fbpx
Episode Cheryl Solo YouTube Thumbnail
Podcast

Five Things I wish I had Known When I was Diagnosed with Rheumatoid Arthritis: Update & Re-Release

December 15, 2023
42 min read
FacebookXRedditPinterestEmail

Summary:

In episode 111 of the Arthritis Life Podcast, I revisit an episode from 2020 called: “The Five Things I wish I had Known when I was first Diagnosed with Rheumatoid Arthritis.” This includes advice for people newly diagnosed with rheumatoid arthritis.

After discovering that this is the most downloaded of all my Arthritis Life Podcast episodes, I decided to release it with some additional insights from my perspective now. I also provide some updates after facilitating support groups for over 250 people in the last three years.

This episode includes a deep dive into how rheumatoid arthritis affects more than just joints – it affects people’s whole bodies, and whole lives.  I reflect on the five things I wish I had known when I was first diagnosed, way back in 2003. I hope that these reflections help you feel less alone and more grounded as you try to manage the best life possible with inflammatory arthritis! 

Episode at a glance:

  • #1 – Rheumatoid Arthritis affects more than just joints. 
  • #2 – RA affects your social life in difficult ways (such as misconceptions) and positive ways (such as connections with a chronic illness community)
  • Tips for using websites and social in productive ways
  • #3 – Gray areas are the norm for autoimmune disease
  • #4 – Living with chronic illness will affect your mental health.
  • Cheryl’s experience with allowing herself to grieve her health
  • Medical gaslighting.
  • #5 –  Managing RA is a job but you can learn how to do it! 

Video

Please note that I did not adequately preserve the video from the original recording in 2020 so there will only be video for the parts that I updated in 2023 🙂

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bio:

Cheryl Crow

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

Full Episode Transcript:

Updated introduction in 2023:

Hi there. This is Cheryl, the host of this podcast, and I am talking to you in December, 2023. And this is the first time I’m going to do a re-release of an earlier episode, but I’m also going to include some updates from now. So the episode today is called, as you probably know if you read the title, but the five Things I Wish I had known when I was diagnosed with Rheumatoid Arthritis. And this is something that I reflected a lot about and I posted in October, 2020, which as we all know now, looking back over three years later, that was a very unique time. It was when the pandemic was still in full swing. I don’t believe that the vaccines had even come out yet at that point. But the episode is really about reflecting. At that point, I’d had rheumatoid arthritis for 17 years. Now I’ve had it for 20 years.

And it was about sharing with you all the things I wish I had known in hopes that that would help you have a more smooth journey and feel less alone. So when I first looked back on this, it was interesting. I thought, wow, actually, I think I would keep these five things the same if I was recording this from scratch today. The only thing that really sticks out that I want to put a caveat for is that I, at the time, I had created a program that I was calling Rheumatoid Arthritis Roadmap. And that has evolved and I have restructured it at times and added things to it. It is now called Rheum to Thrive. And so that has a self-paced course that anyone could buy and take and learn from at any point in time. And it also has the support groups, which I run once in the late winter, early spring, and then once in the fall.

That’s how it’s been going the last couple years. So if you hear me say the course or Rheumatoid Arthritis Roadmap, that is the old name for it in the old structure. But one of the reasons I changed it to Rheum to Thrive is that it is now covering all of the rheumatic inflammatory forms of arthritis like psoriatic arthritis, spondyloarthritis, ankylosing spondylitis, non-radiographic, axial spondyloarthritis. And to some extent, a lot of the material cup is relevant to all chronic autoimmune conditions or just chronic illnesses in general. But that was the most important thing I wanted to say. That’s outdated, I guess I would say name if you hear that in this episode. But the other thing is just simply that it’s really interesting that these five things to me have stayed the same. The fact that rheumatoid arthritis affects more than your joints,

It affects your whole life, it affects your social life, it affects your mental health. And that the gray, I think the biggest thing is the number three, that the gray areas are the norm. They’re not the exception. And to spend less of my time, I wish I had not spent as much time seeking certainty because I was ultimately futile that it’s better to accept uncertainty earlier on in your journey. But that’s my experience, that’s my 2 cents. And then number five is still very true that managing rheumatoid arthritis is a job, an unpaid job. I sometimes refer to it as unpaid internship, but that you can learn how to do it. You can get an orientation manual, whether it’s  Rheum to Thrive  course and Support program, or it’s a book that you want to read or a different program you want to do that it’s not self-evident how to manage this. This is not something that most people can just kind of intuitively figure out, that it does take time, it takes effort because of the complexity of rheumatic disease. So anyway, I truly hope that you enjoy this re-release of the original episode 14. The five Things I Wish I had known when I was first diagnosed, and those listening to this in December, 2023. I hope you have a wonderful New Year, and I’ll talk to you later. Bye-Bye for now. But keep listening to the episode.

