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General Education, Podcast

What does Remission Mean to Patients? With Eileen Davidson

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Summary:

In episode 142 of The Arthritis Life Podcast, Cheryl Crow and Eileen Davidson delve into an often confusing topic: rheumatoid arthritis remission. In a fun role reversal, Eileen takes the lead in interviewing Cheryl for this episode, which was originally part of the “Talk Over RA” campaign* designed to help patients understand what remission really is (and isn’t!).  

After defining what remission is, Cheryl and Eileen take a deep dive into the importance of finding the right medical treatments and aiming for remission.They also dive into how small lifestyle changes, like setting boundaries and pacing yourself, can help you feel a sense of control over your symptoms.

If you’re feeling overwhelmed by your diagnosis or like remission will never be in your reach, their stories will remind you that you’re not alone, and life can be fulfilling with the right approach.

Disclosure: The “Talk Over RA” campaign is supported by Abbvie. Arthritis Life Podcast host Cheryl Crow receives no monetary compensation for this work, but Eileen, who is featured in this interview, does.

Episode at a glance:

  • Personal Journeys: Real stories from Cheryl and Eileen about their experiences with RA and how it has affected their lives.
  • Hope for Remission: Insightful discussions on what remission means and the steps towards achieving it.
  • Managing Symptoms: Tips on dealing with pain, fatigue, and emotional challenges associated with RA.
  • Self-Care Strategies: Practical advice on pacing oneself, setting boundaries, and building a supportive community.

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:

Eileen Davidson “Chronic Eileen”

 Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research – Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints,  Healthline, Chronic Eileen or can be found being a mom to her son Jacob.

Cheryl Crow

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

Episode links:

Full Episode Transcript:

Cheryl:  00:04

I’m so excited. Actually, I think you’re the first person since the pandemic that I’ve been able to do an interview with partly in person, which is exciting. So, I’m here with Eileen, and she’s going to be telling us a little bit about this is a little bit of a preview of this episode of the Arthritis Life podcast where Eileen and I talk about a really cool campaign called Talk Over RA. So, can you tell everyone a little bit what is the Talk Over RA campaign?

Eileen:  00:34

Yeah, so the Talk Over RA campaign takes place in Canada, so it highlights Canadian rheumatoid arthritis social media advocates. It is a campaign that is supported by AbbVie, but we are free to create whatever content and be as creative as we want, centered around speaking about living well with rheumatoid arthritis or talking about remission and like, how to have engaging conversations with your healthcare providers. And so, this is my, was my fifth year involved in the campaign. And I didn’t really want to just tell my story this year. I wanted to highlight some other voices, really powerful voices in the community. And that’s obviously why I picked you, because, yeah, you offer a perspective of not just patient, but also a healthcare provider and somebody who is so involved in research, you are definitely somebody to look up to with when it comes to reliable information.

Cheryl:  01:38

Oh, thank you. That’s so nice. And I know you — I love the idea that you got lots of voices, because there is such a diversity of experiences of rheumatoid arthritis, of remission. And I’m just curious, what were some of the themes that you saw when talking to different patients and providers in the experience of understanding remission, confusion about maybe how to achieve remission, you know, what are some of the themes? 

Eileen:  02:03

Well, there was definitely some themes I noticed. Because for the last two years of the campaign, I’ve been interviewing rheumatologists from different parts of the world. So, I spoke with a Brazilian rheumatologist, a rheumatologist from the UK, from the States, from Canada, and this year from India. And so, I wanted to grab, like, a global perspective of what is remission, and kind of see if I noticed any differences elsewhere. But to be honest, across the whole globe, that I’ve covered anyways, remission means the same thing, and that means not a cure, but low to no disease activity. I learned also that many people still experience pain and fatigue, although by blood work, they can be considered in remission. Learned why that happens. It’s comorbidities, irreversible joint damage. And then, when I spoke with patients, there was a common theme of being hopeful for remission in the future, and no story was the same of how somebody achieved remission, because it’s very individualized. What works for one may not work for another. So, yeah, there were some definite common themes. 

I made sure to ask each rheumatologist as well, like, can somebody achieve remission without medications? I thought that’s a really important question, because there’s a lot of misinformation out there about diet or supplements can cure rheumatoid arthritis, and that sometimes I actually only heard from two people that it was possible. Otherwise, they said no. So, there’s, I guess, a little bit of controversy about yes, can they, or no, can they? So, it’s bottles down to it being extremely rare. And also, down to what type of rheumatoid arthritis they have, how soon they got into a treatment plan, what their treatment plan was, and all sorts of things. And, you know, there’s a bunch of other factors, how much wealth does the person have, the location where they live, the support network they have? So, yeah. 

