Occupational Therapy for Rheumatoid Arthritis and Similar Conditions: Cheryl’s Interview on ACR on Air

Listen now:

Summary:

I recently had the pleasure of sharing all about occupational therapy for rheumatoid arthritis and similar conditions on the ACR on Air podcast! It was such a pleasure to share my perspective as both an RA patient (for over 20 years) and as an occupational therapist for just over a decade.

This podcast is from the American College of Rheumatology, the professional association for rheumatologists (along with the sister organization Association of Rheumatology Professionals, the association for allied health providers like nurses, occupational therapists, physical therapists, counselors and more).

Episode at a glance

• How are OTs different than physical therapists and mental health providers?
• Why did I become an OT (spoiler alert: it wasn’t to help people with arthritis initially!)
• What’s the first question I ask at an initial OT session
• How OTs help with so much more than hand pain
• How occupational therapists balance “remedial” (fixing) tools with “compensatory / adaptive” tools and creative workarounds to help you improve quality of life
• Ways that OTs can help you implement lifestyle changes like exercise and stress management 
• How and why I started my comprehensive self-management and support program Rheum to THRIVE

Cheryl’s favorite quotes from this discussion:

Here are some of my favorite quotes from the episode – what was your favorite? Have you ever gone to OT to help you function in daily life with your rheumatic disease? Let me know in the comments!

• OT is comprehensive: “I love the fact that as an occupational therapist, now that I realize what it is that you do is that you deal with more than just the pain in the hand. You deal with the whole context of who the person is, the environment that they live in, the psychosocial and mental components of pain and disability, which is really fantastic.” Dr John Hausmann (Minute 28:22)
• OT’s role in chronic conditions: “In the healthcare setting, often insurance companies really work from that quote, the “medical model” or the acute care model. They want to see someone improve in six sessions or in eight sessions, and it’s when someone has a chronic progressive condition like rheumatoid arthritis, it’s much harder to sometimes justify the time it takes to do what we do truly really well. So I think, yeah, if I could say, if you can imagine your first session with one of your patients, first session with occupational therapist, the first question I ask is, walk me through a day in your life what’s going well and what’s not going well.” – Cheryl Crow (Minute 9:14)
• OTs make goals that matter to you: And we (occupational therapists) are very detail oriented, so we will make a goal that is ridiculously specific. No goal is too small. So the goal could be it’s all about functioning in your daily life. If you can’t turn the page in your child’s book when you’re reading them a book, we’re going to work on that. We’re going to see and we analyze, is it a physical impediment or a barrier? If it is, it’s like a big decision making chart. Choose your own adventure. Is it something that is we can control? 
• And if we can’t control it, let’s make a plan. If it’s decreased hand strength, we improve your hand strength. The hands are very involved. And then there’s, okay, wait. If we can’t treat the underlying variable, like you have a fixed deformity or you have ulnar drift, I’m not going in there performing surgery, we’re going to figure out how to compensate for that. Can you hold the page of the book a different way? Can you hold it with a different finger? Can we get a bigger book, a different book? Can we switch to the Kindle? We are really like life skills detectives and help people with the minutia of their life. (Minute 9:51)
• Occupational Therapy’s Role in Lifestyle medicine: Who’s going to be there on the ground to help them problem solve and symptom track? Well, how much exercise is too much? How do I find that just right level? And what is ‘exercise?’ It’s not a monolith, right? Exercise could mean running, cardiovascular exercise, it could be stretching, it could be strengthening. You could be targeting the lower body, the upper body, just the hands. So we help them kind of sift through this overwhelming number of things that they can do to positively improve their quality of life.” Cheryl Crow(Minute 13:55
• Life coaches versus OT Dr Hausmann: You remind me of nowadays, life coach is such a popular thing. It sounds like you guys were the OG life coaches out there. Cheryl Crow: Actually, someone was making a shirt for that the other day, like occupational therapists, the original life coaches, I mean, they got better PR than we do, though we should have named ourselves something more understandable than occupational therapy. But yeah, I encourage people to look at it that way. (Minute 14:33)
• Disease severity is only part of the picture: “A rheumatologist even told me at the conference, well, we don’t really have to refer to OT as much anymore because the patients are doing so well. Well, someone’s ability to function is not only dictated by the severity of their disease, it’s dictated by the environmental and contextual demands of their life. So if I have mild, and I saw this in pd, this is true pediatrics, this is not just an RA thing. If a child with a mild, let’s say cerebral palsy in an environment that has no adaptations, no support, no financial support for therapies, no educational accommodations, that child is not going to function as well as somebody with severe cerebral palsy who has tons of accommodations and adaptations and support, and it’s the same principle for RA. So just because your patient’s blood work might look good, they don’t have severe deformities, doesn’t mean it wasn’t having an impact on their quality of life.” – Cheryl Crow, (minute 17:28)
• Fixing versus compensating: “My decision making matrix is always: can you remediate this or do you have to compensate and adapt for it?” – Cheryl Crow (minute 20:26)
• Ableism: But if we continue to only define a normal life or a good life as one without any disability or health conditions, we’re missing out on all the opportunities to still build a wonderful, beautiful life with pain, with a condition. And so for me, that’s something that’s –  long story around, that social media has introduced me to this idea of disability pride.
•  But also I would make these videos of me wearing my gloves and doing my thing and doing my injections, and people would say, “You seem happy. Like, why aren’t you – I would be ashamed. Or they’ll say, I’d be ashamed, I’d be embarrassed. I tried wearing a compression glove and people said, what are you doing? You look stupid or you don’t look like everyone else.” Cheryl Crow(Minute 26:52)
• “It’s SO in adult’s best interest to, and teen’s best interest, but again, that’s a bigger hill to climb, it’s in your best interest to really challenge their internalized ableism and be like, I refuse to think that I’m less than because I need to wear a splint. I’m not less than, I’m still a cool person. This is me talking, this is me and Michael Jordan talking in the mirror and the SNL, “I’m good enough.”
• And again, having a team of healthcare providers, whether it’s social work, physical therapy, occupational therapy, psychologists, counselors, they can help the patient navigate what it means to try to have a good quality of life with your chronic condition. (minute 27) 
• Why I started my work with Arthritis Life: “And it started actually in person when I presented at that juvenile arthritis camp, they asked me to come speak about some basic occupational therapy tips and tricks and hacks, and just answer the parent questions as well.
• And I noticed that people just felt in the dark about how to navigate the day-to-day of their condition. They felt confused and overwhelmed, like “Wait, what am I supposed to do now?” And so I feel like I often say that having a chronic condition, whether it’s lupus or rheumatoid arthritis, it’s like a job. What patients need or what anyone needs when they start a job is like an orientation manual. You need someone and maybe a guide. (and that’s why I made Rheum to THRIVE) -Cheryl Crow (Minute 43:11)
• Living Life to the Fullest with OT: Dr. John Hausmann: Cheryl’s experiences and perspectives truly showed me how OT isn’t just about rehabilitation, but about empowering individuals to live their lives to the fullest. (minute 51:16)