Original episode (with a few parts edited out that are outdated at this point related to my programs):

Hi, everybody! I’m so excited for my first solo episode since the very first episode. So, I decided it was a good time to check in and explain a little bit more about my story and, yeah, just go a little bit more in depth. So, today’s topic, if you didn’t already read the title, is the five things I wish I’d known when I was diagnosed with rheumatoid arthritis. 

The first thing is that it affects a lot more than your joints. 

And I honestly didn’t quite understand that all the way and when I first got diagnosed. I did understand that it was an autoimmune disease, but I still had this kind of mental disconnect that I think a lot of people have around the word ‘arthritis’, so I just thought, “Okay, well, it’s an autoimmune disease but it’s really only affecting my joints,” but actually, you know, rheumatoid arthritis is a systemic disease, and because it’s autoimmune, I now understand that it doesn’t just target your joints. It happens to target the synovial lining of your joints, but it also targets other body systems, other organs like heart, lungs, and eyes, which is definitely one I’ve had quite a bit of difficulty with. And, you know, you could have these more systemic symptoms like fatigue and brain fog, that for a while I thought were related to my medications, but they actually can be just related to the disease itself. 

And something that goes along with this idea that it affects more than just your joints, is that it is a chronic lifelong condition. So, you still have it even if you might be going into remission for a little while, and that still has an effect on your life. So, again, basically a little theme throughout this you’ll see is that things that seem uncomplicated at first are actually complicated. It’s kind of like a good life lesson I guess I would say. I thought, “Okay, well yeah, I’ll have this rest of my life, but if I can just quote-unquote, ‘If I can just get it under control or just figure it out’ then it won’t really affect my life that much.” 

And, for example, I was in medicated remission for a while, and I didn’t have that — the rheumatoid arthritis didn’t have as big of an adverse effect on my life, but I still had to spend a lot of time managing it. I had to go get the blood work, I had to talk to my insurance to make sure things were approved, I had to make my every three months bloodwork appointments, and I just had to factor into my life decisions, you know. I had to think about the fact that I was more prone to infection and alter my behavior based on that when I would be doing things like going swing dancing, which is a very, very, you know, touchy feely thing where you’re exchanging germs with a lot of different people. So, it affects your life, even when you’re not symptomatic or it can affect your life, I would say. 

Going along, again, this theme of arthritis — rheumatoid arthritis — affects more than just your joints, it a) affects your whole body, and then b) affects your life, and especially as a young person. So, I just mentioned things like appointments and just having to learn really early on to be your own advocate, but it also can affect your sex life, your romance, and your choice of careers. And I know that a lot of my quote-unquote ‘rheummates’ or friends with rheumatoid arthritis have also drastically changed what they thought they might do on their life based on their rheumatoid arthritis. They might not — it isn’t to say that, “Oh, you can’t do anything that you wanted before,” there are plenty of people with RA who are doctors or other high intensity careers, but it’s important to take it into account. 

For example, for me, even though I wasn’t very symptomatic at the time, I chose to go to grad school. I chose occupational therapy over a more physically demanding field like physical therapy for many, many reasons, but one of them was that I wanted a career that could — I could have a lot of flexibility around it, and PT has less flexibility than OT. 

Number two is that rheumatoid arthritis will affect your social life in some way. It’s beyond just the joints. 

So, this is kind of like a sub-section of point number one. I had a hard time making these points, dividing them into categories because I have one of those brains where I see the connections between things, and so I’m always like, “Oh, that relates to that.” But anyway, so it affects your social life, it affects things like dating and your friendships; and I think the thing that I see over and over again on social media is people who feel alienated. 

So, that’s one of the negative things, is that you could feel alienated from friends and family because they don’t understand. And literally just minutes before recording this, I saw someone who said, “People just keep thinking that my arthritis is only in my knee or only in my hand, and it’s really — it’s in my whole body,” you know. And that’s why when someone’s like, “Where’s your arthritis?” I’m like, “It’s everywhere!”, you know, or, “What happened your hand?”, “My immune system!”; that’s my little joke. 

