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Podcast, Rheumer Has It

Rheumer Has It: 6 types of Unsolicited Advice and How We Respond

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Summary:

Have you ever struggled to respond to unsolicited advice or comments about your rheumatic disease? On this episode of ‘Rheumer Has It,’ hosts Eileen and Cheryl tackle the pervasive issue of unsolicited advice that patients with rheumatic diseases often receive.They discuss the overwhelming nature of such advice and its potential negative impacts, particularly on newly diagnosed individuals. 

Eileen and Cheryl break down six types of unsolicited advice, including lifestyle interventions, toxic positivity, unqualified medical advice, predatory marketing, wild suggestions, and even well-meaning but unsolicited solid advice. 

They share their personal experiences and offer practical strategies for responding to these unsolicited suggestions, emphasizing the importance of evidence-based treatments and individualized care. The episode aims to empower listeners to assert their boundaries and make informed decisions about their health.

Episode at a glance:

  • Introduction to Rheumer Has It
  • The Impact of Unsolicited Advice
  • Types of Unsolicited Advice
  • Responding to Unsolicited Advice
  • Conclusion and Takeaways

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 Bio

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.

Episode links:

Full Episode Transcript:

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

[00:00:07] Cheryl Crow: Through plain language interviews with experts, we offer actionable knowledge so that you can thrive today.

[00:00:13] Eileen Davidson: My name is Eileen,

[00:00:15] Cheryl Crow: And my name is Cheryl. Join us as we bust myths and spotlight evidence. 

[00:00:22] Eileen Davidson: So today’s topic is a very exciting one we’re talking about something that I think the majority of patients with a rheumatic disease have experienced at least once in their life, and that is unsolicited advice.

[00:00:37] And now unsolicited advice, while it often comes from a place of wanting to help, can also be quite bad for a patient, especially when they’re newly diagnosed. It can be really overwhelming and when I was first diagnosed, it seemed like I was getting all this advice thrown at me by [00:01:00] people and I didn’t know where to start. I didn’t know what to believe, and it was quite difficult and overwhelming to navigate it when you’re even just trying to accept your diagnosis. What about you, Cheryl? 

[00:01:15] Cheryl Crow: Yeah similarly , I have a complicated relationship with unsolicited advice ’cause I do think at times people are truly well intentioned.

[00:01:25] And honestly, if I look into to myself in my own past, I realize that I have a tendency to give people unsolicited advice, which I’ve reigned that in because of my negative experiences with unsolicited advice due to chronic illness. But I think that even though people’s intentions are good, you have to look at the consequence of your, of what you said and did not just the intention.

[00:01:46] A lot of times, just like you said, I think the biggest problem with unsolicited advice is that it can erode trust between the patient and the provider. Your doctor and your medical team is the [00:02:00] only ones that have the expertise to look at your full chart, your background, all the factors that they examine, go into their recommendations versus just a random friend or family member who, they may have good intentions, but their advice may be super off base.

[00:02:15] Also, like you said, you can just be very overwhelmed, especially when new, newly diagnosed and more information is not more helpful, it can just confuse you more. What else would you add to that, Eileen?

[00:02:29] Eileen Davidson: Yeah. I would add before they offer advice to ask us what we have already tried because a lot of the times when people ask me, try this or do this, how kind of thing like that, it’s stuff that I’ve already tried or looked into, especially since I’ve been living with this chronic illness for over a decade or even longer.

[00:02:52] So it’s like when I was first diagnosed, I was desperate bargaining stage of [00:03:00] the grief process. People were telling me, try dark cherry juice and all this stuff, and all these expensive things and I was so desperate to get relief from my RA and again, there’s so much medical misinformation out there.

[00:03:18] How do you know what is actually good advice, especially when newly diagnosed and then over the years, you try things, you try lots of weird things, expensive things. It gets a little frustrating when people say, oh, you should do whatever when I’ve already tried it and it didn’t work for me.

[00:03:35] Cheryl Crow: A hundred percent. A hundred percent agree. 

