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Patient Stories, Podcast

Rheumer Has it: Arthritis Myths, Stigmas, and Misconceptions

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Summary:

If you’ve ever been told you’re “too young to have arthritis,” this episode is for you! Co-hosts Cheryl & Eileen, both of whom live with rheumatoid arthritis, discuss myths, stigmas, and misconceptions related to rheumatic diseases. They clarify the differences between these terms and provide examples, such as the myth that only elderly people get arthritis, the stigma that people with arthritis are lazy, and the misconception that arthritis is merely mild joint pain. 

Eileen and Cheryl also emphasize the importance of education and self-advocacy and share personal experiences to illustrate how these misunderstandings can affect mental health. They also highlight resources for further learning and empowerment so you can help bust these myths and bring awareness to the true impact of rheumatic diseases. 

Episode at a glance:

  • Defining Myths, Stigmas, and Misconceptions: Cheryl and Eileen define the myths, stigmas, and misconceptions related to rheumatic diseases.
  • Personal Experiences with Misconceptions: Cheryl and Eileen delve into their personal experiences with misconceptions of rheumatic diseases. 
  • Addressing Stigmas: Cheryl and Eileen address stigmas often associated with rheumatic diseases.
  • Common Myths About Rheumatic Diseases: Cheryl and Eileen discuss the common myths about rheumatic diseases.
  • Impact on Mental Health: Cheryl and Eileen discuss how this topic affects mental health.
  • Final Thoughts and Resources: Cheryl and Eileen highlight resources to help bust myths and bring awareness to rheumatic diseases.

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Eileen Davidson

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over 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:

[00:00:05] Eileen Davidson: Welcome to Rheumer Has It, the podcast that bust myths, highlights evidence, and inspires hope for living better with rheumatic disease. 

[00:00:14] Cheryl Crow: Through plain language interviews with experts and reflections from our patient advocacy experiences, we offer actionable knowledge so that you can thrive today. 

[00:00:23] Eileen Davidson: My name is Eileen and I live with Rheumatoid Arthritis.

[00:00:27] Cheryl Crow: My name is Cheryl and I also live with Rheumatoid Arthritis. 

[00:00:30] Eileen Davidson: Join us as we bust myths. 

[00:00:33] Cheryl Crow: And spotlight evidence.

[00:00:35] Eileen Davidson: Now, in this episode, we are going to go over why myths, stigmas, misconceptions matter. But first we’re going to break down the differences to better understand them. Cheryl, take it away. 

[00:00:46] Cheryl Crow: Alright. We’re gonna define the three terms: myths, stigmas, and misconceptions.

[00:00:52] And these do overlap a bit, but myths are generally defined as false beliefs that are accepted as truth. For example, a common myth for arthritis is that arthritis only affects older people or elderly adults, but in reality, autoimmune forms of arthritis, like rheumatoid arthritis, as we know, can also affect young adults and even children in the form of juvenile idiopathic arthritis.

[00:01:16] Eileen Davidson: Absolutely. I was diagnosed at 29, but my symptoms started around 23. I’ve also met many people diagnosed when they were just toddlers. Rheumatic diseases really do not care about age. 

[00:01:28] Cheryl Crow: A hundred percent. And if you’re wondering what is the actual definition of stigmas? Stigmas are societal judgements that lead to discrimination.

[00:01:39] So a common stigma unfortunately for people with arthritis is that people with arthritis are just lazy. Now, this is a really harmful stereotype that ignores the real pain and fatigue caused by rheumatic disease. 

[00:01:54] Eileen Davidson: I used to have a lot of self-blame because I struggled to do daily tasks that healthy people can do easily.

[00:01:59] One of the biggest lessons I learned when diagnosed with RA was how debilitating chronic fatigue is. 

[00:02:07] Cheryl Crow: I totally agree with you. And the last term to define before we get into more examples is misconceptions. So these are simply misinformed ideas based on erroneous or wrong assumptions.

[00:02:20] So for example a common misconception is that arthritis is always just mild joint pain. Now, of course, some people may have mild pain from arthritis, but in reality conditions like rheumatoid arthritis and lupus and psoriatic arthritis can cause severe systemic pain and also issues with your tissues. I like to say, got issues with your tissues in other areas of the body, including the lungs and heart.

[00:02:46] In fact, that’s why, if uncontrolled, rheumatoid arthritis is associated with a reduction in lifespan, because of these systemic effects. 

