The Art of Reframing: Cheryl Koehn on Learning to Love Herself & Life with Rheumatoid Arthritis 

Summary:

Cheryl Koehn tells her story of going from athletic and active, to having over 30 swollen joints and getting diagnosed with rheumatoid arthritis. She shares how her journey over three decades led her to become a patient advocate and form Arthritis Consumer Experts.

Cheryl C. and Cheryl K. share key tools for thriving with arthritis, like finding ways to ask for help, developing health literacy, practicing self-compassion, and getting support. They also discuss the safety of modern medicine and how to balance it with complementary therapies to create an individualized plan for managing rheumatoid arthritis. 

 Additionally, they delve into the mental health techniques that have helped them cope, including: reframing exercises, and working past bias. Cheryl K. shared how she used her experiences to form Arthritis Consumer Experts, a patient-led and science-based organization with the goal of providing better education to people with arthritis.

Video of conversation

Episode at a glance:

• Navigating chronic illness when the internet was just starting: Cheryl Koehn had an athletic background, but when symptoms struck she went to the library to do her own research and advocated for herself despite medical gaslighting.
• Trialing treatment options: Cheryl K. initially denied Western Medicine before she ended up with 36 active swollen joints within a year and progressively worsening quality of life. Following this, she received gold injections and other conventional DMARDs initially, adding in Methotrexate and later transitioning to newer medications like biologics as they became available.
• Coping with peer pressure: People trying to convince her that “natural is better” and to avoid medications, however natural isn’t inherently better at controlling disease and newer medications are backed by research. Cheryl C. and Cheryl K. discuss how a balance of complementary therapies and medication help people safely manage their conditions. Koen practices reframing exercises, works on explicit and implicit bias, and considers “what can I learn from this person today” with an open mind.
• Wisdom for newly diagnosed patients: Find ways to ask for help! Develop health literacy as a tool for advocating for yourself and to guide decision making.
• What does it mean to thrive with rheumatic disease: Practice self-love and self-compassion, love what you do, and give yourself room to breathe.
• Arthritis Consumer Experts (ACE): Cheryl K. used her experiences of running her own consulting firm, volunteering, and being on the board at the Arthritis Society to form this organization. Her goal is to provide better education to people with arthritis, and to not be the only person with arthritis with a say in arthritis organizations.

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 Bios:

Cheryl Koehn 

I think of myself as a positive, fun, fun-loving person who works hard every day to help my fellow humans with arthritis. I’ve been living with rheumatoid arthritis now for almost 33 years, and while it has been, and is, my constant companion, it has never defined who I am, or who I think I am. I love life, even with rheumatoid arthritis.

Cheryl Crow

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

Episode links:

• Links to things mentioned in episode or additional listening
  • Arthritis Consumer Experts (ACE) website 
  • Arthritis Society Canada (nonprofit)
  • Movie: Stutz with Jonah Hill about his experience with therapy 
• Cheryl Koehn and Arthritis Consumer Experts links
  • Twitter: @CherylKoehn 
  • IG: @jointhealth
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

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

Cheryl Crow:  

I’m so excited today to have a meeting of the Cheryl’s! I have Cheryl Koehn here from Arthritis Consumer Experts in Canada. Welcome!

Cheryl Koehn:  

Thank you so much, Cheryl. It’s a pleasure to be with my namesake.

Cheryl Crow:  

Yeah. And we’re both even spelled the same way. 

Cheryl Koehn:

Exactly. Exactly. 

Cheryl Crow:

Yeah. And can we just start by giving the audience a quick introduction to you, like where do you live? And what is your relationship to arthritis?

Cheryl Koehn:  

You bet. So, I live in Vancouver, British Columbia, Canada. So, not far from you, Ms. Crow. And my relationship with arthritis is that I have it. I’ve had rheumatoid arthritis now for 33 years. I consider myself and call myself a survivor. Because I think eventually that’s what you do over your life with rheumatoid arthritis. But yeah, that’s where I’m situated and who I hang out with in my days, rheumatoid arthritis.

Cheryl Crow:  

Yeah, yeah. It’s funny, because I used to try to separate my arthritis from the rest of my professional life. And then, I joke that once I decided to not separate them anymore, I went all in and I literally started a, you know, organization called Arthritis Life.

Cheryl Koehn:  

Yeah. Well, you know, our histories are very parallel. We share more than just our name, to be  sure.

Cheryl Crow:  

Yeah. But you’re 13 years ahead of me in terms of the having arthritis. I’ve had it for 20 years now. But yeah, I’m really curious, especially like, you have lived through a time period with rheumatoid arthritis that has seen so many changes in the available treatments. Like, whatever you feel comfortable sharing, I would love to hear your treatments.

Cheryl Koehn:  

For sure, for sure. So, I think that’s a really good point, especially for your audience, that when you meet people in our community, Cheryl, we all come from different walks of life, different social situations, different cultural contexts and racial contexts. And for me, when I was first diagnosed 33 years ago — I am so embarrassed to say this — the Internet was just getting going. So, you know, what happens to patients today is very foreign to me when I was diagnosed. To get information, you couldn’t just sit down at your laptop or your personal digital device and go Google something. You actually had to get on the bus, get on the sidewalk, get in your car and try to go to libraries and find information. And you might, in a text that you found, see one line about rheumatoid arthritis in the general topic of arthritis. So, that was how I first encountered the disease and tried to learn about my disease. And you’re right, the treatment spectrum has completely changed. I first started on gold. Well, the first year, I denied treatment. I tried to cure myself with every known crazy thing on the planet. And obviously, I failed miserably. And at the end of my first year, I literally was wheelchair bound. I had very aggressive onset disease; I had sort of 36 active and swollen joints in 30 days. Like, literally, I was hit by a train called rheumatoid arthritis. And then after that year, I just sat down with — my rheumatologist at the time, bless her heart, never gave up on me. She just kept seeing me every month and saying, “Cheryl, there are options.” Not many, mind you. And she was a big believer in gold. So, I started on gold.

Cheryl Crow:  

And can you explain, how was gold delivered to your body?

Cheryl Koehn:  

Yes! Delivered in a big needle. Gold was actually — and it’s truly, it’s gold salts. And so, and there are still some practitioners particularly in in Europe that still use it. Very slow onset though. So, by the time it actually gets to its full efficacy, Cheryl, you’re done. Like, your joints are already burned, sort of burned up. It’s delivered by a needle. You draw it up yourself. The needle is not like these small gauge needles of today. They’re big fat needles. And to try to — and you had to inject the gold salts suspended usually an oil, like an oil solution. And so, it was like a, kind of a — I don’t want to say gooey, but it was not very viscous as a material. And putting it in hurt. It took almost a minute to depress the syringe compared to today’s self-injectables, which takes no time at all. So, that’s where I started, Cheryl. Then they added methotrexate, and I got to the full dose of that. And so, my first 10 years were with the traditional, conventional, synthetic DMARD’s. And I went through them all — hydroxychloroquine, sulfasalazine, methotrexate in combination, gold, NSAID’s. You name it, I was on them. All of them all at once sometimes. And then, of course, we began to see the arrival of biologics, and that changed people like us; changed people’s lives, including my own. So, today, 33 years later, flashforward, I’ve been on a biologic now for almost 20 years in combination with methotrexate. I’ve been on two different biologics, both self-injectables. Oh, no, one by IV and now one that’s self-injecting. And have had, you know, great, great success.

Cheryl Crow:  

Wow. I just think it’s so, so important for the people who are hesitant about medication to access as many stories as possible, particularly with people, from people like you who initially were against Western medicine. Like, I would love to explore that a little bit. Like, what — do you remember what was it? What was it that drove that decision to not — even though, I mean, gold wasn’t that great, but let’s just say that was the best treatment available, was gold and methotrexate. 

Cheryl Koehn:  

It was at the time. Yeah. 

Cheryl Crow:  

And methotrexate, you know, this 2019 article from the Annals of Internal Medicine or however you said that, you know, 50% of patients still actually do well on methotrexate monotherapy.

Cheryl Koehn:  

Yeah. Methotrexate is an incredible medication in our disease setting.

Cheryl Crow:  

I feel like people must think I’m getting a kickback from methotrexate because I talk about how well it works all the time.