[00:03:39] Eileen Davidson: Yeah. Now, I was a bit vague on explaining some of the unsolicited advice we experience. That’s because today we’re going to be talking about six different kinds of unsolicited advice we’ve dealt with and why they are problematic. Cheryl, take it away.

[00:03:55] Cheryl Crow: I just wanted to say, after talking about the unsolicited advice that, we’re also gonna [00:04:00] give you some ideas for how to respond based on our own personal experiences, but also the experiences of others in the chronic illness community. You all have to watch the video this, ’cause Eileen just removed her cat from her left in a very what’s the word?

[00:04:15] It was a very, we did it without making noise, which I’m amazed by.

[00:04:21] Yeah so what’s the first type, Eileen, of unsolicited advice? 

[00:04:25] Eileen Davidson: Okay, so I think a lot of the people can agree who are listening to this can agree they have experienced lifestyle intervention advice. So that comes in many different things from diet yoga, supplements.

[00:04:39] My friend did X, Y, Z and she’s doing better now. So you should do that. Go on this diet that. The carnivore diet, for example, which is really bad for you in general and research shows that too much red meat is not good for people with autoimmune diseases. And then [00:05:00] supplements often they are just so expensive and have no scientific background behind them.

[00:05:07] Or maybe they actually cause more problems than they should. For example, I was taking magnesium pills somebody recommended and I was getting horrible stomach pains. There’s just a lot of advice when it comes to lifestyle interventions, and I think that has to do with the fact that people think it’s like something that we did to ourselves to have this.

[00:05:32] Cheryl Crow: Yes. Yes. And if you look back on episode 1 75 of the Arthritis Life Podcast, episode three of Rheumer has it, you can see a nice discussion we had with a rheumatologist about, the efficacy of medications and it’s not an either or. You can absolutely do lifestyle changes like nutrition, exercise, stress management, sleep management, alongside medications, but what I have found is that there is this [00:06:00] underlying current of a lot of lifestyle related unsolicited advice, which is this idea that you shouldn’t take medication and you should just do lifestyle or, and I’ve gotten outright comments like that on my content online.

[00:06:12] Why don’t you just try the a diet? Why don’t you just try this? And it’s like, I’m trying the thing that works the most, that’s the most evidence based, and that’s the medication alongside the lifestyle variables. But I’m not gonna replace them most likely with I’m not gonna replace my medication with lifestyle.

[00:06:30] And it, it can feel really like, it can put me at least in like a defensive position if people are constantly harping on like, you should do lifestyle, you should do lifestyle versus medication. And so that’s type number one, lifestyle related unsolicited advice.

[00:06:45] The second one is this phrase that I’ve come to understand better called toxic positivity or this unsolicited advice that is assuming that if you just had a different mindset or [00:07:00] outlook, then you wouldn’t have rheumatoid arthritis, which is obviously just untrue from a scientific standpoint.

[00:07:05] But you know, a lot of times people will say stuff like, oh, just stop stressing out and it’s true that stress is inflammatory, but that didn’t, doesn’t mean that the stress caused you to have the condition in the first place. Stress can contribute to flareups, but it, but having a flare up doesn’t mean that you failed to control it ’cause you, or failed to prevent it through failing to manage your stress.

[00:07:26] So people, it, this one’s a hard one for me ’cause I tend to pride myself in general, like on being like a positive, upbeat person. Like I try to be supportive to others, but I never wanna force people to just think positive ’cause that feels like it demeans their lived experience and their emotions. What are your thoughts on this?

[00:07:45] Eileen Davidson: Well this just brings me up to it a guy that I matched with on a dating app who told, he kind of shamed me because I had an. I didn’t have enough strive to pray my disease away, and I [00:08:00] just thought that was one of the most awkward and weirdest ways to respond to somebody telling you that they have a chronic illness.

[00:08:12] It just it made me laugh and it’s unfortunate that like this pops up in our life and we don’t always necessarily know who’s gonna say these kind of things or their beliefs. And I wish it was as easy as, praying or keeping you in your thoughts or that sort of thing being so positive all the time.

[00:08:35] That’s not the reality of living with a chronic illness. We should be allowed to feel the grief and the negative emotions that come with this because it has a major impact on our lives. And yes, we do have to have some positivity. I think there’s a good balance between this really sucks and [00:09:00] it’s okay.