Cheryl:  04:11

That that makes a lot of sense. And I know that some of that controversy, at least in some of the rheumatologists I’ve chatted with, is coming, comes from the difficulty of diagnosing rheumatoid arthritis in the first place. And some of the rheumatologists, I don’t know if they said this on the record before, but think that maybe the people who achieve remission unmedicated potentially didn’t even have rheumatoid arthritis in the first place. Maybe they got misdiagnosed. Maybe they had, like, a temporary, you know, reactive arthritis that was going to go away anyway. So, but, yeah, it can be. It can, you know, we don’t know for a hundred percent sure, but it is, is there an anecdote here or there of people achieving remission unmedicated with rheumatoid arthritis? Yes. But the wealth of evidence and the vast, vast majority of studies that look at thousands of patients you know, show that medications are required for the majority, and that’s, I know, a big point of passion for both of us is just educating patients on that. 

Not to say that, if that’s, you know, we are all welcome as human beings to have our own hopes and dreams and goals. And but for me personally, when I set goals, I want to know, I want to set a realistic goal. To me, I don’t want to spend my whole life trying to achieve something that’s impossible, like, for my body, like I’d rather make it achievable goal. So, maybe my goal that might be more realistic would be maybe managing some of my symptoms really well through lifestyle, and then maybe be able to wean down slightly, for example, on methotrexate, which can be done, you know, more realistically than saying — I mean, I just, personally, I don’t value an unmedicated experience versus a medicated one. It’s just not part of my personal value system. It’s like, if I can take a medication and it works, I have no problem with that, you know.

Eileen:  05:48

Yeah, and I think that also comes later in your diagnosis too, right? Like, I had a phase in the beginning of my diagnosis where I tried some of the cheaper, standardized drugs that they start you on, had side effects, wasn’t having relief. Got fed up, you know, and I was on the internet, Dr Google, and going into groups, and you find all these people that are saying, like dark tart cherry juice will reduce your symptoms, so you just got to take a whole bunch of glucosamine and turmeric and this and that. And I think I was in my grief, like, the grief stage, and I was in the bargaining and the denial phase. So, like, I cut off my rheumatologist, cut off medications, and just kind of, like, didn’t believe I was sick. And just thought, if I do a bunch of natural stuff, like these people are saying, then I should be fine. But after about six months and feeling like I was progressing getting worse, I went to the Internet and I started to look up, well, what happens with uncontrolled rheumatoid arthritis? 

And that was really kind of like eye opening to me, because heart disease was one, and when I was diagnosed in 2015, I had a Nan who had been living with RA for 40 years prior. And she was quite disabled from the disease. I don’t think I ever saw her walk more than a few feet. She actually passed away the same week I was diagnosed from heart attack. So, it was just like, yeah, I better accept that I have to be on medications for the rest of my life. And now that I have actually started it and I’ve gotten used to it, I’m not scared of them. I’m actually quite relieved from them and very hopeful, because, like you, I’m very involved in research, and, like, trying to pay attention to all what’s coming up. And, like, some of the medications that I’ve been on have been only been around for a few years. And that’s like, yay, there’s people working on our disease.

Cheryl:  07:55

Yeah, yeah. It’s really, it really is. You know, rheumatologists will say this, and sometimes it feels confusing to a patient to hear, but that this is the best time in history to be diagnosed with something like this. Of course, I don’t wish it upon anyone. But given that you are having this, this is your reality, right? Acceptance is taking what’s offered in your current reality. That’s my favorite definition of it. So, life is offering you rheumatoid arthritis. You don’t get the choice to not have it. It’s happening. So, the sooner we can accept it and accept that, okay, there are effective treatment options, that’s huge. So, thank you for involving me in the campaign. 

And so, when you listen to the rest of the episode, you’re going to hear, you know, Eileen in the interview, interviewer spot. And normally, I’m in the interviewer spot and I’m talking to an interviewee, but she interviews me, and I get to kind of ramble a little bit and share. I think, I think I do, sometimes, as the patient, I get a little confused about how realistic a full remission might be for me this far down the line of having it for 22 years and being on my fifth biologic. But it is always great to hear that there’s, you know, there’s hope. I don’t — did you talk to Christina, The Arthritis Dietitian? And I think her story is great because she’s had it the same amount of time I have, 22 years, and she just hit remission for the first time, I think. And that so that is, like, I wanted to make sure that I integrated that perspective in to this episode, too, that there is always room for hope. So. 

