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General Education, Patient Stories, Podcast

Hypermobility, Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome 101, With OT Emily Rich

May 30, 2022
61 min read
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Summary:

In Episode 71 of the Arthritis Life Podcast, Occupational Therapist Emily Rich shares her experience living with both EDS-Hypermobility Type and POTS. Emily & Cheryl explore what people living with autoimmune forms of arthritis need to know about these conditions.

People living with rheumatoid arthritis (RA)  and related autoimmune forms of arthritis (such as psoriatic arthritis and ankylosing spondylitis) are at greater risk of developing hypermobility, Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). 

Emily and Cheryl discuss ways for people living with arthritis and EDS or POTS to manage the day to day of their conditions and cope with the ups and downs and uncertainties that come with fluctuating chronic illnesses. They also discuss the role of occupational therapists in helping people with these conditions improve their self-management abilities and confidence in building a meaningful life despite health challenges. 

Video of Our Discussion

Episode at a glance:

  • Emily’s diagnosis story for EDS and POTS at age 14: joint pain, feeling like passing out, digestive symptoms and more
  • What is POTS? 
  • Autoimmune conditions, Covid-19 and POTS: Emily and Cheryl discuss the connections between these conditions
  • EDS and Hypermobility Spectrum Disorder and General hypermobility: Emily explains the difference between hypermobility and EDS (which includes one of 13 subtypes being hypermobile type)
  • Who diagnoses EDS and POTS?
  • Connection to arthritis: Emily and Cheryl review the data about the incidence of POTS and EDS amongst people with rheumatoid arthritis and other related conditions
  • Tips for coping when you have both arthritis and EDS: the fluctuation and the uncertainty;  whack a mole – live in the moment, acceptance
  • What’s in Emily’s toolbox for coping with POTS and EDS: sleep routines, hand splints, planning ahead, energy conservation and more 
  • What is the occupational therapist’s role in helping people manage dysautonomia and EDS? Sleep hygiene, energy conservation, fatigue management, pain tools, teaching strategies and more
  • Self-Management for Chronic Conditions: Emily and Cheryl share insights into this often overlooked area of need for many patients. 
  • Emily’s best advice for people newly diagnosed with EDS and/or POTS 

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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Emily Rich: Emily Rich, MOT, OTR/L is a clinical occupational therapist at Tucson Medical Center in Arizona and a PhD student at Texas Woman’s University. She works primarily with individuals with ehlers-danlos or joint hypermobility and postural orthostatic tachycardia syndrome (POTS) and other forms of autonomic dysfunction including Covid-19 long-haulers. Emily is passionate about empowering people with chronic conditions to feel in control of their health care decisions and have options for self-management. She conducts research specific to POTS in rehabilitation. 

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:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Emily)

Cheryl:  

Ho, I’m so excited. I was like, say hi! And I just said ho. Oh, hi. Hi, Ho, Emily. I’m so excited to have you here on The Arthritis Life Podcast!

Emily: 

Thank you. I’m so excited to be here.

Cheryl:  

Yeah. As we get started, can you just let the audience know a little bit about you, like where do you live and what is your relationship to chronic illness?

Emily: 

Absolutely. So, I live in Tucson, Arizona, and I have several chronic illnesses, including the ones that we’re going to be talking about today. And I also am an occupational therapist and my practice is primarily with working with people who also have chronic illnesses, whether it’s POTS or Ehlers Danlos — which I’ll talk about today — or Parkinson’s disease, or multiple sclerosis, arthritis, those kinds of things.

Cheryl:  

Yeah, that’s so, it’s so wonderful when you can blend your professional lens with your personal patient lens. That’s what I do too. So, I’m biased towards that. Yeah. 


Emily:
Awesome. 

Cheryl:

Yeah. Can you let the audience know a little bit about your personal, like what your personal diagnosis story/saga for POTS and EDS is, and we’re gonna define what those acronyms mean, so that everyone knows what they stand for.

Emily: 

Yeah, absolutely. Yeah. So, I’ll try and keep it more of a story and less of a saga. But I started having symptoms when I was pretty young. And those started to get worse when I was an adolescent, which is really common with the diagnoses that I have. Around 14 is when mine started to get a lot worse. And it —

Cheryl:

What were the symptoms, if you don’t mind me asking?

Emily:

Yeah, yeah. So, lots of joint pain and leg pain, which is really common in kids with Ehlers Danlos or EDS. Ehlers Danlos Syndrome is EDS, and POTS is Postural Orthostatic Tachycardia Syndrome. And so, my POTS symptoms really started to get worse when I was 14. And those look like feeling like you’re going to pass out. So, not necessarily passing out, so it’s a lot of times dismissed. But it’s this, you know, kind of your vision going black, feeling nauseous, getting really dizzy, lightheaded, tachycardia, heart racing, and basically needing to get yourself to the ground in order for those symptoms to resolve. And then, also things like digestive symptoms were really my biggest symptoms that eventually led me to a provider and started to get more answers. 

The other things were kind of dismissed, although the digestive symptoms were dismissed for a lot — like, a lot of people are diagnosed as IBS for years and years. So, it was six years before I had a diagnosis with after that onset at 14. And then after that, it was sort of like one diagnosis after the other because a lot of people experience that with Ehlers Danlos. It’s sort of this umbrella. And once you have that figured out, the other things start to make sense and other diagnoses a lot of times follow. Because you’re in a category versus being out on an island and having no idea what’s going on at all.

Cheryl:  

Yeah, yeah. And I often say that, you know, the hardest part for me was being undiagnosed, because you don’t even know where to start, right? I mean, it’s such a scary — and especially during puberty when so much is changing, too. So, it’s like, “Oh, it’s growing pains,” or, “Oh, you know, it’s the hormones,” right.

Emily: 

Exactly, absolutely. Yeah.

Cheryl:  

Yeah, yeah. So, let’s go into what these conditions entail. Because like, for example, I have a diagnosis of generalized anxiety disorder. And if you look at the anxiety symptoms, they can even say, you know, when you have, are starting to have an anxiety attack or panic attack, you start feeling dizzy, lightheaded. So, sometimes I’ve wondered, gosh, I wonder if I have POTS on top of that, because I know I have anxiety, but I do sometimes feel like even if I’m not anxious at all, I’ll stand up and suddenly feel like, wow, I’m gonna pass out, you know. Anyway, so, can you tell, you know, what — let’s start with POTS actually, just because I think that’s more straightforward. And then, let’s talk about what EDS is. And then what is hypermobility in general because you can have hypermobility without Ehlers Danlos.