[00:02:54] Eileen Davidson: Autoimmune conditions cause inflammation, not just wear and tear. Joint pain is serious, even if it is just osteoarthritis, which isn’t an autoimmune disease, but a rheumatic disease.

[00:03:06] Arthritis is often linked to increased risk of heart disease, diabetes, and even certain cancers often appearing before these conditions due to the inflammation from the conditions. 

[00:03:16] Cheryl Crow: Yeah, that’s such important information to remember.

[00:03:20] Eileen Davidson: We are going to share a little bit about our own personal experiences with myths, stigmas and misconceptions and why they have been harmful in our journey with rheumatic disease.

[00:03:30] First, we’re gonna go over misconceptions. Now, Cheryl, what is a misconception you believed before your diagnosis? 

[00:03:38] Cheryl Crow: A misconception I believed, I have to say, even after my diagnosis was I thought rheumatoid arthritis only affected my joints. I didn’t know that my symptoms like dry eyes and fatigue were related to rheumatoid arthritis at all, in fact, until I was studying for my master’s in occupational therapy seven years after my original diagnosis. So I think it’s really important that people who are newly diagnosed understand that rheumatoid arthritis is, like you mentioned earlier, a systemic whole body disease.

[00:04:11] What about you? What are some, what’s a misconception that maybe you believed before your diagnosis of rheumatoid arthritis? 

[00:04:18] Eileen Davidson: Very similar to you, and I just wanna clarify, we’re talking about rheumatoid arthritis, but rheumatoid arthritis is one of the most common forms of rheumatic disease. However, the symptoms like pain, fatigue, cognitive dysfunction, malaise, skin issues, all these sorts of symptoms that come with autoimmune forms of arthritis overlap with other conditions.

[00:04:40] So if you live with lupus, psoriatic arthritis, Sjogren’s disease, we’re talking for you too because we are, we’re Rheum Mates. Really? 

[00:04:50] Cheryl Crow: Yes. We’re rheum-mates 

[00:04:51] with R-H-E-U-M. I love that. Yeah. 

[00:04:53] Yeah.

[00:04:54] Eileen Davidson: So rheumatic disease mates, not just rheumatoid arthritis.

[00:04:57] Yeah. But we’re talking a little bit about our own personal experiences having been diagnosed both with rheumatoid arthritis.

[00:05:03] But going back to the question of, very much similar to you. I really honestly never imagined arthritis was an autoimmune disease and was something so serious and something that could affect someone my age.

[00:05:18] When I first received my diagnosis, I was actually in a lot of disbelief. I. I had my rheumatologist run test after test after test, bone scan, MRI, ultrasound x-rays, all these things. Do a test for this disease, do a test for MS because I was so confused that arthritis had symptoms beyond just joint pain.

[00:05:40] I didn’t understand why I was feeling so tired, why I felt like I had the flu all the time, why I was catching colds and the, I had a hard time brushing them off. Also like people around me really didn’t understand that. They were like, it’s just arthritis. And in reality, arthritis is a very serious condition and I think there’s a lot of stigma around arthritis.

[00:06:04] And I don’t think rheumatoid arthritis needs the name needs be changed. I think that people need to be educated on what arthritis really is. 

[00:06:13] Cheryl Crow: And I’ll put a link to the show notes because I think it is confusing for people to, to visualize the overlaps between the diseases of, you know, lupus, which can involve joint pain and you know, osteoarthritis, rheumatoid arthritis, axial spondyloarthritis.

[00:06:30] I’ve created a couple charts that were informed by other charts out there . I think it can help to see all the conditions side by side and see, oh yeah, these are the ones that are grouped together ’cause they’re autoimmune or autoinflammatory.

[00:06:41] Back to the misconceptions thing, I think there is a really healthy debate in the patient community of should we rename rheumatoid arthritis to rheumatoid disease? And that’s a whole other, that could be other, other episode.

[00:06:52] Eileen Davidson: Yeah. That’s a good idea and I want to just plug in another resource, my wonderful work the International Foundation of Autoimmune and Autoinflammatory Arthritis, which we cover 22 different autoimmune and autoinflammatory forms of arthritis that have overlapping conditions, but different symptoms that kind of make them more unique.

[00:07:14] So, another resource for kind of seeing the different symptoms and types of autoimmune of arthritis is AI Arthritis. 

[00:07:23] Cheryl Crow: Yeah, I love it. We’ll definitely put the link to that in the show notes. Is, you know, the next thing we wanna talk about was stigmas. So not just misconceptions and misunderstanding, but outright kind of prejudices people have based on inaccurate information.

