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Podcast

Finding Peace with Your Body: A Self-Compassionate Approach to RA

3 days ago
53 min read
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Summary:

Living with rheumatoid arthritis can feel like a constant battle—one that leaves you frustrated, exhausted, and sometimes even angry at your own body. In this episode of The Arthritis Life Podcast, occupational therapists Cheryl Crow and Lindsay Voorhees dive into self-compassion exercises to help you find more peace in the midst of the chaos of life with chronic illness.

They explore the tricky balance between wanting to “fix” your body and learning to accept where you are right now. Lindsay introduces a powerful framework for becoming your own loving companion—especially when flare-ups and uncertainty make life feel overwhelming.

You’ll also walk away with practical, everyday strategies, like how a simple tool like Dycem can make tasks easier. Because sometimes, the smallest changes can have the biggest impact.

If you’ve ever struggled with self-judgment or wished for a little more kindness—both from yourself and for yourself—this episode is for you.

Episode at a glance:

  • How do Occupational Therapists Help people with chronic illnesses?
  • The Importance of Self-Compassion: Lindsay highlights the value of acknowledging your humanity and giving yourself grace through the ups and downs of living with arthritis or chronic pain.
  • Aligning Your Time and Energy: Feeling more grounded comes from making sure your time and energy are aligned with what truly matters to you, even when living with a chronic illness.
  • Helpful Tools for Daily Life: Lindsay mentions Dycem as a versatile tool for improving grip and making everyday tasks easier.
  • Words of Encouragement: Lindsay encourages newly diagnosed individuals to remember they’re not alone and don’t have to figure everything out on their own.
  • Recommended Resources: Lindsay shares her appreciation for Sitting Pretty by Rebekah Taussig for its relatable insights and humor about living with a disability.

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:

Lindsay Voorhees is a licensed occupational therapist and owner of Lindsay Voorhees Wellness. She is also a certified Kripalu yoga teacher and has deep experience in embodiment practices, including graduate courses in dance and movement therapy. Lindsay worked for several years in clinical, hospital-based settings and currently teaches in the Occupational Therapy program at Duke University. Her passion is helping people with chronic health issues partner with their right-now bodies, learn new ways to adapt, and find a sustainable, kinder way of being.

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:

[00:00:00] Cheryl:
I’m so excited today to have a fellow occupational therapist to talk about ways to connect to your body, even with chronic illness in ways that are like more compassionate and kind to yourself. So, I’m happy to have Lindsay Voorhees here. Welcome! 

[00:00:16] Lindsay:
Thank you. 

[00:00:18] Cheryl:
Yay. Before we — oh, we’re so happy to have you. And if you could just start by letting the audience know, like, where do you live and what is your relationship to either arthritis or chronic illness in general? 

[00:00:31] Lindsay:
Yeah. So, I live in Durham, North Carolina. I grew up in Southern California, but moved across the country here. And my relationship to arthritis and chronic illness is primarily through being an OT. I do at this point in my life also have friends and family members who identify as living with chronic illness. But primarily, my first connection point was through my professional experience. 

[00:01:00] Cheryl:
Yeah. And I always, like, when I interview subject matter experts, I always like to know why did you enter the field that you did? So, why did you become an occupational therapist? 

[00:01:13] Lindsay:
Yeah. Well, I’ll start by saying it was a winding journey. I didn’t, like, in high school know that this is what I wanted to do. My mom was a nurse. And so, I heard like PT/OT referrals broadly, but that didn’t really mean anything to me. So, I actually through college thought that I would I actually started to be working with kiddos, so I was in the child development world and psychology, and started going down the social work path. 

And this might sound familiar to some people, like, didn’t know what I wanted to be when I grew up when I was 21 or 22 years old. I actually — yeah, maybe still don’t know. I’d gone down the path of social work and counseling. I had actually started a mental health counseling program that was specific to dance and movement therapy. So, expressive therapies broadly. People are maybe more familiar with art therapists and music therapists, but there’re also dance movement therapists who primarily use expressive arts as the approach therapeutic approach, something I’m still really interested in. 

But when I was in that program, I had a placement that really just opened my eyes to a lot of other things I could be doing that I wasn’t aware of, like special education, and occupational therapy, and speech and language pathology. And so, I had my quarter life crisis and just put a pause on that program — learned so much, and it really was the foundation and continues to be the foundation for the work that I do, but I realized I wanted, I wanted maybe a broader tool belt, I guess, is the way I can describe it. In our country, especially, the opportunities for getting to be a practitioner in mental health are unfortunately, like, pretty niche. Like, we need a lot more, of course. And when I was thinking about it, I also want to work with kiddos and adults who have physical disabilities and wanted just a broader approach to how to support folks. 

And so, when I came across OT in a few different ways and had some shadowing experiences, it just felt like a really good intersection of how do we think about health and well-being in a more holistic way, like mental and physical health, which have gotten separated into this false dichotomy. So, yeah, so then I applied to school and I guess the rest is history. I haven’t made — it’s been a winding path through different jobs, but I have been in the OT world for the past nine years. 

[00:03:55] Cheryl:
I love it. I really resonate with so much of what you’re saying. I also was really interested in either becoming like a mental health counselor, or in my case, I loved working with kids and thought about becoming a teacher or a special ed teacher. And so, I think occupational therapy is such a, it’s a specific degree that allows you to do a very broad variety of things, you know, and I would say I always say that if I could rename it, I would name us like ‘life skills therapists’ because it comes down to helping people function better in the context of their lives, whatever is going on physically, mentally, social, environmentally, you know. And I actually have — I’m restraining myself. I’m asking you a million follow up questions about like dance and movement therapy because that sounds so amazing. 