Emily: 

Absolutely, yes. Yeah. So, okay, so, POTS is Postural Orthostatic Tachycardia Syndrome. It’s a form of dysfunction of the autonomic nervous system, which is called dysautonomia. And so, your autonomic nervous system controls your heart rate, your blood pressure, your temperature regulation, your digestion in part, and, you know, breathing, all of these sorts of really automatic things, like feeling the urge to go to the bathroom, thirst. A lot of these things are controlled by your autonomic nervous system. And so, if there’s a dysfunction there, then a lot of that just kind of goes awry. 

And so, people have a lot of those feelings like I just described. Often, they are when standing up, you know, moving from laying down to standing up, or when you stand, standing for a long period of time. A lot of times the gravity just kind of takes the blood into your lower body when you stand up. And so, for a lot of folks, for the typical person, your blood pressure sort of recalibrates and it adjusts, and so it helps the blood to be able to pump it and redistribute it, circulate it appropriately. But when you have POTS, a lot of times the case is that the blood just sort of stays in your lower body, or the signal is just sort of off in terms of, you know, feeling this like adrenaline rush, and it produces maybe too much of that kind of stress hormone. 

And so, the heart works really hard to pump more blood back up. And so, it presents a lot like anxiety. And I would argue the majority of people with POTS have been told that’s probably anxiety, you know, before they’re diagnosed number of times or for how long, you know, that is arguable, but yeah, so, that’s sort of what that looks like. And that sense of getting up too fast is kind of a pretty cardinal — that’s the, you know, the symptom for most people, is feeling like I got up too fast, you know? But, yeah, that’s sort of what POTS looks like. And then for — yeah.

Cheryl:  

You know what, actually, sorry, I sent you this nice overview or this list of questions, I’m already going to go a little out of order, because that’s just how I am. But yeah, for the people, a lot of the people listening have an autoimmune diagnosis, you know, and/or like an autoimmune form of arthritis diagnosis. And so, it’s something that I found when researching to talk to you, because I’m really fascinated by this personally, and also, because of the people I’ve worked with, and if people who have autoimmune issues, there is a connection between autoimmunity and the development of POTS. But it’s not clear whether it’s like just condition specific, like maybe people with rheumatoid arthritis more than a different form of like psoriatic arthritis. But there’s an interesting — I’m gonna link in the comments or in the show notes, to an article from The Rheumatology which is the official publication of the American College of Rheumatology and Association of Rheumatology Professionals. This is like a journal for rheumatologists and professionals but it says — this is from March 2021 — experts discuss three frequently overlooked syndromes and POTS is one of them. 

And they even said on anxious women — the case study that they do, and this is an anxious woman with a chronic headache, and chronic, constant myofascial pain, and having gastrointestinal syndrome, fatigue, normal lab results, blah, blah, blah. And they’re like, instead of just dismissing this person as, “Oh, it’s all just anxiety,” actually, it was POTS. So, this is a great overview in The Rheumatology journal, but just so you know, people listening, you know, this is something that you might be more likely to have if you have an autoimmune arthritis diagnosis. And the other thing that I know is a very hot topic right now is the association between things like POTS and dysautonomia in general, and long COVID. So, what have you been learning about that recently? Or what are your thoughts on like, are people who’ve had, or people who are starting to develop long COVID symptoms, kind of potentially more prone to developing POTS?

Emily: 

Yeah, absolutely. Unfortunately, that is definitely the case. I’m so glad you brought that connection up with autoimmunity because I think POTS is often missed in people with autoimmune conditions because you have a name for your condition, you know, or vice versa. People are diagnosed with POTS and they’re not diagnosed with the underlying autoimmune condition. So, it’s really important that we don’t just say, you know, “Oh, this is — there’s a name for what you have. It’s, you know, there’s not really a lot we can do about it. So, who really cares if you get this diagnosis or not,” you know, it does matter if you get this diagnosis so that you have an understanding of what’s happening. And it’s not unlikely that there’s an autoimmune association. 

So, with long COVID, the other really common cause for POTS is a viral illness. So, in the past, you know, we would think of the flu or Epstein-Barr syndrome or mono, and there’s a lot of different kinds of things that have caused POTS in the past. Now we have long COVID and it’s affecting so many, so many people. There’s, you know, huge ranges between 10% to 30% of people who develop — who acquire COVID and end up developing long COVID. And often, these are people who had very, you know, relatively simple cases, right. Didn’t, weren’t hospitalized, may have even been asymptomatic, but really mild courses of long — of COVID that are now developing long COVID. 

And so, a percentage of those folks have POTS, or have a different form of autonomic dysfunction, or of dysautonomia. And so, definitely, we’re seeing it. And even if they don’t meet the criteria for POTS, which would be 30, an increase of 30 beats per minute of heart rate by standing up, they do what’s called a tilt table test, they strap you to a table and you go from laying down to sort of an almost upright position, and they monitor your blood pressure and your heart rate. And if that heart rate increases 30 beats, then basically you qualify for POTS, you know, with a few other things that they have to take into account. So, even if it’s not going up that high in a lot of folks it’s going up to some percentage, you know, to some degree, and they’re experiencing the fatigue, the brain fog for sure. And just this overall feeling of unwell, of not be able to return to those daily activities that they could do before.

Cheryl:  

Yeah. And we’re going to later on address like how occupational therapists can help people, you know, with POTS and dysautonomias in general. But I also want to cover EDS and hypermobility, because there’s a lot of confusion about, you know, is everyone with EDS — does everyone with Ehlers Danlos Syndrome have hypermobility? Or, you know, there’s all these different types. So, yeah, what are what are some of the hallmarks or what are the, what’s the disease overview for, I will say, Ehlers Danlos. Is that right?

Emily: 

Yeah, maybe I’m just lazy, but I say Ehlers Danlos. People say Ehlers Danlos, which I think is probably the more official, but I never say that because I don’t, I don’t know. It’s European or something. So, I’m not sure how to actually pronounce it specifically, but Ehlers Danlos Syndrome is a group of connective tissue disorders. And generally speaking, most of them are characterized by joint hypermobility, kind of stretchy skin, or skin that can be stretched further than what would be considered normal, and then also, fragile tissues. And so, there’s 13 different subtypes as of now, at least. This is regularly changing. We don’t have a good understanding of Ehlers Danlos still at this time. But the idea that, you know, it’s inherited, we have the gene identified for 12 out of the 13 subtypes. The one that we don’t have a gene for is the most common form, which is the hypermobile form of Ehlers Danlos Syndrome. 

And so, the difference between Ehlers Danlos and hypermobility spectrum disorder, and just some hypermobility in the general population, I kind of put those into three different buckets. Ehlers Danlos has very specific criteria. Like I mentioned, there’s genetic tests for most of the types with the exception of the hypermobile type. And so, there’s this combination of major and minor criteria that you have to meet. There’s certain — you have to have these certain types of things happening. And then there are a collection of other things that you could have and you have to have a certain number of those. 