I think knowledge is power. So, preparing yourself when you first get diagnosed to understand that this isn’t just this kind of simplistic mentality of like, ‘I’m just going to live my life, perfectly exactly how I did before, and it’s not going to affect anything,’ you know, I think some people do — I think, first of all, you do you. Whatever helps you function in your world. What I’m trying to say is that maybe don’t be blindly optimistic about this idea that ‘ I’m not going to let it affect me’ because it’s pretty hard to not let it affect you. And for me, I’d rather face that head on, than be kind of in denial. 

So, that’s something when I look back and kind of wish that I had understood that; again, instead of just being like, “Okay, fine. I’m just gonna take these meds and not worry about how this might actually affect my life long-term.” You know, just consider, prepare yourself for how you’re going to explain it to friends and family. 

And actually that’s why in my course — The Rheumatoid Arthritis Roadmap (*Note added in 2023 – I have since changed the title to “Rheum to THRIVE – self paced course” and have expanded the course to include psoriatic arthritis and spondyloarthritis as well as RA)— I have a whole section about how RA affects your social life in general, and that includes things like how to address other people’s misunderstandings and misconceptions, and then also how it affects specific relationships like marriage and dating. 

And, you know, there’s tons of research out there. It’s really fascinating. As an occupational therapist, I’ve had the chance to look at a lot of the research, and there’s research on how chronic illnesses in general affects marriages; and not just the person who has the illness, it affects the partner too. That’s something to, again, take, look at it head on. Don’t try to be necessarily in denial, is my general advice. Again, if denial helps for you, I’m kinda like at the end of the day, it’s all about what works for you, but my observation of others has been that denial is a short-term strategy. It rarely is necessarily the best thing for you long-term. But, again, if to get you over a hump, sometimes you just have to have a little denial. 

The other thing about how it affects your social life though is it can affect your social life in a lot of good ways, in the sense that you know who’s really there for you in your own pre-existing friend group, but you also get to know new people. You’re part of a community. Whether you know it or not when you get diagnosed, you’re part of an online community and a global community of people with your same diagnosis. That’s been really incredible to me. I mean, I got diagnosed in 2003, so before social media. Like, there was really no way when I got diagnosed to connect with other patients, other than in-person events like The Jingle Bell Run for the Arthritis Foundation, or in the waiting room, and that can lead to a lot of alienation especially for young people.

 Like, for me, being diagnosed at age 21 and then going to a waiting room with a rheumatologist and being like, “Wow, I’m the only young person here,” people assume you’re they’re waiting for your parent or grandparent, you know, and you’re like, “No, I’m here for me,” you know, and honestly it didn’t really bother me too much but I know a lot of patients, like it kind of gets them down. And so, you know, but knowing that, wait, you’re not the only one that’s had that waiting room experience, when you go online and you connect with groups, you can feel like you’re not alone. And you know — not even just feel that you’re not alone — you know, because you see other people’s stories, and you can connect to them. And when you’ve been through something that kind of makes you think about your own mortality, and think about like, “Okay, wait, I can’t take this stuff for granted. I can’t take my body for granted. Like, I don’t know that it’s actually going to work forever,” even starting to get that kind of perspective as a young person, it does change your outlook on life. So, I’ve been really amazed at the friendships I’ve developed, and particularly since the pandemic actually. 

One last thing about that, I’m publishing a free training this week on how to overcome overwhelm through online health literacy. I swear, I try so hard not to have super long titles, but this is just who I am as a person, it’s hard. So, what that is, is it’s actually a lesson from the course that I decided to make a free preview lesson, because it’s so important and I see people get confused all the time trying to find health information about their rheumatoid arthritis online. And they get really confused and they go down rabbit holes, and it’s like a stage everyone goes through at some point, but there are some ways of kind of figuring out what information is valid and what isn’t. 

And about social media, I’ll just quickly review one of the topics that I think is super important that I see people get wrong all the time, is representativeness, which in the context of chronic illness that means if I’m encountering someone else on social media, and they maybe have my same diagnosis, and maybe they’re even taking the same medicine as me, are they representative of what I might experience in my prognosis or my long-term disease? And it’s so tempting to think that everyone’s gonna be representative, because we want to find others who can have a similar experience to us. But actually knowing whether another patient is representative of your experience is really, really complicated. 