Cheryl Koehn:  

I’m the same. I’m the same way, kiddo. I do a lot, probably like you, I talk to people like us every day. And I get sent a lot of patients from rheumatologists across Canada who are refusing to go on methotrexate or are afraid of it. And once I sit down with them and I tell them, “Well, I’ve been on it for 23 years.” It’s actually the most studied drug we have in rheumatoid arthritis. And in a lot of different autoimmune diseases. It’s the most studied drug because it’s the comparator drug in all of the clinical trials. So, we know the most about methotrexate. It’s the safest drug we have, actually, of them all when used in appropriate doses. And when you go and get your regular blood monitoring tests, you know, et cetera, et cetera. So, I’m a big fan as well. Neither of us are getting kickbacks, by the way.

Cheryl Crow:  

No, we are not, just for full disclosure. 

Cheryl Koehn:  

It’s a genericized drug and it’s cheap, and it’s just great.

Cheryl Crow:  

And so, when you think back to your mindset when you initially denied it, what was it that you   — were you scared of side effects? Or were you —? Yeah, tell us something about that.

Cheryl Koehn:  

No. It actually had nothing to do with the drugs, interestingly enough. Two things. Where I live, geography. The West Coast is a hotbed of alternative therapy. We know from research that use of alternative therapies on the West Coast is much higher than anywhere else across the country. So, that’s one. I live in a city where there’s a naturopathic clinic, or homoeopathic clinic, or natural pharmacy on almost every street corner, Cheryl. So, context is everything and geography can be very influential because that’s the societal view around how you get better. So, you know, I go to a cocktail party or to see my friends at their houses, and they’re saying, “Oh, you should try echinacea, you should try acupuncture.” So, that period — so that’s the other thing, factor number two: peer pressure. So, everyone around me in my group, my close friends, were into naturopathy. They felt that they were — well, you know what? I got nothing against that. But they didn’t have rheumatoid arthritis. They weren’t sitting in a wheelchair incapacitated by a horrific onset of inflammatory autoimmune arthritis. I was. So, I didn’t know. I didn’t have the health literacy at the time, Cheryl, to discern between the two, as obvious as it seems. It’s not obvious when you’re overwhelmed by a diagnosis.

Cheryl Crow:  

No. And I really, I mean, even though in my circles, I think, there was a lot of, you know, when I got diagnosed in 2003, you know, I had a lot of friends whose parents were doctors and stuff like that from where I grew up. And there’s still this societal message that I think a lot of people get that natural is better, “I want to do it naturally. I want to avoid, you know, unnecessary potential —”

Cheryl Koehn:  

How many times have you been in a conversation with your friends at a barbecue or out on, you know, taking a walk, and they ask you how you’re doing. You say, “Fine, I’m having some issues with this medication.” And they say to you, indignantly, “Oh, I won’t even take acetaminophen for my headache.” So, you’re absolutely right, society completely sends people with chronic disease messages that what we’re doing isn’t what everyone else is doing, do you know what I mean? So, then it just puts pressure on people.

Cheryl Crow:  

It really, and I think that’s — going on a little tangent — but, you know, the social, you said social context, which I love thinking about. And the social context now exists not just geographically but in your social media landscape, you know, what’s your community in social media? And the, I think my my biggest fear with the social media aspect of health management and patients connected to each other is when there’s these silos of echo chambers of, “Well, I did natural and it worked.” And again, you and I both understand the literature and the evidence. If the evidence was flipped, if it was 95% of people were able to manage their rheumatoid arthritis through natural methods and not pharmaceuticals and 5% weren’t, like if that changed tomorrow, I would advocate for it.

Cheryl Koehn:  

We’d be talking about it, that would be the central focus of this episode. Yeah.

Cheryl Crow:  

Yeah. But it’s not. It’s that the odds are not in your favor, and you’re always finding anecdotes. And it doesn’t mean that you — if that’s important to you, if that’s a personal or cultural value to try to avoid Western medicine, you have the right to make a decision, but it should be an informed decision. And I think that’s where it gets tricky.

Cheryl Koehn:  

Yeah, for sure, Cheryl. And I think people need to understand the distinct differences between alternative therapy approaches and complementary.

Cheryl Crow:  

Okay, so how do you define the differences?

Cheryl Koehn:  

So, alternative means you’re not, you’re going to put up a firewall between what is traditionally evidence-based medicine and this other approach you’re going to try. So, you’re going to forsake what is known in the evidence. You’re not going to follow that and you’re going to try something alternative. Whereas complementary is moving those two closer together and understanding what might be possible in the complementary world and how it works without the exclusion, right, of traditional evidence-based medicine. So, that’s where I as a person living with the disease and the organization that I work for, that’s where we land. How do we blend these, you know, more… I want to say natural approaches, because there’s lots of things that are natural. Exercise is natural. Thumbs up, let’s do it.

Cheryl Crow:

Meditation. 

Cheryl Koehn:

Meditation, mindfulness, sleep.

Cheryl Crow:  

Sleep, the forgotten lifestyle factor.

Cheryl Koehn:  

Those are the complementary therapies that we want, that have evidence, that we want to practice along with pharmacological science, right.

Cheryl Crow:  

Yes. And I love that you bring this up, because it just came up in an episode I haven’t published yet, but with Dr. Steffany Moonaz on the yoga, you know, Yoga with Arthritis expert. She made that distinction, too. And I have to, I’m admitting to anyone who listens to this podcast or follows me, I don’t think I’ve been very conscientious when I’ve — I think I’ve used those, that word ‘alternative’ sometimes to describe complementary methods accidentally, so I apologize if I’ve —

Cheryl Koehn:  

Oh, but I do think for the person is going out to consume the services, it’s a really important point. Because you spend money out of your own pocket for them, usually. And often, if you’re trying something and then you’re going to exclude something else, it’s likely because you can’t afford both. Well, if you can’t afford both, I’m going to suggest to you that you should spend your money on something proved, that’s my message.

Cheryl Crow:  

Yeah. And I, that’s again where context is everything. Like, I will tell, you know, I’ve said, look, if you have unlimited or a very large amount of time, money, and available resources — 

Cheryl Koehn:

Fill your boots. 

Cheryl Crow:

Why not? Yeah, take the meds, and do acupuncture, and do yoga, and massage, and go see a nutritionist, and a naturopath, and the supplements, and do everything if it as long as it’s like, you know, not proven to be harmful. But most people are not in that enviable position to have. I have seen in my work with pediatrics previously with developmental disabilities — this is not just unique to arthritis. This is as with every condition, whether we’re talking about, you know, autism, cerebral palsy, you know, anything like that, there’s those issues too. But I’m curious because you were talking about that you are in a position to kind of, I guess, maybe consult or coach newly diagnosed, like the doctors will send the newly diagnosed patients who are hesitant about medications to you. This is just a personal — this is such an interesting area for me, because I didn’t know how many people were hesitant about starting, again, Western medicine as a both and alongside complementary therapies, or hesitant from a standpoint of ‘I am at hell bent on not taking medication, I’m only going to pursue alternative’. But I think just from a health promotion standpoint, I find it really, you know, and it goes along with the vaccine hesitancy conversations that have been talked about, but what are some of the methods that you found that have helped kind of change people’s minds or open their minds to the medications?

Cheryl Koehn:  

Yeah, so I’m going to say the most fundamental shift people make from not wanting them to considering taking them has actually nothing to do with the medicine, Cheryl. It’s about acceptance that there is a need for an intervention. 

Cheryl Crow:

Wow.

Cheryl Koehn: 

It’s about overcoming denial that you need something.

Cheryl Crow:  

Yeah. 

Cheryl Koehn:

Right? 

Cheryl Crow:

Love that. Yeah. 

Cheryl Koehn:  

Because when you do that, it is really about looking in the mirror and saying, “Okay, this is what I have. This is going to be part of my future, short, medium and long-term.” And so, I think that is where the conversations I have with my peers who are recommended to have a chat with me, that’s where we start. We don’t even talk about the medicine. We talk about the reality of receiving the diagnosis and what it means to them. And it’s a conversation, Cheryl, that you know well. We don’t have the time and luxury to have that more in-depth or heartfelt conversation with our care providers either. They don’t have the time. They don’t have the interpersonal skills, which is often the case. Yeah, I know, we were looking at each other like… Or simply that they don’t have time, right. So, and doctors don’t often like to get too close to their patients. So, they’d rather have a nurse practitioner speak to the patient about this. At the end of the day, it’s just giving people the space in conversation to open their heart and to say, “I’m scared you-know-what-less of what I’ve just heard from this practitioner, from this healthcare professional.” So, the denial or the unwillingness to take a medication like methotrexate is yes, it’s partly what they go home immediately and Google, and then they read that it’s, you know, a cancer drug and yadda, yadda, yadda. It’s really that they just don’t want to accept that they have to take something, that they need something. 