And then for joint hypermobility syndrome, which is what we used to call it, or hypermobility spectrum disorder, it’s a spectrum of how hypermobile you are, how stretchy your joints are. Hypermobility just means movement beyond what would be typical in a typical person. So, for example, when you straighten your elbows out, is there a straight line? Or is there kind of a bend backwards? So, a lot of times we’ll see this when people are really excited and they take a picture and they, you know, put their arms up and they stretch to the fold then it’s that’s kind of like this revealing of, oh, you have some hypermobility, you know, in your elbows.

Cheryl:  

Yeah, like when you put your arms straight up, like next to your elbows, next to your ears, it would be like, instead of there being a straight line between your shoulder, elbow and wrist, it’d be like — I don’t know what actually to call it — I’m trying to say this in words, but it’s hard to say. Like, there would be, your hands would be like making a V when your elbows are still next to your kind of ears but then there’s like your hands are going out to the side away from your head. And that’s, yeah, I want to go back for one second, just again trying to think of a beginner’s mind. So, when we say, in general, EDS is a group of connective tissue disorders, let’s define what is connective tissue? Is that the joint? Is that in the joint, or where is it?

Emily: 

Where isn’t it is the supposed question, right, because it’s everywhere. And it’s one of the reasons why people with hypermobility often have gastrointestinal issues and also joint pain, muscle pain. Basically, your connective tissue lines everything in your body. It’s fascia — the word fascia is kind of trendy right now — but fascia is connective tissue. And so, it’s just, it’s basically everywhere. And so, the reason why it’s a connective tissue disorder is that there’s collagen, which is a protein that makes up, it makes our tissue either, you know, it makes it strong, and it also, makes it elastic. 

And so, with people with Ehlers Danlos Syndrome, there’s a difference in their collagen and the way their body produces that protein. So, therefore, it affects joints, it affects their ligaments, it affects muscles, and all kinds of body parts like I mentioned, even the digestive tract and also your blood vessels. And so, even your blood vessels have connective tissue, So, your veins might be stretchier. And so, that’s a lot of times why POTS and EDS go together, it’s if these veins are more stretchy, then when you stand up and gravity takes your blood down, your veins basically just stretch instead of what they should do, which is to contract or to tighten to help push the blood back up. So, yeah. That’s what connective tissue is. It’s everywhere and collagen is the reason why there’s that difference for people with Ehlers Danlos.

Cheryl:  

That’s super helpful. And I’m just gonna read, just for the record, the definition in Encyclopaedia Britannica. For connective tissue, it says ‘A group of tissues in the body that maintains the form of the body and its organs and provides cohesion and internal support. It includes several types of fibrous tissues that vary only in their density and cellularity, as well as the more specialized and recognizable variants, bone, ligaments, tendons, cartilage and adipose fat tissue.’ So, what is important to know about this is that it’s kind of like — I’m making a weird analogy in my head — but it’s like when people hear rheumatoid arthritis, and they think, “Oh, it just means your joints hurt.” Actually, no, it’s a big like, it’s a systemic disease that affects a lot of different body tissues and some systems, right; heart, lungs, eyes. 

In the same way, when people hear EDS and they think, “Oh, that’s just some random hypermobility. That just means they can like do all these party tricks and like, you know, put their thumb down to their elbow or whatever.” And it’s actually, it affects all the tissues in your body. And so, it’s really important to get that diagnosis to know do you have, maybe there’s people who have hypermobility, like somebody who does like yoga a lot. And they’re just like, “Oh, like, my hips are kind of hyper mobile,” or like, when I was a swing dancer, I was like, some people have more mobility than others in their joints, right? And that’s, but there’s no such thing systemic going on. It’s just kind of, you know, so, who diagnoses this? ls it a rheumatologists, or —?

Emily: 

[Sighs] Theoretically, it could/should be. It’s very frustrating for a patient, the patient community, and also, for health care providers who are seeing these patients, because it’s really hard to find people that are willing to diagnose it. I think there’s because it affects so many body parts, people often see a lot of specialists, and there’s not a lot of people — [throat clears] excuse me — who are willing to be that, you know, person to diagnose this big picture thing. So, theoretically, either a geneticist or a rheumatologist. Those are the two people who should technically diagnose it. But in a lot of the literature I’ve been reading lately, people, especially like over in Europe, really recommend like, this should be your family doctor, that they should be able to diagnosis. And in United States, that would be our primary care physicians. But I read another article that says, you know, the family doctor will probably only see one of these cases in their entire career. And I don’t actually know. I don’t know how accurate that is. 

I think, you know, we call these conditions rare. I really don’t think they’re rare. I think in 10 years, maybe, you know, definitely within 20 years, we’ll be saying we had this way wrong, like this was a lot more common than we thought. But that being said, what you just said about the difference between maybe a dancer who is more hypermobile and someone who actually has a hypermobility spectrum disorder or Ehlers Danlos Syndrome, it’s really based on whether or not it’s systemic or if it’s localized, like you just said, Cheryl. And so, if you have really stretchy wrists like, okay, that might not mean anything right. You know, people lost and start to do this criteria that we have, which is bringing your thumb to your wrist and whether your thumb can touch your wrist, and pulling your pinky back, and straightening your elbows, and straightening your knees to see if they, they hyperextend or they go backwards, and then putting your hands flat on the floor. And just because you can do those things, it doesn’t mean that you have one of these conditions and doesn’t necessarily mean you’re going to have any issues. If you have pain, now that’s where the conversation really changes and that’s where it’s really helpful to get into someone who knows something about this.

Cheryl:  

That’s super, super helpful and I’m sure it’s frustrating to hear that there’s not like ‘the EDS specialist’, you know, doctor but and I totally agree with you, I think it’s under diagnosed for sure. And I wanted to make the connection to arthritis. For those listening, I actually have, in the support group I’m facilitating right now, way more than usual people who have doctor diagnosed EDS which is what sparked me to learn more about it in general. And also, being friends with you as social media friends and now real-life friends. But I was reading that in general, people with more severe or progressive rheumatoid arthritis are more likely to have hypermobility in general, regardless of whether it’s actually EDS. Because pro-inflammatory interleukins in the synovial fluid in rheumatoid arthritis is associated with joint hypermobility, which is interesting because more progressed and severe rheumatoid arthritis is associated with deformities, that are more like fixed deformities that you actually can’t, you become less mobile in your fingers. So, it just, it’s very complex, but that was just one piece of research I found. And then in general, one in 50 people with rheumatoid arthritis will have a diagnosis of EDS which actually seems pretty high to me. I don’t know that that many, but I think that’s good that that’s being identified. And then one in five people with lupus will have Ehlers Danlos Syndrome, which I hadn’t, I had never heard that before either. This is just from ARC Canada’s newsletter. And also, in the article, an article in Nature magazine, so Ehlers Danlos Syndrome, hypermobility type, is associated with rheumatic diseases in general. So, there is some connection. 