[00:09:02] Cheryl Crow: Yeah, that makes sense.

[00:09:04] Eileen Davidson: Yeah. And then our next type of unsolicited advice that we get is medical advice and these ones can be extremely dangerous because they can sometimes be advice to go to a physician who isn’t qualified to treat our condition, or, things like, don’t take your medications, they just make you worse, go to a naturopath. Don’t trust western doctors. That kind of thing yet rheumatic diseases, especially living with rheumatoid arthritis, I have seen the devastating impact with my aunt and other people that I have met through my advocacy that have had their lives and their body devastated by this disease before the time of biologics.

[00:09:54] Research now is actually showing us that less people are using wheelchairs, less [00:10:00] joint replacements surgeries are happening, less hand deformities are happening because of the medications that we have. So it’s, it medical advice is very much between the person and their physician. It’s not gonna be the same for everyone.

[00:10:19] Cheryl, what are your thoughts on that? 

[00:10:22] Cheryl Crow: Yeah. Honestly I just agree with you. I think it’s really presumptuous of people as they give others medical advice when they, the themselves have no medical training. It’s just a bizarre phenomenon. So I just second, I second what you said, and it leads us into the fourth kind of unsolicited advice for, people with autoimmune disease, which is predatory and harmful advice.

[00:10:46] People giving medical advice is harmful, but it’s not necessarily predatory. When we say predatory, we mean people who are really gonna, they are gonna benefit greatly if you take their advice like financially usually. So the classic [00:11:00] one is that multi-level marketing supplement, right? Where they’re like doctors don’t want you to know this secret, or big pharma doesn’t want you to know this and you just need to take this supplement when really that person is going to financially benefit from you taking their supplements. So they have a huge conflict of interest to begin with. Unlike a physician, your doctor makes no much no more money if you take your medications versus you don’t take medications. There’s no such thing. It’s not considered, legal for doctors to have any kickbacks from pharma companies anymore.

[00:11:31] That used to happen. That’s a misnomer that it happens today though. So, you know, it’s I think that’s one of the worst things I see on social media is. People actively, you know, taking advantage of people who are feeling in pain and hopeless in the autoimmune community.

[00:11:46] What, what are your thoughts, Eileen? I know you have strong feelings. 

[00:11:49] Eileen Davidson: Yeah. I have seen people prey on people’s vulnerabilities, and it’s really sad that people will feed off of [00:12:00] somebody’s pain just for their own personal or financial gain. I do know as somebody who’s also very active on social media, it’s hard to escape it because there’s bots out there that will comment on every single post I make about try this weird herb remedy from.

[00:12:22] Doctors something, something, something in a country I’ve never been to. It is just everywhere. And I know people wanna make money and they wanna sell a product that will help people. But also there’s people who wanna sell junk. Just to make financial gain. I call them snake oil salesman.

[00:12:42] So do you. And so, yeah, it, it’s a hard to one to navigate, especially when they have really good marketing too with a lot of those MLMs.

[00:12:53] They promise things that don’t exist and then they’re all saying, Hey, you know, to. [00:13:00] To me, being a, a single mom placed on long-term disability. Yeah, it sounds really good. Be like, they’ll say you can work from home and help people and make lots of money and things like that. So it’s also not just we have that despeRAtion to make our disease better, but also that despeRAtion to survive when hundred percent these diseases land us on disability ’cause arthritis is a number one cause of disability worldwide.

[00:13:28] So if you really think about it, it can have some devastating effects, but sometimes advice is pretty wild or funny or you’re just kind of taken back. I’ve had some extremely wild advice before from people telling me that I should try coffee enemas, I should sit in RAdio caves In the Czech Republic, I’ve been told crystals will heal me.

[00:13:55] I’ve been told invermectin will, heal me. And [00:14:00] I’ve seen that one in so many of the social media groups now, people talking about how Ivermectin is, taking all of their symptoms away. And there’s tons of conspiRAcy theory inform, advice out there RAther than with evidence behind it. And I get it, people really want to think that they can find something that, doctors don’t want you to know about because it’s gonna take your chronic illness away.