Eileen:  09:23

Yeah. And like, I’m currently not in remission. I’ve almost been in remission before. And, you know, there’s things that happen in life that can make us fall out of remission. And so, yeah, like, I didn’t want to just share my story. I wanted to share other perspectives.

Cheryl:  09:39

Yeah. So, I encourage people, after listening to this episode, don’t click away yet, to check out Eileen’s handle as well on all your social media. You know, Chronic Eileen, right, and your website, and I’ll put links to those in the show notes too. But thanks again for having me on your campaign and for allowing me to share it also on my podcast. All right, we’ll move on to the episode now. Stay tuned.

Eileen:  10:05

I’m here today with Cheryl Crow from Seattle, Washington to talk about remission with rheumatoid arthritis. Now, I know many of you already know who Cheryl is, but can you tell us a little bit about yourself and the amazing work that you do, and who you are, and why I have you in this conversation today? 

Cheryl:  10:24

Yeah, thank you so much. Yes. So, as you said, my name is Cheryl Crow, not to be confused with the famous singer. But I am 43-years-old, and I was diagnosed with rheumatoid arthritis in 2003 right before my 21st, or right after my 21st birthday. So, I’ve been living with it a little over half my life, and I’m also an occupational therapist. And I actually initially specialized in working with children with a variety of developmental disabilities, but then I’ve pivoted to help serve people with inflammatory arthritis, because with connecting with the community, I just know there’s so many questions patients still have, and they’re not really receiving enough — there’s one my soapboxes. 

I already got my soapbox — but I feel like a lot of patients, like, are just given this one 20-minute appointment every three months, and there’s so many more professionals and so much more help they could be getting. Like, whether it’s occupational therapy, physical therapy, counseling, social work, you know, personal trainers, there’s kinesiologists. So, that’s one of my passions. Is helping, helping just educate and empower and inspire people with arthritis. That’s my tagline for Arthritis Life, which is my patient education organization, and I also host the Arthritis Life podcast. And I’m also a mom, and I have a dog. And I have a lot of things, I’m kind of all over the place, passionate person. So, I’m very happy to talk to you today.

Eileen:  11:49

I’m really happy that you agreed to talk with me, and given that you do so much and that you also know so much about navigating life with rheumatoid arthritis, not just as a patient, but as a healthcare provider as well, and content creator, and then just watching you do everything that you do, I think you are an incredible inspiration for so many of us that I knew I wanted to talk to you about what remission is with rheumatoid arthritis, because it’s a little bit of a confusing topic, especially if you’re newly diagnosed. So, my first question for you is, what do you personally think remission is?

Cheryl:  12:30

I, first of all, yeah, I’m so glad you’re having this conversation. I think remission is like a very. it’s one of those things where, like, you know it when you feel it or, you know, it’s hard to put it into words. But for me, personally, it has changed my definition or what I’m searching for in my own health remission wise is different now 21 years into it than it was when I was first diagnosed. So, I’ll just start with initially, remission meant 100% perfect disease control. So, the idea when you when you have a condition like rheumatoid arthritis, is that there’s no cure at the time, but we have different treatment, treatment options that medications that can, are likely, statistically, to give you very good disease control and potential and hopefully put you into remission. So, when you first get diagnosed, your eyes are on that prize, I think, of let’s, you know, I have pain, I have fatigue. Let’s nip it in the bud and get myself and get my disease under control, shoot for remission. 

And the reason I said it’s different later on is because there are certain — I’m trying to say this in a very like down to earth way, not get too like clinical with it. But, you know, there are different variables that make it less likely for you, individually, potentially, to achieve complete remission, like complete disease control. No tender joints, no swollen joints. Now, 21 years into it, my prognosis for reaching a full remission is a little lower, but I still am shooting right now for — my goal, and this is how my doctor and I talk about it, honestly, is to just have my either pain or stiffness or fatigue be such that it’s not distracting me from living my life. So, it might kind of be like a quiet amount of background noise sometimes, but it’s, I’m still able to do the things I love, and, you know, I’m still able to walk my dog sometimes go swing dancing, you know, do stuff with my son. And that’s what remission means to me now. As an occupational therapist, I’m always tying it to, like, functional like, what am I able to do as a result of remission? It’s not just about what’s happening on the cellular level, it’s about what I can do in my life. 