But I think it’s — I think one of the things that whenever you have comorbidities, you get into this chicken or egg thing. If I’m experiencing X, I’m experiencing joint pain, just a simple syndrome, very simple phenomenon. Not simple, but you know, a classic symptom of rheumatoid arthritis. But I also have an EDS diagnosis. I think a lot of times, patients, we get kind of caught in the cycle of like, is it this? Is it that is it? Is it my EDS? Or is it RA? Interestingly, I encountered one person who said what was it for them, they had EDS and rheumatoid arthritis. And when they got their rheumatoid arthritis under control, their EDS started bothering them more. And that was because the rheumatoid arthritis flaring up decreased their mobility in their joints. And so, when they had, their inflammation was gone from the rheumatoid arthritis, they were able to accidentally like, you know, hyperextend their joints and stuff. But anyway, do you have any advice for people who have both conditions? And it’s okay if you don’t, because it’s very specific to the individual, you know, but for coping with that kind of uncertainty. Like I’ve said many times on the podcast, uncertainty is my biggest trigger for anxiety, I’ve discovered. Just not knowing is it this, is that, you know, if I have a flare, if I’m having hand pain, is it my EDS flaring up? Is it my arthritis flaring up? How do you approach those kind of situations? That’s like, 16 questions in one. Sorry.

Emily: 

Yeah, absolutely. That number is higher than the general population for sure, in terms of the incidence of it. And so, I haven’t actually worked with many people — I had a couple — but who have, you know, some form of arthritis as well as EDS. Except osteoarthritis, I’ve had several patients who’ve had OA in their thumb which is most common commonplace for it with hypermobility, but that idea of uncertainty is, I think, pretty universally, one of the most challenging parts of I think any chronic illness, you know. In the research that I’ve done in my own survey studies and research and things, that’s the biggest thing that comes up consistently, is the fluctuation of symptoms, and that things kind of pop up. We talked about with Ehlers Danlos, it’s like Whack-A-Mole, right. And I think they talk about that with other conditions too. 

Cheryl:

Yes, I do. It’s like rheumatoid.

Emily:

Yeah, exactly what you just described, right, with RA. Like, okay, I’ve got this better, you know, I’ve whacked that mol. Like, I do this and my inflammation is better and whatever. Now, suddenly, EDS is popping up. And, you know, and it’s the same kind of thing, whether it’s different kinds of symptoms. And so, that’s really hard, you know, psychologically, and like you mentioned with the anxiety, because it’s like that game of ‘What if’. What if I get worse? What if I have flare again? So, I think the biggest thing you can do is try and live in the moment. And that’s just definitely not very easy and not honestly helpful for a lot of times people will have anxiety, you know, but.

Cheryl:  

It’s harder if you have anxiety, but it’s more important. It’s kind of like that — there’s an old saying that someone asked this monk, like, “How often should you meditate?” And it’s like, yeah, I’m gonna butcher this, but you’ll get the concept, which is like, “Okay, 10 minutes every morning and evening. But if you’re really busy, 30 minutes, three times a day,” it’s like, you know what I mean? If you’re really busy, you actually have to do it more, you know. So, if you’re anxious, you actually have to try harder to live in the moment because it’s, you have this barrier, this desire to control. You want to control the future, because you feel like — maybe this is just me — but you feel like if you can control everything, then you won’t be as anxious. But the problem is, it’s it’s an illusion, ultimately, so.

Emily: 

Yeah, and so, finding that acceptance of like, I can’t control it, but like you and I both feel strongly is I think having that toolbox of like, what can I control. It’s not possible for me to know what mole is going to pop up next, but I can do my best to keep my body as, you know, quote-unquote ‘healthy’ as I can, and my mind as healthy as I can, you know, with whether it’s like keeping a routine, getting exposure to like sunlight every day, maintaining your hydration, drinking water, like having social connections. Some of those very basic things that that all of us need to stay healthy, mind and body, help you to be more resilient, right. And so, if you have this underlying, like, I have these things in place, I have my contacts, I have my team, you know, maybe I don’t have to go see this therapist right now. But I know who I have. And I know I can go to them if I need them. Whether that’s a physical therapist, an occupational therapist, or a psychotherapist, you know, counsellor, to be able to say like, “All right, I’m doing well, right now. I can go to that person when I need to.”

Cheryl:  

Yeah. And we’re going to talk more about the OT role, but actually, now that we’re talking about the toolbox, I would love to know, just on a personal level, like what are some of the tools you use on a daily or weekly or monthly basis to manage POTS and EDS?

Emily: 

Yeah, it’s such a funny question, because I did not go into OT to do this work, and —

Cheryl:

Same with me! 

Emily:

Yeah, I had no idea. I mean, I never saw an OT, unsurprisingly to me now, nobody referred me to one and I don’t, I don’t even know who I would have seen because there just aren’t a lot of chronic illness OTs, I think. There can be, you know, if people find the right people, but so. So, it’s funny, because I didn’t even know what I was doing. Like, I just, I don’t know. I started doing these things. And they started to help me. But after going to OT school and seeing some patients with POTS and EDS, I realized like, oh, I kind of micromanage my illness in all these ways that I hadn’t really thought of, and built off those skills I learned in OT school. So, some examples of those are a routine. I’m pretty crazy about my sleep routine. And my boyfriend is actually the one that pointed that out to me. When we moved in together, he was like, “Do you realize that like, every night you do these things in this order, in this way, at this time.” And so, I think I really protect my body, not out of fear, but just out of like, I know that my body does well with these things. And so, you know, if I’m going to be out this late or whatever, I need to get home at this time, I need to be able to sleep in the next day. Like, I’m not going to put my body in situations where it’s not going to be able to recover from X-Y-Z. So, that is something I’m huge on. Yeah.

Cheryl:  

What is your — like, can you walk me through your sleep routine? I think other people are going to want to know like, “Oh, I want to do her sleep routine to see if it works for me.” Yeah.