I’ll give you a quick example. Let’s say I’m on methotrexate — and I was on methotrexate on and off since 2003 — and then there might be two other people in a social media group, one of them diagnosed in 1982 before methotrexate was available and biologics were available, and then they get put on methotrexate like in 2001 or something. And then there’s somebody who gets diagnosed with mild rheumatoid arthritis in 2019, let’s say. All three of us, even though we’re all on methotrexate, we’re going to have a different prognosis long-term. Because, first of all, my RA, my diagnosis wasn’t mild. It was classified as severe. And so, already I’m starting behind that person from 2019. But also, I’ve had it for longer, so I’m also behind her, but I’m way ahead of the person diagnosed in 1982, because they had 20 years of disease progression — I don’t know how I came to do the math I just did — before they even got put on methotrexate.

 So, while it’s so tempting to just be like, “Oh, well, they’re on methotrexate and this happened, therefore it’s gonna happen to me,” you know what I’m saying? Well, I don’t know if you know because I’m just talking to myself right now. Knowing whether someone’s representative and knowing whether or not you’re making the mistake of assuming they’re representative when they’re not is one of the biggest, most important things for like, for lack of a better word, health literacy or like understanding how to make sense of health information when it comes to peer-to-peer health information. Just be careful to not over-generalize from someone else’s experience that might not be representative of yours. So, that’s number two, is knowing that it’ll affect your social life, your own kind of personal micro-social life of like friends and family, but also you’re going to become part of this social network with a social network of chronic illness warriors. 

Okay, so, number three really nicely stems from what I was just saying at the end about how complicated people’s prognosis can be and just these illnesses — autoimmune diseases — are notoriously tricky. 

So, number three is that there are going to be a lot of gray areas. 

And for me, it’s become important to accept that those gray areas exist rather than saying, “Oh, no, I just need to do something different or see a different doctor to get someone to give me a black and white answer,” and even just the diagnosis itself, like Dr Balderia said, you know, it’s a diagnosis of exclusion. That means that it’s not like there’s one silver bullet; like, “Oh, you have X-thing on your blood, you absolutely 100% for sure have RA.” No, they have to do a physical exam, a medical history, and blood work, you know, to actually determine the diagnosis. 

So, know that gray areas are a norm not the exception when it comes to rheumatology and autoimmune issues. And not just the, you know, ambiguities and gray areas around ‘What do you have?’ but also ‘What should we do?’. There are some gold standards, and there’s a lot of research that shows that okay, certain things are very, very likely to be effective, but it still doesn’t mean necessarily anyone can say 100%. So, understanding gray areas and ambiguity, and being able to tolerate those, it became such an important skill to me over time. 

So, if I’m saying what I wish I knew in the beginning, it is that the sooner I could have accepted that gray areas are part of this journey, it probably would have saved me from some unnecessary heartache. Because if you think something’s a problem and you try solve it, and it’s not actually solvable, you just end up wasting your energy, right. You’re like, “Oh, how can I just make this black and white, I’m just going to figure out how to make it black and white.” And, you know, that problem solving technique only works if that’s actually realistically possible. 


Unfortunately, I think there are some people out there that kind of prey on the vulnerability that patients feel when they kind of start coming to grips with this ambiguity and, you know, as we’ve talked about with the nutrition episode, anytime someone says, “All you have to do is follow this diet and you’re going to cure your RA,” I just would — I would caution you take that with a grain of salt because if it sounds too good to be true, it might be. Again, if at the end of the day, if you’re the lucky patient that that works for, then that’s good, for you, you know. But the gray areas, again, are more typically experienced. 

So, let’s just say there’s a thing in science called the null hypothesis, which means when you’re about to do an experiment, the null hypothesis is that nothing will change in the experimental group. Meaning let’s say you’re saying, “Okay, I want to know whether —,” let’s do this, this is a hot topic, “— I want to know whether CBD is going to help with my pain.” I’m going to say, “Okay, on Monday, Wednesday, Friday, I’m going to take CBD for my pain. And then on Tuesday, Thursday, Sunday, I’m going to not take CBD from my pain, and then rate my pain on those days and see if CBD worked.” The null hypothesis is that it won’t work, regardless of what we’re testing, it’s always kind of that. The null hypothesis is that the variable that you’re changing will not have an effect. That’s kind of how I try to see my prognosis now, is that, okay, all you know for sure — and this is kind of where the acceptance and mindfulness comes in — is that like, all I know for sure is the present moment. And so, if I have to kind of make an assumption about the future, I’m just going to say, “Okay, what if it doesn’t change? What if my pain never gets worse, or never gets better? Like, what can I still do, how can I still function?” 

