, and like, I’m checking with her about it, and things are going in the right direction. 

But we had really stalled on the claustrophobia, like the tools that she had given me. And she tried, to her credit, lots of different things. And it was like, I really was not making progress on that goal. And she was like, “I really think it’s time like I would like to refer you to somebody who really specializes in phobias and that, you know, that has maybe a wider toolbox or more specialized experience than I do.” And that’s what then he the therapist number two led me through, like, exposure therapy, and that has was what really, really helped, the way he did it helped. And so, you know, that’s very common to have to talk to multiple, and maybe there’s different therapists that work for different seasons of your life too, you know. So, don’t give up if the first one didn’t work for you.

Amber:  18:36

Absolutely. I tell people that, too, like there is nothing wrong with giving it two or three sessions, at least with you know each person that you’re trying ou. The beginning isn’t really the meat of the therapy. It’s getting to know one another. If you instantly get like a, “Ooh, I don’t think this is going to work,” trust your gut, and that’s okay. We’re taught how to not take that stuff personally. It doesn’t hurt our feelings. It’s all part of the game. And I know that I’m not the best therapist for everybody, and that’s actually a really freeing thought in this process, to let yourself get to know someone, and let them get to know you, and be like, “Hey, do I want this person kind of poking around in my brain a little bit?” Because that’s what we do. 

And I also really like how you said, sometimes we need different folks for different approaches or seasons. I have done that myself. I’ve referred clients to colleagues for a short period of time, sometimes for a long period of time. And everybody out there listening, just know, as therapists, when we see you connect with someone or be able to find the tool or strategy that works for you, we’re overjoyed. So, as much as it can be kind of sad or disappointing if we do have to, quote unquote, ‘break up’ with someone or refer them, yeah, yeah, it’s also just really exciting for us to see people start to thrive. So, don’t ever be afraid to approach that subject with your therapist. And ask them if they know they probably have a great colleague who they’re good friends with, who works very differently than them. Some of my best therapist friends and I, we don’t work at all the same way. And that’s what’s really great about it.

Cheryl:  20:15

It really, it really is a fascinating, it is just a fascinating magic, you know, of alchemy, of therapy. And I would love to hear, you know, back to your personal journey, because what works for one person doesn’t work for another. I talk about Acceptance and Commitment Therapy all the time, and I always am like, I think it’s the most helpful for most people, but, but it’s probably, I probably shouldn’t say it like that, because, again, it’s going to be different for each person. But I would love in your experience, like, what are some of the, for whatever you’re comfortable sharing, you know, mental health kind of tools or approaches that have been helpful for you with managing your chronic illnesses? 

Amber:  20:15

Yeah, I am also a big fan of ACT. I am not, I’ll just clarify this, I’m not very specifically trained in it. I get the training that a lot of us have gotten in grad school, where we’re trained to be general practitioners, and then we specialize over time. I’m actually a big systems person as well. And so, that could be your family system. And it’s not just the family you were born into. It can be your chosen family, spouses, people who have their own children. And I just look at how all the different — I don’t wanna say the word systems again, but I don’t have a better word for it. Yeah, all the different, all the different areas of our life work together in tandem. Think about health and mental health and our families and the world. I think of it like a clock. And if we take an old school analog clock, if we take the front off, and we look at the inside, there’s a whole bunch of gears. And they’re all different sizes, and they all have to work in tandem. If one of those gears is spinning too fast, the clock is not going to tell time right. If one of those gears is spinning too slow, it’s also not going to work right. And then, all the others have to either work more or less to compensate for all those things. 

That’s like all the different areas of our lives. You know, we’re not just patients. We’re not just someone with an autoimmune disease. We are friends, we are family members, siblings, parents, partners. All of these identities are so important to who we are as people that an autoimmune disease, think of that clock, all these different things spinning, and then we have another clock that’s our family or our work, or all these things. And then, an autoimmune disease is basically like chucking a bunch of peanut butter into the middle of that clock, right? Maybe one gear is spinning out of control now, maybe one of them too slow. And our work, whether it be through treatment or through mental health is to get those gears back on the same page. 

That does not mean it’s the page that they were on before. And that has been the crux of my own individual therapy work, as well as a lot of people I work with. Allowing ourselves the space to grieve that maybe our body doesn’t look or work the same way that we knew it to. That our relationships with our family and friends do have to change. A big one for me was Thanksgiving is coming up. My mom, like I’m sure everybody’s gonna say, makes the absolute best stuffing. However, she uses lots of onions in her stuffing. And over my journey, I’ve done a couple different elimination diets to try to see what else I could do to regulate symptoms. And I learned I’m allergic to onions. I wasn’t as a kid. It wasn’t anything, I shouldn’t say allergic. I say allergic. It’s what makes the most sense, but.

Cheryl:  23:49

Reactive, maybe. I’m also. 

Amber:  23:52

Thank you, God. 

Cheryl:  23:53

Garlic and onions, it’s like the most tragic thing. 

Amber:  23:56

It is, because they’re so tasty! And it actually took us a couple of years to get on the same page where I can say, “Mom, if you’re gonna make stuffing for Thanksgiving, can you make me —” She now makes me a little pan of my own that doesn’t have the onions in it. It’s still good. But I also, you know, every now and then it’s worth it to swipe a bite of the stuff we know we’re not supposed to have just to get that flavor, take a little bit of the extra preventative meds, and we figure it out. It’s different.