And so, we work through that. We work through that, Cheryl, and it doesn’t take a lot of time. And then, the other thing that I share with people is that I felt the same way. I felt, you know, I’m not the person who seemingly is a-okay with their disease and takes a lot of different medications. And I didn’t start like this. I started where they started. We all do. And so, sharing with them that I had a similar response, “No way, Jose, like, I’m not taking that stuff. I’m a I’m an ex-jock. I can overcome this by, you know, thinking it off, thinking it out of my butt.” So, I think that was a big, those are two really big pieces, giving people the space to share their fear and to actually be open that they’re in denial, and then telling them of my own experience and how I overcame it, and then letting them go away and make a decision on their own. And what I would have to say, the number of emails that I’ve gotten over the time I spent helping ACE and working at ACE and prior to that volunteering with the arthritis society, Cheryl, I’ve got a pretty good, I’ve got a pretty good success rate at counselling people through that.

Cheryl Crow:  

And when you say ACE, it stands for Arthritis Consumer Experts. No, I’m always on the patrol for —

Cheryl Koehn:

Yeah, for acronyms. Yeah. 

Cheryl Crow:

There’s just so many, but no, I love that. And I think that my prediction was that you were going to talk about the personal storytelling and say that, you know, people need to know that it’s normal that they have this hesitancy. But these may be other reasons. But I love that you talked about it’s not — it’s actually about addressing the underlying denial and lack of acceptance.

Cheryl Koehn:  

Yeah. So, I can tell my story. But if we don’t start first with creating that safe open space for people to say why they don’t want to take it, it’s a non-conversation. It’s just me lecturing them. They already had a lecture at the rheumatology office. They don’t need another lecture. They need space to say why they don’t want to do it.

Cheryl Crow:  

Right. Well, and yeah, and it’s — in my personal story, I actually was very gung ho about the medication, because it gave me hope. And I had, I was very lucky. I think my doctor was maybe two years out of med school out of her residency. She’s very young, hip, very sweet. She’s the same doctor I have now. I have a unicorn, you know, she hasn’t left. Although I did just, of course, get an e-mail from insurance saying that we’re no longer going to provide the clinic that she works at. And I’m like, okay, fine. I’ll just do the private pay and then get it whatever, out of network. But point being, she’s amazing. But also, I think, my mom growing up — I think it’s also the family context. Even though in Seattle, we have tons of alternative practitioners. My mom was very, very — and my dad, too — are very practical and very much like, yeah, we take the antibiotics if you need them, you take, you know, you go to the doctor. Like, it wasn’t like there was a pressure from because I know a lot of people get pressure from their parents, especially young people getting diagnosed, that parents are like, “Oh, no, you don’t want to take these scary meds.” 

My mom — but that being said, my mom did say that, you know, she asked the doctor because I got diagnosed between before my senior year of college, I was at between junior and senior year. I had been playing soccer but then I had been deteriorating; I had severe rheumatoid cachexia. I lost 25 pounds on a 130-pound frame. So, I was just, I felt, I was sure, I was thinking I had cancer. Of course, they didn’t know what it was and then they were like, “You’re a hypochondriac.” Anyway, but she told them that, you know, well, this sounds like a big thing or deal with a refrigerated medicines, with Enbrel. They were gonna put me on Enbrel. And she was like, can we just wait a year when she gets back to Seattle? Because I was in school in New York. So, she’s like, she has to find a rheumatologist in New York and get the medicines and she has to get a little fridge for her dorm. Like, oh, this sounds like a lot of work. And they were like, she said exactly like what happened to you, she said, “She could be in a wheelchair in a year. Like, we don’t have a year.” And that’s kind of what sealed the deal for us. So, but you’re, I think it’s totally the norm. I don’t, I haven’t talked to too many other people who have been just gung ho from the beginning about the medications. It doesn’t mean that there’s nobody. 

Cheryl Koehn:  

Yeah. I mean, nobody wants — let’s face it. Nobody wants to take medication.

Cheryl Crow:  

Okay, people, a lot of people — I’m sorry to interrupt you. But a lot of people said to me — this is what’s interesting. I have an anxiety disorder. And I think in my position, having a medication decreases my anxiety, because it gives me something I can control. I’m taking this medicine. And every single time I open this container, I know something’s helping my body. So, that’s my value. But you’re right, like 95% of people —

Cheryl Koehn:  

But if you could wave a magic wand, Cheryl, today, it would be that you wouldn’t. I’m gonna guess, I’m gonna go on a limb here and guess that you didn’t have rheumatoid arthritis and you could wave it away. 

Cheryl Crow:

Oh, yeah. 

Cheryl Koehn:

Then you didn’t have to take medications, right?

Cheryl Crow:

Right. Right. Then that would be easier.

Cheryl Koehn:

Life would be a lot easier. And, you know, I mean, we both found meaning and purpose to our lives and are happy and hopefully, you know, well-adjusted.

Cheryl Crow:  

Were totally normal, right? 

Cheryl Koehn:  

Exactly, exactly. But the bottom line is, if you could do without those two things, you’d choose that.

Cheryl Crow:  

Yeah. Yeah, no, I mean, yeah, if I would have, but it’s, I guess it’s totally a semantic thing. It’s like, but I know that that’s not the case. That’s something I tell people. It’s like, you don’t… It’s like, the natural is door has closed, you know, your body is doing something unnatural. That’s kind of the framework I come from. My body has decided to do something unnatural. So, the natural, you can’t necessarily, you got to kind of fight fire with fire. That’s actually not totally true, right. Some people are able to, you know, just because it’s unnatural that your body’s fighting itself doesn’t mean you have to use an unnatural method. But it is kind of like I do think that I had a weird level of acceptance of it from the beginning. I think, in my case, and I’m sorry to keep going on mine, but I don’t know if you had been experiencing like medical gaslighting at all, but I had been told so many times I was just anxious and I wasn’t sick that when I got the validity, that diagnosis gave me the validity say, “Hah! You were wrong.” You all said that I was just anxious, I knew there was something happening in my body. And the fact that you’re like telling me that there’s a medication for it actually gives me legitimacy to prove that I wasn’t wrong.

Cheryl Koehn:  

Absolutely. I think validation is a really important part of one’s disease journey and does help support you in making, considering and then making decisions. There’s no question about that. I had, you know, my experience was a bit different. But like you, my family doctor was just out, was just basically out of med school. So, she was fresh of all the things she learned in med school that, you know, the sad truth of it is, family doctors only received about 17 hours of training on musculoskeletal diseases in their entire time in medical school. Yet it is the number one reason someone over the ages of 50, 55 sees a family doctor, right. So, the bulk of their clientele, the bulk of the people walking across the threshold are people who have an MSK or musculoskeletal complaint. Anyway, she, when I came in as a 27-year-old woman, 26, and was a former high-performance athlete, and I had a pain in the ball of my foot, and an inexplicably swollen index finger.

Cheryl Crow:  

Oh, that was my one. I called it my sprained finger. I only had one finger swollen.

Cheryl Koehn:  

It looked like someone came into my bedroom at night, took my own finger, and put a bratwurst sausage on the end. It was swollen from the base to the tip. And I saw the pain in the ball on my foot, I kind of explained a way due to athletics, but the finger thing was not — I couldn’t come up with a reason for it. That’s what drove me to see her and I’m so fortunate because she ended up diagnosing me or suspecting it in the very first visit, which is unheard of, right. Normally, people really struggle to get a diagnosis. She sent me off for bloodwork, bloodwork, I had titers that were just out of the hemisphere, you know. I had a rheumatoid factor positive tests. And back in the day, they didn’t measure CRP, they measured ESR, which is a less sensitive measure for inflammation in the blood, but mine was skyrocketing. And so, and then I got referred to a rheumatologist like within a week, Cheryl. So, I had a very unusual early start to my journey in that it was easy. It was recognized early. But then, when I got to rheumatologist, I denied the treatment for a year.

Cheryl Crow:  

Yeah, but it’s not like today. If you had done that today, it would have been a bigger — or sorry, this is like, this doesn’t even matter, really. But like, if you had gotten diagnosed today and then took a year with all these nine possible biologics and didn’t take one, then you might feel more in the future regret or guilt because —

Cheryl Koehn:  

Oh, there’s no question. There’s no question about it.