Eileen:  14:47

That’s incredible. And you actually answered my next question, which is what does controlled disease look like? Which you perfectly described it right there. Not having RA make all that noise in the background, not having symptoms disrupt our day. I really like the way you put that. I also really like the way that you put — you have a definition of remission in the beginning of your diagnosis versus a definition now. I’ve been diagnosed for 10 years, and I would definitely say, I never really thought of that. At first, you know, I was so wanting to cure everything. I didn’t want to feel any of this pain anymore. 

But now, you know, a decade into my diagnosis, it’s like, I’ve learned to accept the pain will be there. I just want it minimal, you know. I want it, you know, gone as much as it can. And I have accepted that it probably won’t completely be gone. There will still be some symptoms there, but what is the lowest amount of symptoms that I can get to. Even actually giving me that perspective of looking at it now, the changes that have happened over my diagnosis journey. So, as a occupational therapist and somebody who has been living with RA for two decades, what are some necessary steps that patients need to achieve, or they need to take to achieve remission?

Cheryl:  16:07

Yeah, and I think I just want to say one more thing, I’m sorry, is it okay? Because I forgot to say about remission that there is a very — I think it’s important for patients to know that there really, there isn’t one universal agreed upon definition of remission, at least that I’m aware of in clinical trials. The definition is usually really strict, like zero tender joints, zero swollen joints, zero markers on blood work or imaging signs, like an ultrasound sign of active inflammation. But some practitioners on the ground, you know, practicing in real life, you know, are aiming a little bit more. And I think that’s what my rheumatologist is aiming more for, like, well controlled disease, like as well controlled as it can be. Again, I was diagnosed with aggressive, severe rheumatoid arthritis in 2003 and it wasn’t caught that early. Now, those, you know, so the prognosis for me is I have, I’ve, quote unquote, ‘failed’, or some of the medications have worked for me and then not worked as well anymore in the future. So, I have kind of these things that make the full remission a little less likely. 

But a lot of the times, your doctor can tell you whether remission might be, full remission, might be more likely to you. Even though I was diagnosed with severe RA, not to contradict myself too much, but I was actually, I did actually achieve full, complete medicated remission after my first medication I tried. So, I just want to make sure people know, or just throw it out there that it’s okay if maybe you say, why is it that one doctor says remission has to be perfect disease control or no symptoms, but another doctor is okay with there being a few. It’s a) because there isn’t really one completely strict, agreed upon definition; and also because they might be tailoring, the doctor might be tailoring their recommendation or their definition of remission to your specific situation. And the sooner as patients — I’m trying to imagine someone like newly diagnosed listening to this — I know it can be really difficult, stress and anxiety wise, to have all these gray areas. It was so, that has been the hardest thing for me in coping with rheumatoid arthritis, is the gray area, right? It’s not even, like, there’s just one thing we have to all do and we can all get to remission. There’s like, well, maybe this, you know, a lot of rheumatologists like to say it’s an art and a science, you know. 

And so, the sooner you can wrap your head around that, I know it’s frustrating, but it’s like, happiness is reality minus expectation. So, if your expectation is that someone is going to come down and like, tell you the black and white, one, you know, step one, step two, step three, perfect answer. And then, it’s cut and dry, and it’s not a gray area. You’re going to be really disappointed, because it’s not like that. But you can still live a good life, like you — and I think we are hopefully a testament to that — that you can persevere. And you have your good days and your bad days. But you don’t need to be in complete remission to have a good life. So, don’t, don’t — I don’t know if that’s contrary to the to the point of this video, but I also think it’s important to recognize that some people may not get into full, full perfect disease control. You still, there are still things you can do to improve your quality of life and have a good life, and so don’t hitch all of your hopes really, necessarily onto one particular thing. That’s what I would say. 

Okay, long story, long story, short story long. No, long story long. You were asking, what were the necessary steps for patients to take? So, the first thing is talking to your doctor. Like, because right now, you know, across rheumatology, the best practice is something called shared decision making, which I know you know a lot about, which is basically, I mean, it’s funny that there even has to be a phrase for this, but it just means, like, literally, a back-and-forth conversation with your doctor, where you get to, as the patient, say what is important to you, what risks are you willing to take? And then, your doctor is willing to say, or has to say, you know, given their understanding of the human body and the different treatment options, what are the pros and cons of different treatments? 