Cheryl:  24:28

Yeah, that’s been a huge like theme of all the podcasts. I like how you explain it with, like, the systems theory. You have a lot of metaphors, which is why it’s not surprising that you like ACT or Acceptance and Commitment Therapy, because that uses a lot of metaphors, too. But that yeah, you’re like, having a chronic illness is like throwing peanut butter into the gears of the clock of your life, and exactly like you said, you’re not just going to search for the solution to get the clock back to exactly how it was before. You have to then kind of create this new normal, and I think that that’s — and I think that allowing yourself, I think one of the hardest things, I don’t know how you help your clients do this, or I forget how my own therapist has helped me do this, is like giving yourself permission to grieve and feel your feelings, while also gently nudging the person, this is what we do in the Rheum to THRIVE groups and program, too, is like gently nudging people to embrace the new normal, while also saying embracing a new normal doesn’t mean that you love the new normal as much as your old normal. You don’t have to gaslight yourself into saying it’s just as great. Like, it might be a harder life, right, but we still have to adjust. Like, how do you do that?

Amber:  25:42

Well, like, personally — no, not at all. It’s not easy. Personally, the way I do that is sometimes we just have to take our own mental health days. You know, I call it sometimes a ‘goblin day’. I have clients who call it a ‘rot day’. Whatever you want to call it, it’s basically eat some junk food, stay in your jammies. Pull the covers up over your head. Cry if you have to. Lean into music, lean into an audio book, a favorite TV series, whatever your stuff is to just get through that day or so that you’re really raw and vulnerable. And we have to let ourselves have those. If we don’t, your body will make you feel those feelings at some point, and it will be much less in your control and much more unpleasant if you don’t make room for it yourself. 

And to be perfectly honest, that’s how I do the nudge with my clients. I’m getting better at nudging myself. That’s why we all need our own supports, too. But you know, we just talk about how, you know, we still have goals. We still have things to accomplish. Our lives are absolutely meaningful. It’s just we have, like, a second full-time job, having a chronic illness. And, you know, everybody’s just got to figure out how to make room for it for themselves. Some folks do really well with lots of exercise. Some folks do really well digging into their work. I like to read when I don’t feel well, or, you know, binge silly TV with my husband my friends, stuff like that.

Cheryl:  27:24

I love that. And, you know, I’m similar in that I don’t find it hard to even, even though I’m normally, like, kind of like, a workaholic person, I don’t find it hard to give myself permission to relax or like, have a one of those days where I’m, like, watching the great British baking show and then, like, salivating over all this, like, glutenous stuff I can’t eat anyway. But you know, I often hear from people with chronic illnesses that they find it hard to give themselves permission to have a jammy day. Or, like, what are some ways that people can give themselves permission. They’re like, “Just do it.” No, I don’t know.

Amber:  28:08

Yeah, for some people, that ‘Just do it’ might work, right? That this is part of your treatment plan is every third Saturday I am telling you, as your therapist, you’re not allowed to get out of bed. Or sometimes I’ll tell people to be like, listen, order the Chipotle, order the cheese fries, right? Let yourself indulge a smidge, so that you get that taste of it without having, without winding up reinforcing the all-or-nothing. A lot of us do that, especially if we have dietary restrictions, especially if exercise is something that helps us, it’s really easy to get hyper-focused on what we need to cut out and not let ourselves do that. Sometimes I think we forget that things like just hanging out at your house, watching TV with a friend, being cozy, can be the best medicine. Just laughing, having fun. 

So, really, just, you know, for the folks out there who ‘Just do it’, this is part of the plan. Schedule it for yourself. If that works, awesome. If you’re somebody like me, I need my friends and family to kind of initiate some of those days. I had a friend I hung out with over the weekend. Basically texted me, knew I was having a little bit of a bad day, and said, “Plan for the weekend: Blankets, cuddles, heating pad. We’re gonna watch a show.” Their cats jumped all over us. It was lovely and wonderful. We ate delicious ramen, and I had a nice, great day. I hung out with someone, and I got to relax and be really rested, because I just showed up myself, and they knew I wasn’t feeling great. So, finding a trusted friend who can be almost like an unaccountability partner, or an accountability partner for our rest, like, that’s helpful, too. 

Cheryl:  29:59

I love that. And I think that’s been the case for me. I’m just, I’m very, like, a hyper-social person. And I think another thing is, like, and some people need more of a cognitive strategy, or like logical strategy. I remember I, again, have been kind of like a sleep diva for a while, and I definitely protect my sleep. I mean, my mom was reminding me, I was always like that, even in high school. Like, friends would be like, “Do you want to do this?” And I’m like, “I have to sleep. I have a soccer game tomorrow,” you know, that kind of thing, yeah. But so, it wasn’t even chronic illness related necessarily. I’ve just always known deep, deeply, that, like, sleep is a very core need of my body. But after having a chronic illness has been way more necessary. And when I became aware of some of the research about how important sleep is, it’s like that even makes it easier to justify, you know, say, oh, my gosh, this is like, just like, food and water. Sleep is like, a medical need, you know. 