Emily: 

That’s so funny. Yeah. No, it’s so funny because it’s so true. And I often don’t tell people certain things because I don’t want them to feel like, “Well, if I do what Emily does, then I’m gonna be okay,” you know, but it’s really not that complicated. It’s just that it’s consistent. So, you know, it’s basically like I take a shower at night, every single night. And I know a lot of people with fatigue, like that’s a really hard thing for them. So, that might not be the right thing. But sometimes I’ll even tell people like, using, you know, a bed bath or wipes or a foot bath or something to just feel clean, in whatever way that looks like for you. But the warm water is really helpful to help start sleep. And there’s like a whole trick behind that. So, I do that, and I, you know, brush my teeth, wash my face, you know, do all those kinds of like self-care things. I usually have a snack, and it’s right after my shower. It’s just like something really small. And yeah, like, take my pills, and then I go straight to bed. And that is where I think the key is for me, is if I take my shower at seven, and I don’t go to bed till 10, it doesn’t work anymore. There’s like this window of time where that’s helpful. Andit just really relaxes my mind, it relaxes my muscles, and it’s a routine for my brain. That’s like, next comes sleep, you know, you don’t have to worry, you’re thinking about sleep. The next thing is that we’re going to fall asleep. And I used to have huge sleep issues. And so, it’s a real success that for the last four or five years, I really haven’t had sleep issues.

Cheryl:  

And do you — have you carefully chosen your like physical asleep environment, like in terms of how firm your mattresses and your pillow? Yeah, because like I have, for example, one thing that’s some people love it, some people hate it, but I have a 10-pound weighted blanket. I’ve really love it except for if it’s too warm, then I don’t like it. But that’s really comforting for me. But do you have, like certain like text — I’m very picky about textures, too. Textures, and —

Emily:

Yes. Yeah.

Cheryl:

What’s that like?

Emily: 

Yeah, so, and OTs are the the queens — or kings, there are some guys too — who are the sensory queens, you know. I say like, we know a lot about sensory processing. And so, I hadn’t even realized my own sort of sensory preferences. But as a kid, I was really, really hypersensitive and did not have — couldn’t have sand, I felt like I had sand in my bed if there was any dirt or crumbs or anything. So, I do not spend any time in my bed and really in my room during the day at all. It’s definitely reserved for sleep. And yeah, I like my sheets to be like crisp, I do not make my bed and waste energy, you know, obsessing over it. But in the morning, before I get out of bed, I pull my sheets up onto me. And then I sort of slide out of bed. So, it saves energy, saves my joints and everything, because of the position I’m in instead of bending over. But my bed is, you know, relatively speaking, it’s made. So, the way I leave it is the way I find it at night. I tuck myself in to bed, you know, I tuck my sheets into myself. And that’s a sensory thing that I really didn’t realize. But it helps me to feel safe and secure, and that idea of compression around me. So, I don’t use a weighted blanket. But I know a lot of people love them. 

And, yeah, my mattress; I have a memory foam mattress, and I don’t sleep very well on hotel room beds. Like, there’s a lot of those very specific things that I have in place. So, and then I would say, you know, throughout the day, there’s, if I’m — you know, I have my tools, and I have some splints that I might wear if my hands are feeling worse sight. So, kind of paying attention to those early warning signs and those like early indicators that I might need some extra support. I think those are the things that you don’t know early on, you haven’t learned about your body, you’re just sort of like always in pain or you’re always feeling and you don’t get that relief to then know how to adjust. And so, for me, it’s this like tuning in enough, not obsessing, not like tracking every symptom or, you know, really worrying about it. But to have that awareness during breaks throughout the day to say like, “Oh, this has changed. Maybe I’m overusing it, you know, maybe I need to put something on,” whatever that looks like.

Cheryl:  

That’s so great. Whenever I teach people strategies for fatigue, I always say like, we have a lot better preventative tools for fatigue than we do remedial tools. Like, once the fatigue is bad, there’s not a lot you can do to like, you know, I wish there was like a magic pill you could take to make your fatigue go away. Maybe there’s like illegal drugs. I’m sorry, but um, but that, yeah, like you said, paying attention throughout the day and learning. I think this is, when you have anxiety too, it’s hard to be like, I need to learn how to pay attention enough in a way that’s like functional and not obsessive because there definitely can be the tendency, especially in the early stages, to be like paying attention in this like anxious way where you’re like, “I have to have to figure out everything.” Just saying okay, like this — this is why mindfulness has helped me. It’s all about like curiosity, like a curiosity mindset, you know, and just, “Okay, is my body telling me I might need to rest a little bit or is it telling me I need more support?” And you mentioned splints. The splints are there to provide like an external support to keep your joints from going out of position. Is that right?

Emily: 

Yeah, yeah, absolutely. Yeah. And so, then knowing, you know, what am I going to be doing this week or this day? And I look at my schedule at the beginning of every week, and I’m sure that I haven’t like over-booked myself. And I don’t mean that I do that perfectly. But I try.

Cheryl:  

Do as I say, not as I do.

Emily: 

Exactly. But what you mentioned about fatigue, you know, it just, I literally just was talking to a patient yesterday who overdid it at the end of her semester in college. And she was like studying and packing and just doing all the things. And I found myself so quickly going to, like, how do we prevent this from next time. And then I said to her, “I know that’s not very helpful for you right now. But there’s not as much that we can do once that happens, you really just have to rest.” And I think the same in a lot of ways for pain. Like, once you get so far in it, you know, there’s not as much we can do. It’s sort of like ride it out until it gets a little better. We want to manage it that much better would be how to notice those early signs and to back off before it gets worse.

Cheryl:  

Yeah, I totally agree. And I think something that I learned in Acceptance and Commitment Therapy, is that, you know, this is something that Dr. Bronnie Thompson said in one of our first episodes of The Arthritis Life podcast, but sometimes it’s totally valid to say like, I’m going to — it’s going to be worth it to me to suffer the consequence of overdoing it because of whatever life event it is, and the example I always think is like a wedding. Like, a wedding is like a time specific event. You can’t like, you can only pace yourself so much within a wedding, right? So, you might say, I know in advance that I’m going to, you know, I want to have the experience of being out on the dance floor or doing, you know, pushing myself. I know that this will, I am going to have to pay for it for one or two or three days afterwards. But sometimes it’s worth it for a specific event. So, thinking that your whole life doesn’t have to be, you know, the whole point of your life isn’t to manage your symptoms perfectly, right. You want to manage your symptoms so that you can have a life that, you know, that is enjoyable to you and that where you’re not — I mean, I’m just gonna reiterate what I just said. But yeah, I think it’s a trap to fall into to say that everything in my life has to be around managing my symptoms. However, when it’s, when your symptoms are so severe that you can’t enjoy the present moment, of course, you do need to manage them.

Emily: 

Yeah, and I’m even planning a trip to the beach this summer right now. And I’ve been thinking there’s, you know, a lot is out of my control, which I don’t do well with. And so, these friends are like, we’re going to do this, we’re going to do that. And it’s like, I need to know all of the things that are going to be planned, I need to have an idea of the schedule so then I can choose what’s worth it, you know. They’re talking about this where you get to go swim with baby seals or something. I’m like, that sounds great. But like it’s a two-hour boat right out. It’s a two-hour boat ride in. And it’s a long day. If I’m going to do that, and I might not be able to do something else. And I’m okay with that. Because I found my place with that of recognizing like, this is, I’m going to enjoy this a lot. And so, that’s going to be worth it.