But for the topic of this episode, I’m gonna move on to ask, how did you come to specialize in helping people with chronic illness specifically? Because unfortunately, people who listen to the podcast before know that I have one of my soapboxes is that not enough — first of all, a lot of people — just help people with chronic illnesses in general, like our healthcare system is set up on an acute care model, where you have an injury that’s going to rehabilitate in a few months or weeks versus like a chronic illness. So, even within occupational therapy, I feel like there’s even so many gaps for chronic illness. So, how did you come to specialize in this area? 

[00:05:17] Lindsay:
Yeah. So, kind of two different points that come to mind. So, during grad school, I actually had the opportunity to lead a Dance for Parkinson’s program in the community. And that was such a gift to be handed that program that a friend of mine started. And so, while that was not OT practice, it did really shape, as I was moving through my graduate program, like thinking about, like, what is meaningful? What does a good life, what does a good day like mean and look like? And having like conversations, not necessarily asking those direct questions, but like participants would share, they’d be there on a day when their mobility looked really different than the week before. And they might choose to sit for the whole class rather than kind of transition to standing. 

And also, that was like, it opened up these other questions that I do think we don’t get the opportunity to really spend time in within the medical model, which is like when there’s not a cure — so, there are many conditions in which, you know, a cure in terms of like not just total remission, but doesn’t exist anymore. There are so many conditions we could name, right? I’m just using the example of Parkinson’s. What does it mean to still be able to move towards your goals, to still be able to align with your values, to do all the things that you need and want to be able to do? And to adapt in the face of changing, whether it’s progressive or fluctuating, flaring kind of conditions? So, that was — and the last part I’ll say about that experience with Dance for Parkinson’s, it really reminded me how important and we don’t have good ways to measure this, no matter how many like quality of life indexes we look at. Like, just how meaningful it is to measure to just have fun and find the things that bring you joy, right? 

Not in terms of — we can talk about this later — but the utilitarian, like, self-care in order to reduce symptoms; that matters. And also, just being a human and, like, having access to the things that are fun and joyful, not as a means to an end, but just like inherently. So, that was, that was there even before I was practicing and really getting to do work around working with folks with chronic health issues. 

My OT journey started in an inpatient rehab context, and so I was on a spinal cord injury unit. I learned so much. And I will argue that there, I don’t think we use the language of chronic illness around that, but in terms of living with chronic disability, I think there’s a Venn diagram in terms of, like, some of the folks I worked with had an acute injury, and some of the folks who came onto our floor were aging with an injury that they had 20, 30, 40 years ago. And then, you know, what does that look like in terms of the aging process, and also, secondary conditions that come up along the way? I thought of that in a very acute way, but now looking back, I’m like, even there, we were having conversations about not just what does this look like when you leave the hospital, but like years from now. Especially if it was a more complete injury, you’re learning a totally different way of being, and figuring out how to do that. 

But I’d say the most explicit way where I really got to start diving into working with folks with chronic health issues was in my outpatient experience. I worked in a neuro, primarily a neuro or neurologic outpatient. And we would have referrals across the board, but I would say, primarily had referrals around chronic or progressive neurologic conditions, autoimmune conditions broadly, and post-cancer recovery. That was when I wish we got a little more — we often get referrals around immediately after surgery when there’re more obvious things going on, but I also lump that into when I think of chronic illness. I have several people I love who have been through a breast cancer journey and who live with maybe more subtle or invisible changes in their bodies because of that. 

So, that was where I first was introduced to — I would have to reckon with the expectations from providers from an insurance-based system, that as you alluded to, Cheryl, really wants you to fit this model of ‘You broke a bone, in six weeks you’ll be at this place’, pretty linear process, ‘In 12 weeks, you’ll be able to be discharged’. That’s a pretty typical, if nothing goes wrong and you had an orthopedic injury, that’s a progression that a lot of — which honestly, doesn’t represent most of when people are intersecting with the health system, right. It’s somehow become the way. And I was bumping up against, like, all of those issues that come from. Like, this doesn’t fit because there is unpredictability. There is waxing and waning. There’s fluctuation. So, I won’t get too much more into that, but just to name, which I know you talk about on your podcast, is like just the realities of implementations of our health care system as it exists. So, happy to talk about that more, but that’s how I got into getting to work more with folks with chronic and progressive conditions.

[00:11:10] Cheryl:
No, that’s so — I mean, I resonate with so many of the things that you said. First of all, I want to point out, I love that you mentioned ‘fun’ and particularly embracing opportunities to find joy, not as a means to an end. So, I’m just literally echoing what you said. But I think so often, it’s, oh, that in our OT training, we’re taught that everything comes down to helping someone like, you, you do something so that [blank], so that you can be improve your mental health, so that — but I think, so that you can improve your brain. Like, I’m going to dance so I can improve my range of motion and my strength and my cardiovascular fitness. And those are all meaningful things. Like, if I have good cardiovascular fitness, good musculature and exercise every day, my RA symptoms are genuinely going to be better. But also, I should dance because it is fun. 

[00:12:00] Lindsay:
Yeah, if it is fun for you. Which it doesn’t have to be, but. 

[00:12:04] Cheryl:
I’m talking about me specifically as an individual. Yeah, I love dancing. Yeah, you’re right, not everyone. It’s finding what brings you joy. Whether that’s, yeah, whether that’s a certain kind of dance. I’m not very, I’m not very well-versed in salsa or tango, but I’m really well versed in like jazz and tap and Lindy Hop. And for you, it might be a sport or it might be Qigong, what is it called where you’re like, like moving really slowly? 

[00:12:30] Lindsay:
Tai Chi. 

[00:12:31] Cheryl:
Tai Chi. Tai Chi. Yeah. 

[00:12:33] Lindsay:
Qigong is lovely too. Yeah. 