So, sometimes you kind of throw that into the mix. Be like, oh, yeah, rest and sleep. Like, this is how, you know, humans need to rest our body sometimes. So, yeah, sometimes we just need and a lot of times, I think you’re right that we need someone else reminding us. A friend or a therapist, you know, I think that’s beautiful. And the other thing I want to ask you about is support groups. So, there’s all kinds of groups out there. I mean, there’s unofficial ones, kind of, I call unofficial ones the ones on Facebook that are like an asynchronous kind of melting pot of a lot of people who have a similar diagnosis, but they’re not necessarily, like, moderated by anyone with any kind of experience, you know, with mental health or anything. And then, there’s like, really, really official support groups that are like in an inpatient psychiatry unit, you know, that makes other sides of spectrum that are like, very highly organized. And there’s like all this in between. So, what are your thoughts on support groups and experiences? Whatever you would want to share from your experience in Rheum to THRIVE as well.

Amber:  31:51

Yeah, I love a good support group. So, I’ll do two shout-outs. First is to Cheryl’s group, Rheum to THRIVE. I gotta tell you that group and y’all got me through a really tough time. 2023 when I was a member was a really tough year, and I was at kind of a turning point, just not knowing what I wanted to do and where I wanted to go with treatment. And the group was really helpful. To let everybody know the process of it, Cheryl is fantastic at psychoeducation, and really taking these big, broad medical concepts and breaking it down. And, you know, if you complete this group, you will leave, literally, with so much education. You could probably walk into your doctor’s office and be able to maybe pinpoint something new that’s helpful for you, or something, a test you might like to try, because you break it down so well so that people can really understand what’s happening for them and to them throughout this process. And it gives you better understanding of possible medications and things like that that you’re taking. 

We have to become, like, mini experts on stuff, because it’s affecting our bodies. Like, our body is the one currency that like we’re gonna have for our whole lives, and we’re the only ones who we can really count on to know it, right. You live in this body 24/7, you are the one that knows it, and so getting some of that extra education is really helpful. The other part of support groups that I really like are, I do this for a living. I’m a therapist. I am also a hyper-social person. I’ve got people around me all the time, and I still felt like nobody understood. Even my mom, who was diagnosed with, you know, autoimmune diseases before I was born, because some of our stuff presents differently. I even felt like she didn’t understand, and she probably understands the best out of anybody I know. So, it was just really helpful to, quote, be in a room, and I say that with air quotes, because we met virtually, but to just be there and to be able to show up. And, you know, our group was, it was the group of it winds up all the people that you need. I mean, we had teachers, we had doctors, we had myself, and I think another therapist, and to just see these other folks who are like, oh, you’re professionals, you’re real life people, you’re living your lives. And we can talk about, yeah, this thing really helped, but also it was a really big pain in the butt to get started with. 

Or, I remember one group, I think a bunch of us were just lamenting over side effects that our doctors were like, “Yeah, you’ll be fine to go to work.” And meanwhile, we were like, really? Because I couldn’t even make it to watch an episode of TV, I was so drowsy, um, so it was just also nice to have someone who’s been through the experiences without telling you what you should do, just get it. Like, that shorthand, almost, that we developed, it happened really quickly, and the group was really awesome. As far as other groups and like unstructured things, I’m a big fan of that too. Anything that gets people connected to other humans. You know, since the pandemic, a lot of our lives have moved online, and connecting is so much easier than ever, and I absolutely love it. If it weren’t for telehealth and Zoom and remote, I wouldn’t be able to work nearly as much as I do. So, it’s been absolutely wonderful. But I think a lot of us do forget that we’re social creatures. We’re not meant to live in isolation or by ourselves. Our brains and our bodies are designed to be in community with one another. 

And if you’re somebody who’s newer on a diagnosis journey, or even if you’ve been living with something for 25, 30, years, you might still be in a different stage of finding your community and finding your people who are going to get it. I’m now also social media friends with most of the, excuse me, most of the people that were in our group, and we check in on each other and we celebrate each other’s wins. And there’s some stuff, I think, that we’ve talked about with each other that maybe folks haven’t talked as in depth with their family members or their partners or their kids, just because it might be a little harder to have those conversations with someone not living it. So, if people can find a quality support group, right, folks that are in the same sort of journey space, maybe not the same area of journey, but just the same space, if they’ve got similar motivations to you, or they’re just folks that you can see yourself opening up to and allowing to get pushed a little bit from, it’ll be really, really worth it.

Cheryl:  36:56

Yeah, and thank you so much for sharing your experience with the Rheum to THRIVE group. It really is like, you know, from doing your own, you know, you’ve facilitated groups before, too. The group dynamics are fascinating because they are, they are unique to the individuals in that group, right? But typically, it’s to the point now the Rheum to THRIVE groups have been so great, honestly, like since 2020 when we started this that I’m almost, like, so I went to the conference. I went to the rheumatology conference earlier this month. And certain people like, “Oh, we’ve got to scale this. You got to get it bigger so more people can take it.” 