So, the next thing I wanted to talk about was number four, the ‘What I wish I knew’ was that it will — you know, living with a chronic illness, whether it’s rheumatoid arthritis or ulcerative colitis, or Chron’s disease, or anything — I’m thinking about the GI ones — but anything.

(Number 4): It’s usually going to affect your mental health at some point, but you can learn tools to cope with that. 

One of the things that’s unique about my personal history is that I had a very, very undramatic childhood. Even like my psychologist said, you know, they described — they would describe my family life and my upbringing as like a positive outlier. Which, I’ve always loved that, because it’s true. I mean, my parents are happily married, I have a very stable family, I really love my brother and sister — I’m not gonna say like, yeah, I walked on rainbows like every single day, but it was like a realistically really happy childhood. 

I felt for a long time, even after my diagnosis of RA, well, I shouldn’t feel bad about it because everything else in my life has gone so well. I shouldn’t feel bad about this. It was a double-edged sword. I’m not gonna say it was a bad way to think but it was like, almost like a form of toxic positivity to myself. For a while, I didn’t really engage with actually just acknowledging that this was hard, and that that’s okay that it’s not easy for me sometimes. 

So, for example, when I started going to therapy finally — I finally went to therapy when my son was one-year-old — and before that I was like, “Well, therapy’s for people who have like really big problems, and mine aren’t that big,” do you know what I mean? It’s like gratitude for what you have is so, so helpful, but if you use that gratitude to minimize your legitimate suffering, that’s not helpful, you know? 

And actually I had this great conversation with one of the professors at Vassar. I said like, “I just feel like everything in my life has gone well except for my health, and so I should be more grateful. I shouldn’t make — I shouldn’t feel sad about my health situation right now,” this is before my diagnosis, when I was just suffering from a mystery ailment that everyone kept telling me, “Don’t worry about it. You’re fine, you’re not sick.”

He was like, “Well, Cheryl, it’s like essential vitamins. If you have like 200% of every vitamin except for one vitamin, let’s say vitamin Z, you only have 10%, you’re going to feel that loss. Like, the extra vitamin C, and vitamin A, and vitamin D, they’re not going to make up for the lack of Z. It’s a different thing, and you don’t have it, you know,” and I was like, “Oh, my gosh, this is the best truth bomb.” His name’s Peter Leonard anyway, I think he’s still there. Hi, Peter, if you’re listening. 

But that was the first step for me being like, oh, like I had to allow myself to feel grief about just what I was going through. Like, going through the trauma of being not believed by people in power who had the power to make me feel better, or to understand what physically was happening with me. 

I was dismissed repeatedly, and it took me a long time to come to terms with that because I had grown up trusting adults. So, I was like, “Okay, well, you know, these doctors are telling me I’m not sick, so I’m not sick.” Lo and behold, I actually was sick, you know, and that was a huge blow. That was like — and, again, I’m privileged in terms of socioeconomic; I have white privilege as a Caucasian person, and so I want to acknowledge that I grew up privileged, but I didn’t have health privilege at that time, right? 

Health privilege or able-bodied privilege is the privilege of living and inhabiting a body that works, and I didn’t have that but it was worse than not having that. I was told that I had it by the doctors, the people in power, that, “You’re not sick. You’re literally just being a hypochondriac.” It’s like a firefighter coming to someone’s house and being like, “It’s not on fire. Stop calling us.” The person’s like, “Yeah, it’s on fire!”, and they’re like, “No, it’s not. Nope. We did the test, it’s not on fire.” 

It’s such a horrifying feeling. Looking back, I was really gaslit. Like, that’s the best way to put it. I want to be clear that I don’t think there are any particular providers that were intentionally gaslighting. I think the doctors believe they were right. They don’t even know that they’re doing it, so they think that they’ve got the right solution. 

And one of my long-term goals — like, my bucket list goals — is to do some sort of campaign. Doctors have to be trained to understand what to do about situations where they don’t know that the person’s not sick, but they don’t know that they are sick, because the answer cannot be that absence of a diagnosis means that you’re not sick. If the average time of diagnosis of an autoimmune disease is like five to seven years, that means that person, for five to seven years, was sick and was being told constantly that they’re not sick, and that’s not acceptable. 

And I think, yes, there are people out there who have an illness, anxiety disorder, where they are truly believing that they’re sick when they’re not. But to me, it’s like, it’s almost like the death penalty where like if you can’t be 100% sure that everyone who’s getting that is guilty, it’s like a non-starter for me, right, whether or not philosophically you should have it. If you can’t be sure that you’re inaccurately diagnosing someone as a hypochondriac who isn’t, you shouldn’t diagnose anyone as a hypochondriac. That’s my opinion. Nobody asked for it. 