Cheryl Crow:  

Because those could have probably went to remission. 

Cheryl Koehn:  

But it’s all contextual, right? It’s all — if you have to do what you have to do at any point in time in history, if the plough is the best way with a horse, the best way to till the ground, that’s how you do it, right. So, I went back in the plough in horse days and, you know, I don’t live with regret. I just want to tell my story. I like to really focus on, you know, helping people understand that sitting still and taking it in is such an important part in those early days. To really, truly understand the set of choices in front of you. And actually, how life-affirming or changing not for the better those decisions that you take can be. I think that’s where we are today, Cheryl, science. It really is. The people diagnosed today don’t have to live the last 20 years that you did or that I did. They have an opportunity to basically, if they respond to medication, and they do all the other non-medication related things that support us in our journey, can make RA have almost nil impact in their life. That’s how far science has come.

Cheryl Crow:

Yeah, yeah. Absolutely. And I, in terms of — I know people are gonna be thinking about your own journey and wondering, so, after one year — because then we’ll talk more about other things was had in mind to talk about — but after one year, you were using a wheelchair, you know, you were at that point of mobility where it really severely affected you, 36 active swollen joints. Then you went on the gold and methotrexate. But there’s a saying you know that joint damage is irreversible, right. So, but now you’ve responded well to the biologics, like what was that transition like? Does that make sense?

Cheryl Koehn:  

That’s a great question. So, you know, some people in the audience may know this, some may not. But back in the day when I was first diagnosed, there’s a measurement scale that clinicians use and that drug manufacturers have to meet thresholds of, right. You have to meet an ACR-20. That means that the drug will give you back — if my life was 100% prior to getting diagnosed, then I got diagnosed and my life went down to almost 0%. I had literally, Cheryl, almost nil quality of life. And then, I started medication, I got 20% of my life back. That was state of the art back then. Of 100% of my life, I got 20% back. And then, I added, you know, then we added methotrexate, then I tried to triple what they called triple DMARD therapies or disease modifying anti-rheumatic drugs. And that got me to about 30%, which was amazing back then, actually. And I could, you know, resume sort of walking, I could start to hike again. I was a former volleyball player, so no, I could never do that again. I started to play a little bit of tennis again, which was sort of my new recreational sport. I couldn’t really run anymore. So, really, the things that I used to love about my body and my body’s ability, I got about 30% of that back. 

Then biologics came around. And I took one and as I mentioned, my first one was, it was an infused product, so by IV. And by that time, I had founded ACE, Arthritis Consumer Experts. And I was going to the ACR meeting, and I remember getting my first infusion, was the day before I went to the ACR meeting in New Orleans. I remember the city. And my husband, ex-husband now, I still love him dearly and we’re great friends and colleagues. So, he’s a rheumatologist, believe it or not. I know. We were walking down the next day. We were walking down a long corridor, you know how the meetings have these huge long logs between, it’s the most unfriendly thing for people with RA in the world. But anyway, we’re walking along and I said, “Hey, check this out.” And I handed him my hand, and he laced his fingers with mine for the first time in our life together. 

Cheryl Crow:

Wow. 

Cheryl Koehn:

It still brings tears to my eyes. That is how profound the onset was. Even for someone with long, relatively long-standing disease. That is the big — I can’t stand this term — the game changer. Biologics, and targeted small molecules are equally effective. So, we now have something by pills, something by injection, and something by IV that help you hold your husband’s hand. 

Cheryl Crow:

Oh, my gosh.

Cheryl Koehn:

I know, I know. It’s such a, it just makes me feel so filled with promise for the people being diagnosed today. They don’t have to go through that,

Cheryl. 

Cheryl Crow:  

No. I mean, unfortunately, some of them still do those do.

Cheryl Koehn,

They still do, I agree.

Cheryl Crow: 

No, I’m only just trying to — remember that word validation from earlier. I know some people feel like, “Everyone keeps saying that, like RA is all figured out. But like, I’m not responding.”

Cheryl Koehn:

No, I get it. 

Cheryl Crow:

But you’re right. The majority, that statistically, the majority do respond to the current medications. Unfortunately, some have difficult to treat RA. I love that that’s like a medical phrase. It’s sad, but it is.

Cheryl Koehn:  

Yeah. So, I went to — just to go back and kind of put a bookend on your question — I went from an ACR-20, 30, to an ACR-70, 75. Before the ACR-70 was even talked about, I got to that level.

Cheryl Crow:  

So, your quality of life was 70% to 75% of what you previously had. 

Cheryl Koehn:

Yeah. 

Cheryl Crow:

Yeah. And that’s phenomenal. That’s exactly what — and that, I love that — I’m sorry, as an OT, it just makes me, it does give me shivers like thinking about being able to hold — that’s what people want, is to be able to hold their husband’s hand. Or for the young moms that get diagnosed after having a baby, which is a really common, statistically, time for an autoimmune disease to flare up for the first time. You know, I want to be able to pick up my baby.

Cheryl Koehn:  

I want to be able to nurse my baby, right?

Cheryl Crow:  

Yeah, yeah, there are so many ways that it’s not just about ‘I want my pain to be less than a 5 on a scale of 1 to 10’, it’s like we want to be able to function, you know.

Cheryl Koehn:  

And, you know, this is a bit tangential but not and I hope you’ll indulge me just for one moment.

Cheryl Crow:  

Please, oh, are you kidding?

Cheryl Koehn:  

It’s the holding of hands. It’s comments, it’s lived experience like that, Cheryl, that has patient participation in research bring to the table that is absolutely invaluable. A researcher can’t do that unless, of course they have RA and are willing to disclose and share that in their work. But that is the value of patient participation in research. And it is as meaningful as a methodology in my opinion, in conducting the science. It is the same, it brings the same meaning to the drug review process. So, you know, the FDA, when you sit, and the FDA considers whether this drug adds value — well, what is the value of being able to hold your husband’s hand? I would say it’s invaluable to me.

Cheryl Crow:  

Yep. Right. Yeah. And that’s, you know, that’s whenever we’re looking at outcome measures, it’s like, okay, well, certain things might not have moved the needle on the thing that you decided to define as an outcome measure. But did it move the needle on what the patient — that’s why I love qualitative research, because it’s like, you know, what actually matters to people is the stuff that’s the hardest to measure. And yeah, I know, preaching the choir. But yeah, you mentioned, you know, patient partners, you’re doing so much with ACE and just all your advocacy, I don’t even — we would have to have like, 17 episodes to even like, touch it. But yeah, like, there are so many people with lived experience of rheumatoid arthritis who just get that fire in their belly to address some of the systemic issues that we see out there. And so, I just would love to hear your superhero origin story for Arthritis Consumer Experts, which we’ll refer to as ACE or however you want to refer to it. 

Cheryl Koehn:  

Yeah. Well, I think probably, you and I, some of our DNA is shared, or genetic material, because I think when I started, when I found it ACE, it was really, I was doing so much volunteer work that my volunteer work was almost consuming. I was running a communications consultancy firm my own at the time. We were very successful, we had some big clients. But I found myself spending more and more of my time doing volunteer work, I was on the board of the Arthritis Society here in Canada. When I looked around the landscape, Cheryl, I couldn’t see anybody like me looking back at me. I was, I found myself the only person with rheumatoid arthritis in a room of 200 people. And I just thought to myself, well, one, that’s going to start to really eat away at me. You can’t give all the time and not have it, and then not pay a price for it, right, physically and mentally and emotionally. And so, I thought, well, I — and I don’t want to hear my own voice all the time. I want my voice to be blended with a beautiful melange of voices. And so, I thought, well, there’s gotta to be more people out there with rheumatoid arthritis in Canada than just me. 

And I thought, well, I tell you what, I’m just gonna start an organization that’s by, for, and with people with arthritis, and see who comes to the party. See who answers emails. See who comes into a hotel meeting room to learn about the disease. So, I started running workshops across the country with a leading community rheumatologist. And because I was volunteering with a national research organization at the time, I had good contacts. I had a good network of leading rheumatologists who really wanted to hear what people like me were saying. So, they were curious. They wanted to see, well, could we co-deliver an educational session that provided standardized information about rheumatoid arthritis that was leading edge across the country? And the answer was yes, we could. And we started changing and saving lives one at a time, running workshops across the country. And then, I added a person, and I added another person. 

Cheryl Crow:  

Yeah, and it’s a non-profit organization.