I’m almost scared to scale it to because I’m like, what if the, like, magic is that people already — anyway, sorry, this is just me, like, rambling, but like, point being it’s been so great that. And I think that part of it is that people, I don’t market it like in any sort of official way other than, like, organic, social media marketing and the podcast. And so, part of me worries that, like it might lose some of the magic if I kind of get, like, a broader audience. But I need to also just get rid of that fear, probably just in order to get, I want as many people as possible to be able to experience it. And I do think that there is a magic, you know, when you get people together who have a shared experience. It just yeah, it just — 

Amber:  38:15

Yeah. I think I’m very much a believer in the both/and of, you know, something can be both scary and exciting. Something can be both good for us, and hard to do. In fact, most things in our life are more than one thing. We’re very multifaceted as humans. And if it were me, the cheerleader in me is like, yes, Cheryl, grow it. Make it huge. The therapist in me is also like, you know, maybe there’s something to that little thought in the back of your head, or that little gut instinct. And maybe there’s an alternative, like a third path that just hasn’t revealed itself to you yet, that somewhere in between making it like a global phenomenon or the really kind of tiny, organic what you have now, there’s definitely somewhere in the middle that. 

I think, Rheum to THRIVE, or anybody else who’s running a support group or doing this education, you know, I think we’re going to start to see lots and lots more inter-specialty collaboration. So, I think there’s lots of room for everybody to grow, whether it be financially, professionally, whatever it might be, community wise, but also stick into your roots and like trust your instincts and what works for you.

Cheryl:  39:42

I love that. Thank you. Thank you for the free advice. 

Amber:  39:44

You’re welcome. Sometimes it’s hard to turn it off. 

Cheryl:  39:47

Yeah, no, the first big step was in 2023 when I made the lecture part, so the educational part all pre-recorded, because that is infinitely scalable in the sense that you can take the Rheum to THRIVE course, by itself, without the support, the live support, if you can just get those recordings and learn, you know, the little tips and tricks, like, I mean not just little, but the tips and tricks and also the mental health coping tools. And then, the support groups are, that’s the part that, yeah, and there’s plenty of groups that have scaled support groups, you know, like Alcoholics Anonymous. So, there’s just, there’s so many different ways to look at it. 

But that, I think, for now, I also have to, like, just, yeah, for my own mental health, be, like, one day at a time, you know. Like, I love how it’s going so far so and yeah, to anyone listening who’s been part of the groups, you know, it really is, I’m so grateful to each person who has, because it is like a co-created experience. Like, you know, you, Amber, being in the group changed the group for the better, right? Each person who’s in the group is makes it what it is. So, yeah. I, you know, honestly, I, my initial thought with groups is just, I’m just, like, a more the merrier person, you know, but it’s ended up being even more where I’m like, I can help more people. 

From an energy standpoint, for me, if I want to help like 60 people in one week, I could do that via four hours of meetings, 15 people each. Or I could do it like 60-hours, right? And it’s like, there’s still a lot of hours that are prepping, but one-on-one is not as efficient as a group. Yeah, and it’s also just a different experience. So, so anyway, but it’s, there is a magic, like we mentioned earlier, therapy. There is a complete magic and a necessity of one-on-one therapy. Not gonna take away from that whatsoever.

Amber:  41:34

I think that, you know, at different seasons in our life, and we get so much benefit. They’re just different. Like, groups a little more you have a little less control, little more unpredictable. And you are, you’re getting into the real life, like those relationships are happening at the same time, people are trying stuff. So, it’s a little, I don’t want to say messier, but like messier in the fun way, like when you’re baking. Whereas, you know, individual, yeah, it’ll get messy, you’ll get into your own stuff. And it’s really, really helpful. For so many of us, though, I think they work really well in tandem. And you know, I was actually able to take a step back and do a little bit less individual therapy during the group, and then after. And then, you could ramp back up. Like, again, the world is everybody’s oyster. Like, all of these options are great. And if anybody’s out there listening has any questions or concerns, you know, Cheryl was really great. 

I reached out to her before I joined. I was honestly a little concerned just with how much education I do have around this, just because I, you know, I lived with my mom. She had Crohn’s disease since before I was born. And I’m a therapist, so I was like, “Oh, I’m probably a terrible group member,” is what I thought when I went into it, because I didn’t want to be like, “Oh, I already know this stuff.” And, you know, wreck the group dynamic. But it didn’t work out that way. It worked out that I think everybody, the Universe gives us what we need. Everybody got what they needed out of it. And I think the way that group dynamics form and bond, it’s just another it’s a nice extra tool in the toolbox. Like, you know, I really love that analogy. I’ve used it even before I did Rheum to THRIVE, but especially as I work with chronic illness folks. You know, I talk about all the different things we have in our toolbox. You mentioned cognitive coping, physical coping, medication, sleep. I mean, we’re just scratching the surface of how big this toolbox could be.

Cheryl:  43:39

Yeah, and I’m so the similar to you in terms of, like, I don’t, I’m just very conscientious about where I spend my time. And I would be feeling the same if I were you, like, should I do this group, you know, these weekly meetings for an hour? Because I’m, like, I already know this stuff, kind of thing. But, yeah, it’s hard to put it into words. It’s the experience. I think there is the experience of connecting to others. And one thing someone asked me once is like, well, what, do you have like, one group for like special, especially for newly diagnosed, versus people who’ve had it for a long time? And initially it’s just like, I know because I want the group to — I just didn’t have like people knocking on the door being like, “I want to take this group.” 