[00:12:34] Cheryl:
Yeah. Yoga, whatever. Or singing, being part of a spiritual community. That is not only — I’m not, I’m not a very spiritual person, but I know for a lot of people out there that finding a spiritual community, I know one of my people in my Rheum to THRIVE support group, she’s really active in her church choir, and that brings her like intrinsic joy from the act of singing, plus it’s like having her, you know, keep in touch with a broader purpose and sense of spirit in her life. So, I really resonate with that. And the second thing I’ll say is, before we go to the main topic of today of connecting with your right now body, which I think is such a beautiful phrase, is I think it’s also really, as a provider, I think a lot of us, like, health providers, whether it’s OT, PT, speech, doctors, nurses, we go into the field because we want to help people transform to get better usually, right? 

If you ask me, when I went into OT school, like, I want to do what you said, like the healthcare system is set up to do. I want them to start at Point A and get to Point B. And it would be like a very linear idea in my head at that time of like, well, they start off feeling pain. And after they see me for a few weeks, they don’t feel pain. And now I — and it’s not an unlaudable goal if that is realistic for that patient. But as you and I will talk more about, is that’s not always realistic to cure, heal, or, remediate in the words of OT. So, how do we — now I’ve realized — and sorry, I’m getting ahead of myself — but the transformation can partly be in controlling the symptoms that are amenable to being controlled, like pain or fatigue. And then, the other deeper transformation is like psychologically reorienting yourself to your condition. So, for what that’s worth. 

[00:14:31] Lindsay:
Yeah, no, I resonate with all of that. And I do think there is this piece of redefining for ourselves, and then each individual getting to redefine what is wellness or whatever word you want to use there that doesn’t — it’s been co-opted — but what does wellness like look like or feel like for you because it’s not cookie cutter, and it’s not mutually exclusive from living with chronic health issues which is another narrative that I think both healthcare and the health and wellness industry perpetuate, right, that those are mutually exclusive 

[00:15:10] Cheryl:
Oh, my gosh. I love that. No, and actually it’s really funny. My friend, if you’ve heard, those who’ve listened to every episode will remember Nitika Chopra. She is a wonderful advocate and she runs her own support community called Chronicon, like Chronicon, like the comic thing, but it’s Chronicon, like chronic illness community. And she just has come out with a series of content and reflections on her podcast and her social media about reflecting about, like, how she went all in into the wellness industrial complex. And then, now is coming out of that and realizing that there’s toxic messaging on like both sides. I’ll link to that in the show notes as well. But, yeah, I love that. 

You said ‘redefining what wellness means to you’. And one of the things, before we started talking, I always ask my interviewees, you know, what are you most passionate about talking about? Because that’s what I want to talk about, if it intersects with the mission of this podcast, which is to help people live well and figure out how to thrive with their condition. And you said on your website, you say you ‘Help people with chronic illness partner with their right now bodies and find a sustainable, kinder way of being’. And I think, first of all, I love that phrase, ‘The right now body’. 

Because I think so often — I just was thinking about this yesterday — that’s my body is not a, I don’t want to think of my body as a constant project, that it’s never good enough, and I’m just, like, have to keep figuring out how to control everything so I have no inflammation and I feel perfect all the time. Like, you know, on a most basic level, it’s easy to see your body is broken when you have a chronic illness and get wrapped up in fixing, you know. How, in your experience working with people with chronic illness, how do you help them wrap their minds around connecting to their right now body and getting out of that fixing mindset, or finding a balance between fixing and accepting?

[00:17:18] Lindsay:
Yeah, I just want to name that I think it is there’s another both/and there, right. It is this — I’ll come back to the partnership with body, but it comes from this concept that’s so central to this work, that we’re walking these parallel paths. As a provider, I feel like I am a companion along the journey of both, like, the things that are evidence-based that will help, whether it is remediating or lessening symptoms or finding that medication regimen, which is not in our scope as OTs, but like getting people the resources in all of those directions. Yes. And what I kept hearing when people would come to me is, yeah, but while I’m waiting six months for this specialist appointment, until we know if this helps or not, like, this meanwhile time, what do we, how do we make that meaningful, maybe tolerable if meaningful feels like a farfetched, like, too hopeful word? So, I think that is the work. 

And then, how that shows up in terms of specifically the situation of what does it mean to live in the body that you have, especially when that is unpredictable. And if not painful, then inconvenient, uncomfortable, whatever language you would use around that. Like, it’s not always like a great place to be like, and just how do we let that be true? So, I think this comes around to like we’ve talked about, what does acceptance mean? And that can be a big word, and I don’t use that word, honestly, with folks. Sometimes people use that to me, and then it’s a shared language. But what does it mean to find a relationship with your body that can be, if not a partnership, then at least collegial. 

So, I sometimes do think about, okay, think about relationships in your life. A roommate that you see, but you don’t spend a lot of time together, passing in the night; like estranged exes, all the way to some of your best friends or your partner. Like, we have so many different types of relationships externally to ourselves. And I think that’s a helpful model to just start by naming, what is your relationship right now with your body, without judgment? If you had to pick one of those, what would be closest? And just recognizing that and part of the why, right? And you’ve, I know you’ve talked extensively about this, but the impact of being poked, prodded by other people, by yourself, in order to support health in some ways, but what are the impacts of that on your relationship to your body? What does it mean when you are having to be hypervigilant so that you can advocate for yourself to providers or to people in your life? Like, how does that change your relationship? There’s so many factors. 