What I wish I had known is that this will affect your mental health. The disease itself, it can be a stressful thing. You’re going to have to learn how to manage. You’re going to have to learn how to cope. And, you know, I’ve talked — I think every single episode, I’ve talked about Acceptance and Commitment Therapy, except for maybe the diet and exercise ones. But, you know, acceptance-based therapy — acceptance not meaning resignation but being able to tolerate or sit with the current present moment from a mindfulness standpoint — that has been the best for me, personally. 

You know, I just feel like if I could just give everyone a copy of ‘The Happiness Trap’ by Russ Harris, it’s just been the most helpful thing. So, just again, prepare yourself. This is not just a physical condition. It affects your your brain too. And of course, even just this whole idea of like a brain-body difference, there is no true difference. Like, your brain is part of your body. 

So, the number five is going to be learning how to manage your disease. So, this is kind of that CEO level like where you’re the executive director of your life. Managing this is a job. 

Managing this chronic long-term disease is a job that requires a lot of skills, and you can learn them, and you will learn them over time, but there are harder ways of learning them and there are easier ways of learning them. 

And so, of course, I happen to think that doing something like my online program, The Rheumatoid Arthritis Roadmap ( (*Note added in 2023 – I have since changed the title to “Rheum to THRIVE – self paced course” and have expanded the course to include psoriatic arthritis and spondyloarthritis as well as RA) is really, really smart. I literally created it for this reason, but of course, I’m very biased, so take it from whoever, you know, do your research and figure out who you think is gonna be the best to help you. 

But know that learning how to manage the physical symptoms, the pain, and the fatigue, and knowing how to sort through what amount of exercise is the right amount for you, what kind of dietary interventions are going to be best for you, what can you do to cope on the mental side of things, what can you do to develop your own little coping toolbox or toolkit, how can you manage your social life, how do you explain this to friends and family, but also how do you manage your symptom tracking, and your medication tracking, and all these kind of organizational aspects? You have to be in touch with all these different providers, and the insurance, and then the financial side of things, and then you have to manage your rest of your life, you know, normal everyday tasks like cooking, and cleaning. 

And so, know that there are tools out there. Yeah, and just approach it like a job, is I guess what I would say. I think I felt really scattered for a while until I learned of this concept called self-management when I went to occupational therapy school. And self-management basically means managing all the different ways that your disease affects your life. The symptom tracking, the appointments, your kind of game plan for how you’re going to manage symptoms like pain and fatigue on a daily basis. 

And, you know, though that is a skill that you can learn over time, and you can learn it on your own, or you can learn it with support. That’s why I created my program, because I saw a big gap, you know. I saw that people were getting diagnosed and then just told, “Okay, come back in three months.” You cannot in 20 minutes get enough information from your doctor to figure out how to navigate this new normal. 

What people end up having to do is kind of piece things together on their own. They have like 25 tabs open in their computer and they’re just struggling to reconcile and sort through. It’s such a cognitive load. It’s almost like when you’re trying to learn a new language, it’s so laborious. Once you know it, you’re just fluent. 

And I honestly think when you’re a doctor or you’re a health provider, it’s like you just take for granted all that you had to go through to learn that knowledge — “Oh, well, the patients will just figure it out. They’ll just figure out how to, how to exercise, and how to figure out, you know, fatigue and how to track their symptoms. They’ll just figure it out,” like, they don’t realize — like, they forget, because they’re fluent in that language, they forget how much went into it. That learning process and that learning curve, and it’s just really, really painful, I’ve noticed, for a lot of people. 

People who try do it on their own, it’s harder than doing it with support, but you also have to do it with the right support because you might find people who, you know, have good intentions but might lead people down the wrong path. They don’t understand that – I’ve been — I’ll tell you, I have been targeted by certain people who will say, “Oh, just do my program and it’s going to heal your RA and cure your RA,” and I’m like, I don’t agree. Like, I don’t agree that it is that simple.

 Anyone who says that they 100% guarantee that anyone who does their diet program or whatnot can cure it, is, to me, that’s false advertising. Because there’s scientifically like nothing out there that’s guaranteed to work for everyone. So, I think there are alternative medicine programs that are very balanced in their marketing and so I’m not against anything alternate by any means. There’s one that’s a patient who does her own program and it’s based on Ayurvedic medicine, and she says very straightforward like, “This may help you. It may help you heal parts of the disease, it may not. Put it in, if you are interested in trying this for your toolbox. This is what’s worked for me,” and I think that’s a really balanced and really reasonable way to approach it. 