I didn’t have enough people to separate it like that, but I’m really glad I didn’t, because what’s ended up happening is there’s people who come to the groups who’ve had it for 15 years, and there’s people who’ve had it for 15 days. Like, I’m not kidding. There’s been people who they just asked a friend of a friend, and who listened to the podcast and like, “You gotta join Cheryl’s group, it’s open right now,” and that has ended up being so — because the person who’s had it for 15 years, again, has a huge amount of knowledge, right? But there’s the therapeutic benefit to them of sharing that knowledge with somebody who’s new. 

You don’t even — a lot of people have said, I don’t even realize how much I knew until I was in a group with somebody who was brand new. And then, also, there the people who are brand new diagnosed often have an even fresher perspective, or maybe like they’re not clinging to things that were like the normal standard of care. Like, 15 years ago, like a lot has changed in rheumatology. So, sometimes, you know, there’s everyone’s voice is important and contributes to the group. And whether, yeah, there’s people who’ve been a therapist for a long time, like you. And then, there’s somebody who might be like, from the business world, or like, I don’t know, does like law. And sometimes they have, like, they’re able to have that distance of like, oh, well, what about this? What if you see it this way, you know? 

So, it’s been really great having groups that are diverse in terms of, you know, not as diverse as they could be in terms of gender. I will say, they’re open to anyone, but it’s usually, you know, people who identify as female and but they’re diverse in terms of age and type of inflammatory arthritis. So, that’s been really wonderful. But thank you. So, back to your story. One last question before we go to the rapid-fire questions. You’ve, you’ve already explained this a little bit, but just in case there was something else you wanted to say on it. How has being a therapist affected your experience as a patient? 

Amber:  46:11

Oof, that’s a tricky one. I think it makes me sometimes easier to treat because I’m really already in tune with tracking, charting, understanding my body, understanding how symptoms change over time. That comes really naturally to me, and I think it’s enhanced by my job. But sometimes I think, I think, like any therapist, well, I don’t know. I don’t want to lump us all together, but most of us, we tend to be over thinkers. And I wonder if sometimes that makes me a harder patient, because I have to work very hard to turn off my analytical mind and, you know, just let things settle sometimes. One of the things I know that it helped with is I very much don’t like to do or don’t like to start multiple treatments at one time, because I like to know what is this doing, what effect is this having, both positive and negative, and what potential side effects am I having? And so, I like to go slow and steady, which works well with some of my providers and some of my other folks are like, “No, no, we got to do all these tests. We’re going to do this right now. This is a big deal.” 

And I think the most important thing that has helped me is when you go through a diagnosis process, when you go through a treatment process or a change, you are going to get books of information just thrown at you. It’s just so much information. And having the skills to be able to sort of take information in and process it and then react with my own thoughts and feelings, and that’s a skill that I had to learn in grad school. This is not a normal human way of processing, right? We get information and we just react. That’s what our bodies like to do. So, I’m able to have that extra little skill where I can take it in, process it intellectually, then react, and then process it again. That’s not a natural thing. That’s a skill people have to learn.

And if you don’t have that, my then suggestion would be, for every appointment, you know, take video note, or not video notes. Take audio notes. Take a regular notebook. Write stuff down. Bring a friend with you, or have somebody on the phone who’s also, you know, if somebody’s not able to come with you, so that someone else can also hear what your doctor’s saying. That way, if you have follow up questions, you can start by going over all the information with your friend or family member, and then go back to your doctor, because we only get so much time with our providers. So, I think I can be a bit of a pain to them, because I I know more on the research level, but it can be really helpful for me. I’m a little bit better able to digest. 

Cheryl:  49:07

I love it. It’s just like you said to me earlier, it’s a both/and, right? They’re both existing. It’s like I often say, if someone’s going to interview me for, like, a media outlet, you know, I do love sharing my story, but I also I often joke like, I’m like, simultaneously the easiest and the hardest person to interview. Because the easy part, right, is that you don’t have to draw me out, like, I’m just gonna I have like, 900 thoughts on every question you ask me. So, that’s good or, you know, for them, they don’t have to be like, you know, pulling teeth to get information on me. But the hard part is that, because my brain really sees like, patterns and interconnections between things, I don’t often give people a clear, straightforward sound bite for their article. They’re looking for a one sentence sound bite. And I’m like, it all starts with a meaning of life, and, you know, to build up a pie from scratch, you have to create the universe first and all. And they’re like, what? 

Amber:  49:56

Yeah, I’m pretty similar, obviously. Anybody listening can probably tell, but I think again, it’s the both/and. You know this, this treatment is so nuanced. The symptoms are so nuanced, so individual for everybody. Really, you know, my biggest takeaway that I’ve seen with myself is it’s slow, it’s long, and take the time to really get to know what works with your body. If you’re doing you know, learning about new dietary diet, dietary restrictions. Jot your thoughts down a couple times a day. It doesn’t have to be a big, formal process, just really checking in with yourself and acknowledging that you’re the expert on your body and that your providers, your doctors, your therapist, physical therapist, whoever they are, your treatment team, and you’re a team member, too.