So, for me, the bedrock of my treatment plan is medication. So, that my doctor and I talk a lot about medications and choosing which one to try next if one of them isn’t working well. A couple other things that you can do to get into remission would be, you know, address lifestyle variables that can help, you know, control your symptoms as well. Things like exercise is huge for me, strength training and cardio, vascular training, sleep prioritization. Sleep is the forgotten lifestyle variable. Everyone wants to talk about diet and exercise. Sleep is extremely important. Making sure when I prioritize my sleep, I feel a lot better — oops, sorry — even when I then, when I have — that’s given me more bang for the buck than any individual, like, diet I’ve tried, for example. So, there’s looking at your lifestyle stuff, nutrition, sleep, stress management and exercise, along with medications. For me, those are kind of the, those are the things I do to try to achieve remission.

Eileen:  21:20

And are you managing your rheumatoid arthritis doing a lot of those things right now? Do you want to walk us through what you do to manage? 

Cheryl:  21:28

Yeah, yeah, like a day in the life kind of thing? Well, so yeah. So, I’m on, you know, medications, again, prescribed by my doctor, very individualized to my situation. And then, I also, I have personal training sessions for me. I like to think I’m really self-disciplined. I used to, before my diagnosis, I used to be a runner. I would run all the time. I played soccer, and I’ve had to accept in my older age, now that my 40s, I’m like, I just am not getting myself out of the house unless I have an appointment with someone when it comes to exercise. So, well, sorry, I have an exercise bike. I’m good at doing cardio on my own, so I’ll do the exercise bike at home. But when it comes to strength training, having that personal trainer has been super helpful. So, I see them twice a week, and then I try to do my own home strength workout a couple other days a week. I see a therapist for for, you know, mental health, stress management. And I also, I think it’s very therapeutic to also do things in your life that don’t have anything to do with arthritis, you know. Like I try, I’ve started doing what we in occupational therapy call we call them meaningful occupations, or just meaningful activities. So, I’ve started painting and doing more art projects. It’s literally paint by number. Like, and I was judgmental about myself, like, oh, my gosh, paint by number. Like, you know, you’re 43, like, what are you doing? But it’s like, whatever. It brings me joy, you know? So, you know, being with my dog. 

And I think, I think a trap that some newly diagnosed people can fall into is making your whole life about symptom control and about achieving remission, but the goal of achieving remission is to improve your quality of life. And if everything you’re doing to try to achieve that is making you miserable, then what is the point? You know, like, it’s so I try to keep that big picture in mind. And again, I kind of mentioned dietary interventions in my personal body haven’t really done a lot to manage my RA so they’re not a big part of my puzzle, my puzzle. They’re kind of a small puzzle piece in my overall disease management. But I know, it feels like that’s kind of rare. A lot of people notice that they do have, you know, dietary triggers, and they feel good when they avoid those things. So, I mean, I try to overall eat, like, you know, a fairly healthy eating pattern. But I also know that I’m a little bit — with having an anxiety disorder, too, I’m at risk of, like, obsessing over food. And actually, even my own therapist was, like, I really wouldn’t recommend, like, any sort of restricted diet, like just so that would be, that’s not unless — I’m just not interested in it, you know. I just, it’s just not my thing. 

I really enjoy exercise and that’s where I’ve gotten a lot of improvement in my fatigue and pain. So, and then I mentioned sleep, being a sleep diva, like, I literally actively advocate for my need for sleep. And I have to do that to my son, my 10-year-old, and my husband being like, “Okay, if you guys are going to stay up late, I’m going to go sleep.” I have a bed in my office. And, you know, I must just like, I need to sleep, you know, like, I mean, that’s huge. A lot of patients feel bad if they, you know, they feel like people will pressure them to stay up late. And I just try to say, you know, you wouldn’t pressure someone, you wouldn’t say someone should just, like, skip meals or not eat, right? Like, why would you say someone should not sleep, you know? So, feel free to interrupt me. But I could go on and on, but those are the things that I do.

Eileen:  24:54

No, that’s great. I was actually going to ask you, how do you manage your sleep with rheumatoid arthritis? Yeah, but you mentioned that you prioritize it, and you tell people around you that when you need to sleep, you need to sleep. 