[00:14:24] But the reality is it’s just cRAzy wild advice that sometimes can really make you giggle. How about you, Cheryl? 

[00:14:34] Cheryl Crow: Yeah I have gotten some of this in the past, particularly on different social media, platforms and it’s almost like easier for me to cope with the wild advice ’cause it’s so out of nowhere. And it’s so not evidence-based that like you said, it’s like you just have to say, okay, different strokes for different folks.

[00:14:52] But I don’t even respond most of the time ’cause it’s just, I don’t think we’re gonna find like a happy medium.

[00:14:57] And then the last form of [00:15:00] unsolicited advice we’re gonna talk about before we go to ways to Respond is solid advice, but we still didn’t ask for it. And this is for me, one of the hardest ones because you’re like, I agree with what you’re saying, but right now I’m at the point where maybe I didn’t, I’m not wanting to pursue a bunch of different ways of doing things. And we’re gonna talk a little more about ways to respond.

[00:15:21] But, I think it’s important to acknowledge like that advice is something that someone should ask you for. You shouldn’t just give it unsolicited necessarily. What do you think? 

[00:15:30] Eileen Davidson: Absolutely. I think people, they come from a place of kindness and good, and they wanna offer advice that helps us.

[00:15:37] But if, unless we’re asking for it, should we really get it? Or as well as why don’t they ask us first what we’ve already tried, so now we’re gonna move on to ways how to respond to. Unsolicited advice personally for myself, considering if you’re [00:16:00] watching me I am wearing a spoon that says no, or I’m wearing a spoon.

[00:16:04] I’m, I have brain fog Today. I am wearing a shirt that says, no spoons, only knives left. And that I created for all of the unsolicited advice that I get because sometimes it, it can set my temper off. Little acronym kiss, keep it simple and spicy. So thanks, but no thanks or there’s no evidence behind that.

[00:16:28] Just, things like that. What about you, Cheryl? 

[00:16:31] Cheryl Crow: Yeah, I I’m. Totally try. Okay. This is aspirational, to keep it short and sweet, because I really do think that when you start getting into these long conversations with people, especially if it’s like a conspiracy theory type person, you’re just not gonna, you’re never gonna reach consensus.

[00:16:49] So I try sometimes if I feel like this person is really not gonna meet me in the middle or see my point of view, just to say, okay, I’ll keep that in mind. Just keep it really short and sweet and vague. Or even [00:17:00] just say, oh, interesting. Then change the topic. That can be more helpful than trying to say, well, blah, blah, blah, blah, blah.

[00:17:06] You know, this is the why I’m doing it, and you need to listen to me. That doesn’t always work. So that’s short and sweet is my goal. I’m laughing at myself because I, it’s hard for me. I to be short and sweet. I like to talk a lot, so as you can tell, yeah. What’s the second kind of way of responding, 

[00:17:23] Eileen?

[00:17:25] Eileen Davidson: Well I have been around a lot of research as a patient partner in research, so I think honestly my favorite way to respond to unsolicited advice, especially wild unsolicited advice, is there’s no scientific evidence behind that. But thanks for thinking of me. And just keep it at that. If, obviously they’ll probably go on and try and tell you about some study or they found on YouTube, that kind of thing.

[00:17:51] But then at that point, you need to focus on how to end this conversation or change the subject like you said. What about you, Cheryl? . 

[00:17:58] Cheryl Crow: Yeah I agree with [00:18:00] that one. And I also try to say sometimes, like I try to invoke my medical team to remind them that I have experts behind me. So I’ll say thanks, I’ll bring that up to my doctor and see what they say to remind them that, this is, I’m not just gonna take your advice at face value.

[00:18:14] I might also refer to evidence-based guidelines. I’ll even say sometimes that’s really interesting. I know a lot of people think that there’s a diet that will reverse RA, but actually the evidence says blah and again, that can is a dangerous method sometimes because then you can just go down a rabbit hole with someone and then it’s futile, but that’s one thing I do sometimes. And then the third response is to appeal to their underlying emotion or intent.