Cheryl Koehn:  

It is. We are a not for profit. We do not publicly fundraise. People do give to us. We have a blend of grants from government and from private sector companies such as the pharmaceutical industry. We take unrestricted grants; they go into one pot. Our board, our staff determines what we do with the funds. We’re fully accountable. We’re fully transparent. We disclose in all of the materials and presentation that we make. And it’s a very, it’s a very cool place. It’s a very cool world I live in where I get to do work that’s super fulfilling to me personally. I learn every day. I’m in such awe of people like you and people that you and I encounter in our daily lives in the work that we do, Cheryl, paid or volunteered. And it’s just amazing. So, that’s where the Wonder Woman shield came from. It came from just this real dire need to connect with fellow people like me, that simple. And to start this learning journey together.

Cheryl Crow:  

Yeah, that is what I love about — I mean, so much I love about your organization, but that you’re really focused on like, I’m looking, just reading from the website to make sure — “Providing free science-based information education programs in both official languages.” 

Cheryl Koehn:

Yep. Yes. 

Cheryl Crow:

Which is not something I — it tends to be as a blind spot for me sometimes, you know, I have friends who translate like Cristina Montoya, Arthritis Dietician, she’s been on here. She translates things. 

Cheryl Koehn:  

She’s amazing. Yeah. We have to disclose to the audience. We’re key members of her fan club for sure.

Cheryl Crow:  

Yes, she’s been on twice to talk about nutrition and one is for cannabis. And yeah, I just think it’s really such a, you know, there’s a dearth of evidence-based information, even though it’s like, it’s weird. It’s like your, when you get diagnosed, like you said, now, in 2022, you go to Google. There’s, it’s actually, there’s a ton of information, but there’s a lack of curation of that information. 

Cheryl Koehn:  

And that’s exactly I think what you do, Cheryl. That’s what we try to do, for sure. And we, you know, in the maturation of our organization, as we grew, as we had got more members, you know, we have members and subscribership at 50,000 across Canada. There’s 60 million —

Cheryl Crow:

Oh, my gosh.

Cheryl Koehn:

Yeah, yeah. We’re surprisingly large.

Cheryl Crow:

That’s amazing.

Cheryl Koehn:

But we still have this — I mean, our feet are on the ground, because we are people living with a form of arthritis. And we, because we’re small and grassroots, we’re also nimble. And I think that’s what people appreciate about our organization. So, we partner, I think, very effectively, with much larger, publicly-funded organizations, such as research institutes. We work really well with the Arthritis Society. We think that our work is very complementary to theirs. The bottom line is that every person with arthritis could probably set up a little shop on the corner, and never meet the information needs of all of the people who live with arthritis. It’s a daily battle to get where you need to be when people need it. And so, that’s how we view the community, and our bandwidth has grown. But it’s all informed by people with arthritis through our survey program. So, we survey them three times a year. And like you, the qualitative research piece is always my favorite. We allow lots of room for people to write what they’re experiencing, as well as answer the more quantitative kind of questions in the question set. But the richness comes from the words of the mouths of people with arthritis. So, yeah, that’s kind of where we started, how we operate, who we are. I’m so blessed to work with amazing people who support me in my own journey every day, and I hope vice versa.

Cheryl Crow:  

Oh, yeah. Absolutely. Well, and that’s one thing. I mean, I have so many questions for you on like, a personal interest. But, you know, when you — a lot of people who listen to this podcast have chosen to work either like in a healthcare-related field or in a non-profit for arthritis, you know, or for related conditions. And I’m curious how — I know a lot of people don’t like this phrase, like ‘work-life balance’, but when you are all day focusing on this kind of work in the arthritis sphere and you’re living with rheumatoid arthritis, I’ll just say from personal experience, I find that things — I use a metaphor ‘breathing’, for whatever reason, but I expand and then I have to contract. But I expand into all these things, “I’m excited, I’m excited.” And then, I have to contract and say, “Oh, it’s too much. I’ve reached too much. I need to think about something other than arthritis.” Like, how do you balance mentally?

Cheryl Koehn:  

Yeah, that’s a really good question. And this, the answer is, I think, applicable across any profession, any job. I think, first of all, to balance, you have to love what you do. You have to absolutely want to eat it every day. And that’s what describes me in my work. I love what I do. I kind of am a server, if I were to be described, you know. I’m the person serving the food. I’m not taking the order. I’m not in the back cooking, I’m serving. And I love serving. I’ve always loved my volunteer life. And I feel like I don’t work. I feel like a volunteer. I have though, over the years, developed a rhythm to breathe, as you put it. And which I love that word. And I will use it probably further down in your question set because you’re gonna ask me what word I have. There’s a little preview. But because I founded ACE and I’m still, although we are a team that drives out all of the programming, content creation, equity work, et cetera, et cetera, people still think it’s me, 24/7, right. They think ACE = Cheryl, 24/7. 

And I do work in the evening, I tend to do a lot of my counselling work, a lot of peer support work in the evenings, because that’s when people have time available. Because they’re busy working during the day. I just, I spend a lot of my time to balance through reframing exercises. So, you know, sometimes you could think, “Well, that’s taking my hour from seven, eight, I should be sitting down enjoying my dinner.” And I reframe that it’s not work because I derive such benefit by making a human connection with someone else who may be struggling with the disease. I mean, I am benefiting as well, because I get to reexamine where I’m coming from and where I’m at in any given point in time. So, that’s probably one of that. But then the other part is, there are times like following a conference like the ACR. People expect us, you and myself and others who work in the community, to be up all the time. And I’m here to tell you, not all of my time is up. I have down times; I have down days. And and a lot of times I kind of feel like I’m not allowed to show those. Because people rely on me being up. They rely on me —

Cheryl Crow:  

When you say ‘up’, you mean like positive energy —? 

Cheryl Koehn:  

Yes. Yeah. Happy, smiling, contributing, right. So, if I sit quiet at a meeting, people usually ask me, “Are you okay?” I get it. I have a big voice. And I’m loud. But I do have time where I have to sit. So, then I just say to myself, the time when I really need to unplug, Cheryl, is after a big meeting like the ACR. ‘Cause you’re on all the time. So, my team understands that that week following, I’m going to be very quiet. And they’re going to have to take leadership in the woodwork and progress meetings that we have every morning at 9:15am. They’re going to have to, you know, be the ones on the watch. I can’t be on the watch. I’m not standing guard. I’m going to be in the background. I’m going to be working. But I need to fill myself back up. And that’s how I do it, Cheryl. It’s not science. It’s just simple — it’s just simple boundary setting, which is hard to do.

Cheryl Crow:  

It’s hard to do when you want to ‘Yes’ to everything, every opportunity. At a certain point, if you get enough visibility, every opportunity is good. You’re like, “Yeah, I want to help with that. I want to help with that.” But you have to, yeah, I’ve been really — I struggle with that. But I think it’s the people pleasing part of me too. You know, that wants, you know, but you’re right. Boundaries are a form of like self-care, right.

Cheryl Koehn:  

Yeah, one hundred percent. I think the other thing is when people come to you, you know, I’ve been around in the community long enough that there’s name recognition, what I call name recognition. And in the principles of equity, I can’t be at the table anymore. It’s not right. Because when you look around the table, it’s white.

Cheryl Crow:  

Yeah, yeah, good point.

Cheryl Koehn:  

Right? So, if we are going to be good allies to communities that are marginalized and face inequities every day in healthcare, we need to give, shift our power. So, I spend now and focus a lot on giving my own professional personal power to people of color, to people who are facing inequity. We spend a lot of time giving ACE’s platform up to indigenous peoples to say, “Here, here’s the platform, what do you want to say?” What’s important for people to know about indigenous people on Turtle Island — which is what indigenous people have always called their native land — and how do we support you in that? So, that’s another way of boundary setting, is not just for you, the person, but for you in the community greater, right, in a bigger community that is multicultural, multiracial, and not equitable. So, that’s another piece we need to start. Those of us who have name recognition, need to start saying, “Oh, you need someone for that meeting? Here’s the perfect person for you.”

Cheryl Crow:  

Sharing the mic. I know, I’ve —

Cheryl Koehn:  

Sharing the microphone, which is what you’re doing now, right? You do this in your own program.

Cheryl Crow:  

Right, I do. And I — but I, I can always do better, too.

Cheryl Koehn:  

We all can. Cheryl, it’s a lifelong process, right?

Cheryl Crow:  

Yeah. Yeah. And I was just thinking about Jen, do you know Jen Horonjeff? 