Cheryl:  50:56

So important. I mean, that’s, honestly you’re anticipating my next question, which was best words of wisdom for newly diagnosed patients, and that’s great. I mean, is there anything you would add to that? Or did you have —? Yeah. 

Amber:  51:08

No, pretty much that. I mean, I would probably say follow Cheryl on Instagram at least. Oh, and, you know one thing I did between 2023 and 2024 — I’m going to take this little roundabout, sorry. I really curated my social media. I am someone who, when I first was diagnosed, I wanted to do everything I could and be in control. And we’re gonna do diet, and exercise, and yoga, and breathing, and all these things. And it can be a quick rabbit hole to diet culture that way, and I didn’t realize how negatively that would affect me. It didn’t affect me negatively as a kid or a teenager. It actually wasn’t until I was going through chronic illness that I had the negative effects of diet culture and social media and media. 

So, I’ve really curated folks who meet potential clients, or just other patients where they’re at, who talk about all bodies being good, and who talk about things like tool boxes rather than a one-size-fits-all program. And so, that’s what I would do, like, trust — my best words of wisdom for someone newly diagnosed is, trust your instinct and trust your gut. You know your body and curate people around you who match your vibes and your energy about how you’re going to tackle this. Obviously, we have to be open to suggestions and things from doctors and all that; they do have the expertise in the medicine. But again, just see it as a team.

Cheryl:  52:48

I love that. And I mean, I’m really glad you mentioned about your experience with diet culture. It’s one of the things that most diet culture, and frankly, like food phobia, that that is rampant in the social media communities around autoimmune diseases and this, and it is definitely something I observed in my initial, you know, experiences on social media. But because social media becomes like a very selective filter, the filters have gotten very — the algorithms have gotten very sophisticated over time. So, because I’m not interested, personally, in a lot of the — because it has not been the most useful for me in my body, the diet, dietary interventions, and I’m just not interested in restricted diet in general, unless I super, super have to, which I do with the low FODMAP diet base and for gastroparesis and everything. 

But long story short, for me, and I sometimes forget, because my feed isn’t a lot geared towards that, how many people’s is. And that that it comes up in the groups every single time. And I have this gigantic now caveat or disclaimer before we even talk about the role of nutrition in rheumatic and musculoskeletal diseases, that there’s a huge caveat about, you know, orthorexia, which is an unhealthy fixation on only eating clean or healthy foods. But that’s a huge danger for those in the autoimmune community. And just what you said it so beautifully earlier, too. That really, instead of a restrictive mindset, to develop more of a focus on the foods or the choices in your life that were going to improve your quality of life, improve your symptoms, versus ‘stay away from these scary foods’ like, they’re going to make you feel worse. 

Amber:  54:37

Yeah, so I just we are all going to have some sort of restrictions because of these diseases. That’s part of it, but it doesn’t have to be the only thing we focus on. 

Cheryl:  54:47

Yes. Health, yeah, having a ‘healthy’, quote unquote, even the word ‘healthy’ can be like triggering for some people, because I used to call them ‘healthy habits’ in the THRIVE framework, and I call them helpful habits. Healthy Habits. Yeah, so, like, that’s like, exercise, sleep, and nutrition, because they are helping, and they are helpful. 

Amber:  55:07

And I will tell everybody listening, you know, if you’re also on the fence of the Rheum to THRIVE group, you know, Cheryl gives really good evidence-based research, you know, that’s what I really appreciated about your group, was how much it matched the research and the science, but you made it accessible for everybody. You and our group members, like everybody, was really aware that we all have different means. We all have different access. We all have different needs. And what works for me might not work for somebody else. And I just really appreciated that you gave the information education in such a — nonchalant is the word that’s coming to mind, like, it’s in such a way that it wasn’t prescriptive, or you have to do this, or you’re bad if you don’t. It was presented in a way that really helped everybody start to incorporate what they can. So, don’t be fearful that you’re going to get a whole bunch of prescriptions if you join one of Cheryl’s groups.

Cheryl:  56:12

No, I almost wonder, and as I’m like, I think, oh, my gosh, am I not, like, am I not nudging people enough? Because I’m like, oh, maybe I should be more, like, you need to do the coaching them more aggressively. But I’m like, no, like, that’s the last thing people need is one more person telling them what to do. It’s just, I think it’s just, it’s the same with when I had a baby. Another tangent but, you know, this whole fixation people have on breast is best and doing everything. If I said, No one does everything best all the time, nobody does everything best, okay? So, let’s not set ourselves up for failure by saying that we have to have the best diet, the best exercise, the best. Just choose from the smattering of things that might help you, figure out what moves the needle, and then give yourself self-compassion and forgiveness when you’re not perfect. So. 

Amber:  56:58

And what’s best for one family might not work for another, and same with individuals. So, and what was best for us a year ago might not be best for us today. That’s the hard part is it’s going to constantly change. But that’s also the good part is that it’s going to change. You’re not going to be, if you’re in a place where you’re stuck right now, you’re probably not going to be there forever. It’s going to change over time, and you’re gonna learn new skills, and new things are gonna start to work.

Cheryl:  57:25

I love that. That’s words of hope. Those are words of hope. I’m like, that is our words, of those are words of hope. Do you have — a totally different note — do you have a favorite arthritis gadget or tool in your physical toolbox?

