kristen
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How can Applied Behavior Analysis and Mindfulness help People with Chronic Illness? Kristen’s Story.

August 19, 2020
62 min read
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After getting diagnosed with a chronic illness, you usually have to change a lot of your daily routines and behaviors.

Kristen is a Board Certified Behavior Analyst who lives with Rheumatoid Arthritis and Sjogren’s Disease. On Episode 7 of the Arthritis Life podcast, she and Cheryl explore how behavior principles and tools and mindfulness can help people with chronic illness improve self-efficacy, empowerment and engagement in valued activities.

Kristen delves deep into the science behind behavior analysis and shares how she has used data to help her track her symptoms such as brain fog and fatigue. She also shares how mindfulness and acceptance based therapies can help people living with chronic illnesses achieve a better quality of life.

kristen

Kristen also helps other chronic illness warriors apply the principles of behavior analysis to their unique health and lifestyle management goals through 1:1 behavioral coaching. In addition to being a chronic illness warrior, Kristen is also pursuing a PhD in Cognitive and Behavioral Sciences, she is married to her high school sweetheart, and loves hiking and being outdoors with her partner and three dogs. 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to successfully 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.

Links discussed in this episode:

Time breakdown: 

  • 01:30 – Introduction
  • 03:00 – Kristen’s diagnosis story for Sjogren’s and RA
  • 5:00 – What is Applied Behavior Analysis (ABA) and who are Board Certified Behavior Analysts (BCBAs)? 
  • 6:30 – Explanation of how ABA can be applied across diagnoses
  •  8:45 – Explaining controversy around ABA for neurodiverse populations
  • 12:20  – Examples as Kristen utilizes Behavior Analysis as a patient to track symptoms: CBD tincture for fatigue and brain fog
  • 15:20 – How tracking data can be a powerful tool to combat overwhelm
  • 19:17 – Importance of rest and learning how to rest without guilt
  • 21:40 – How thoughts, behaviors and the environment influence each other 
  • 25:20 – How Kristen balances being a PhD student with her mental health 
  • 27:45: Kristen’s advice for setting boundaries and learn how to say no
  • 29:00 – Cheryl’s experiences having difficulty saying “no” to things when her health is going well and Kristen’s 80% rule
  • 31:20 – Kristen’s experience with going to therapy and how she manages her stress through mindfulness and ACT 
  • 36:00 – What does Kristen’s mindfulness practice look like on an average day
  • 39:00 – How Cheryl & Kristen cope with uncertainty and find acceptance with their conditions. 
  • 43:10 – Behavior Analysis Coaching with Chronic Illness: how does it work?
  • 46:00 – Balancing act between accepting present and tracking data for future
  • 48:00 – Life Coaching vs Certified Health Coaching versus Board Certified Behavior Analysis
  • 51:00 – Final thoughts

Full Transcript:

[00:00:00] Cheryl:

[Introductory music] 

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program.

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis.

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.

So, when you’re diagnosed with a chronic illness, you’re suddenly asked to change a lot of your daily behaviors, and it can be super overwhelming. And today I’m talking to Kristen Brogan, who is a board-certified behavior analyst who also has a unique perspective ’cause she’s lived for two years with rheumatoid arthritis and Sjögren’s disease. So, she is gonna share how she has applied the principles of behavior analysis to her own experience as a patient. And she’s also gonna explore things like mindfulness and acceptance. And so, I cannot wait to share this with you. 

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness. No topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

So, I’m so happy to have you here, Kristen. Can you tell us a little bit of just the basics about yourself? 

[00:03:16] Kristen:
Yeah, absolutely. Thank you so much for having me here. I’m really excited to be here. My name is Kristen and I am 33-years-old. My diagnoses are rheumatoid arthritis and Sjögren’s and I have been living with both of those for about two years now. April 2018 is when I was diagnosed. In terms of what I do, I’m currently a doctoral candidate, so I am pursuing the PhD. I’m really crossing my fingers that it happens within the next year. The pandemic has definitely put some wrenches into that plan, but PhDs never go as we plan them. So, it’s okay. But the PhD will be in cognitive and behavioral sciences. And then, I have a Master’s in applied behavior analysis and I’m a board-certified behavior analyst. 

And currently, during kind of my day job, I guess, if you will, I use the tools of applied behavior analysis and work with adolescents who have been incarcerated. So, we just work with them on various problematic behaviors that are not in line with the way that they want to live their lives and what they see their futures as. And so, that’s amazing work, and I absolutely love doing it, working with adolescent males as well is quite fun. They definitely keep me on my toes. 