And all these gray areas, I think, again, there’s this disconnect that — and this is my soapbox and why I created Arthritis Life — but the information is out there in bits and pieces, right? It’s kind of like trying to learn a language by just going to all these different websites and like piecing together like, “Oh, well, this website says this. But this says that,” you need someone to help you sort through the noise, sort through the bad quality from the good quality information. 

So, I’m not knocking any of the stuff that’s already out there. I just — the reason I developed my Rheumatoid Arthritis Roadmap program  (*Note added in 2023 – I have since changed the title to “Rheum to THRIVE – self paced course” and have expanded the course to include psoriatic arthritis and spondyloarthritis as well as RA)— is I didn’t see anywhere where somebody could go through at their own pace, something that was comprehensive and covered all of the areas of how it affects your life; not just exercise, not just diet, not just fatigue, not just pain, not just mental. A little bit of everything. It has those things, but it’s also the self-management skills of like tracking symptoms, and communication, and social life, how it affects your mental health; like, it has an overview of each one of those things. 

So, that’s why the analogy I like to think about it is like, it’s kind of like a orientation manual for a new job, but it’s also like a driver’s ed manual. But at the end of the day, you are in the driver’s seat. You’re not going to have a health provider with you like 24 hours a day and that’s not realistic or reasonable. So, when I say that patients need more than like a 20-minute doctor’s appointment every three months, I don’t mean that they need like a 24-hour appointment every day. They need more support, in my opinion, at the beginning of their journey to get them off on the right foot to teach them the skills to where they can then run with them on a daily basis, and they can sort through the noise on the internet about what’s good and what’s not. And so, I feel really passionate about the need for this kind of program. And obviously the testimonials I’ve gotten have really helped me know that I’m on the right track. 

One of the ones that I really liked is from Laura in August. She said, “Cheryl’s course empowered me to take charge of my newly diagnosed RA. I’d recommend this course to anyone that’s feeling overwhelmed and confused by their diagnosis. It provides you with clear, concise information plus a community of people that are dealing with similar issues.”

 Also, you know, Anne said back in June, “I was hesitant to spend money on this course,” — I totally get that — “but I’m so glad I signed up. Cheryl’s perspective as both an occupational therapist and a patient, the personal attention she provides, and the opportunity to ask questions helped me take more control of my medical journey,” and Armani said in June, “I now have a solid foundation of practical strategies to live a fulfilling life even with RA,” and that — that is really like, my heart. 

That’s what I want, is for people to understand that you can have a great life, a fulfilling life, even with RA or despite RA. You don’t have to see it as something that you necessarily have to cure before you can have a good life, you know. There are tools you can use to work around it to be able to function better in your life. 

I really love what Melissa said. She said, “You know, I cried so many tears of relief during this course because I felt validated for the very first time. It was such an empowering opportunity to learn from Cheryl. I wish I’d had it years ago, but I’m so happy to have it now.” 

And one more, one more. Okay, this is from Sarah in June, “Getting valuable information each week about the things that really matter to me from someone who gets it was so helpful. I now feel so much less alone and more confident in managing my illness.” 

So, this week, it is — the reason I’m talking about right at this exact moment is that I’m planning on making the course available three times a year, and it’s currently — the fall one is available now.

And then after that I have a separate Facebook group for all the graduates. So, it’s been really really amazing this year just being able to put this together, you know, I started it in January. I started working on it and then the first beta course came out in March. And obviously that was a really weird time, March and April. I have just been really blown away by the people who’ve participated in it and just seeing the transformations that they’ve experienced, like going from being like, “I don’t know where to go, what to do, like I don’t know how to make sense of this. I feel alone, I’m the only one; I have to go through this all on my own, who’s going to help me,” you know, to like just the validation. Even just someone in the group saying like, “Oh, yeah, me too,” that’s just been really, really powerful. 

Additional reflection from 2023

So again, this is me talking to you now in 2023. I’m putting a little bit of some more context into this part of the episode. So, when I listened now back to the things that people had said in 2020 about the program, even though I’ve changed it and made what I think are improvements and to the course and restructured it as  Rheum to Thrive  it’s really amazing to see that the positive feedback is very similar feeling, validated feeling, getting valuable information about the things that really matter, and feeling not alone, having support, not having to go through it all on your own. So in a way, when I’m reflecting back on this three years later, I see that it’s one of those, the experience of having an autoimmune illness like rheumatoid arthritis or psoriatic arthritis is there are things that are just there. The challenges are the same. They just present themselves differently at different moments in time, at different stages of your life.