Cheryl:  25:07

Yeah. And I, like, plan my day around it, and in terms of if I know that, like, for example, I might have an early call the next morning, I’m gonna try to get to sleep early. If my body doesn’t let me, then I’ll try to plan the next day for, like, a little 20-minute power nap. And I also do, I have just a couple little tools, like, I sometimes get hip pain on the right side, and so I sleep with a pillow between my knees, and that really helps. And I have a weighted eye mask, because I’m very light sensitive. And so, that really helps, actually, especially in the summertime. And, I mean, I live in Seattle, so it’s cloudy most of the year, but that helps. And, yeah, sleeping, you know, I’m married, and sometimes I sleep alone, and I don’t, we both — my husband’s an engineer, so luckily, he’s very like, I feel like we’re both very like engineers about it. We’re like, output, like, input sleep, output happy Cheryl. Like, he understands that if I haven’t slept well that, like, I need to, if I sleep in my, you know, separate bed for that night to catch up and get some good quality sleep, we’re all going to be happier. So, you know, yeah.

Eileen:  26:17

I sleep the best when I’m single, so.

Cheryl:  26:20

Well, and so I facilitated support groups for people with rheumatoid arthritis, and it’s, I can’t tell you — or other chronic illnesses that are similar — so many people sleep separately, and it’s okay. Like, it’s like, a big myth that if you’re, you know, dating someone or married, that you have that, like, it’s a bad thing to — so, that would be a myth, would be that you know it’s gonna be bad for your relationship to sleep separately. I mean, it’s every relationship’s different. But, yeah.

Eileen:  26:47

But speaking of myths, what are some myths around rheumatoid arthritis and remission? 

Cheryl:  26:53

Yeah, I have to say, honestly, the biggest one I see is that, like, if you just try hard enough, you can control, you could get to remission naturally. Like and this is not to diss or judge any — if someone, there are people out there, it is rare, statistically, regardless of how I feel about this, this is literally factual information that it is very, very rare to sustain remission naturally. So, to me, it doesn’t — I think a myth is that if you just change your diet, if you just take a supplement, if you just try hard enough, if you just do yoga, you’re going to be able to get in remission. I think it’s really a dangerous myth. It’s probably the most dangerous myth out there, because if you cannot turn the clock back on permanent, the joint damage is permanent. So, at this point we can’t turn the clock back. So, a lot of patients, it does, if you don’t understand the data, it totally makes sense to look initially and be like, “Oh well, I’ll just try natural first. And if natural doesn’t work, then I’ll go to these scary sounding treatments.” But actually, it’s completely reverse. The people who are have early, aggressive treatment with medication are more likely to actually be able to sustain remission long-term and potentially be able to wean. I think what’s more realistic would be potentially being able to wean down on your medications. There are people who have sustained medicated remission for, and then slowly, who wean all the way off. But it’s very rare to just completely go natural from the very beginning. And so, that’s a really the, I think, the biggest one.

The other, I guess another one I would say, would be that if you’re in remission, it’s going to stay forever. I hate to say that, but it’s like we know from looking at like, let’s say, you might have had a friend who’s had cancer. Let’s look at the word remission for cancer. It’s like, you can be in remission for a certain number of years, but the cancer can come back. It’s kind of the same with rheumatoid arthritis. You might — I was in remission on one medication, and then my body kind of changed. Your body changes over time. And that really shocked me. I had no idea, because it was my first medication that I was on remission. On the first medication I went on, I went into remission. And I thought, great, I’m just going to be in this medicine for the next, like, 80 years, because I’m going to live to be 100, ‘cause I was 20, you know? And then, so just on, I think, you know, ignorance is bliss, knowledge is power. Like, I really wish I had known that that was possible, because it really shocked me when I went out of remission, and it was actually harder than my initial diagnosis, my first ending of remission, because that’s when it hit me that this is not a straightforward disease to manage. I really thought it was straightforward, because it had been for those six years.

Eileen:  29:38

How long was your remission? 

Cheryl:  29:40

Yeah, six years, yeah.

Eileen:  29:44

You said your body changed, and that’s when you went out of remission? 

Cheryl:  29:49

I mean, my understanding, and this might be, you know, it’s such, I should go back to my doctor and clarify. But I think my understanding is that my body made antibodies to the medication. And so, it no longer was effective, yeah. But my body also changed after pregnancy, the medicine I had taken before, it didn’t work anymore. Yeah.