Full transcript:

Introduction:

Welcome to a CR on Air, the official podcast of the American College of Rheumatology, where we have engaging conversations with leaning rheumatology professionals on topics such as the latest research on rheumatic diseases, solutions for addressing practice management issues, legislative policies impacting patient care, and more. Here’s your host.

Dr. John Hausman:

Welcome back to another episode of a CR on Air, the official podcast of the American College of Rheumatology. I’m your host, Dr. John Hausman. Show notes for this episode can be found@acronair.org. You can also find our previous episodes on Apple Podcast, Spotify, and on your favorite podcast app.

Over my career, I have referred hundreds of patients to occupational therapy without really understanding what it is that an occupational therapist actually does for patients. I mean, in my mind, an occupational therapist was just somebody that helped improve a patient’s mobility and decrease pain, mostly focused on the arms and hands to distinguish it from a physical therapist that I thought did the same for the rest of the body. My typical referral to occupational therapy was for an elderly patient with hand pain related to osteoarthritis. The referral would often read osteoarthritis and hand pain. Please evaluate and treat.

Thankfully, today’s guest has opened my eyes to everything that occupational therapy can offer patients. I learned that OT is not just about improving mobility and decreasing pain, but they actually help people do the things they want to do. This can include their occupations and activities of daily living, but also their hobbies and anything that brings meaning to a patient’s life. And this can include cooking, painting among other activities. They even provide the needed psychosocial support that patients are often missing.

Our guest today can provide a firsthand account of the benefits of occupational therapy, especially for people living with rheumatic diseases. Before becoming an occupational therapist, Cheryl Crow lived with rheumatoid arthritis. Her personal understanding of RA and knowledge of OT led her to found the website Arthritis Life, whose mission is to educate and power and support people with arthritis.

Cheryl creates entertaining and educational videos featuring arthritis life hacks, and she provides insights into the psychosocial aspects of life, living with an invisible chronic illness. She hosts the Arthritis Live Podcast and runs the online Self-Management course and support group called Rheum to Thrive. In today’s episode, we discuss who should be referred to occupational therapy, what actually happens during an OT visit, how to manage the pain that often results from exercise, a few of her favorite life hacks and her personal journey from patient to advocate. Enjoy. Cheryl, welcome to the show.

Cheryl Crow:

Thank you so much for having me.

Dr. John Hausman:

I’m so excited to interview you. First, I was looking at some of your stats. You have way more episodes and podcasts than we do, and you’re a wonderful host and I think this is the first time that I interview another podcast host, so I’m very excited about this.

Cheryl Crow:

Oh, thank you so much. Yeah, it’s been really wonderful. As somebody who grew up thinking, I always thought my voice – everyone thinks when they hear their voice on a voicemail, “my voice sounds weird, people aren’t going to listen!” I felt good on video, but I didn’t feel confident on audio only. So it’s been wonderful to see people not being annoyed by my voice as much as I am.

Dr. John Hausman:

So for people that don’t know you, can you tell me a little bit about your history of, your journey as it is from being a patient to an occupational therapist, and then maybe later on to some of the work that you’re doing online?

Cheryl Crow:

So I was diagnosed with rheumatoid arthritis at age 21 in 2003, and so it was adult rheumatoid arthritis. But I kind of joked that I still felt like a kid in some ways and I, in a short period, went from athletic, healthy my whole life to rapidly losing weight and muscle mass. And my whole diagnosis journey was really challenging. It was not a typical RA presentation at first, until it was.

So I only had one joint that hurt and I didn’t really care about that. I was going down the other rabbit holes of my GI system and why couldn’t I digest food anymore? And anyway, long story short, that experience kind shaped my passion for helping people who are newly diagnosed. But yeah, I was just a patient person finishing my senior year at Vassar College in New York actually.

So then I ended up working – long story short, this is my challenge, even after a hundred episodes, this long story short! I actually became an occupational therapist, not because I thought we had anything to do with arthritis, I actually had no idea. I had never been referred to OT. I wanted to help kids with developmental disabilities. I wanted to be a Special Ed teacher initially. And then I saw how much fun the kids had in OT, and I actually thought with my personality type, I like working one-on-one. Controlling a classroom and behaviors was really intimidating for me.

So I went to OT school to help people, kids with autism and down syndrome and CP. And then I learned all these amazing tools to help me with my rheumatoid arthritis. And I didn’t even know – this was six years after my diagnosis – that my fatigue even came from my rheumatoid arthritis. I didn’t know about joint life hacks, adaptations. I learned all this in occupational therapy school and that also planted the seed for my later work. I was like, “Why did I have to become an OT to learn all these tips?”

Dr. John Hausman:

That’s so interesting. So as you were learning to become an occupational therapist, you started learning tips that would help you in your daily life as somebody that has to deal with arthritis every day.

Cheryl Crow:

Yeah, and even just understanding how rheumatoid arthritis really is a systemic disease. I’m sure my doctor at some point did educate me and maybe I just forgot, but I kind of thought of it as just affecting mainly my joints, versus affecting all of my body systems. And so it was really fascinating.

Dr. John Hausman:

Talk to me a little bit about occupational therapy. I think we hear much more about physical therapy. So can you give some examples about what an occupational therapist is, what services it provides and how that’s distinguished from physical therapy?

Cheryl Crow:

Yeah, it’s such a common area of confusion and there certainly is an overlap. I’m a very visual person. So if you could imagine with me a little Venn diagram where in the middle circle we have occupational therapy. On one side we have an overlap partially but not fully with physical therapy. And on the other side we have an overlap with psychology and mental health providers.