Outside of just being human, we all also live in, especially, you know, I work with people of all gender identities and a lot of people identify as women and there are very specific cultural situations around bodies, like, women’s bodies. And so, it’s just, there’s a lot. And I think part of it is we start by recognizing what is what is showing up in your relationship to your body. And that might sound very out there. We usually do that in terms of we are moving and then we’re debriefing or we’re, like, going, moving through something like an interoceptive awareness or like a body awareness rating scale and talking through ‘Wow, I hadn’t even realized that on this aspect, I feel really connected. I can tune in, but then the next step is really hard for me to know what to do’.

So, just to recognize that there are, that we have a relationship with our body. I know that sounds a little, yeah, we are whole beings, but I think it can be helpful to recognize, do I live in a way that my body is supposed to be utilitarian? In which case that can be a setup for if that’s what I expect from my body and I’m constantly putting my body in a position where I’m blaming it for not showing up in the ways that I need it to that day, it just can create this self-judgment and self-criticism that we know and that is evidence-based does not support being able to enact other self-management strategies and just to, like, be feeling okay day-to-day. So, I think that’s kind of, to me, where the connection — I’ve always been interested in embodiment and movement personally, but I was working with folks where I was like, there’s something missing here. 

We’ve talked about all the energy conservation strategies, all the non-pharmaceutical pain management strategies, like, they have the knowledge. And then, I was starting to hear these little rumblings when we could, when there was self-awareness around, “Well, why didn’t you choose to do,” you could tell you were at that point where it would have been helpful to do X, Y, or Z, right? Whether that was a pacing strategy, whatever it was. And, so there’s this element also of self-compassion that I think comes in here, right? Like, how — and self-compassion is something that is, that can be very embodied. It’s not just like writing. It can be like journaling and writing. And also, like, self-compassion is like giving yourself the time to show up and take good care of your body and spend time with your body. So, I feel like I went on a winding journey, but I wanted to just give the overview, but I’m happy to make it, to make it a little more tangible to you. 

[00:23:18] Cheryl:
No, I’m totally following your train of thought. And it’s, I love the idea of naming your relationship or, you know, categorizing your relationship with your body as you would categorize like a different, a relationship with another human. And I think it’s funny. Sometimes I ask people at the beginning of the episode, what’s your relationship to arthritis? And sometimes people say, “It’s complicated.” They used to do that old Facebook status update that was like, ‘In a relationship’, or ‘Single’, or ‘It’s complicated’. And I think for many of us with chronic illness, it is very, very complicated. And there’s days or moments where it fluctuates. 

There’s times when it’s really easy for me to be, like, grateful for my body and what it’s able to do and feel compassionate and that I can imagine my little immune cells, like they’re trying their best and they just happen to be making a little mistake and attacking the lining of my joints. Other times I’m, like, angry at my body and want to trade it in, like I, there was a point — anyway, this is longer, but I had a real rock bottom, where a whole bunch of acute health issues had layered on top of my chronic illnesses. 

So, it’s definitely not just, quote unquote, ‘just RA’. But in 2017, where I started having panic attacks and I started feeling claustrophobic in my body — so, it’s technically like claustrophobia, like fear of being trapped. And I was trapped in my body. And I kept having this visual of a head transplant, or you just get my head onto someone else’s body and I just wanted, I wanted to get out. And this is, again, much deeper about, like, my GI issues were really bad. I was having a really bad gastroparesis where I couldn’t digest anything. 

So, I was malnourished and I’d had a car accident and a pilonidal cystectomy, and then I had a norovirus where I kept throwing up and then that shut down my GI. It was just a whole bunch of stuff. I’m laughing but, like, it was just overwhelming. And I think I was going to therapy at that time, but I think, you know, I think that there’s — I wish I had maybe even started therapy earlier. And I think the earlier you can develop a compassionate relationship with your body, the better, because I could definitely say that it was not helpful that I was, that I was lacking compassion. I was just angry and I just wanted to cut it off. I guess we would call, what would you call that? Like, an abusive or like, avoidant? Like, I wanted to put a restraining order — yes, yeah. Yeah. 

And but the thing that I — sorry, the other thought I wanted to say that’s a little more maybe relevant to people listening, hopefully what I just said was relevant to some people so they don’t feel so alone — but the thing that comes up a lot in the Room to THRIVE support group and just literally came up yesterday, is this idea that when you’ve been living with pain for a while, you can actually become disconnected from your body where you kind of — what was detached so that you don’t have to process and feel the pain. And then, when you start the somatic work, like when your therapist or OT or whoever asks you, like, “Where do you feel that in your body?” and try to help you, they try to help you become more connected, it can be really — it’s really scary because you’re like, my coping mechanism was avoidance or was detaching from my body and now you’re asking me to attach or to feel what I’m feeling in my body. How do you help people work through that? Or do you ever see that? 

[00:26:56] Lindsay:
Yeah, that’s a, it’s a really — you brought up so many, I’m bookmarking, like, points. Yeah. Yeah. I — so a couple of things. I’ll clarify that because I am not a licensed psychologist. I do not do — somatic is like so many people are using that word. So, I just want to clarify. 

[00:27:21] Cheryl:
Oh, yeah. I actually don’t — no, please correct. I thought somatic therapy is just —

[00:027:25] Lindsay:
No, no, no. That’s, I think there’s not like a registered trademark, but just if people have experiences around there’s a practice or, approach or method called ‘somatic experiencing’ that is specifically used by psychologists and therapists. So, and I am not trained in that. And so, if anyone listening is like, oh, SE, or somatic experiencing, that’s its own. We’re just going to bracket that here because I can’t speak to that. But when I think about like body somatic, lowercase ‘s’. Yeah, there are so many pieces that make it really comfortable — sorry,  uncomfortable. 