And it sounds so simple, but it really is that power of hearing someone else saying, me too, like, you’re not the only one This week, I just wrapped up the fall 2023 cohorts that had been meeting since September to December. And a lot of people said, it’s not like I didn’t before this program. I logically knew that I wasn’t the only one, that I wasn’t alone, but I didn’t feel that emotionally. And so when you have the opportunity to be live with other people, even in a Zoom chat, everything’s still online in all my programs at the moment, it is this feeling of live connection that we’re sitting together, we’re sitting in the discomfort, we’re sitting in the uncertainty. We’re sitting in that not being sure what parts of your illness are solvable, which parts of them are perpetual. How much energy should I spend trying to fix my health issues, reduce my pain, reduce my fatigue, versus how much mental energy should I spend adapting to this and saying this, maybe this is as good as it gets? 

Dealing with the ambiguity of that and the uncertainty and knowing that it’s not like you’re missing something obvious. It’s just, it’s hard because it’s hard has been really wonderful. And I would just add a lot of people really just enjoy making friends with others who have that set shared experience. And so it’s not just about talking about our illnesses in the room to thrive support groups, it’s also about connecting

About the books that we love, what we wanted to be when we grew up as kids, shared experiences where we want to travel the world. Remembering who you are and what you value and what’s important to you outside of your condition is really important too.

 I also wanted to share with permission and email I got from Kathryn who took the program in the summer of 2023. I had a special additional group I did, and she said, “I just wanted to let you know I had a great rheumatology appointment today, and I credit you and your course for that. I have been actively managing this disease for three years now, and I was finally able to walk away from an appointment feeling like I got the most out of it. I don’t think I would’ve been able to have such a productive appointment if I had not been part of your program.

I felt prepared and I had enough foundation to know where, at least to start and somewhat how to prioritize and express my needs and concerns without boring you with all the details. Of course, it wouldn’t bore me. It was a win. I feel more confident with the direction of my plan of care. I feel empowered and I’m an actual part of my care team. So yay, I’m eternally grateful for you and your program.” 

So that was obviously just music to my ears and that’s exactly why I created it. I just don’t think people should be left on their own to try to navigate all of this. So the wait list is always open to join the next groups, but also the  Rheum to Thrive self-paced course is always open for you to take the prerecorded self-paced course at any time. All of the information was rerecorded and recorded again in March, 2023. So it’s up to date with the latest evidence. So that’s very exciting and I’m going to go back and now I’ll stop talking now from 2023. Go back to my little 2020 self to finish the episode. Thank you all so much for listening.

Back to the original episode:

Just to wrap things with a tidy bow, so I had the five things I wish I had known when I was diagnosed and then, again, these are of course the things that helped motivate me to structure my course the way I have towards really comprehensive. 

I wish a) I had known that it affects more than your joints; 2) I wish I knew it would affect my social life, but that there were things I could do but it would affect it in some challenging ways, and also some positive ways in terms of opening me to some — the Spoonie community, the online communities; 3) is that treatment plans and prognosis are a bit of a gray area and gray areas are just going to be the norm, and I have to kind of get used to ambiguity, and things that aren’t black and white, which has been hard, but really important; and then 4) is that, you know, it can affect or it will affect most likely your mental health, but you will learn through therapy and through other strategies how to accept your current state, and how to be in the present moment rather than only just focusing on the future, you know, what could go wrong; and then 5) is that managing it is a job, but you can learn how to do this job. There are ways to do it that are just like any job, there are ways that are more efficient and less efficient, and there are ways that are more painful or less painful. 

So, I hope you’ve enjoyed this. It was fun to just share a little bit more about my journey and my story. I do have a 20-minute-long video on YouTube and Instagram TV of my like, specifically the diagnosis journey, and a little fun — I’ll put that in the show notes — but a tidbit about that is that it includes videos of Teddy when he was a tiny puppy because I filmed it in like July 2019. So, I might maybe turn that into a podcast episode at some point too, but this was kind of like little pieces of my personal story sprinkled through my ‘Things I wish I had known’ so, thanks again, don’t forget to join the free Facebook group, Arthritis LIFE Podcast, Practical Tips, and Positive, Realistic Support, the longest Facebook name you could possibly have. Okay, thanks so much and bye-bye for now!