Cheryl Koehn:

Yes. Yeah.

Cheryl Crow:

I was gonna say, you remind me of her, too. She’s, she was the first person who brought, or that really brought that to my attention about, you know, she’s like, at a certain point when you also have developed — you mentioned, I love the phrase ‘health literacy’ — you’ve developed a degree of health literacy over your years living with rheumatoid arthritis, that then you no longer represent the average patient because the average patient hasn’t — or an average newly diagnosed patient hasn’t developed that yet. And so, their needs are different, too, so.

Cheryl Koehn:  

Yeah. Yeah, for sure. I think, you know, we don’t become obviously different people, we become more informed people and it takes great discipline if I’m ever asked a question about disease experience, I always preface what I’m going to say by saying, “This is not Cheryl Koehn, organizational leader over here. I’m talking —” so, because I’ve, I am a person who lives with rheumatoid arthritis every second of every day. That hasn’t changed, regrettably. And I can remember the day, by the moment, hearing the diagnosis, I remember what the weather was like. I remember the time of my appointment. I remember the exact words my rheumatologist at the time spoke to me. So, you know, yes, we evolve as people working or volunteering at senior levels or at higher levels, whatever you want to call it, of the community, Cheryl, but I think if you have that discipline, you can always return to where you started from. And I can. I remember this like it happened half an hour ago.

Cheryl Crow:  

Yeah, I know. Yes, I do remember it. I don’t remember all the conversations, but I have snippets that have come in and out that are very, very vivid, especially I just remember that for me, it was like a whiplash between like, being in a position of trying to convince people to get to the root of this, that something’s wrong.

Cheryl Koehn:  

And then, getting the news. 

Cheryl Crow:  

All of a sudden, it’s like, the thought that I remember going through my head is like, “She’s acting like this is a bad thing.” Because I had my parents — again, talk about privilege — my parents had hired a concierge doctor, because they were like, “We need someone that actually is going to give a crap about this and is not just going to say she’s anxious.” They know me. They’re like, there is no reason that Cheryl went from captain of the college soccer team, you know, running every day, there’s no — there wasn’t — something happened. And so, they’re like, I mean, there is no history. There’s a little bit of history of anxiety, but nothing to the degree that would make it be so severe with what was happening to my body. 

And so, they hired this, we call them a designer doctor back then, it was like a concierge doctor. And even the concierge doctors — I brought in my little charts that I had tried to track my symptoms, track what I was eating, track this and that. She even said, you’re hypervigilant, you’re worried; you’re too worried, you’re too worried. So, she wasn’t thinking that there was anything bigger going on. And then, all of a sudden, when more than my one sprained finger was hurting, when everything was hurting, all my joints were hurting. I couldn’t do anything with my hands. She’s like, all of a sudden, she’s like, “Oh, I think you have rheumatoid arthritis.” And I was like, why are you acting like this is a bad thing? Like, I have been begging someone to figure out what’s going on. But the fact that I was so relieved that the diagnosis did give, was a form of, I believe the diagnosis, but it was a form of denial that it was serious because I was like, “I don’t care what it is. I care that you’re telling me that you believe me that something’s wrong, and that there’s medications for, and that’s giving me hope,” you know what I’m saying?

Cheryl Koehn:  

Yeah, I do. And I’m just sitting here listening to you, Cheryl, and thinking your story and getting someone — how exhausting it must have been to convince someone something was wrong was beyond the pale, right?

Cheryl Crow:  

Well, you can’t prove — you can’t, it’s, you’re in an impossible situation. I knew in my gut, I knew my body. I knew there was something wrong. And if you go to the doctor saying there’s something wrong — I will say it wasn’t a normal presentation because it was only one joint initially for two years, it was only one joint. And then, I did have gastroparesis. So, I got that diagnosis of the dysautonomia. So, they’re like, “Well, maybe it’s all related. Maybe her weight loss is related, unintended weight loss was related to the stomach emptying issue.” But that all got significantly better when I was treated for RA, which was really interesting. But yeah, but anyway, yeah, it’s an impossible situation because you’re trying to convince someone that you’re not quote-unquote ‘crazy’, but the more that they don’t believe you the more quote-unquote ‘crazy’ you start feeling because my anxiety skyrocketed the more that I realized it’s like I’ve called the firefighters and they’ve come to the house that’s on fire, and the firefighters are like, “There’s no fire.”

Cheryl Koehn:  

Yeah, it’s so important.

Cheryl Crow:  

Thank you for validating my story.

Cheryl Koehn:  

No, no, no. It’s just so — I hear this all the time, Cheryl. So, when do we stop that story, is why I’m in this. How do we stop, how do we make sure your story is never told again. And one way — [coughs] excuse me — that we can do that, and this is really fundamental to work around bias, right? Explicit or implicit bias. Practitioners in health, no matter who, what field they come from, often walk into the physical exam room with a bias. They bring it in with them, they hold it in their daily lives, then they add to it when they lay eyes on you, right. And if every healthcare practitioner and every patient, if we were to see an exam room, this is the model, the perfect model that lives in my head. And there’s a door on one side and a door on the other side. And each of us walks in with just this blank chalkboard called the brain area, or writing area, right. And we each walk into the room, and the only thing that’s written at the top of that blackboard is ‘What can I learn from this person today?’ What can I learn from this person today? And we then — I’m not saying we can eradicate it altogether using this tool — but if we can do that, we drop away a lot of bias. Had you not been faced with the bias, you would have gotten to where you needed to be, which is a person with the diagnosis. You would have been a person unhappy about the diagnosis two years earlier, not happy about the diagnosis, you know what I mean?

Cheryl Crow:  

No, exactly. Yeah. That would have been a different picture, the context changes everything.

Cheryl Koehn:  

But it is implicit and explicit bias in healthcare that really is problematic for patients and particularly patients who are not white.

Cheryl Crow:  

Yes. And that’s, that’s what I try. I try to always mention, I had every privilege available. Financial privilege, white privilege. Other than that, I wasn’t male, but a female, and females are more likely to have rheumatoid arthritis. So, in that sense, I was representing your typical… That being said, you know, yeah, the doctors are trained, you know, to say, “When you hear hoofbeats, think horses, not zebras,” I will say, I try to be as as open — I try to be as— well first of all, I love the portrait you painted of people walking in. That is beautiful, and I think —

Cheryl Koehn:  

It’s just easy, hey. It’s an easy visual. 

Cheryl Crow:  

I think the other thing that I want, I will recognize, that, you know, I think objectively, a 20-year-old, you know, high performing person who, you know, they look on the paper like, “Oh, this is like a Type A personality person, you know, she’s going to elite university, she’s playing soccer,” you know, and then suddenly is reporting unintended weight loss and heightened anxiety around that. I mean, their first thought was eating disorder. And what was hard about that for me was, I think, statistically, someone with one sprained finger and then this weight loss and this Type A personality, maybe objectively, statistically, it is more likely that person maybe has it. And maybe the parents — that’s what It was tricky. That like, the gastroenterologist — so, we presented to gastroenterology first because it seemed like the stomach was the issue. The main issue, and this sprained finger was just an afterthought. But the gastroenterologist called my parents and they’re like, “I think she’s playing you, she has an eating disorder. And she’s just, she’s playing you in the sense of —” and it’s horrific, horrific to be not believed like that. But they do see that. That is not an imaginary occurrence. There are people who the parents notice that the kid has an eating disorder. Eating disorders are a completely complete mental illness that deserves compassion and care and accurate diagnosis and recognition. But, you know, the parents noticed the kids eating losing weight, and the kid doesn’t want to tell the parents they have an eating disorder. So, they’re going along with it, to say, “Oh, yeah, maybe there’s something there,” but my parents, the thing is, they know me. It unfortunately happened there is a family history in my extended family of eating disorders to confound things. I think, they had to at some point, in their mind wonder, “She’s out in New York, we don’t see her everyday now, maybe…” But so, it’s like, it’s just complicated, you know. 

I’m sorry, I’m like processing my story because you’re a good listener. And listeners who’ve listened a lot episodes have heard this before, but my little spiel to all medical students and all practicing doctors is that there needs to be this, we need to have a reckoning with the difference between ‘We don’t know what’s wrong with you’ and ‘I know that nothing’s wrong with you’. Those are two completely different frameworks and different conversations. And what I was told is, “There is nothing wrong with you,” more than, “You have gastroparesis, and you’re losing weight from that,” but you know, that’s it. And initially it was nothing. And then, when I finally at least got the gastroparesis diagnosis, it was like, okay, there’s something objective, like, my stomach’s not emptying, “We don’t know why, we can’t help you. And the only medicine available for you is something that you had to get from Canada, because it’s not FDA approved in the US,” the whole thing was crazy. 