Amber:  57:39

Absolutely. This one is, I actually had a conversation about this with a friend recently, just how many heating elements are in my house. So, any sort of heating pad or heating thing. I’ve got a heated eye mask, I’ve got heating pads, I’ve got a plushie that’s heatable, hand things, feet things, you name it. We’ve got all the heating things at our house, and I love them. 

Cheryl:  58:05

Oh, me too. I’m just, I’m like, how are there any more that I haven’t bought already, but I just got one that’s a battery heated eye mask for, yeah, so you don’t have to, like, put it in microwave or anything. You just, you charge it like, like you charge your phone, and it’s really great for kind of those dry eyes in the morning. 

Amber:  58:26

Oh, I might have to look into this.  

Cheryl:  58:28

Christmas present idea, or quality present idea. Do you have a favorite movie or book or show you have watched? 

Amber:  58:35

Oh, gosh, if we dive into this question, it would be another full podcast. So, I will just leave you with my favorite show recently has been Agatha All Along. I’m a big Marvel fan. Well, my husband’s a big Marvel fan. I kind of jumped on with him, and I love anything witchy and woman-centric. There’s also good queer representation in it. It’s really cool. It’s a great show. It’s on Disney plus. And Kathryn Hahn and Aubrey Plaza are like the two big main names. They’re just such great actresses. So, plus every, all the rest of the cast, so good. I highly recommend it. 

Cheryl:  59:15

A thousand percent. A thousand percent. Okay. Do you have a favorite mantra or inspirational saying?

Amber:  59:22

I have a couple. So, my first one is, be the good you wish to see in the world. That just kind of reminds me to, like, get up and get going. But I actually got a sweatshirt either last year or the year before, I forget when, from this company called Self-Care is for Everyone. They make, sort of, yes, yeah, Cheryl’s nodding. They make some, like, sometimes they’re cheeky, sometimes they’re just kind of cute little sweatshirts with coping skills or mantras on them. And my favorite one is ‘I’m doing my best’ and it’s also got little things. Here’s like, ‘My best is enough’ and one says, like, ‘My best changes every day’, and that’s been really helpful over the last couple of years, going through some ups and downs. 

Cheryl:  1:00:08

I love that. I have one, the one that says, ‘What if it all works out?’ Because I always forget to ask myself that. So, I wear that, especially when I go to the airport, because I get nervous before I fly often. 

Amber:  1:00:16

Oh, sure. 

Cheryl:  1:00:17

Like, what if it all works out? Like, what if it’s a boring flight? Nothing happens, yeah. What if it’s just fine? Yeah, it’s like, we I never consider that. My brain does not want to consider that differently. What’s bringing you joy right now, other than Agatha?

Amber:  1:00:29

I’ll say two things in specific. One has just been different levels of connecting with friends. You know, we really slowed down in the last year. And instead of going out and doing lots of activities, we’ve done more going over to friends houses, watching shows, cooking, stuff like that. And I’ve just had a really good time getting to know our friends on a deeper level because of that. And also, the Eagles are in a really good winning streak, and they just won last night. So, go birds! So, yeah, that’s. 

Cheryl:  1:01:03

I love it. 

Amber:  1:01:03

That’s bringing me, too.

Cheryl:  1:01:05

I love it. I’m a big Kylie Kelce fan. Jason Kelce. 

Amber:  1:01:09

Yes, they don’t live very far from me. And shout out if Jason or Kylie, if you’re hearing this, I would love to go out for a drink with the two of you. You seem like a really cool couple that we would have fun at game night with.

Cheryl:  1:01:22

Oh, my gosh, yes, I actually have this list. One of my 1 billion ideas of things to do with arthritis is have something called the Arthritis in Culture awards. I don’t know if you’ve heard of like Las Culturistas with Matt Rogers and Bowen Yang. They do the Culture Awards every year, and they’re just like, best movies, best shows, whatever. So, obviously Arthritis in Culture. So, times that arthritis was mentioned in pop culture or wherever. And one is Jason Kelce on his podcast talked about having osteoarthritis. And it was really funny, because he was like, “I don’t think you can have that in your foot.” And then Travis was like, “Yeah, you can there’s like, joints in the foot, dude.” And it was just like the most dude-ly conversation about joints I’ve ever heard. About arthritis joints, not like foot joints. So.

Amber:  1:02:11

That podcast is one of my favorites.

Cheryl:  1:02:13

I love it. I love it. And I’m, obviously, I’m a huge Swiftie, for those who didn’t already listen to the podcast. So, that’s how it was my entry point.

Amber:  1:02:19

My husband won’t he says, he’s not as much. He’s not a full Swiftie, but he is. I had a Taylor Swift themed birthday party for his 40th so he’s a big Swiftie, and we just love the four of them together, because we’re big Eagles fans already. So, yeah, shout out to the Kelce’s, and potential future Kelce and Taylor Swift. And hopefully y’all want to be our friends.

Cheryl:  1:02:47

Please, please. Yeah, I literally just had this like, vision that, like, you’re going to be one of their kids therapists or counselor, which would be amazing.

Amber:  1:02:56

Oh, my gosh, that would — yes, I would love that. I do also have an interest in sports psychology, so, yeah, hit me up, people.