[00:18:39] This is something that actually came up in my support group. One of the members recommended this, and I thought this was really, really smart to say, like, to understand that you say out loud, like, I understand that you are sharing this with me, this advice with me. ’cause you care about me and you wanna help, but right now I’m focusing on what the experts on my team have suggested, [00:19:00] and when I get a lot of unsolicited advice, it actually stresses me out. So I appreciate you understanding that I need to really focus on what my team has planned for me that can help people understand, oh yeah like I’m trying to help, but it’s actually not helping. What would you say to that approach, Eileen? Or what would you add? 

[00:19:17] Eileen Davidson: Yeah, and I would. 100% agree there and it is stressful. It is very stressful when they don’t take no for an answer so they can get really pushy. I’ve even gotten in an argument with somebody on a plane because they were sitting beside me and they were giving me advice to go to the Czech Republic to go to these, sit in these radium caves.

[00:19:43] I was kind of newly diagnosed and newly advocacy then, and I actually really had to lay down the law and. Trying to raise my voice to get her to leave me alone about not going to go sit in radium caves in a country that I can’t really afford to go tRAvel to in the first place. And [00:20:00] so it’s a good way to say is I’ve already explained why I’m not choosing the treatment plan.

[00:20:05] Uh uh, and I, you keep trying to convince me to change it, but at this point, I don’t see this conversation ever having a resolution. We are not going to see eye to eye on this. So we’d like to change the subject or stop talking. 

[00:20:20] Cheryl Crow: I love that. I’ve had to do that too, where you just say, this is conversation.

[00:20:25] We, we need to talk about something else. ’cause I don’t think we’re gonna get go anywhere. That, I guess that kind of goes to our next topic, which is the, or the last response, which is like the more spicy responses or the more like assertive ones, which can be helpful if the person really isn’t getting the point.

[00:20:41] What, what are some of the things that you’ve said on that topic?

[00:20:46] Eileen Davidson: There’s the PG 13 ways, and then there’s the rated R ways that I can’t say Yeah, but I’m done. Talking about this right now is absolutely my favorite or I don’t wanna hear [00:21:00] it.

[00:21:01] Cheryl Crow: I really, really struggle with this because I’m such a people pleaser sometimes, but I really I I think you do have to stand up for yourself sometimes ’cause it really is rude and presumptuous when people keep trying to harp on something. When you’ve said, you know that I am confident with my treatment plan. I, and so you can just say, I’d RAther talk about something else right now as well.

[00:21:23] So, yeah, I think it went by so fast, but it’s already time to start wrapping it up in one sentence. Eileen, what would be the most important takeaway you’d like someone to take from this episode? 

[00:21:36] Eileen Davidson: They do not have to take all the advice thrown at them, and they can make their own personal choices. And it is so important to look up the actual evidence behind some of the people’s claims. How about you, Cheryl? 

[00:21:53] Cheryl Crow: Yeah, really similar, I would say. Yeah, you, it’s okay to make up, you have the right to make up your own mind, and it’s okay [00:22:00] not to go down every single rabbit hole that people might want you to go down.

[00:22:06] I still, to this day, 23 years after being diagnosed with RA or 22 years I do sometimes find it hard to balance the being open-minded with being a skeptic and being evidence-based, and so know that also that. It. It’s okay to not feel a hundred percent like certain about your treatment plan, but you can say, I’m doing the best.

[00:22:26] I’m sorry. This is way more than one sentence. Do the best with the information you have, and don’t drive yourself nuts by going down every rabbit hole. That’s my one sentence. 

[00:22:34] Eileen Davidson: Mm-hmm. It is a topic that we can probably go on a lot about because there’s many different advice, many different ways. To respond to it and many different ways that it affects us as a patient living with a chronic illness.

[00:22:50] In that case, we would like to thank you so much for listening to another episode of Rheumer Has It. 

[00:22:56] Cheryl Crow: Thank you so much, and if you’re enjoying the podcast, please show us some [00:23:00] love by rating it on your favorite podcast app or drop a like or comment on the YouTube video for each episode. Your support helps us reach more people.

[00:23:08] So thanks so much for tuning in, and we’ll see you next time. Bye-bye for now.

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