Cheryl:  

Yeah, that’s such an important thing that we learn through time. Yeah, when is it going to be worth it. I think it’s a terrible feeling to be like, oh, I pushed myself and then outside of what I knew would be my comfort zone in terms of pain or fatigue. And then it was like, it’s not even worth it, you know? So, yeah, I think you and I are similar in that. For me, protecting my sleep is super important. Like, I protect my sleep like viciously or whatnot. Like, even when I used to do swing dancing, which was a little bit brutal because dances would like, I would literally teach a dance lesson from like 7 — I would teach a dance lesson from like 7:30 to 8:30, 8:30 to 9:30, and the dance started at 9:30. This is before when my disease was in like, you know, closer to remission. But I’m still having you know, the tendency to get fatigued. I would take a nap and like people would say, “Oh, you have so much energy,” like I took a nap from like five to seven. Like, literally like two hours. I got my first two hours of my bedtime sleep before because I’m like, I can’t just give up that sleep. I just had to kind of chunk it out earlier in the day. So, yeah, you know, figuring — and I know not everyone can nap. Napping can make people just feel groggy, but I’m very lucky that napping works for me. Are you a napper? Sorry. There’s my cat.

Emily: 

I’m definitely not a napper. Except for — that is so funny. I used to be when I was like, I was a lot sicker. But it’s so funny because yesterday I took two 10-minute naps. One was intentional. I’ve been learning more about naps and the sleep cycles. And really, I used to always say 30 minutes and I just recently had been learning that actually 10 minutes is really good. But I literally had 10 minutes before I had to go to work and I, anyway, I figured it out. But last night my body decided I was napping. I was actually looking at stuff for this podcast. I fell asleep upright at 7:30 with my hand under my chin, like looking at my computer for 10 minutes and then I woke up and then I was like, okay, feel a lot better actually. And then I continued, you know. But that’s not normal. I usually can — I usually just give up and go to sleep. I just like, yeah.

Cheryl:  

We love sleep. I am thinking about having a t-shirt made that says ‘Sleep Diva’. Like a sleep diva. Like, my husband knows. It’s literally like a love language. He’ll be like, you know, they say like, there’s always love languages or whatnot and one was like acts of service. So, like when Charlie was little or especially needed more help at night, he’d be like, “I’ll put Charlie to sleep tonight.” Like, that’s like, that’s my love language, just like you helping.

Emily:

That is an act of service.

Cheryl:

Yeah, totally. Yeah. But on to, you know, I want to make sure that I spend a little time allowing you to talk about — not allowing you, but, you know, talking about occupational therapy in general, because that’s one of the themes that has come up in this podcast, is like understanding the role of different people who might be on your multidisciplinary team to help you. And also, people who maybe you’ve never been referred to before, for some unknown reason. Or the reason is that, yeah, our profession has been traditionally like, about rehabilitation. Like, you injure yourself, and you’re gonna get like, there’s a period where you’re expected to, like, get back to your prior level of function. But with chronic conditions, which millions and millions and millions and millions of people have, we’re not, it’s not so straightforward, right? It’s not like, “Okay, you get diagnosed with RA, and then you’re gonna get back to your prior level of function in three months,” or something. So, but in general — so sorry, already on my soapbox — but what is, you know, in your experience, the occupational therapists role in helping people with dysautonomia and in EDS?

Emily: 

Yeah, there really isn’t like a traditionally role because I feel like we are making that now. I mean, I know therapists have been seeing people with hypermobility forever, but it’s not necessarily been a big area of our practice. So, in hypermobility, it’s actually very similar, I think, to arthritis and what your guests have I’m sure heard people talk about in the past, but really like self-management of your condition, whether that is using like sleep hygiene techniques, energy conservation and fatigue management strategies of how do I basically like work smarter, not harder, how do I do the same things, but do them efficiently? I mean, I’m like, I call myself the queen of efficiency, because people are like, “I don’t know how you do it, all you do,” it’s like, well, I really have systems in place to do things. That don’t always work but, you know, I do my best to do things efficiently. 

And then, similar to arthritis, you know, a lot of recommendations for whether it’s compression gloves to help with hand pain, making custom orthotics or splints that can go over, you know, your hand or your wrist, your thumb, or your fingers with hyper mobile digits. Or fingers, we often use what we call like rings splints, they basically look just like rings, but they prevent your fingers from hyperextending. And so, we’ll measure people for those, we’ll create those, you know, make those ourselves, or help people to find where they can get them online. And I feel like there’s just a million and one things that that we do, but at the end of the day, it comes back to that idea of self-management. And so, whenever I talk with therapists, even if there are any therapists listening, you know, it’s like, well, the insurance tells us that we have to get people back to where they were, or they have to be making progress, and what if they’re just maintaining, you know. You’re not allowed to do things that are just like maintaining their function. And so, the way I look at a lot of the goals and the stuff we do, is really about teaching strategies and helping people to follow through on those strategies on their own. 

And so, it’s not always that my goal is like, you’re going to quote-unquote ‘get better’, or that you’re all of a sudden going to, you know, have this all managed, but do you know what to do when your symptoms get worse? You know, like, I want this person to have three strategies that they’re going to know to do when their pain gets worse, or, you know, five different forms of mindfulness or breathing techniques that they can use to help their mindset or to help their like, their thinking skills, actually, you know, and to be able to organize their brain.

Cheryl:  

Yeah, and that’s, I just want to give an example of that because there’s a book from the American Occupational Therapy Association called Occupational Therapy Practice Guidelines for Adults with Arthritis and Other Rheumatic Conditions. And what you’re saying is very congruent with that, you know. One of the examples of a goal that they gave is ‘Client will use joint protection principles and adaptive strategies while performing gardening, other household activities, and activities of daily living that involve use of the lower extremities’. And it’s like, you know, those are the kinds of — it doesn’t have to be ‘Client will increase joint range of motion from X degrees to X degrees’, or, you know, ‘Reduce self-reported pain.’ Another one is client — another example from this article is ‘Client will use guided imagery or progressive relaxation and ice for pain management during rest breaks and after walking and cycling.’ 