So, I want to zoom back and just say at the beginning of this, for so many things in the life of chronic illness, like, you’re allowed to be wherever you are. And so, like, when we talk about mindfulness, you don’t need to be mindful of the time. There are times when it is good to distract yourself. Same thing with body. You don’t need to be connecting to your sensations all the time. That can be flooding, right, for many different reasons. So, there’s not a ‘should’ around this, which is why the work I do is only when people want to, which doesn’t mean there aren’t challenges. But say I do, here are some of my goals around like the relationship I’d like with my body and movement and connecting in that way. And so, we start from where you are. 

And I talk about this around trauma, because the movement approaches that I’m trained in are trauma-informed. And I’ll give one example. If people want to look up Lynn Stoller’s work, she’s an OT and a yoga therapist. And one of the first trainings I did was her sensory enhanced yoga that is specifically around trauma healing, is evidence-based, growing. Primarily started with veterans with PTSD, but it continues to undergird research around like now what we know about trauma is that there are a lot more ways than when I first was like reading the DSM to define that. And there’s some emerging research around that in living with a long-term chronic illness can — doesn’t mean that this is everyone’s experience — but can be traumatic or considered a trauma. 

So, we think about, so when I talk about this bit about trauma, I say that in that context, not everyone will identify with that specific language. But that trauma and living with chronic stress, chronic pain, I’m going to talk about all that together, even though there’s different experiences that impacts physical and psychological experiences, and we see those changes also at the brain level in terms of where we see activation and deactivation or inhibition, which is like where Lynn Stoller’s work might be interesting to some folks, because I’m not going to get on my neuroscience nerdy trip today. 

And it also means that because of that, connecting with your body, it makes total sense and you are not alone if that is confusing, chaotic. And it can be unsafe to do alone. And by unsafe, it can, especially in the context of traumatic experiences, which is why people will often do this work with somebody alongside who is trained. So, just wanted to name those two things. 

And — and, both and, we know the research shows that mind body practices, by which I mean bottom-up. And by bottom-up I mean we are moving, we are doing the things, rather than — which is where I can’t speak to SE, but there are approaches where we’re sitting with or maybe taking a more cognitive or top-down approach to envisioning the body. 

So, the work I do is we’re moving, or we’re getting into a posture, but we’re experiencing something through the body, which is, especially if there is ongoing pain, if there is a history of trauma for any reason, like, that is where we see we’re able to bypass some of those re-experiencing pieces and where we’re able to slowly find ways to have positive to neutral, sometimes neutral, experiences with movement, right. And so, just wanted to name that too, because I do think there are different ways of approaching semantics. 

And so, the perspective I come from the training that I’ve done and my understanding of what is helpful is in the doing the checking in, starting where you are, which might be nothing that looks like yoga. I don’t only use yoga. So, I say I do mindful movement because I don’t only — I use what supports the client. And so, that might look really subtle. That might not even look like a thing. That might be, we are connecting to breath, right? And where does that land with you? That might be the place we’re starting. So, it really looks different for each person. But I just wanted to speak to that piece since you brought up that for so many, it is, it’s like, why would I — why would I choose to do that? Like, why? Because this is the only way that I’m getting through day-to-day is really by dissociating or whatever language you want to use around that, compartment slicing. 

And if that’s where you’re at, that’s okay unless it’s not working for you long-term, unless it is cutting you off from relationships, from meaningful roles and activities, right. If it’s a long-term strategy, it often — and it’s the only one — it often isn’t sustainable. So, that’s where we start thinking about, like, how is that impacting, which is what OTs often come back to, is like, how is that impacting the rest of your life? If it’s not, if it is working for you, that’s not anything that I need to poke a hole in because there’s some like theory out there or there’s an evidence base, like, your life is also your evidence base. So, just wanted to name that too. 

[00:33:49] Cheryl:
Yeah, that’s super helpful. And I hadn’t actually not heard about the sensory enhanced yoga as well. So, I’m going to check that out and definitely put a link to Lynn Stoller in the show notes as well. And I love the distinction between a top-down versus a bottom-up approach. And I don’t know if the people listening have heard of that before, but it’s like a concept that applies to a lot of different kind of practices, whether, yeah, talking about cognitive behavior therapy or, you know, yoga and stuff like that. 

And I wanted to, the other thing I wanted to, that’s adjacent to all this that I wanted to ask you about as well is you mentioned before we start talking that is that you really like to ‘Help people learn to become their own loving companion along the journey’. And I wrote these quotes down so I didn’t mess them up. I think there’s just, again, like, such a poetic, beautiful phrase. And almost like deceptively simple, though, like you’re — it sounds like duh, I would want to be my loving companion. 

But again, that is hard on a daily basis when you’re, it feels sometimes like your body is revolting against you or that you have this unpredictable, almost like a little, like a, yeah, it’s when your body is unpredictable, it’s hard to connect to it sometimes. So, how do you help people be like a loving companion on their journey? 

[00:35:14] Lindsay:
Yeah. Oh, that’s like the question, isn’t it? I wish I could. Just a heads up that I won’t be giving a Steps 1 through 4 on that. I will — but I’ll name a few of the stops along the way. The reason I see that as the overarching goal, and of course with each individual, we have more specific tailored goals, but is because it is a journey. So, I think that’s something that’s really important to name, and depending on listeners, like, where you are, like you might not want to hear that. You might want to be like, “I don’t want to be on a journey. I would like this to be, like, over and done.” And at some point, if you are living with long-term, which doesn’t mean forever for everyone, but long-term and/or chronic health issues, that is a journey. 