And then, I live in Alabama. I moved here for graduate school. I’m originally from the San Francisco Bay Area, and I lived there for 27 years, and I came here to Alabama for graduate school, and I’ve been here for about five years now. 

[00:04:49] Cheryl:
Wow! When you got diagnosed, it was fairly quick.

[00:04:52] Kristen:
Yeah, absolutely. So, my dad, he was diagnosed with rheumatoid arthritis. I think he was, I want to say he started having symptoms in his forties. And I think he was diagnosed not till a lot later. I think it took him several years to get diagnosed. But because he had rheumatoid arthritis, and then my mom has Sjögren’s, she took almost 30 years to get her diagnosis, which is awful. But so, she has Sjögren’s and fibromyalgia. And so, when I started experiencing pain that was just so severe, I was in tears and couldn’t move my shoulder. It was in my shoulder I went to. And they, took some X-rays, everything looked fine. So, they were like, “Here’s some anti inflammatories, go home, you’ll be fine.” And I was for about a week and then the pain came back, but this time in my left shoulder. 

So, I was like, this is curious. And so, I talked to my mom and my dad and I was like, it’s probably rheumatoid arthritis. And some of this — there is that hereditary component. So, I went ahead and went back to my doctor and let them know. And so, they just ran like the full gamut of blood tests and labs and then referred me to a rheumatologist. And then, on my first visit, I was diagnosed with rheumatoid arthritis and Sjögren’s and given methotrexate to start like two days after I was diagnosed. So, it was very quick and I’m very lucky for that because I don’t have any permanent joint damage.

[00:06:16] Cheryl:
Wow, you don’t even realize until you start meeting other patients sometimes how it is fortunate to have a quick diagnosis, but the family history certainly works in your favor. So, unfortunately, your parents both had delays for their diagnoses, but the fact that they had it made it easier for you to get diagnosed. And so, I’m just really fascinated by behavior analysis applied to people with chronic illness because my previous work was all with children with developmental disabilities, and it’s pretty broadly known in that context. And when I found your account, I was so fascinated to see that you are applying applied behavior analysis to chronic illness. So, can you explain a little bit what a BCBA is and the ABA? 

[00:06:56] Kristen:
Yes, I would love to. So, a BCBA is a board-certified behavior analyst. And that is a clinician who practices applied behavior analysis, or ABA. So, in order to qualify to become a BCBA, you have to have a Master’s degree in a related field. So, either in behavior analysis, psychology, or special education sometimes. So, it just depends, but it’s got to be related to applied behavior analysis. And then, on top of that, you have to have 1,500 hours of supervised experience. So, that’s actually you in a room with a client applying the tools of applied behavior analysis or being behind the scenes and designing programming and using our science to help change behavior in a socially valid way. So, a way that is meaningful to the clients that we’re serving. 

And I’m glad that you brought up, you know, our work with individuals with developmental disabilities because ABA has been really crucial to a lot of individuals who fall within that group. And while we have been very effective with certain behaviors that have been problematic to individuals who have developmental disabilities, it’s a science of behavior. So, applied behavior analysis was actually developed in a lab with animals and just looking at how organisms learn, how organisms unlearn, and how we can change behavior. And so, the science can actually be applied to a variety of different individuals. It’s not diagnosis specific. There’s not really a cap on who we can work with. As long as the client ‘behaves’, we can work with that client. 

And so, when it comes to chronic illness, chronic illness can be overwhelming for a variety of reasons. I know one of the reasons why I was very overwhelmed in the beginning was because here was this diagnosis, and here was this doctor telling me all of these things that I needed to do to change my behavior and change my life. My life was flipped upside down. I had to start taking medications, I had to start thinking about my diet, about exercise in a different way than I did previously. And then, on top of all of that, there’s all of the thoughts and the mental health side that we’re dealing with constantly. And so, the science of behavior can be applied to any one of those areas. 

Some of the things that we can help with in terms of applied behavior analysis with chronic illness is those lifestyle changes. So, if you’re having a hard time with medication adherence, or you are wanting to start an exercise regimen, or food tracking but you’re not sure where to start. Any one of those things, a behavior analyst, what that person will do, we are trained in the science of behavior. And so, we use the methods of science to help you reach your goals in a way that’s comfortable for you, in a way that works for your lifestyle. 