So, yeah, when I was looking at this guideline, I thought, it really is a misconception we have in our own profession, I think, that we have to do rehab. So, I’m sorry if I even contributed to contributed to that as I was saying earlier, I think it’s just how we’re taught initially in school, is there’s such a focus on rehabilitation and improving people’s like, the actual symptoms, or the physical body part, you know. Not body parts, the body aspect of it. But it’s actually about you can make the goals around implementing strategies so they can do it in their everyday life. And when you say self-management, I want to make sure we define what that is. Because it’s interesting, when I’ve used that phrase with some of the people in my groups, they think it almost sounds like, oh, you’re just pawning it off on the patient, like, they have to just do it on their own. And it’s true that self-management is — to me, I just define self-management as the tools that you use on a daily basis to manage your own symptoms. And the reason that it is kind of like, it’s an opportunity, and it’s also a bit of a burden. But the fact is that you are the only person is going to live with yourself 24 hours a day, seven days a week. So, it is in your best interest to learn those tools. It’s, unfortunately, with chronic conditions, it’s not like, you’re not going to be able to go to therapy for one hour a week and fix all of the issues. It’s just not unfortunately going to happen. So, but sorry, how do you define — what I was initially thinking about asking — how do you define what is self-management to you?

Emily: 

Yeah, I’m so glad you brought that up. Because I do think and I, you know, it just rolls off our tongue, right? Like, we talk about it all day long. It’s just, it’s just a really important thing. But it does, I think, to patients sound like, “What do you mean? You’re just telling me I have to do this, like, by myself? But why do I need to go to somebody to tell me that?” No, I think the word I use all the time is empowering people. Because at the end of the day, it’s great if there are providers and you have people on your team who are going to help you and that are going to sort of do things for you. But I often just really struggle with how that often — how that kind of patients end up feeling like, “I am dependent on this person, in order for my body to be okay,” you know, like, “I have to go to a chiropractor, I have to go to physical therapy every week for them to put me back in place or for them to fix X-Y-Z.” And it really hurts my heart to hear people feel like someone else has to do something in order for them to be okay. 

And I know those strategies can be really helpful for people. And there’s a time and a place for them, especially in flares. But I just think how incredible if we can find ways for you to be able to do a lot of those things on your own. And if you don’t want to, you don’t have to, right. Like, there are professionals, especially when you don’t have the capacity or the energy, that can help with those things. But I want you to know how to have yourself at a different baseline on a day-to-day basis. And I think those are the self-management tools that we’re looking at, is instead of you constantly functioning at like a 1 out of 10, how do we help you to function at a at least a 4 or a 5 on a day to day basis with the tools you know, and the tools you have that now you’re empowered to be able to use. Things that are simple, like sleep hygiene, you know. They don’t have to be like, you’re doing all of this stuff to yourself, you have to do it for yourself. But that you have that option. And also, when there aren’t professionals who know something about your condition, which is a lot of times the case with these conditions that I see. There aren’t people who are experts, there aren’t people who know what to do. And so, you don’t feel helpless. You have those strategies that you’re able to tap into.

Cheryl:  

Yeah, I am so — you’re like definitely preaching to the choir with me, but I think it is something that I know we both kind of honor, is the fact that when you’re very newly diagnosed sometimes that can be really overwhelming, right, to learn that there is not necessarily — like, if the moment there’s a fix, like a fix for rheumatoid arthritis, I’m gonna be the first one to take it, right. Like, in the perfect world, we would have a fix for every ailment and go on our merry way and not have to do anything different. Just live your life. But the fact is that since we don’t have that for these chronic conditions currently, it is in our best interest to learn those tools and, you know, yeah, it doesn’t mean that you have to be the one that physically does and cognitively does everything. It could be, part of the tool could be, you know, delegating, you know, I do a lot of delegating to my spouse. And, you know, when Charlie was littler to caregivers, you know, hired caregivers. And so, but anyway, I know that you and I are both really passionate about like elevating the role of, you know, self-management and elevating the role of OT in helping people learn the tools for self-management. I wanted to let you have a platform to — this is maybe a little venting session — but to talk about, like, what about the current healthcare system kind of led you to be so passionate about this? And like, in a perfect world, what would you want? Like, I love to — like, if I ruled the world, every newly diagnosed patient would get X-Y-Z, you know what I’m saying?

Emily: 

Oh, man, I haven’t even like taking the time to dream of what that would look like. But yeah, it is crazy how little the patients that I see have gotten. And so, for POTS, for example, actually, you know, they come to me and I, at the very minimum explain to them their condition, what is happening, and why it’s happening. And like, come on, that should be so basic, right? But the reality is, we live in a world where doctors spend 2 to 5 minutes with patients, maybe 8, you know, maybe if your first appointment is 30 minutes, if you’re really lucky at an academic institution. But even then, it’s a lot of testing, and not often a lot of answers, you know. You get a lot on the front end. And I think you don’t necessarily get like, well, what does this mean for me? And how do I, what do I do about it? And so, the idea of plain language of explaining a condition in very simplified, understandable, patient-friendly language. 

Also, for POTS, like we have these kind of basic lifestyle interventions, which are, you know, fluids, like hydration and sodium. They’re actually supposed to eat more sodium to help with their circulation and blood volume, the amount of blood in their body, and it’s amazing how much it can help once they’re able to do it. But people are just told increase your salt, “Salt your foods more often, drink some Gatorade,” and it’s like, wait a minute. A Gatorade has, you know, not almost 100 milligrams of sodium versus something like a liquid IV or these other tools that we have way more sodium. And so, you can get a really big bang for your buck kind of an idea. And those are just so foundational for treatment. And as well as compression garments, you know, not just like, “You should wear compression socks,” but like, how tight should they be? What length should they be? How can we maximize the benefit of these tools? 

And then, for hypermobility and things, you know, there’s so many pain management techniques, and fatigue management and some of the brain fog stuff that that seem very basic. And I think they’re minimized because it’s like, well, it’s just these little tools or whatever. But in the life of a person, they can make a really big impact when you’re having so much difficulty. So, I would love every patient to see an OT, and an OT who knows something about these conditions. And a big part of our role as an OT, which is actually newer in our framework of our guidelines of our practice, is healthcare management. And that’s the idea of like, it’s, to me, a lot of that patient empowerment. The self-management of like, how do I even coordinate all these doctor’s visits? How do I even like figure out how to, you know, it’s a full-time job trying to manage my health. People tell me that all the time.

Cheryl:  

Yes. Yes. Same with rheumatoid. Yeah, yes. And, and yeah, I’m such a nerd for OTs. Yeah, and the OT Practice Framework 3 that was under like instrumental activities of daily living, you know, like that health management and maintenance, and then it got moved for our 4th edition. And that’s like, our Bible of occupational therapy, is the OT Practice Framework, right? So, I don’t mean to make a religious reference, but it’s like our foundational document. And the other thing that’s in that, the 4th edition is, population health and interventions at the population level, which is really exciting to me, which means not just seeing one patient for one hour but being able to do like what you and I are both doing with social media, you know. Using social media, you can make a video and affect, you know, you can educate 2 million people. Like my friend, Equip Me OT, she recently — Lindsay, she was on the podcast recently — she just did an article or sorry, a video, showing how — and I’ll put this in the comments or, sorry, I always say comments; in the show notes — that it’s got almost 3 million views now on Instagram. And it’s about a rubber thing that helps you put on and take off compression garments. And, you know, what’s exciting to me is it’s not just views for views sake, right. Not to be like, “Look at me, I have 2 million views!” It’s the idea that 3 million people now have seen that there’s a way to put on and take off compression garments that might make your life easier. That is such a hard thing to do when you have hand pain or weakness from arthritis, or, you know, EDS. 