And so interestingly, when people try to differentiate OT from PT, they often will say stuff like, well, PTs will do gait training and walking and stuff, and OTs really specialize in the upper body. That’s kind of the older model, but it’s true to some degree. But the thing to me that is such a glaring differentiator is that occupational therapists can work exclusively in mental health settings.

And so yeah, how is this possible is because our job, I like to rename us as “life skills therapists.” So occupational therapists help people who are having difficulty functioning in their daily life, whether that’s from a mental health condition like schizophrenia and having difficulty cooking, taking care of self-care and navigating your job because of that, or if it’s from arthritis or another physical disability. So the field was actually born out of mental health when soldiers came back from World War I, not only to help with their physical disabilities, but also help with the mental health side of things.

Dr. John Hausman:

As a rheumatologist, I have to admit that I never knew that. I always thought that occupational therapy are the people that deal with stuff having to do with hands and physical therapy does with the other stuff. So this is very enlightening for me.

Cheryl Crow:

Well, now the devil’s always in the details. As with everything, I could talk all day about the actual scope and practice of occupational therapy, but in end of the day, just like you’re constrained as a rheumatologist by the insurance barriers at times, we also are too constrained by the funding structures. Whether that’s in a school-based setting for pediatrics, in a school-based setting, there has to be an educational need for either physical therapy or occupational therapy in the public schools. In the healthcare setting, often insurance companies really work from that quote, the “medical model” or the acute care model.

They want to see someone improve in six sessions or in eight sessions, and it’s when someone has a chronic progressive condition like rheumatoid arthritis, it’s much harder to sometimes justify the time it takes to do what we do truly really well.

So I think, yeah, if I could say, if you can imagine your first session with one of your patients, first session with an occupational therapist, the first question I ask is: “Walk me through a day in your life. What’s going well and what’s not going well?”

And we are very detail oriented, so we will make a goal that is ridiculously specific. No goal is too small. So the goal could be it’s all about functioning in your daily life. If you can’t turn the page in your child’s book when you’re reading them a book, we’re going to work on that. We’re going to see and we analyze, is it a physical impediment or a barrier? If it is, it’s like a big decision making chart, “Choose your own adventure.”

Is it something that is, we can control? And if we can’t control it, let’s make a plan. If it’s decreased hand strength, we improve your hand strength. The hands are very involved. And then there’s, okay, wait, if we can’t treat the underlying variable, like you have a fixed deformity or you have ulnar drift, I’m not going in there performing surgery, we’re going to figure out how to compensate for that. Can you hold the page of the book a different way? Can you hold it with a different finger? Can we get a bigger book, a different book? Can we switch to the Kindle? We are really like life skills detectives and help people with the minutia of their life.

Dr. John Hausman:

So for patients with rheumatic diseases, what sort of benefit can you provide? I think if you go to the American College of Rheumatology, it says we take care of more than a hundred different diseases. So out of these, which kind of patient would you want us to refer to occupational therapy and what specific interventions are you going to do to help them with their arthritis or other conditions?

Cheryl Crow:

Yeah, this is actually hopefully a short answer, which is if the patient is having difficulty functioning in their daily life, performing the required activities of their existence, whether that’s – we actually have this a very detailed document called the “Occupational Therapy Practice Framework,” and it delineates things down to the minutia. I’m talking care of children, care of pets, financial management, health management.

So we have activities of daily living, which are the, we call them the basic activities of daily living. Things like going to the bathroom, feeding yourself, taking food that’s already been prepared from the fork into your mouth, chewing, swallowing. I mean, again, it sounds like I’m going down a rabbit hole, but that is a minutia we can help with. And I tell patients that, and they’re so surprised. It almost seems so too simple or too basic. They’ll tell me, well, I didn’t know someone could help me with that. It almost seems like it’s like, yes, I have a master’s in life skills. It’s kind of in a way, it sounds too simple, but it’s also to make an apple pie from scratch, you have to first invent the universe. It’s like, everything is complicated. When you get down to the level of detail of like, okay, well if I’m having difficulty with this task, why is it?

Is it, and you know as a Rheumatologist there’s always a billion variables. Is my medication wearing off? Is my body making antibiodies to the medicine or is it that I exercise today or maybe I exercise too hard and that’s why I’m fatigued? Or is it that I was exposed to a different stress? Stress is always involved.

So I think another way of looking at it is if a patient is struggling performing the required activities of their daily living, including self-care, including taking care of others, including doing their job, yes, the word occupation for us, occupation, I think of it as the jobs of daily living and your actual job. Most people have to work to live.

And then we also, I would refer to the very handy American College of Rheumatology 2022 – I’m going to try to say this in one breath – “2022 American College of Rheumatology Guidelines for exercise, rehabilitation, diet and additional integrative interventions for rheumatoid arthritis.” This is an evidence-based guideline based on over 500 pages of A PDF, you can look through all the stuff, but it comes down to self-management tools. Things patients do on their own to influence their disease state and to manage their condition.

So that’s exercise, that’s nutrition, which is a huge confusing area helping patients problem solve. It’s not enough to just tell them to exercise. Who’s going to be there on the ground to help them problem solve and symptom track? Well, how much exercise is too much? How do I find that just right level? And what is exercise? It’s not a monolith, right? Exercise could mean running, cardiovascular exercise, it could be stretching, it could be strengthening. You could be targeting the lower body, the upper body, just the hands. So we help them kind of sift through this overwhelming number of things that they can do to positively improve their quality of life.

Dr. John Hausman:

You remind me of nowadays, life coach is such a popular thing. It sounds like you guys were the OG life coaches out there.

Cheryl Crow:

Actually, someone was making a shirt for that the other day, like occupational therapists, the original life coaches, I mean, they got better PR than we do, though we should have named ourselves something more understandable than occupational therapy. But yeah, I encourage people to look at it that way.

And a lot of times occupational therapists will say, well, I’m constrained, constrained by the insurance barriers, but we canadvocate for our patients and say, look, this is a skilled service that is evidence-based, and we are able to improve this patient’s quality of life by getting into the minutia.