Eileen:  30:10

In my case, I was almost in remission on one drug. And it worked for a couple years, but then Covid happened, and I had to change from getting the infusion to self-injection, and it threw me out, and then I had an injury, so I’ve been on the road to remission again. But this round, I’m far less stressed and anxious about it. I’m more relaxed, kind of like I know that if I obsess about it, like you said, it’s just going to make it worse. Gotta live a little, too. I also wanted to mention that I did several interviews for the last year for Talk Over RA with rheumatologists around the world, and I learned a very interesting fact that I didn’t know before that was that biologics usually have about a four-to-five-year lifespan that they work for patients. So, that was really eye opening to me And I think important for patients to know, because we come up to that time, what if our symptoms are coming up and we need to be able to talk to our rheumatologists about that? I thought that interesting that you brought that up yourself. And, yeah.

Cheryl:  31:29

That was heartbreaking. Yeah, I wish I had known then, because there’s certain life goals that when I was, you know, that was the best remission I ever had when I was also younger, you know, I was in my 20s. So, there’s like, life goals that I kind of thought I’d be able to do, like, run a marathon, but my thought that I was, like, putting off till later. And now, I mean, not that you can’t, some people with rheumatoid arthritis run marathons, but there’s been other things that have happened, like, I’ve gotten in a car accident, stuff like that, that have made, you know, I that have made it less likely. So, I just think it’s good, I think it’s a hard message to give patients in the beginning, because you want to say like, this is the best time in history to have a diagnosis of this condition of rheumatoid arthritis because the medications are so effective overall, the rates of admission are higher than ever. And that is all true and valid. And it’s not quite so straightforward as just try this medicine and you’ll feel better forever. You know, you’re going to have to have ups and downs.

Eileen:  32:27

And another thing that they’re seeing is there’s far less deformed hands, far less disabilities, less joint replacement surgeries. So, lot of hope for a better life with rheumatoid arthritis.

Cheryl:  32:42

Yeah, yeah. 

Eileen:  32:44

So, we probably answered all the questions. You were fantastic. I didn’t even ask, have to ask some of them, you told the story yourself. That’s because you are definitely the expert here in lived experience and in healthcare. And I would like to ask if you have anything else you’d like to add? 

Cheryl:  33:06

Yeah, I think, that’s a good question. I think this is just a really practical tip, but it always helps before you see your doctor, to take some time and write down your questions ahead of time. And it’s sometimes people ask me, when I run the support groups and education groups, they’re like, “Well, it seems so silly, but can I ask them about this or that?” And someone I even said, like, “Well, I feel stupid, but can I just ask them, like, what is remission? Or what do they think, what do they think is the likelihood I’m gonna be able to get it?” I’m like, no, that’s exactly the kind of question that they should be able to answer, you know? So, I would almost say, like, just little point of inspiration when you think about talking to your doctor, like, no question is too small. Like, tell them about what is going well in your life, what isn’t, like, paint them a vivid picture of what you can and can’t do. 

And know that, you know, you might be, you might be irritated at hearing people say things like, you know, take care of your mental health or manage your stress, but really, it does. I was really stubborn about going to therapy for a long time. I only went after I had my son and I was having — it was now, now that I have my son, I’m like, well, it’s postpartum anxiety, so now I can label it, and it’s like, valid to go to a therapist. But of course, we ended up, yes, we talked about postpartum stuff, but we also talked about chronic illness stuff far, far more than I expected, and it was so helpful. So, you know, even if you’re, you know, doing well with your symptoms or whatnot, it’s still you don’t need to, like, you don’t need to reach some like, horrible level of mental health to go to therapy. If you’re just struggling at all with just — some people gaslight themselves. They’ll be like, “Well, it’s just rheumatoid arthritis.” So, they’ll even use the fact that remission is possible as like, a way to say, well, then it’s not that bad. It’s still a big change in your life to get a diagnosis like this. It’s okay to ask for help, whether that’s from friends or family, whether that’s from a therapist, a co-worker, you know, just give yourself permission to feel your feelings about this. So, those are all my soap boxes.

Eileen:  35:12

Now, I know you’re a huge advocate for two types of therapy. Do you want to mention what those are? 

Cheryl:  35:17

Oh, yeah. Well, the first is Acceptance and Commitment Therapy. I’m having brain fog so I don’t even remember what the second one is. What’s the second therapy? 

Eileen:  35:25

Occupational?

Cheryl:  35:26

Oh, occupational, sorry, okay. Yeah, the word therapy, like the word remission, can be like difficult to define. Yeah, occupational therapy, that is what I do.

Eileen:  35:37

Cognitive behavioral therapy? 