[00:07:36] So I’m curious for you, Eileen, what are, do you have any examples of stigmas you experienced after your diagnosis? 

[00:07:44] Eileen Davidson: Oh, absolutely. And I think a lot of people are gonna relate to the, “but you don’t look sick” after we reveal our diagnosis to either people who are close to us or just random strangers. We always hear, oh, but you look so well, you don’t look sick.

[00:08:00] Or if we’re trying to get outta work ’cause we’re not feeling well, boss might say it, well, you look fine or you did this yesterday. So things like that were quite irritating to hear it first because I certainly felt sick and I personally felt I did look, look sick if you looked close enough.

[00:08:21] Invisible illnesses are often debilitating even when somebody appears fine. If you take a closer look, you’ll see how like they’re truly not invisible, and that’s because my condition affects every aspect of my life.

[00:08:34] How about you, Cheryl? What common stigma have you experienced?

[00:08:38] Cheryl Crow: I think the biggest one for me, I, I will just – to put this one in context, I’ll first say that I was extremely athletic and very healthy when it came, comes to exercise and overall lifestyle.

[00:08:51] You know, I was really health conscious. I didn’t do any drugs. I, you know, I saw my body as like a machine and I was, every single day I ran and or, and or lifted weights and or played soccer. And some days I did multiples of those things.

[00:09:04] So. I think the stigma that, that really bothered me as somebody who was 21 years old and got hit with this diagnosis kind of outta nowhere, is – the, the incorrect belief is that I must have done something wrong with my lifestyle to get this. That it must have been under my control, that if I had just exercised more, that I have just eaten better, then it wouldn’t have happened.

[00:09:28] And I, I feel defensive about that because I feel like literally how much more healthy could I have been? I not only was healthy in my lifestyle, I had a extremely un traumatic childhood. My ACEs score is probably no zero ACEs adverse childhood events.

[00:09:46] So. What I think is interesting is that this reveals a deeper, a deeper psychological phenomenon, which is that when someone is sick or hurt, we wanna believe there was a reason why that happened. Because if there’s a reason, A, and then B, if it’s, if that reason means that it was preventable, then me as the outsider looking in can just, if I did the right things, then I could avoid that. When in reality, babies get cancer, right?

[00:10:14] Babies get rheumatoid art or juvenile idiopathic arthritis, babies get lupus. That when they’ve literally in their entire life only ever had breast milk, like I cannot. The, the, the, the stigma that people who have chronic health conditions did something wrong in their lifestyle to cause it is one that really to this day, you can kind of see me getting- it riles me up to this day and I’m trying to turn my annoyance with this stigma into like, a productive solution by just educating people.

[00:10:41] At the end of the day, just because maybe there are lifestyle variables that can help with your symptoms, like having, you know, a healthy diet or eating a Mediterranean based whole foods based, plant-based eating pattern and, strength training like I do and exercising, those are all really helpful things. But just because those help you with symptoms doesn’t mean that the lack of doing those cost you to get your condition. Do you feel also like defensive along with me? 

[00:11:06] Eileen Davidson: Yeah, I, I’ve made a meme about that before actually.

[00:11:10] Just because I exercise doesn’t mean I am not disabled. I actually exercise to function better with my disability and what I would just wanna note. That a lot of women ’cause autoimmune diseases affect or are affected 80% by women. 

[00:11:28] Mm-hmm. 

[00:11:28] So they’re finding like diseases like rheumatoid arthritis in particular triggers either the onset of a disease or progression of a disease after women have a baby.

[00:11:42] And that was the case with me. 

[00:11:44] Cheryl Crow: Mm. I forgot about that. 

[00:11:45] Eileen Davidson: Am I gonna blame myself because I had a child that my disease became more active? Like, no, we gotta stop blaming ourselves and thinking, why did this happen to me? We have to move on, is what I like to think. 

[00:11:58] Cheryl Crow: It, it’s not only a form of ableism to think that if you just did the right thing, you’ll never get sick. It’s also, there’s actually another, a term I just learned about called Healthism, which is like this idea that, that if people have a health condition, they must not have had healthy behaviors.

[00:12:13] I think that it’s just really important to recognize like so many of you, it, the thing is the reason this is important, not only for the outside people that might judge us, but it’s important for the people with the condition, because if you believe that if you just did the right lifestyle factor, you would heal or cure your RA, you are going to be set up for failure.