And so, the way I think about this is if you, you know, and I’ll come out with metaphor in a second, but I think it can be helpful to have some visual. So, when I say ‘journey’, I don’t think of ‘Oh, I signed up for like, I don’t know, this lovely walk through the woods where somebody is packing my lunch’. Like, if you’ve been recently diagnosed, or if you remember when you were diagnosed, that’s generally not people’s experience. It’s kind of like being dropped in the middle of a wilderness. If anyone’s read Hunger Games, watched Hunger Games, like, just dropped there. Don’t really have any — maybe not the whole children killing each other. But, like, no one gave you, a map for what to do. You didn’t choose this. This is not a luxury cruise that you signed up for. So, I don’t want to say, like, “Oh, this is going to be so fun,” even though there can be fun along the way. 

So, I think of these three phases that, again, aren’t linear that I think can we can move back and forth through, but that first piece is orienting; and Cheryl, I think you do such a great job at in. I think you reshared recently, one of your top favorite podcast episodes of, like, for folks who are recently diagnosed. And so, I think of that as like an orientation period. And that can happen when there’s a change a new symptom or a medication change, that can happen over and over again. But especially that first time after diagnosis and the things we’re thinking about together there are right now, like, this is a gathering resources and support time. 

And that can look like who’s the next person, who’s the next provider I need to get onto my team. You talk a lot about how important that is to be identifying and building a team along the way. But resources can look like so many things. What does my social support look, like, what, you know, what are those resources. Imagining that when you’re dropped off with nothing but what’s on your back, like, okay, I’m gonna have to start to pull together something for this journey that I didn’t sign up for. 

I think this is also a time when we’re thinking about clarifying what are the priorities right now, especially either after an initial where there’s both shock and also possibly a diagnosis because there was a change in function. Like, priorities often need to shift. Sometimes that’s not even a choice. It’s not like sitting down and being like, “What, let me clarify my priorities.” And often there is this point where we have to be, like, have a conversation about you are in a different season. You can feel all the things you want to feel about that. And how do we prioritize so that you can meet your most important needs right now and take those next steps? 

And then, we come to this place of what are the intentions that we’re setting? And so, for like therapeutic work, that’s more specific. But I think this road map is something that, when you’re thinking about being your own loving companion, or I think of I’m trying to teach people to OT themselves because those are the skills, those are self-management skills. When we say self-management, I don’t know if you’ve defined that. That can sound really clinical. But it’s like all the things that no one teaches you, except people like Cheryl and I who lead groups around this and try and do the work of teaching, but around what does it mean to live life with a chronic health issue, right? Everything from med management to social, how do I have conversations with my friends and loved ones? All of that. 

And so, that orienting again, that can happen more, of course, more than once. Eventually, we, if we’re back in the wilderness, we’re like, “Okay, I think I know, I don’t know cardinal directions, but I know where I am ish enough to, like, I need to move in some direction because I can’t live here forever. So, what is the next right step?” Not like I might not even know, I might not even see that destination. Remember, this is not like a pretty paved trail we’re on. But that next piece is where I think a lot of work, especially in therapy context happens, which is the exploring. We’ve set intentions. Sometimes people say goals. I like saying intentions that I’m not talking about like the measurable SMART goals. But like for the season, what are the priorities? And then, you’re taking action, you’re assessing, and you’re adapting. And that can be true for whatever that intention or goal is, right? We have an idea of what that action looks like. But the reality is that a lot of this is trial and error. So, like, I tried this change in my routine or I tried that, that can be for anything. How is this working? Assessing, going back, revising. So, this is like a lot of life is in that messy middle, right.

And then, this is where you’re also building those skills and self-trust to trust yourself that even in the uncertainty, which is always there pretty much, that I can make a choice and decide what next is the next right thing. And I can, even if that ended up not leading where I thought it would, that I know that I can come back and connect back to my priorities where I am, and I will ask for help when I need it. And also, I’m the one, right, like you’re the only one living your life, no matter how much support you have around you, right? And this is where partnership with body, not just in the, like, that interoceptive, self-compassionate way, but also, learning to trust what you’re learning and to self-advocate, and all of those skills that are happening in that. 

So, it’s, and then, and back and forth, we get to this place where I think of it as the generative place, which doesn’t mean that the things are solved, right? We’re not coming from a fixing model, but I think of this as like ehere you’re creating your path you really are create — this is all trailblazing. That’s why I think of like a path like we have some road markers, I guess, from people who have gone before, which is why it’s so important to find other people. Everyone’s experiences different and there are things we can learn from others around us. 

But this is where there’s a little more flow that season of like, okay, yep, there’s still going to be things that come up that are unexpected; and I have rhythms and routines that I know are pretty consistently supportive, or I know how to revise those to support myself if something changes. I’m able to envision, I’m coming out of just like survival mode and, okay, I can do this. And I can go back and finish that degree that I, like, abruptly stopped. Or I can, I feel like we can think about another kid, or whatever those things are that have been put on the back burner where there feels like there’s more space for that. 

And that whole process, going through that whole process to me is how you can become your own companion is just through doing it and showing up, usually with somebody alongside you at first modeling that. And that’s why I think the power also of community is so powerful. I just said the power of community is powerful. It is. But like, we learned that by also offering it to others around us, right? Like, we walk alongside and then we recognize when we can’t go places with people. We can’t go to that appointment. We can help prepare it from a provider perspective. I can talk through that with you. We can debrief. And you show up by yourself. Even if it’s with a partner, most people will be like, it’s still me. This is still my journey. 

The answer to how — those are some of the way markers. And I think the bigger answer to being your own loving companion is like trying and failing, and having the days where you still are, like, the self-critic is louder than the inner advocate and recognizing when that’s happening and continuing to. Like, Nayyirah Waheed is a lovely poet and she has a few lines — I want to get it right — she says, “Be easy, take your time, you are coming home to yourself.” And she didn’t write that in the context, I don’t think, of experience with chronic illness, but I think about that a lot. That it isn’t a linear journey. No one can — if somebody tells you, “Here’s the 10-step plan or protocol,” I might be a little cautious about that, but those are some of the things that I’ve seen time and time again, as like the directions that we had together.