Cheryl:  35:39

Oh, cognitive behavior therapy. Okay, so the two kinds of therapy, like talking, talk therapies, yeah, cognitive behavior therapy is like the kind of the classic, if you will. And that’s where you think about how your thoughts and your behaviors and feelings all interrelate to each other. And actually, Acceptance and Commitment Therapy, which is my personal favorite, just full disclosure, it actually is, technically it was kind of born out of cognitive behavior therapy, but it’s like if cognitive behavior therapy and mindfulness-based practices had a baby, because it’s really, there’s a mindfulness and self-compassion piece that I find is particularly helpful with chronic pain and chronic illness. 

So, in Acceptance and Commitment Therapy, I know a lot of the people are like, “Acceptance? That’s the last thing I want to do,” but it’s about the definition of acceptance in ACT, which is Acceptance and Commitment Therapy. The definition is taking what’s offered. It’s not about liking it. It’s not about feeling at peace with it. It’s just literally feeling what’s happening to you, taking the minute to notice it, make space for it, and take what’s offered. Like, actively say, life is offering me this. Life might be offering me right now, joint pain. It might get better in the future. It might get better, and then worse, and then better, and then worse, like, because in my case, over 20 years, better, better, better, worse, better, better, better, worse. You know, it helps you to cope with those fluctuations really well. And you say, okay, like, after you feel the present moment and make space for it, no matter how painful or uncomfortable it is, then you focus on the commitment part, which is committing to your values and living a good life within the constraints of whatever’s going on with you. 

So, not to say, like, “I need to change my maladaptive thought patterns about it,” which is the part I don’t like about traditional cognitive behavior therapy, where you’re like, I’m just going to think differently. That does work sometimes, sometimes I can think differently, and I’m like, yes, I’m catastrophizing because I have anxiety. So, that totally happens sometimes. But other times you’re like, I’m not catastrophizing. Like, this is just hard. And I need to still say, like, “Okay, this is hard, and,” instead of trying to change how I feel about it, can I do something turn towards what’s meaningful and important in my life and still have a good life with this, like, with this pain, with this uncertainty, and that’s been, bar none, the best, most helpful approach for me to cope with this. So.

Eileen:  38:08

You know, I haven’t actually done acceptance — what was it called? Acceptance —? 

Cheryl:  38:12

Acceptance and Commitment Therapy. A lot of syllables.

Eileen:  38:15

I haven’t done it yet. But yeah, it sounds interesting. It sounds like something that if I ever get the opportunity, I’m probably going to take it up. 

Cheryl:  38:24

Yeah, and there’s a great book, you know, it’s like $20 it’s called ‘The Happiness Trap’. There’s an updated version, I think, from 2022 and it looks like just a pop psychology book. But it is, Dr. Russ Harris is a psychologist that is really specialized in Acceptance and Commitment Therapy, and he explains it. He’s the first one that like, explain it in just a way I completely understood. Like, my therapist tried to explain to me at first, and I was still like, but why? Like, why? This sounds like unsettling. Like, why am I, like —? But he explains it so well. Like, it’s that like, like, this is your life, whether you believe it or not. Like, the suffering is part of life, period. Like, whether you have rheumatoid arthritis, whether your childhood was great, like my childhood was great, there’s still suffering. It’s part, that’s just inherent to life, is struggle and suffering. 

So, instead of trying to achieve happiness by controlling everything and making our lives perfect, and then we’ll someday achieve this elusive idea of happiness, you just say, what if I can? Happiness is actually a side effect of engaging in what’s meaningful and valuable to you and accepting the world as it is. Then that’s a more harmonious way to live, and it’s helped me live better with those periods of time when I haven’t been in complete remission. You know, that’s why I say with caution, you aim for the stars. Shoot for the stars. But also, don’t think to yourself that if you don’t get into remission, then your life is over. Because that’s not true. Even uncontrolled rheumatoid arthritis, you still have choices to live a good life within that construct. It’s not an easy life, but you can still have a good life. So, that’s kind of what I’ll leave people with. Unless you have anything else, don’t let me keep talking, because I’ll talk all day. 

Eileen:  40:07

I could listen to you all day. But in the interest of time and people’s attention spans, I would like to say thank you so much for having this chat with me. I, as always, learn from you or get reminded of, you know, just keep fighting, keep moving, and joy in life. You always remind people what’s, you know, what’s joyful in life. And so, thank you. Sweet. Thank you. 

Cheryl:  40:34

Thank you. You do so much for the community. I mean, you inspired me to share my story more publicly, even though I’ve had it longer than you. You are one of the first accounts I found when I started sharing on social media, in addition to just random vlogs and stuff. So, thank you. Very happy to be here.

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