[00:12:32] Yes, there are some people who are able to go into remission alongside doing some lifestyle factors, a drug-free remission, it’s not common, but it does happen occasionally, but that’s not the norm. The majority of people with rheumatoid arthritis require medication to sustain a remission. That’s just literally scientific fact. And there’s nothing wrong with that. And if people have that prejudice and that stigma against themselves for taking medicine, it’s gonna cause them to delay treatment and have potentially serious consequences like to, in terms of irreversible joint damage.

[00:13:03] So anyway, that’s my spiel. That’s my spiel on that. 

[00:13:05] Eileen Davidson: That’s, that is an important spiel for people to hear, regardless if they have a diagnosis or they are supporting someone, or just interested in learning more about rheumatic diseases. Now, we’ve touched a little bit on myths. Mm-hmm. We need to go over those.

[00:13:22] What’s a myth? Others think about rheumatic diseases that you find you run into quite often. 

[00:13:28] Cheryl Crow: Yeah, it still happens to me. I’m 43 now and I got diagnosed at 21. And that you’re so young, how can you have arthritis? So, and, and I think this is really important because the myth that doesn’t happen to younger people leads to diagnostic delays.

[00:13:45] People in the emergency rooms, urgent cares, primary care office also often believe that -they’ll often say that joint pain in a growing person, a teen or a child, is just from growing pains. And so that’s a huge problem.

[00:13:58] The second one, is that if you just did some natural method, you’d be able to, heal or cure your RA. And that’s dangerous ’cause it causes people to not take evidence-based medications that are actually much more likely statistically to put them into remission.

[00:14:14] What, what do you think, what’s a myth that’s important for you to correct? 

[00:14:18] Eileen Davidson: I’m gonna go back to when I was in elementary school and think about the myth that I learned about arthritis. The very first myth, and that is if you crack your knuckles, you’re gonna end up with arthritis.

[00:14:33] And how that shaped my perspective. Of arthritis at young age and for so long until I was diagnosed with it myself. And I remember every time like a joint would crack or something, I’d be like, oh, I’m gonna get arthritis there. Well, yes, I’m, but it wasn’t because my joint was cracking, it was because I had an autoimmune disease.

[00:14:56] Cheryl Crow: Yeah. Yeah, I know that’s one of my, one of my favorite little jokes is when someone asked if I’m wearing my compression gloves and someone’s, or a splint, and someone says, oh, what happened to your hand? And I say, my immune system. They’re like, what? And I’m like, it’s my immune system. It’s creating antibodies to the synovial lining of my joint.

[00:15:13] So, you know, I think we’ve already talked a little bit about why it’s so important for us to personally and professionally for me to correct these myths and misconceptions and stigmas.

[00:15:25] But I also think it’s important to address how these might affect our mental health as as patients on a deep level. So what are some ways that these misconceptions and myths and stigmas affected your mental health? 

[00:15:40] Eileen Davidson: Well, at first, all the misconceptions, all the stigmas, and all the myths I heard left me feeling confused, lost, and even questioning whether my symptoms were real.

[00:15:50] I found many people in my close-knit circle were, would question my illness because of the issues surrounding rheumatic diseases, awareness in general, and because my disease is invisible. I also firmly believed that as a woman, some people just didn’t want to believe me. I was being dramatic and attention seeking.

[00:16:10] I didn’t really know how to really voice what I was going through. This was really difficult when I was in the grief process of my, my initial diagnosis. But as I learned more about my condition, I gained confidence to advocate for myself and educate others who were, I like the wrong ideas around rheumatic diseases.

[00:16:29] So, what about you? How about you? Did this affect your mental health at all? 

[00:16:34] Cheryl Crow: When I’m really reflecting this question on a deeper level, I think it, honestly, I think that I’ve had to re establish a relationship to optimism in my life.

[00:16:44] And that might sound like, huh? What does optimism have to do with this? Well, as, a kid, a I was a kid according to my parents, that was kind of like a happy go lucky, optimistic child. And, and, and so there’s even a book called The Optimistic Child and I was like, yeah, that kind of sounds like me.

[00:16:57] But I think that there’s something really- there is a line between optimism and delusion that, that I had to confront. .

[00:17:07] So if your optimism is in the form that if I just try hard enough, I’m gonna be able to control my health. That’s what worked for me in the past, right? Prior to 21, I ran every day, I ran, I tried my hardest, and if you keep training, you get a little bit faster. You get a little bit faster each time.