There is a document from the American Occupational Therapy Association, the “Practice Guidelines for Adults with Arthritis and Related Rheumatic Conditions.” And I’ll just give you an example. I feel like I was just kind of spit balling a lot, but an example goal from there. They had an example patient and treatment plan and goal for a woman with rheumatoid arthritis, it’s: “Client will independently dawn and doff wrist splints as needed to participate in ADLs and IADLs.

They will identify adaptive equipment and strategies to use during childcare, create a household schedule to help her pace and prioritize household and childcare activities. Client will participate in a minimum of four outpatient modified yoga classes,” those kind of things that patients are often left, you know I often just say, and this is maybe just my soapbox, but one 20 minute appointment with a rheumatologist every three months is just woefully inadequate for anyone that’s not in remission.

And I have been in medicated remission my first six years. I did well, and there’s a reason in some ways I was never referred to OT. Actually, I was in remission. I was living my life similar to how I did before, however, that being said, I still would’ve benefited from some proactive self-management instruction because when I hit my first flare up, I was completely confused in blindsighted.

I thought RA was diabetes where there’s this one thing you do in diabetes, it’s insulin. I know now diabetes is a lot more complicated, but in my head it was like, okay, with diabetes you have to deal with a bunch of stuff, but it’s like you have this solution and that’s the thing you take the rest of your life. So when I was put on my first biologic and methotrexate, I was like, okay, it worked. This is my evidence. My evidence is that I take this and it works. And my doctor was like, yeah, we’re super optimistic. It’s 2003, these biologics are life changing. And it was until, it wasn’t until my body created the antibodies and then I was like, first of all, just completely confused. Like insanity is doing the same thing and expecting a different result, but it makes you feel insane if you do the same thing and then your body gives you a different result. I kept taking the medicine and now I’m getting something different, and then what am I supposed to do with this increasing pain and fatigue? And I had to cope with the uncertainties and it.

Anyway, long story short, it still affected, actually, one of my little things I just wanted to make sure to say is that I think there’s an impression in rheumatology that for rheumatoid arthritis, because we have these great medicines that – someone actually, a rheumatologist even told me at the conference: “Well, we don’t really have to refer to OT as much anymore because the patients are doing so well.”

Well, someone’s ability to function is not only dictated by the severity of their disease, it’s dictated by the environmental and contextual demands of their life. So if I have mild, and I saw this in peds, this is true pediatrics, this is not just an RA thing. If a child with a mild, let’s say cerebral palsy in an environment that has no adaptations, no support, no financial support for therapies, no educational accommodations, that child is not going to function as well as somebody with severe cerebral palsy who has tons of accommodations and adaptations and support, and it’s the same principle for RA. So just because your patient’s blood work might look good, they don’t have severe deformities, doesn’t mean it wasn’t having an impact on their quality of life.

Dr. John Hausman:

That’s a great point. So pain is one of the most bothersome complaints for many patients. I can give you a specific example of pain in the hands. So a lot of patients either with rheumatoid arthritis or osteoarthritis have hand pain. These are patients that I often do refer to occupational therapy thinking that again, that you guys just deal with the hands, I’ll change that tomorrow when I go to clinic. But how would you approach somebody that has hand pain?

Cheryl Crow:

And first of all, I do not want to discount the importance of the human hand. I think it is vital for our function. And so I’m even, working in spinal cord rehab I’ll never forget, I saw a patient with a central cord syndrome where they could walk, but they didn’t have the use functional use of their hands. In many ways, it’s actually way more debilitating than having a lumbar or thoracic level spinal cord injury because day to day you use your hands for everything.

So I will first say that to make life even more confusing, there’s occupational therapy and there’s physical therapy, both are trained in the hand. However, there is a specialty certification you can get called being a certified hand therapist, that’s CHT. It is only available to people with a master’s in occupational therapy or a doctorate in physical therapy. And so that is somebody who has 5,000 hours additional experience and expertise in the human hand and who has passed an additional certification exam.

And so they are really considered hand specialists. And so maybe in your clinic, it is kind of confusing to me sometimes how there are different standards of different clinics. If you’re referring people to hand therapy, they might be like, “What’s this crazy lady talking about saying that I need to think about their fatigue and energy conservation and stuff?”

Now, technically I still think you should look at the whole patient. You should not just look at their hand. So just to clarify, if you know that somebody is a certified hand therapist, those are people they can really get in there after surgery where people have pins and stuff. I’m not a certified hand therapist. I’m a generalist, Master’s entry level occupational therapist. But basically it always comes down to me to, again, my decision making matrix is always: can you remediate this or do you have to compensate and adapt for it?

And that’s where we actually need to partner with the rheumatologist to understand: in your mind, are you at the point where with the medications available, this is as good as the patient’s going to get in terms of controlling their disease and we have to really focus on adaptation? Or did they just get diagnosed two weeks ago and they’re on prednisone and you’re waiting for the biologic to kick in and you’re like, we just need some interim strategies.

So at the end of the day, we get at it from both angles. We want to teach the patient how to remediate as much as possible, meaning again, if it’s decreased strength, decreased proprioception, which proprioception is one of the things that people don’t tend to think about. If I’m dropping things and I’m

Dr. John Hausman:

A common complaint by many patients, they drop their coffee mugs,

Cheryl Crow:

They drop things, and the lay person’s first thought is usually, oh, I must not have adequate hand strength dropping things. But proprioception is, I think you all probably listening here know, I’m used to defining things in my podcast is like a lay audience, but it’s your brain’s map of where your body parts are in space, and your proprioceptors are located in the joints.

So if your joints have dysfunction in them from inflammatory arthritis, it’s kind of logical to presume that possibly your dropping things could actually be from decreased proprioception. And actually that’s why I love my compression gloves. I feel like I’m on a commercial now. Compression gloves, no, but the gentle compression, the pressure actually gives your brain more input on where your fingers are in space. So it helps from the proprioception standpoint and decreases pain perception.

I’ve looked into the research on compression gloves and it’s interesting. The research is not extremely strong, but this is a case where it is associated with decreased pain. Patient reported pain. For me, I am surprised how when I first tried all my compression gloves, how much of a positive impact they made, I was skeptical. I’m like, how much can a glove really help? It feels so much further inside that the pain is coming from, for me, it’s like inside the joint. I say rheumatoid arthritis, if I’m flaring, it feels like someone’s squeezing my hand from the inside out of the joint.