Cheryl:  1:03:05

Amazing. Oh, last one, big one. What does it mean to you to live a good life and thrive with psoriatic arthritis?

Amber:  1:03:13

This is like a poking question, just because I’ve got so much up in the air right now. But I think what it means to live a good life is just to be able to live and enjoy all the things and all the different aspects of myself in my life. You know, I like watching sports. I like going out with my friends. I like cooking and trying new recipes. I really, really love working. I don’t like how workaholic I can be sometimes, but I know my work’s really important, and I really enjoy doing it. And just connecting with people, hearing and sharing stories. It’s just so, just the healing aspect of all of it. So, to be able to do the things that make me me, in whatever shape or form I can do them, and have some consistency with that is what means living a good life. 

And I will be completely transparent with everybody. That’s not always possible, you know, I’ve had to take some step back — steps back, excuse me — in professional spaces, with hanging out with friends, with doing the sports or activities that I love, and, you know, pivot or find new things, which is totally okay. It’s hard. It kind of sucks while you’re in the middle of it. But it doesn’t mean that you’re not going to get to do those things. It’s just sometimes they have to look different.

Cheryl:  1:04:43

Yeah, I love that kind of you’re interweaving the concept of adaptability, you know, or flexibility, being able to pivot, and that’s so hard, right? If you’re the kind of person that wants to plan, like in my in my case, wants to control. I remember the talk, the talks, plural, as my therapist, what if I’m really good at controlling this?

Amber:  1:05:07

I’m chuckling. Because almost everything I say to my clients, my therapist says to me, and then we laugh about it, and yeah, that’s, that’s it. I mean, the biggest thing, the best way to manage a chronic illness is to get a little bit more comfortable giving up some control. Keyword, there’s some, I’m not giving it all up. 

Cheryl:  1:05:30

No, no, yeah, no, realistic with yourself. That lesson took me, like, 10 years to learn like I never would have agreed with it. I think I’m still learning. Like, no, you might have to accept some lack of control, but I’m different. I’m gonna figure out the loop pool. I’m gonna figure it out.

Amber:  1:05:49

One of the most powerful parts of therapy for me was when I realized that being a superhero or trying to do it all and control all of it doesn’t make it any better. And now that I can kind of laugh about that and be like, ha-ha, I thought I was a superhero, but also recognizing that sometimes we are. Like, we’re doing so many things, we are superheroes in a way. It’s literally just about, you know, I think you said it earlier, being very conscious, conscious about where you give your time, and making sure that what you put time and energy into gives you, gives you energy back.

Cheryl:  1:06:33

That’s so true. That’s so true. Well, where can people connect with you online? 

Amber:  1:06:39

Yeah. So, the best place would be my social media. I don’t have a ton of followers. I’m not an influencer. I literally post pictures of my dog and food.

Cheryl:  1:06:50

But influence the people who in your environment, though, that’s perfect. 

Amber:  1:06:54

That’s fair. Um, I’m @ALC724, on Instagram. You probably won’t find my Facebook. I’ve been pretty private on there for a while. If you’re one of my clients hearing this, don’t friend me. I probably won’t accept your friend request, but I appreciate the support. Also, folks can check out my therapy website. My practice is alccounselingandtherapy.com and I also am the one of the co-directors of the mental health program at the Welcome Project PA. And our website is welcomeprojectpa.org. I can share all this with Cheryl. We can put it in the notes. And that’s where you can see we do have a chronic illness support group run by two of my amazing interns, Hope and Melanie, who are both actually living with some arthritis, and they’re kicking butt in grad school, and they’re holding the space for folks. And that group is actually because it’s a peer support group, it’s open to everybody from anywhere in the country. You do have to be in Pennsylvania for our therapy services. We are only open to folks in Pennsylvania, insurance stuff. But, yeah, that’s where you can find us. You can also probably find me cheering for the Phillies and Eagles and hanging out with my dog. If you follow me, you will see lots of pictures of scruffs.

Cheryl:  1:08:33

Amazing. No, well, thank you so much. This website is incredible, I’m like having to resist going down the rabbit hole this website right now, the local project.

Amber:  1:08:41

Yeah, we do too much, but we love it.

Cheryl:  1:08:46

We are kindred, you and I are kindred spirits here. Yeah, well, thank you, seriously, so much for taking the time to share. I just know people listening are gonna have a better picture in their mind of what therapy, you know, could look like, and the importance of so many of the tools in your toolbox. So, thank you. Thank you again. And oh, for those listening on the audio version, don’t forget, there are videos of all the episodes now on The Arthritis Life YouTube channel as well. And there’s always transcripts and detailed show notes on the Arthritis Life website, which is arthritis.theenthusiasticlife.com. That’s a domain I got, like, in 2010 when I first started a blog called The Enthusiastic Life. But now it’s arthritis.theenthusiastic life.com. Which is awesome. So, yeah, thank you again, Amber. We’ll see you later. And yeah, go Eagles, even though I’m a Chiefs fan!

Amber:  1:09:39

That’s quite all right when they don’t play each other, I’ll let you guys score all the points. When we play each other, we’re just going to kick your butt. Sorry.

Cheryl:  1:09:47

I get it. I totally get it. All right. Bye-bye for now.

Amber:  1:09:51

Thanks, Cheryl. Bye.

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