[00:45:00] Cheryl:
Yeah, that’s so comprehensive, and I resonate with that so much. And I think, you know, it’s just your idea of not wanting to maybe be too rigid with a step-by-step protocol makes sense, but also it reminds me of the word, how the word ‘acceptance’ is kind of complicated. I think the idea of having a rigid framework can be complicated, but really people do feel so destabilized after a chronic illness diagnosis that often having the idea of steps to follow is itself therapeutic, right? They say there’s this kind of three phases or thing about the phases of grief, how they’re not meant to be linear, even though a lot of people take them as linear. They’re not designed to be linear stages of grief. They’re designed to be things you go in and out of. Even just being able to name them is so powerful. 

And I love that when you communicated to me that ‘Help people become their own loving companion’, what I thought that might mean at first was like — I don’t know what you would call these, like, maybe self-esteem kind of things from that I grew up doing in the 80s where you’re like, look in the mirror, like, “I love myself,” like I guess that’s one of the top-down, like where you’re — and that’s not bad, right? Everyone has different tools in their toolbox that help and certainly certain mantras are like things that reminding yourself that you are worthy and dismantling your own internalized ableism. Those are so helpful. But also, I love that. It’s like an action-oriented framework where like you develop your trust in yourself through the action that you’ve already taken. Is that right? 

[00:46:40] Lindsay:
Yeah. But like in the, I don’t know, like in the doing, in the showing up. And the key part is there is this piece of recognizing and honoring and affirming, right, not just in terms of like mantras and affirmations but like, I’m doing this. There isn’t a perfect way to do this. There’s no one right way to do this. No one knows how the hell to do this. And I am — and that’s messy. And yeah, yeah, there is action in there because you’re living your life and there inherently is action that needs to happen, especially when, you know, whether you’re newly diagnosed or not, like, that’s the reality is like, there’s usually always something to be doing, or following up on, or shifting. So, yeah. 

[00:47:35] Cheryl:
This is so helpful. It’s gone by really fast, but I do need to move on to the rapid-fire questions, but I can already tell we might need to do a part two. Yeah. And you’ve shared so much wisdom, but is there anything specific that you’d like to share with people in that orienting phase with a brand new, like, someone — sometimes it strikes me if someone writes a report or a report, a review of the podcast. And they’re like, “I just got diagnosed like two hours ago. And I’ve looked up authorized podcasts and founders.” And like, so the brand new, what would you say to somebody who like just got diagnosed?

[00:48:10] Lindsay:
Yeah. I don’t have — this might not sound like quippy, but I think just that reminder, this is a journey and you don’t have to go it alone. I think there can be a lot of isolation or expectation that I have to figure this out alone. So, I think both of those, like, it’s a journey, I think sets that up as it will be a process. And you don’t have to do that on your own. 

[00:48:38] Cheryl:
Yeah, that’s beautiful. You can’t repeat that enough and I love it. And do you have a favorite, like, inspirational saying or quote for difficult days. I love the one you just shared, but the, “Be easy, take your time, you’re coming home to yourself.” But is there another one, or no? 

[00:48:59] Lindsay:
That’s probably the one from somebody else that I, yeah, use the most. Something that I say, which is weird, like no one needs to go around quoting me on this, but a phrase that I found myself saying to clients quite often is, “You’re allowed to be human.” And that covers all manner of things. You can take it how it lands with you. But especially because there can be a lot of weighty expectation on how to show up. Like, you’re allowed to be right where you are, with whatever feelings you have, with however things are going. And you’re allowed to be human. Yeah. 

[00:49:41] Cheryl:
I love that. Again, something I can’t repeat enough myself. ‘Cause I often, I’m like, everyone else is allowed to have mistakes, but not me. There’s a funny — I want to give credit to this person, but I don’t remember who it is. I’ll look it up on my own Instagram. There’s a sound where someone’s like, “You don’t have to be perfect,” or, “You don’t even have to be really good or exceptionally good. But I do.” 

[00:50:04] Lindsay:
[Laughs] Yeah. Right. How we have such different standards or something, like we exempt ourselves from that kind of grace that we offer to others. 

[00:50:15] Cheryl:
Yeah. Well, that’s why I think groups and or even just any social support is so key because we tend to find it much easier to give that compassion to others. Well, and this is not, this is maybe not super relevant, but from your OT background, do you have a favorite arthritis gadget or tool in the toolbox?

[00:50:33] Lindsay:
You know, I am so not in the gadget world. And I was thinking about this and the one that honestly, that I personally, like, stole from clinic was a piece of Dycem. Yes. So, I’m, sure there are like fancier versions. Basically, for those who are listening, you can Google ‘Dycem’, but it’s a non-adhesive, but sticky — Is that the best way to describe it? Like, a non-adhesive but sticky thing that’s like for opening jars or for just, like, increasing grip on anything or putting between, well, sometimes put it between like a slippery surface, like underneath like a table if you don’t have a placemat that’s sticky. But honestly, like, you can cut a placemat, a sticky placemat instead of like Dycem, I think, is something that clinics tend to use more than people. I feel like I give those out to friends, family. I’m like, “Here, have a —” because they’re way better than the jar opener things that are out there. The other ones that are not very grippy. 