So this is the outside in, what is this going to do? But it actually does (help). Well also it interferes with pain perception because your brain has a hard time processing multiple kinds of, my understanding of pain science right currently is that your brain has a hard time processing multiple kinds of signals at once. So pressure, pain, temperature. So you’re kind of scrambling it just like you are with putting on a hot pack or cold pack in addition to reducing for compression gloves, reducing swelling.

So there’s a lot of little tips and tricks. We’re kind of life hack experts, so we can do like, okay, we can do this. Put on your compression gloves. Honestly, and this is maybe, I don’t even know if I’ll just say this on the record, but because I honestly think that it’s so disempowering at times to feel like there’s few tools in your toolbox that literally for me, the benefit of the compression glove on the mental health standpoint is also that: I have a THING, I have a thing that could help me. It’s symbolic. I was joking to another OT, it’s almost like there is a pathway scientifically for why these help.

However there’s also a psychological benefit like Dumbo’s magic feather where you’re like, he has the magic feather and he believes that it’s going to help him in the same way. When I put these on, I believe that they’re going to help me and thus they help. Again, I wouldn’t advocate for that if it was like a pure placebo, but it’s actually, that’s just an added benefit. On top of the actual scientifically validated.

Dr. John Hausman:

We actually had one of the placebo experts of the world here in our podcast, and the placebo has a huge effect on patient reported outcomes. So I’m not surprised.

And it’s funny, yesterday I was at my physical therapist getting rehabilitation of my ankle. We talked about taping, and her perception of taping is that it actually increases proprioception, just like you said, so that maybe it is the taping that you’re feeling your leg or your knee a little bit better, and in that way it can provide you with some benefit as you run or walk or do your activities.

Cheryl Crow:

Yeah, yeah, taping, kinesio tape can be good for the hands as well. And I think that giving people, I’m sorry if my brain’s going on a tangent, but something that has come up a lot with the gloves is: it becomes a physical manifestation of an invisible condition. If you don’t have deformities, your rheumatoid arthritis is largely invisible.

So that’s getting into the psychosocial patient experience of: I have this disease that is, yes, it’s quote, it’s “arthritis,” which means friends and family are like, it’s just arthritis, not a big deal. So you get that social isolation and then you get this idea that people look at you and you don’t look sick. Wearing a compression glove can be a beneficial thing to a patient because it says, I have now a physical indicator of what is going on. I have something, I have a health thing going on.

The second thing though is that it brings up for a lot of patients internalized ableism, and that’s something I’ve ended up talking about way more in the support groups I facilitate than I ever thought I would. But if you don’t know what ableism is, it’s discrimination against people with disabilities, just like racism is discrimination against people due to their racial groups.

And there’s so much, when you think about internalized ableism is: we grow up thinking that being able-bodied is the best way to be. And it gets complicated right? Because it’s like if I had a choice, of course I would choose an easier life, like a life without arthritis, a life without pain. But I don’t want to insinuate that if you have a health condition, your life is less worthy or worse than somebody without. And we actually have these kind of, just like – what’s the word for the racism, that’s like little moments of racism, like micro

Dr. John Hausman:

Microaggressions.

Cheryl Crow:

I mean, this is a fascinating kind of rabbit hole to go down at some point. But things like saying, “We want to give patients a normal life. Taking this medication will have a normal life.” I actually kind of question that assumption saying a normal life, okay, I understand it’s a shorthand. It’s like when you say, as long as it’s healthy for a baby, but you are not saying that you hate babies that aren’t healthy, you’re saying that this is something we hope for. I hope for a normal life.

But if we continue to only define a normal life or a good life as one without any disability or health conditions, we’re missing out on all the opportunities to still build a wonderful, beautiful life with pain, with a condition. And so for me, that’s something that’s long story around, that social media has introduced me to this idea of disability pride. But also I would make these videos of me wearing my gloves and doing my thing and doing my injections, and people would say, “You seem happy. Like, why aren’t you – I would be ashamed. Or they’ll say, I’d be ashamed, I’d be embarrassed. I tried wearing a compression glove and people said, what are you doing? You look stupid or you don’t look like everyone else.” I know you work with kids, it is, teenagers. That’s a whole other thing. But when you’re, because that’s hard. The pressure to conform,

Dr. John Hausman:

They want to fit in,

Cheryl Crow:

They want to fit in. But as an adult, it is SO in adult’s best interest to and teen’s best interest, but again, that’s a bigger hill to climb, it’s in your best interest to really challenge their internalized ableism and be like, I refuse to think that I’m less than because I need to wear a splint. I’m not less than, I’m still a cool person. This is me talking, this is me and Michael Jordan talking in the mirror and the SNL, “I’m good enough.”

And again, having a team of healthcare providers, whether it’s social work, physical therapy, occupational therapy, psychologists, counselors, they can help the patient navigate what it means to try to have a good quality of life with your chronic condition.

Dr. John Hausman:

I love the fact that as an occupational therapist, now that I realize what it is that you do is that you deal with more than just the pain in the hand. You deal with the whole context of who the person is, the environment that they live in, the psychosocial and mental components of pain and disability, which is really fantastic.

 And I can imagine that patients should respond really well to that very wholesome approach. So in addition to the compression glove and for all of its various benefits, how do you manage hand pain? So you mentioned that part of it is on our (rheumatologist’s) hands, right? We want to try to get the arthritis as well under control as possible. For osteoarthritis, there ain’t nothing we can do from a medical standpoint. So what other approaches do you have for patients with hand pain?

Cheryl Crow:

Yeah, because we use our hands so much in everyday life and we get into these unconscious habits. You really have to look at the quote, the ergonomics of your hand in your daily activities and educate patients in joint protection strategies and better ergonomics for their everyday activities.

It’s really visual, but things like, okay, I just did a video the other day of holding, let’s say you’re straightening your hair and you have to really grasp hard on your thumb. That can be difficult over time and add that wear and tear and that strain. So can you use a different kind of hair straightener where you can use a gross grasp rather than a fine grasp?