[00:17:24] Okay? So you know the, that would work in the context of soccer or track and field, which I also ran, but it did not work for rheumatoid arthritis.

[00:17:34] . It’s fundamentally like I have these two different parts of my personality. There’s the optimism and the realism. One of my friends once asked, asked me this really interesting question, which is like, would you rather be right, or would you rather be happy? And it’s like, that’s a really hard question for me to answer.

[00:17:48] But honestly, when it comes to being a patient educator, an advocate, I’d rather be right? And being right, it means sometimes you’re making people in your life less happy. Like, I wish that I could tell everyone in my support groups or in my Rheum to THRIVE program that you just follow my three step plan and you’re never gonna have pain or fatigue again. But that is not, that would make you happy, but that’s not real, that’s not true, right?

[00:18:11] So how do I individually as Cheryl Crow the patient and the person in, in my context of my life, but also as a patient educator and an advocate, how do I reconcile wanting to say to people, look, there is a zone of control that you are going to have.

[00:18:25] Like I can control, like the fact that I exercised today, I did my strength training. I can control the foods I put in my body. I can control the medicines I put in my body. There is a point where like I have to accept, which is the hardest word accept that there are things out of my control.

[00:18:43] I can’t control whether my body is going to have a flare sometimes. And, I can’t control the fundamental uncertainty about my future. And so I’ve kind of had to reconcile who like I, I am as a a person.

[00:18:57] I used to wanna be that patient that just, , I see it every day. Oh, she has arthritis, but she doesn’t let it hold her back, she conquered arthritis, right? And it’s like I, the optimism in me wants to say that, but the realism is like, it’s not a conquering like full stop. It’s an everyday effort to thrive with this condition.

[00:19:15] So, sorry, I just went in like 900 different directions, but does that make sense?

[00:19:19] Eileen Davidson: Well, honestly, these diseases is like, they, like I said, they impact every aspect of our life. So you can go nine, 900 different. Yeah, that’s true. Yeah. But in the interest of time, and yes, we are finished our three themes of the episode.

[00:19:39] We are going to now summarize in 15 words or less, what is one thing you wish more people understood about rheumatic diseases?

[00:19:49] And for myself, it is how serious arthritis is and the prolonged impact it has on someone’s life. How about you, Cheryl? 

[00:19:57] Cheryl Crow: Similar to what you just said, but I would say that, you know, it’s not just joint pain, it affects all areas of, of your life. So very similar to what you said.

[00:20:06] Every episode, we want to try to leave you with some real specific resources for education and advocacy. So, Eileen, I’ll put it in your court. What are some resources you have for people who might want to become more empowered to understand these myths and stigmas and misconceptions and maybe correct them in their own worlds?

[00:20:28] Eileen Davidson: Well, I always believe that diving into research is going to give you a lot of answers and prove that the arthritis is serious. So being that I have been on the Arthritis Research Canada Patient Advisory Board for the past seven years, I can personally say that you will learn a ton from them. So please put that in the link.

[00:20:51] And then also if you wanna learn from patients, there is the international foundation, autoimmune and autoinflammatory arthritis, as well as creaky joints. 

[00:21:02] Cheryl Crow: Yeah, and similar, I was gonna say Creaky Joints too. And also the Arthritis Foundation has a lot of really helpful fact sheets. You know, I. Used those in the American College of Rheumatology fact sheets about different or about different conditions to help.

[00:21:16] Eileen Davidson: Yeah. And you can educate yourself because when I was diagnosed 10 years ago, I knew nothing about rheumatoid arthritis, and now I’m considered a patient leader.

[00:21:26] So really, if you just take the time, you can learn too. 

[00:21:32] Cheryl Crow: A hundred percent. So, we wanna make sure you remember that you can listen to new episodes of this podcast on the Arthritis Life podcast. This is like a kind of a, it’s a podcast within Arthritis Life network, so to speak.

[00:21:50] And you know, you can follow Eileen and I both on social media with the links at the bottom of the show notes, which you can also find in each of our each of our show notes on our websites. And if you have any topic suggestions, we encourage you to reach out through the, the dms on social media or through the contact forms on our websites. Anything else you would wanna add? Eileen? 

[00:22:14] Eileen Davidson: Just saying thank you for enjoying us for episode number two. We have so much planned for you, so tune in next time.

[00:22:23] Cheryl Crow: Yay. Thanks so much again for your time. Talk to you later. [00:22:27]

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