But point being, a doctor can be trained to say, “I under —” like, if someone had said to me that the conversation that replays in my head, the imaginary ideal, like you said, you have an ideal model that the two people are walking into the conversation with a blank slate, an open mind, my ideal motto would be that a provider would have said to me, like, “I have run the tests that I think would explain what’s going on with you. And I don’t know why you are feeling so off in your body. It does seem that what’s happening is beyond just dysautonomia and gastroparesis, but I don’t know what it is. And I’m here for you. I can’t help you any more than I can right now. But I want you to keep checking in maybe once a month, and we’ll see,” like, to give you this hope of like, there’s something they can do versus, “I’ve checked what I can check, and you’re not sick,” like, that’s the version I got. And I was like, oh, well, then they did blood work that had more blood work. And they were like, “Well, you actually have rheumatoid arthritis.” I’m like, so every single time you told me before that you ran all the tests you could run and nothing was wrong, you weren’t even running everything. Like, do you know what I’m saying? Like, they need to contend with the fact that absence of proof of a diagnosis is not proof of absence of a diagnosis. And that’s not — that’s something that lawyers understand. It’s not something that doctors are taught to understand. 

Cheryl Koehn:  

Yeah. I think it’s really fundamental to what you’ve experienced and so many have experienced, Cheryl, is the need in medical school, both in the time in medical training for family physicians and then beyond that to become a specialty physician, such as a rheumatologist, a gastroenterologist, an endocrinologist, an oncologist. And it’s now starting to be taught but not to the level it should be is communication skills. And in actual fact, had they come into this room that I built in our heads with love, compassion, curiosity, understanding, empathy, justice — had they brought in some core human values that were top of mind, like, they put those words on their chart when they walked into that room. And then, they began to have a conversation with you based on those fundamental principles. And then, they layer on top their medical training, their expertise, their clinical gestalt that forms from all of those things put together, you would not have experienced I think what you experienced, frankly. I think medicine, it doesn’t start with the prescription pad. It starts with human beings. It starts with the innate curiosity we have as humans to hear things from each other, and then be able to walk on a path of healing together. Healing doesn’t come with the script alone. Healing doesn’t come with the diagnosis. Healing comes before all of that. You need all those special ingredients in the mixing bowl to come out with the recipe that gives you your life back. 

Cheryl Crow:

Oh, I love that.

Cheryl Koehn:

It’s so fundamental, communication and the art of it.

Cheryl Crow:  

Yeah, yeah. And it’s, I know, I recognize that the systems are just compressing on doctors. They have less time, less time, less time. You know, and you shouldn’t have to hire a concierge doctor to get that like, limited resource of time.

Cheryl Koehn:  

Yeah, they have less time because they’ve had to schedule three meetings following the initial meeting where they provided the diagnosis to try to convince them to do what they want them to do. Had they spent a bit more time in that phase I’ve just described, which is where you actually are a good human being to another human being, and you talk to each other, I’m going to argue that you’re not going to have those three other visits. And there won’t have the time in this system, there won’t be a compression of their time. They will have all the time they need to help that person because they bothered to think of them as a whole person with a brain, with cultural, you know, norms and context, with racial issues due to inequity, right. They would know all of that and care about it, and then they would work with the person to come to the diagnosis.

Cheryl Crow:  

That’s very true. Even with, let’s say, everyone had 60-minute appointments, if you didn’t have that fundamental humanity, as you said, the base foundation, then you’re just going to be having longer amount of time with somebody who’s still not seeing you,

Cheryl Koehn:  

Because they’re gonna fight you the whole way. Because you haven’t bothered to ask them. You haven’t bothered to know who they are.

Cheryl Crow:  

Yeah, yeah. You know, I think it’s great. Being an allied — you know, being an OT, I’m not really working clinically in like a traditional OT sense right now. But working in the allied health fields like OT, occupational therapy, physical therapy, speech, or social work — well, they don’t get enough time — or counselling or psychology, you’ve been getting these hour or 50-minute long appointments, you get to actually have time to get to know people, you know, and everything. So, but anyway, I’m just so grateful for all the time you have given and I want to be conscientious-ish of time. Obviously, we already gone over, but we already talked beforehand. But yeah, let’s get to the rapid fire. It’s so interesting, I’m interested to hear your thoughts. So, what are your best words of wisdom? We’ve already touched on this, but, you know, yeah, maybe, yet again, maybe summarize your best words of wisdom for people newly diagnosed with RA.

Cheryl Koehn:  

Sit down, and breathe. And find ways of asking for help with what you’re experiencing. Doing the best you can. It’s really hard to ask for help in the early days. But I would say, sit down and breathe. Don’t panic. There’s help. There’s support. There’s love. There’s knowledge. There’s expertise. Sit down, and breathe. It’s not the end of the world, but it feels like it right now. Just sit down, and breathe. And there’s people out there who will help you.

Cheryl Crow:  

What I love about that is that I think that in rushing to find the fix, or the solution, or the cure, which is what most people’s logical reaction is to the diagnosis. They don’t, like you said, they don’t give themselves any time to actually digest it. 

Cheryl Koehn:  

They usually rush to the wrong decision, frankly.

Cheryl Crow:  

Yeah. yeah, we’ve seen it. Listen to us. We’re like the elders, we’re like the elders of RA.

Cheryl Koehn:

[Laughs] I’m the old lady on the podcast.

Cheryl Crow:

No, that’s seriously what — yeah, I feel like that way sometimes, too. I mean, like, you’re young, I’m 41 now, so I’m not as young. But yeah, okay. And do you have a favorite arthritis gadget or tool in your physical toolbox, I guess?

Cheryl Koehn:  

I do. And it’s, and you might view it as cheating a little bit to answering the question, but it’s health literacy. It’s my health literacy.

Cheryl Crow:  

I should have said —

Cheryl Koehn:

No, no, no, it’s okay. I view it as a physical tool because it’s coming from up here. It’s the opportunity and privilege I’ve had to gather health literacy and then use it for my own disease. 

Cheryl Crow:  

Yeah. That’s beautiful. Health literacy, how do you define that for people who might not know?

Cheryl Koehn:  

Right. So, health literacy isn’t about what reading level you read, or what level of schooling you completed. You can be a postdoctoral person and still make really bad decisions about your health. You and I see that every day, Cheryl, regrettably. So, literacy is, let’s think of it as book learning, right? Health literacy is about being presented with a set of choices, sort of pros and cons, information, being able to sort out what the pros and cons would be for you, of taking one decision over another, and then making a decision. It’s understanding how to balance evidence. So, information, and saying, “Well, given what I know about myself, and my circumstances, and my finances, and my living situation, and my emotional wellness, this is the best decision for me right now.” And then, seeing a better outcome there than you might if you’ve chosen another option. So, that’s really what health literacy is distilled down into a very simple definition.

Cheryl Crow:  

No, that’s really helpful. I just want to make sure in case people are like —

Cheryl Koehn:

No, it’s a good point. 

Cheryl Crow:

Ability to read a scientific journal article versus like, like it’s applied health literacy.

Cheryl Koehn:  

It’s applied knowledge. It’s applied knowledge, yeah.

Cheryl Crow:  

To the complex art of decision making. And I find, yeah, I think if I was ever to go back and get like a PhD or something, it would be in like health promotion and health, you know, health decision making because it is really, you know, we’re not — we’re as Dan Ariely says, “We are predictably irrational.” We are not rational humans. 

Cheryl Koehn:  

Well, learned a lot about health literacy, actually, from our intern, Ellen Wang, who is doing her PhD on health literacy with Linda Lee, whom you know well. 

Cheryl Crow:

Yes! Oh, my God.

Cheryl Koehn:

She’s our program manager in man, oh man, she taught us a ton and we look forward to learning more from her while she’s with us.

Cheryl Crow:  

Do you have a favorite book, or movie, or TV show you have watched or read recently?

Cheryl Koehn:  

Well, I’m a sports fanatic. So, I’m not going to tell you that last night’s game with the Dallas Mavericks and the Denver Nuggets was great. But I am going to tell you this. I just recently watched a movie called Stutz by Jonah Hill. 