I mean, one of my most popular videos was holding your pen like Taylor Swift. So holding it stabilized between your pointer and your middle finger versus the typical tripod grasp. This is actually considered a functional handwriting grasp. It’s how she appears, appears, I don’t ever want to diagnose anyone. I can’t diagnose anyway because I’m an OT, but she appears on the hypermobile side of things. So she has adopted this grasp starting in her teenage years. It’s also a less painful grasp, again, it’s called the adaptive tripod or now it’s called the Taylor Swift Grasp, where you stabilize your pen between your pointer and middle finger. It takes the strain off the thumb and it actually helps, when you have ulnar drift, it prevents that pushing of the pen against the knuckle that you get the first knuckle pointer finger knuckle that you get when you’re holding the pen in the regular tripod.

So we could walk through their life and analyze how, we seem like stalkers, but we analyze, “Hey, show me how you do this. Show me how you cut things in the kitchen. Can we get a handle knife, a 90 degree angle knife?” I have one of those. I love it. And so that makes it so I’m not pronating my wrist and not having to actively grasp with my thumb.

But you also help them find a balance – because I have osteoarthritis in the base of my thumb and on top of the RA, it’s from a swing dancing injury. It’s actually nice to have a fun story, but I got my thumb caught in my partner’s hand. Anyway, I have a little osteoarthritis on my toe as well.

But with the hand, you want to figure out if there’s a way throughout your daily activities that you can reduce that added strain on your hand. There’s also one, of my favorite things to do with a patient is develop a pain toolbox, like a literal box or a basket where you put your creams, I don’t want to mention anything by name, but I have creams, I have hot packs, cold packs.

And I also put, because we know the bio-psychosocial model of pain is correct, that you also have to put mindfulness and stress management into that toolbox because when we’re in that fight or flight state, our pain is worse. So we can also work on putting those things in our toolbox and then gentle stretching to maintain that range of motion.

Dr. John Hausman:

And I just realized that I’m probably making a mistake in asking you, “Well, how do you deal with pain in somebody with hand pain?” And again, your answer was, well, we evaluate the entire patient, which I guess I get it now, right?

It’s not just about what is the one thing that you’re going to give these patients. It’s about, well, when does it hurt and what activities are being bothersome and how can we adapt the tools that you have at home or how you use these things to get the outcomes that you want. I’m beginning now to think like an occupational therapist.

I think one of the things that I struggle with is often we tell patients that, “Well, your hand hurts. You should exercise, right? You should get a stress ball or something.” And there’s sort of this balance is on the one hand, I want to reduce pain, but on the other hand, I’m asking you to exercise and sometimes exercise increases pain. So how do you sort of balance between those two things?

Cheryl Crow:

Yeah, it is really, really tricky. So I would say like “it’s complicated.” What I used to think was listen to your body, and they would say things like, even when I got trained in 2010 to 2012, “listen to your pain. Let your pain be your guide.” Well, now, 10 years later, we know that it’s not that simple.

Because whether it’s fatigue or whether it’s pain, if your body is telling you to rest, your body’s telling you to protect and brace and guard your joints. Long term, that is not going to help them because it’ll just contribute to more stiffness.

So first, again, you want to distinguish between an acute flareup and then the chronic ongoing pain. So for me, I’m Caucasian, so for me, I can actually see pretty, I’m very pale, so I can see the redness pretty noticeably. And so if I’m in a really active flare, I’m not going to be pushing my body too much.

But if I’m in that regular kind of, oh, I’m waking up feeling a little creaky joints, I have to remind myself that. Yeah, so I’m sorry I’m speaking as myself, but I can also speak for other or say what we say to patients is that: you can get into a gentle stretching and strengthening routine that you over time will learn – and again, it’s messy – and even just setting the expectation, this is not simple. It’s not easy. It’s going to be messy. We’re going to try, we’re going to try, let’s say give an example of a cardiovascular routine. We’ll try – “where are you at now?” It all starts with what’s your tolerance right now? What’s your activity level now? And what are your hands able to do now? How are they feeling now?

Okay, then if we’re trying to increase your, let’s say, activity tolerance fora cardiovascular stance, okay, if you can easily walk one mile, can we get it to either walking a mile faster? Can we get it walking a mile or walking longer than a mile? Can we get you, you know what I’m saying?

And see each time we iterate a little bit, take one baby, step forward and then reevaluate.Wwhere’s my pain, where’s my fatigue? And then we may have to scale back as needed.

And I like to divide exercise into the three to me core pillars, although I should say four, they’re: cardiovascular stretching, strengthening, and balance. Balance becomes much older as we age with the risk of fall. So I mostly work with adults, young adults with arthritis, so I don’t work on balance as much as I should, but.

So we start with, where’s your strength at now? Where’s your flexibility at? Now with flexibility is not one that we want to increase too much like we do with cardio. So each one has its own set of parameters. But strengthening, we usually want to improve strengthening because the patients are usually a little bit deconditioned because again, they’ve been listening to their body and the body says, no. There’s a book called “When the Body Says No,” the Body is usually saying “no.”

And from personal experience this year, after reading the A CR integrative guidelines over and over and over again, teaching patients in my support and education self-management groups, I finally started strength training. So I’ve had RA for 20 years.

And you know what? So that’s first of all a point being it’s not enough to tell people what to do. Behavior change is a whole other psychological beast. My honest answer, I don’t even know. I can’t tell you one factor that made me finally do it. It was a combination of things, and it’s privileged too. My husband works at this tech company in Seattle that has a spouse benefit of, they have a private gym at their office, and the spouse benefit is, I know it’s amazing, but their employees are all the typical sedentary tech people that need some exercise, but they give it to the spouses too, which is absolutely wonderful.

And so I get two free hour long personal training sessions a week, and I was like, I’m going to do this. I finally started it and I am, so I told them, I know how to do cardio on my own. I know how to do stretching on my own. The thing I’m struggling with is strengthening. I’m 42 now. I can feel myself getting weaker.

And it’s also from not challenging my body on a daily basis beyond, I have a little exercise bike and I had a little routine exercise bike, but that’s really one direction. So you’re going one direction, just lower body and cardio. So I have been only two days a week since September, I have been shocked at the positive benefit (of strength training). I was hoping it would help me with my daily activities, like feeling less strain on my joints when I’m lifting, like groceries, cooking, little things like that.