[00:51:34] Cheryl:
No, it’s one of the things where it’s the old standard classic, but I’ve had so many patients tell me that they — that it’s like surprisingly helpful, and I like those. On the one hand, I do have certain gadgets that are very specific like there’s a special like an eyedrop opening aid that helps with — that is for these specific, if you’re watching the video, I have tiny single use vials of eyedrops which are used a lot in Sjögren’s, and for me I have really dry eyes, also for rheumatoid arthritis. And they’re, like, you need a really specific tool for that. But things like Dycem, they’re so multi-use. You can use it to open your nail polish, you can use it to get a better grip on your tweezers. You can use it to — on your hairbrush, on your fork, on your plate. It can be used in so many ways. So, in your car, to open, I don’t know, get a better grip on the steering wheel or something like that. So, love it. Classic. Do you have a favorite — this is where I’m going to start talking, this is going to be the Severance era of this podcast. No, I’m just kidding. But of those of you who follow my social media know I’m obsessed with the TV show Severance right now. But do you have a favorite book or movie or show you’ve been? What have you been watching recently?

[00:52:42] Lindsay:
Oh, you know, Great British Baking Show. Thankfully, I had a couple seasons because it’s, I can’t watch anything stressful. The world is on fire. And so, I just need people who are making delicious things and being kind to each other. So, that is definitely what I’ve been watching a lot recently. And I also, this, I didn’t read this super recently, but I was rereading parts of it that I wanted to shout out. Rebekah Taussig is an author, I don’t know if you’re familiar with her, but she is a disability advocate and an author and just a lovely person. I think she has a Substack. I think it’s called ‘This Too’, but I can share that. But she has a book, sitting right here on my — 

[00:53:35] Cheryl:
Oh, ‘Sitting Pretty’. Yeah. I do know her. Okay. No, I didn’t know her actual name. 

[00:53:39] Lindsay:
Yeah. ‘The View from my Ordinary Resilient Disabled Body’. And this is just something, if anyone’s watching, I have a million tabs in this book. And it’s just something I often just go back to pull that inspiration, honestly. The nuggets. And it’s also she’s a great writer. It was hilarious. So, sometimes I’ll reread when she talks about her dating experiences. 

[00:54:04] Cheryl:
Oh, my gosh. Thank you so much for that rec. I am putting this in the show notes as with all our other recs. And again, all of your reflections have answered this in one way or another, but for the record, what does living a good life and thriving with rheumatic disease mean to you as a provider?

[00:54:31] Lindsay:
Yeah. I think the most important thing is that it — what does it mean to the person who’s sitting in front of me? I think I’ve done a lot of work at trying to withhold my own, what I bring into the situation, and really center, like, what does that mean to you? To me, when you feel aligned with your values, where your time and your energy can really be aligned with what you care about, that’s a great indication to me that you can be present in your most meaningful relationships, and if not thriving, because I know that can feel like this lofty goal. Then, feel like the life that you have right now, there is good and all the rest of it, right? There’s all the rest of it too. So, yeah, I think that’s what I would say. 

[00:55:30] Cheryl:
I love that. I love the word ‘aligned’, like feeling aligned. And even just like when your time and energy are aligned with what you care about, like, I just, that’s, to me, like definitely something I like measuring, being able to visualize it that way because sometimes my, yeah, sometimes it’s not. So, it’s good to ask yourself, you know, is your time and energy in line with what you care about? I love that. And again, I just appreciate all the time that you’ve shared and the wisdom, the nuggets of reflections, and I’m going to put your all links in the show notes, but can you just let everyone know verbally as well, where can they find you online and on social media?

[00:56:13] Lindsay:
Yeah. So, my website is my name, Lindsay Voorhees. You can reference all the vowels when Cheryl puts this — 

[00:56:23] Cheryl:
It’s Lindsay with an A. 

[00:56:25] Lindsay:
Yes, Lindsay with an A, double O, double E, dot com. And I am not the most active on social media in these days for my own mental health reasons. But I am at @LindsayVoorheesWellness on Instagram. So.

[00:56:41] Cheryl:
No, and you and I have had the pleasure of, you know, being able to talk with you and become closer friends with you. And I appreciate your example of have setting an example for me of having boundaries around social media is something I’m still really trying to negotiate because it’s like everything we talked about. It’s not an either/or, it’s a both/and. It’s so life giving. And so, the connections to the chronic illness community on social media are so deep and meaningful to me, but at the same time there are days when, to put it in the words you were saying before, the time and energy I’m spending on there are not aligned with my overall mission. I’m getting caught up in, like anyone else, we’re all human. So, I’m very self-compassionate to myself, but also need — I’m still just negotiating. I’m sure it’s going to be a work in progress for a long time. And I just learned from examples from others of how they’ve been able to say, okay, like, this is what I’m willing, this is the amount I’m willing to engage on social media and no more, you know?

[00:57:49] Lindsay:
Yeah. And that changes, you know, there are different seasons too. So, I think that’s helpful for thinking about. 

[00:57:54] Cheryl:
Yeah, that’s such a good point. There’s people whose accounts I connect with and learn so much from who have stopped posting and haven’t posted in like a couple years. But you can, you know, there was a season that they were really active and that’s, you know, having and meaningful impact on the world years into the future. So, thank you. Thank you so much in you. And Lindsay has a program called ‘Root to Rise’ which again, so, if — I think you need to write a book, by the way. Not need to, but if you ever want to write a book, I will support you and cheerlead you through that because you’re very eloquent. I’m not putting pressure on you. Sorry. I’m really good at like giving other people, like, ambitious ideas for what they should be doing with their life. 

[00:58:36] Lindsay:
Run with this!

[00:58:38] Cheryl:
Yeah. Yeah. Yeah. Oh, and there’s, if you really — you all should check out the YouTube video because — and you can find the YouTube video on my website, arthritis.theenthusiasticlife.com. But you can see Teddy. Hey, puppy, puppy! Oh, he’s so tired. He’s resting. He’s a good example to me of rest. Wow, he is really tired. All right. Well, thank you again. We’ll talk to you later. Bye-bye for now.

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