And so, anyway, the idea that we are taking our skills and our training and being able to affect more people is really exciting. Sorry, I’m just preaching to the choir. But I did want to say just a little, sprinkling a little research in here, that for those maybe providers who might be listening, health providers, whether it’s doctors or occupational therapists, the primary audience from what I hear feedback on is patients, but a lot of patients are also providers. And there’s Level A evidence for education and self-management programs to improve performance and quality of life and reduce depressive symptoms and pain in arthritis. And that’s from those same OT guidelines. So, it’s not like we need to wait for more evidence, we need to actually implement the evidence that’s like very basic and already there. 

So, that’s why I get frustrated. Because I’m like, why are we not doing this. And that’s why — anyway, my longer story of why I started Arthritis Life is that, you know, I was finding that  — there’s many reasons why I started Arthritis Life — but that in some parts of occupational therapy, we’re over serving, you know, in the schools and stuff, there’s kids getting services who shouldn’t necessarily, don’t necessarily need to qualify for OT, for skilled, you know, therapy. And then there’s people with these really disabling you know, quality of life threatening conditions like EDS, POTS, arthritis, who are getting nothing, So, I’m like, we gotta gonna do something. But anyway, on the interest of wrapping it up only because I have to take Charlie to school soon in the next, like, 10 minutes, I always like to ask my audience, or my interviewees in general, you know, what words of wisdom do you have for people who are newly diagnosed with a chronic health condition, whether it’s an inflammatory arthritis or EDS, or POTS? I know this is such a broad question, but what would you say to them?

Emily: 

Yeah. Yeah, I think it is. It’s a hard — it’s hard to wrap it up in just a, you know, a single word. But I think the idea of getting curious, like you mentioned before, you know, with mindfulness, trying to look at things in a different way if you can. And that’s where I think a lot of times what happens with these patients that they don’t have answers, they don’t have anybody, that seeing an occupational therapist can be someone to bounce ideas off of. And so, then people, you know, it’s like, “Well, great if I have somebody, but what if you don’t have someone where you are?” And so, that’s when, you know, trying to sort of take a step back, looking at the groups that already exists, like yours, Cheryl, you know, in the communities that are out there, trying to find those, and just kind of look at things from a different angle. Because you’re not necessarily going to get that from the medical provider, who’s going to say, “These are your options, these are your drugs, there’s not really much that we can do for this condition, you know, go on your way.” But to say like, what else is there? Like, let me just sort of get curious about is there a different way I can do something, and then to be open to that, too, because it’s not necessarily easy when someone tells you I don’t have a magic pill for your fatigue, I don’t have a magic thing for your brain fog, you’re going to need to sort of put in some of the work, which is really hard when you have fatigue, and you don’t have any extra energy. But what could you do, how could you wrap your head, you know, like, what are some other techniques that could be helpful that might seem small in the moment, but could have some really big beneficial outcomes down the road?

Cheryl:  

Absolutely. Yeah. That makes perfect sense to me. And is there, you know, before we completely wrap up, is there anything else you wanted to share about these conditions or your experience that you haven’t had chance to say yet?

Emily: 

Yeah, I think just even, like, kind of what I just alluded to, that online, there are so many resources. And what you’re talking about with Lindsay and with your work and the stuff that I’m trying to put out, it’s just like, even when you don’t have someone near you, or you don’t have a therapist who knows something about these conditions, you know, you don’t have a Cheryl, or you don’t have a, you know, whoever near you, there are a lot of therapists who are willing to learn, there’s a lot of people who are who are interested and who can be advocates for you, especially if you can give them some resources. And so, when you can find resources like we’re offering, that, you know, try and find a therapist who’s just open to education, open to ideas. And then they have so much knowledge, they went to school for a long time to be able to help you even more with the information that we’re putting out to really cater it to you and to make it individualized. But just giving them those resources can often be helpful, because therapists don’t always have time, you know, to do that, to do the research for every kind of not as common condition, you know. And so, if you can help them, empower them with those resources, that can be great.

Cheryl:  

That’s so, yeah, I love that. And I wanted to make sure I give you a chance to say where people can find you online. You’re like me, you have a lot of different accounts. 

Emily: 

Oh, gosh. Yeah. Yeah. So, the biggest thing I am on is Instagram, for sure. So, it’s just my name, @EmilyRichOT. The OT is not in my name, but that’s fine, I’m Emily Rich OT. And most of what I do is definitely Ehlers Danlos, POTS, and then also, long COVID. Because that’s fitting into a lot of this world and I just want to be able to help as many people as I can. And then same thing on Twitter, it’s you know, @EmilyRichOT; LinkedIn, all of the places you can find me

Cheryl:  

And then you have one of my favorite names for a YouTube channel. Do you wanna tell them what it is?

Emily: 

Yeah, its ‘Oh The pOTabilities’. So, it’s like O-T, you know, Oh The, and then POTS-abilities.

Cheryl:  

It’s like multiple levels of — yeah.

Emily: 

I love a good pun. So, yes, there’s a few YouTube and podcast videos out there that hopefully, I’ll add more to over the years.

Cheryl:  

Yeah, I’m very, I’m very excited about your work. And I’m glad that we’ve connected again through social media. It’s amazing to see, you know, that, I mean, I’ve learned a lot from your channel. I’m sure those listening — I, again, I feel like it’s been meant to be ever since I started this new group of Rheum to THRIVE in April, I’ve gotten a lot more questions about POTS and EDS, and I’ve seen more awareness of it. So, I know it’s a topic. Even there’s a Reddit thread the other day where someone brought it up, like hey, does anyone else have, you know, and then there was actually an OT who has EDS and RA, by the way, who commented. I was like, Oh, I gotta get her on, too. 

Emily:

How cool is that.

Cheryl:

So, anyway, yeah, I know. We all connect. But thank you. Thank you so much. I really appreciate your time again, knowing that you have, you know, only so many spoons throughout the day. I appreciate that you spent some of them, energy spoons, that you spent them on this podcast today. So, thank you.

Emily: 

Thank you so much, Cheryl. Thanks for all you do.

Cheryl:  

Thank you. Bye-bye for now. 

Emily:

Bye.