But the positive impact on my brain fog, cognitive dysfunction and fatigue has been completely, it’s been unexpected because I always thought those, I knew that exercise helps brain fog and fatigue, but I always assumed it was cardio. Because I was thinking it’s increasing the blood flow to your brain. But the strength training, it’s noticeable.

Side note, I think I might have ADHD, which I’ve heard exercise helps with that brain fog. So I’m like, maybe what I thought was brain fog is, I don’t know. But long story short, it has been whether or not you have ADHD, a lot of people with rheumatoid arthritis and these conditions do struggle with executive functioning, with just all the tasks required to just manage their health.

And so the benefits for exercise have been – specifically strength training – have been really wonderful for me.

So I’ll also say one of the things that some of the physical therapists, I talk to an occupational therapist at the conference in 2023, ACR conference reminded me, I don’t work in a traditional clinic setting. They said that what they often tell their patients is, give it two weeks. You might feel worse for about two weeks, but if you keep sticking with it, you’ll probably feel better.

I think the fatigue sometimes gets a little worse. If I push it, it gets a little worse, but so again, symptom tracking, we can help them keep track of the symptoms, what happened when they pushed it this far? Okay, if that made it worse, let’s scale back a little bit and helping them navigate that messy process.

Dr. John Hausman:

That’s great advice. So it sounds like that idea of no pain, no gain, there may be some truth to that, right? You have to push yourself a little bit outside of your boundaries and like you said, give it two weeks and then see if you could push the needle a little bit further. I think that that’s great advice for everybody out there.

Tell me a little bit about children and parents who have kids with juvenile arthritis and how you view occupational therapy for a child and how that may be different and what things you may recommend.

Cheryl Crow:

Yeah, I actually think it’s pretty similar in terms of figuring out what is required of them to function on a day-to-day basis. It differs when you get to the little little kids because they’re not doing their own self-care independently. So we would have to do some education, and when it comes to joint protection stuff, partnering with the family, talking to the parents, (saying) “Hey,” I do think there’s a tendency in the parent population to help too much. They just want to help their child, but if you don’t allow your child the opportunity to navigate and overcome things on their own, then the child doesn’t, becomes a learned helplessness situation.

So I think the biggest thing I’ve noticed, I volunteer at the local in Seattle Arthritis Foundation, juvenile arthritis camps. And the biggest thing is helping the people in the child’s world understand, and the child themself understand, the fluctuations, that it’s not their fault if some days are harder than others, that it’s just the nature of the beast and helping their parents and teachers understand that too.

I literally will go on the longest anger tirade every time I hear someone says, “The PE teacher yelled at my child, they said that my child, they were able to walk around the track yesterday, so they should be able to today.” It’s so, it’s frustrating, but I understand if no one’s taught you that – the child looks the same, they look the same every day. And so you’re like, well, are they just playing me or whatever?

And I’m like, if a child is going to be manipulative and play you, they’re going to do it in a lot more fun way than pretending to have arthritis, honestly, I make it a rule for myself, for my own child, and for everyone I’ve worked with is I believe them. I’d rather die knowing that I believed too many children who said they were in pain than that, I was like, Ooh, they’re just trying to milk the system. I’m going to be harsh on them, that’s just, I’m not about that.

So again, it’s about identifying what are the external barriers to their performance? Is it lack of support from their team, the team surrounding them in their school environment and such? Or is it the parent education and is it the child’s lack of, maybe they know the tools in their coping toolbox or they’re paying toolbox, but they are afraid to use them or they don’t want to look different, and that’s just hard navigating through the messy hard stuff.

Dr. John Hausman:

Great. Another question that I often have is about bracing. So on the one I think, well, of course you protect your joints, bracing is good. On the other hand, well then you’re not using your joints, they get weaker. So how do you balance that also with patients, and when should bracing be used and not?

Cheryl Crow:

Yeah, honestly, I’m just going to be completely transparent and just say, I would refer to somebody who does that more often than I do currently. So refer to your in-house certified hand therapist, because I think it is a different answer for everyone, but it’s not something where I am particularly skilled at the moment.

Dr. John Hausman:

Fair enough. But I have to say, you’re definitely skilled at a lot of things. I was so impressed. You have this website called Arthritis Life. You have this podcast called the Arthritis Live Podcast. You have a self-management course called Rheum to Thrive. And for people out there, we’re going to have links on our show notes to these things. Sounds like you’re spending a lot of time there.

And my question is, what is the need that all of these projects are trying to fill? What are some of those unmet needs that you encounter that you’re trying to fill with these services?

Cheryl Crow:

Yeah, thank you. I really love how you posed that question. To be honest, that is exactly – what motivated me to create the programs was observing this unmet need. And it started actually in person when I presented at that juvenile arthritis camp, they asked me to come speak about some basic occupational therapy tips and tricks and hacks, and just answer the parent questions as well.

And I noticed that people just felt in the dark about how to navigate the day-to-day of their condition. They felt confused and overwhelmed, like “Wait, what am I supposed to do now?” And so I feel like I often say that having a chronic condition, whether it’s lupus or rheumatoid arthritis, it’s like a job. What patients need or what anyone needs when they start a job is like an orientation manual. You need someone and maybe a guide. There are some people –

Dr. John Hausman:

A Life Coach.

Cheryl Crow:

A life coach. Yeah, I know, but it’s so, yeah, that’s a whole can of worms, yeah. You need a skilled Master’s level Occupational Therapist! And I think the analogy would be traveling. Some people, if you’re going to go to a new country, a new city, some people just want to read all the stuff and figure it out on their own, and those patients are always going to figure it out.

And other people are like, “I want a tour guide. I want someone to help me navigate through this!” And so for me, I looked into what is the research saying? And in 2015, the EULAR recommendations of patient education for people with inflammatory arthritis really validated what I had seen in the online and in-person patient communities, which is: “Patients with inflammatory arthritis wanted to be recognized as more than their disease to reengage in previously abandoned activities.

They felt their level of knowledge about the disease was low to moderate, and they expressed that they had received insufficient information.”