Cheryl Crow:

What is it called?

Cheryl Koehn:

Stutz. S-T-U-T-Z.

Cheryl Crow:  

Oh, is it about his therapist? 

Cheryl Koehn:

Yes. 

Cheryl Crow:

Okay.

Cheryl Koehn:  

It is a must watch for anyone living with chronic disease. 

Cheryl Crow:

Okay. Oh, I can’t wait. 

Cheryl Koehn:

It is — I was blown away. I’ve benefited from counselling in the past.

Cheryl Crow:  

I was gonna ask about that. So, I’m glad you brought it up.

Cheryl Koehn:  

Yeah. So, it’s not — it’s really, the movie, he set out to make a movie about Philip Stutz, his therapist. In the process, it became clear to both of them that they couldn’t do that without actually talking about their relationship. And then, through that discussion, Dr. Stutz has created an incredible toolkit. I’m not a big fan of that term. But literally, he makes drawings for his patients. I’m a very visual person.

Cheryl Crow:  

My therapist does, too.

Cheryl Koehn:  

Showing Jonah, showing what tools he develops with his patients. And it’s about seven or eight tools that he uses and talks about. So, you walk away from 90-minutes and you’ve got tools to us in your chronic disease journey. I recommend it to everyone, it’s on Netflix. Stutz, S-T-U-T-Z, by Jonah Hill. Watch it.

Cheryl Crow:  

Wow. I’m so excited. I love him. Okay. And then, do you have a favorite mantra or inspirational saying? It’s okay, if you don’t.

Cheryl Koehn:  

I have quite a number. But I’m gonna give two because they go together. Power, and share. And power sharing between and for fellow people living with arthritis is, to me, everything. Personal power, organizational power, volunteer power, paid power, political power. Power is nothing unless you share it. So, power, share. Power sharing.

Cheryl Crow:  

Love it. I love it. Now, what’s something that’s bringing — there’s two more questions if you have time — something bringing you joy right now?

Cheryl Koehn:  

Well, right now, today, every day for the last 10 years is my dog. 

Cheryl Crow:

I was thinking you’re gonna say that. Yay!

Cheryl Koehn:

Molly the Magnificent. She’s a Labradoodle. She’s just, she saved my life, Cheryl. In so many ways, she saved my life. She is a therapy dog. And she’s just the best little creature put on this planet, in my biased opinion.

Cheryl Crow:  

Yeah, no, that’s mine. Actually, I will just very quickly say for those watching on YouTube — sorry to make it about me again. But you might notice my cat Wally has made frequent appearance. 

Cheryl Koehn:

Yes, I’ve seen like the shadows.

Cheryl Crow:

Yeah, his little tail. But unfortunately, he developed a tumor and passed away very quickly, just over a week ago. So, it’s okay. He was, you know, he was with us for 12 years.

Cheryl Koehn:

Oh, that was your dog in the background? 

Cheryl Crow:

Oh, sorry. No, no. Sorry, our cat. So, my dog, he’s here today. Where is he?

Cheryl Koehn:  

Oh, that’s who I’d been seeing in the background.

Cheryl Crow:  

Oh, the dog is in there sometimes. But for the podcast more frequently, I have the cat crawling around. He loves — ever since he was a kitten, he loved to sit on the back of my chair. Like, he’s my podcast buddy. 

Cheryl Koehn:

I’m so sorry. 

Cheryl Crow:

Thank you. I’m just sharing in case people are like, where’s your cat?

Cheryl Koehn:

Their energy is still with us, Cheryl.

Cheryl Crow:

Yeah, exactly. I mean, it’s been really fun walking down memory lane with my husband because we got him two years after we started dating. We moved in together so it’s been really fun to kind of look back at the old pictures and all that so. But so, you won’t be seeing Wally anymore. But you can go look back and see his old — and his sister Eva still with us. So, we have Wally and Eva. What’s your Labradoodles name?

Cheryl Koehn:  

Molly. Molly the Magnificent. Mollydooker. Funny story quick. We were at a team holiday lunch 10 years ago. And I was really wondering, because I travel a lot for my work, and I just thought, well, it’s too cruel to bring a dog — so, I had to figure out this, you know, how would I make a life for this beautiful creature if I brought a dog home with me. And I finally sort of just, it’s just basically taking the plunge because you figure it out. You have to take excellent care of them. So, we were sitting around the table at the restaurant and they said, “So, you’re gonna do it?” And yeah, and let’s come up with names! And it was a holiday lunch and we had ordered a bottle of wine. It doesn’t happen often, trust me. And the wine is Australian, and it’s a shiraz, and the name of the wine is Mollydooker. And Molly was in my head anyway. So, her name is Mollydooker. And that’s how she got her. She’s named after a brilliant Australian shiraz.

Cheryl Crow:  

That’s amazing. That’s amazing. Okay. And then, last question, what does it mean to you to live a good life and thrive with rheumatic disease?

Cheryl Koehn:  

I have this principle, Cheryl, that love is all there is in life. And love — I just, if you have love, can find love, can love yourself. You have all the love in the world in you. And understanding that, for me, has been a journey. And I love myself. Some days, I’m the only one that loves me. And that’s okay, because I love Molly. Yeah, Molly always loves me. But I think that, to me, is the secret to my life. Good life, bad life, some day’s aren’t great. But I genuinely love myself. And as a result, I’m genuinely a happy person. Even with a shitty rheumatic disease, pardon my language, but, you know, it just makes everything better. Love at the center. So, that’s how I live my life. I live it in love. And I have fun, and I just am a happy camper most of the time.

Cheryl Crow:  

That’s amazing. And I love — this reminded me, you remind me of your bio, which you sent me, your speaker bio. And usually with someone as accomplished as yourself, it would be something like she has, you know, she held the fruits of this —

Cheryl Koehn:

And who really cares about that? It’s irrelevant to me, at least.

Cheryl Crow:  

That’s why I love it, and you wrote, you know, “I love life even with rheumatoid arthritis.” Like, that is fundamental to who you are. And that’s like, that resonates with me, because that’s something I really — that word ‘with’ is something that I really focus on in like my Rheum to THRIVE groups. And, you know, I say you need to think of it — or not you need to — but, you know, I think of it as I am living with rheumatoid arthritis, and I can do great things, and have a meaningful life with it. As opposed to you’re fighting it. It’s something you’re, it’s you against arthritis.

Cheryl Koehn:  

It’s reframing, right? It’s the art of reframing. And reframing is one of the best tools that we have in chronic disease because it takes something that is not overly regarded as being great — rheumatoid arthritis, for example — and saying, “Yeah, okay, it’s there. And yes, it hurts. And yes, I have to tend it, you water it and feed it, and whatever. But it’s not who I am.” And I think if when you get to that point, and it’s a journey, Cheryl, as you all know. It consumes you in the early days. But it does change. Your relationship with your disease changes over time for the better. And you learn to make it background noise, not a set of drums. It’s not the drumbeat in your life. It’s just humming in the back.

Cheryl Crow:  

Yeah, I love that. Yeah, we both are like very metaphorical thinkers.

Cheryl Koehn:  

I live by metaphors, which my team kills me for. They just can’t stand them.

Cheryl Crow:  

Oh, no. Well, even in my undergrad in my liberal arts college, I took a linguistics, anthropology linguistics class, and they actually had a book there called ‘Metaphors We Live By’, and that title just stood out to me because I was like, yeah, we live by, you know, by metaphors. And so, anyway, I just really, really appreciate this. This is a long time coming. I’ve been wanting to talk to you forever.

Cheryl Koehn:  

Ditto, ditto. It’s been a long time coming, wanting to come on the program. 

Cheryl Crow:  

Oh, yes. Yeah, I’m so happy that you’ve shared your wisdom. I just, this is definitely going to be an episode I come back to. I don’t always like listen to episodes repeatedly because I’m like, you know, you get tired of hearing the sound of your own voice, to be honest. But no, I feel like I just, I know that everyone who’s listening has resonated with at least five of your tips of wisdom. So, thank you so much. And if you haven’t, I’m sorry. No money back guarantee. It’s a free podcast.

Cheryl Koehn:  

Thank you so much. You know what, it’s always a joy to listen to you and to see and listen to you and interact with you, Cheryl. I so admire what you’re doing and I wish you the very best over the holidays.

Cheryl Crow:  

Oh, my gosh, thank you. You too. All right. Bye-bye for now!

Cheryl Koehn:

Take care.