And I know it’s a self-selected population in social media. It’s not a representative sample. I know that the people that I’m interacting with on social media likely represent people that are more severely impacted by their disease, maybe not doing as well. I remind patients of that all the time. I’ll say the people like me in that first six years of remission are frolicking in the field, just like the pharma commercials that we like to make fun of. But no, they really are though. So there’s this silent majority of people that are doing well.

So what I ended up doing is, okay, I said, “Someone needs to do something about this. Someone needs to figure this out. Why isn’t someone doing this?” At the time, I had made this conscious choice to separate my arthritis, I said, arthritis stuff will be my volunteer work, and my OT world is going to be in schools, in pediatric clinics helping kids with developmental disabilities. That’s why I did this (got my OT degree), I had my blinders on. This is the plan. I had my own child. I had a huge flare up postpartum. I was like, I can’t do anything more.

And then the pandemic hit, and I started Arthritis Life in 2019 as a talk show and a social media thing. But long story short, when the pandemic hit, I was like, okay, now I have the time. Because my child was five or six at the time, he was able to kind of be a little bit more independent. I was helping him through school, and I was like, I should finally put together this self-management program that I know is so needed. So long story short, again, self-management is recommended by every entity regarding rheumatology –

Dr. John Hausman:

Regarding any disease, actually.

Cheryl Crow:

Yeah. But it’s really sad that it’s just this afterthought or the thought that, oh, well, patient nonprofits are going to pick up the slack. I’m sorry, they’re not. They’re not doing it, no one’s doing it, ,aybe it’s expensive or it takes time.

And I actually thought really hard about structuring arthritis life as a nonprofit or for-profit. I ended up going for, for-profit only because I really wanted creative control. I had worked with a lot of grassroots small nonprofits, and I saw that hmmm, you don’t really, if you’re the founder, you don’t actually – the board of directors kind of controls things. So I wanted to be able to have my vision do it how I want to, I’m a dictator! No, just kidding.

So I created, based on the available evidence for rheumatoid arthritis and inflammatory arthritis, I created the Rheum to Thrive comprehensive self-management program. And it has, it’s a self-paced course and also has a support group, optional element, which has been just absolutely wonderful.

Dr. John Hausman:

I think in looking at some of the stuff that you’ve produced, it’s so interesting. You have, I think it was a podcast and video about what it’s like to be on methotrexate. And wow, I can’t tell patients what it feels like to be on methotrexate! And having that option out there, because for a lot of patients it’s very scary. So what does it feel like to be on methotrexate?

Also, the other one, how you give yourself methotrexate injections. What a fantastic opportunity to teach others about where do you give it, how it hurts less, how to manage with the pen or with the syringe. I think these are all things that are so important to a patient’s life that us as rheumatologists in our clinic rooms, we never even think about.

Cheryl Crow:

Yeah, and I mean, you have a really important job that is very complex, which is dealing with all the medications, and no one else is able to do that. So yeah, it’s like, just don’t forget to refer out to us who can help with the other things that are really important.

They say, there’s this little saying from our American OT Association: “occupational therapists don’t ask, what’s the matter with you? We ask what matters to you?” It sounds kind of corny, but it’s true. It’s the most fulfilling field.

I got the impression from the 2023 it, this kind of epiphany hit me at the ACR 2023 (conference) that it’s in rheumatology, your role as a doctor primarily is really the remediation side of things, so what we call – remediation, right? Fixing the underlying problem, which is so necessary.

But the patients are often left with some problems that are not fixed. So what do we do then? It’s like with a spinal cord injury, you don’t just say, well, you can’t walk, so whatever. Bye. No, you say, “Let’s go to occupational therapy, physical therapy, but let’s learn creative workarounds. Let’s adapt your home. In that same way. If your patient’s not adequately controlled, even if they, they’re partial remission or partial well controlled disease, they may still be floundering in everyday life. So we can help them.

Dr. John Hausman:

Cheryl, these 40 minutes that we just spent together has been really eyeopening for me. I mean, to understand what it is that you, to get a hint as an understanding of what you guys do when you start seeing patients.

And to realize that it’s more than just about the bracing or the hand exercises that you guys actually look at the whole patient and how the patient fits in their environment, and whether you need to change the patient or the environment or both? And how their mental health affects their physical health. I think it’s so wonderful that you have the time and dedication to do that for our patients.

And I will start writing those – Oh, one more thing. What should I write on those occupational therapy scripts? So I have the patient, they have some limitations. Should it just be, evaluate and treat patient with ra, evaluate and treat, or do you have specific suggestions about what to write on that script?

Cheryl Crow:

I mean, what is really helpful is if you’ve got a hint from the patient in your session with them, what are they struggling with? Or you could just say, help with activities of daily living or joint production strategies or tools to decrease pain. That’s always super helpful to have a hint ahead of time. But what we’ll always do is what we call a detailed occupational profile, and it’s just that detailed interview and find out what they’re struggling with.

Dr. John Hausman:

Fantastic. So for listeners out there, either providers that want to learn more about the stuff that you do, and for patients out there that want to find out about your programs and your podcast, where can people go?

Cheryl Crow:

Yeah, so my website is arthritis dot the enthusiastic life.com. So that’s the URLI got a long time ago is the enthusiastic life.com. So arthritis dot the enthusiastic life.com. You have links to all the programs – I am doing in February, a free, I do lots of free webinars and educational events, and that one’s called the Arthritis Life Hack Extravaganza, which is really fun. So yeah,

Dr. John Hausman:

Fantastic. And we’ll put links to that on our show notes. Cheryl, thank you so much for your time. It’s been really fun, and you’re a fantastic speaker, and I look forward to hearing more about your podcasts and all this stuff that you do out there.

Cheryl Crow:

Thank you so much for being open to learning more about occupational therapy. It makes me really happy, and I know your future patients will. Thank you too. So thanks.

Dr. John Hausman:

Well, there you have it. Everything you ever wanted to know about occupational therapy, but were afraid to ask.

Cheryl’s experiences and perspectives truly showed me how OT isn’t just about rehabilitation, but about empowering individuals to live their lives to the fullest.

Thank you all for listening, downloading, subscribing to our show, and for rating us with five stars or however many stars you think we deserve. You can define our show notes for this episode@acronair.org, on Apple Podcast, Spotify, and your favorite podcast app. Until next time, let’s make use of our awesome occupational therapists and of course, stay healthy.