Because behavior change only goes so far as somebody is capable of using those tools in a way that it works with their lifestyle, right? We’re asked to change so much. And then, if I get this bombardment of behavior change on top of everything else, I’m not going to do that for very long. And so, a behavior analyst knows how to work with you in a way that’s going to work for you long-term.

[00:10:04] Cheryl:
That’s so crucial. And I think for me as an occupational therapist, it makes sense to be able to apply this to, like you said, multiple populations. And I did want, I want to get something really quick out of the way because the majority of the audience is going to be patients with arthritis that are listening to this, but I also have quite a few occupational therapists. And there’s been a lot of controversy in the field of ABA in terms of ethical treatment of people with autism and other neurodiverse populations. I’ll tell you, when I first saw your account, I was like, this is weird because I had a bad impression previously of ABA. 

Because I thought this is the people that come in and don’t respect my client. To be honest, this is from my own observation, that they just treat our clients with autism as if they’re just a set of behaviors rather than a human with a heart and like a desire behind those behaviors. But then, one of my best friends who’s a special ed teacher became a BCBA and she showed me that no, that was an outdated. I was volunteering with kids with special needs since I was in sixth grade. So, I had years and years of seeing different things. And so, it turns out that ABA and BCBA’s have evolved a lot over the years to address things more ethically. For anyone who might have a bad impression of ABA or BCBA, what would you say?

[00:11:17] Kristen:

Well, the first thing that I would say is that I’m sorry that you had that negative experience because it’s absolutely not acceptable and that’s not the science that I know and the science that I subscribe to. The second thing I would say is that a lot of it boils down to clinical philosophy. And so, it’s kind of similar to finding the right therapist, or the right doctor, the right rheumatologist. I’ve spoken to people who, you know, have had rheumatologists who they feel have really not respected them and not listened to them and steamrolled through the entire appointment. So, again, it’s not acceptable that there are board-certified behavior analysts out there who are not respecting their clients. 

That being said, there are some of us out there who feel very strongly that we are working with whole people. And to ignore the whole person, to ignore the presence of emotions — my goodness, one of the things that makes us humans, we need to be talking about this. And I will add, one of our founding fathers of behavior analysis, if you will, B.F. Skinner, never and never told us to ignore emotions. He never ever told us to ignore internal stimuli that you can’t necessarily quantify. So, that is a misinterpretation of our science and our foundation by some practitioners. 

And so, there are definitely some practitioners out there who probably disagree with me and my statement of that. But again, the writing is in a book by B.F. Skinner and it actually says that, “My toothache is as real as my typewriter.” And there’s no reason why a science cannot work on something just because somebody else can’t verify that it’s there. So, we need to be creative as behavior analysts and we need to accept the fact that we work with a human population and we are only there to help our clients reach goals that are meaningful to them. 

It’s not my job as a behavior analyst to come in here and tell you what you need to work on or tell you how you should be living your life. This is your life and it is not my job to tell you how to live your life. So, my job is to just support you on your journey and to help you harness the power of behavioral science so that you can reach those goals in a way that’s comfortable for you and in a way that’s going to be long lasting.

[00:13:33] Cheryl:
That’s so beautiful. In terms of populations that are neurotypical that are presenting with more, quote unquote, ‘acceptable behaviors’, like I have rheumatoid arthritis and I’ve been told that diet and exercise help, and I’m having a hard time, like any other human being, right? How many people who want to maintain their health and promote their health and lifestyle know diet and exercise is a part of that? We know that. That’s not the problem. The problem is making yourself do the behavior. So, it’s just beautiful that there’s a science out there that is evidence-based that says, look, we can help you make a behavior change. So, I’m getting excited for you, but I think it would really help our audience to see some examples from your life. ‘Cause you’ve been sharing examples of how you analyze your own life and behaviors as a patient and a behavior analyst. 

[00:14:25] Kristen:
Yeah, absolutely. I would love to chat about that. So, I think the, most concrete example that I can share is an example where I started taking CBD tincture. And so, I kind of did a treatment evaluation on several behaviors or dependent variables, if you will, the scientist in me is like itching to use that word. So, measuring a couple of things that were going on inside of my body that I didn’t know how to explain, and my rheumatologist actually didn’t know how, didn’t know how to explain either. And so, she’s actually the one who originally asked me to start taking data on these things. So, those things were my brain fog, my fatigue, and then I was having chest pain. So, she wasn’t sure if they were medication side effects or really what was going on. And so, she said, “Go ahead and take some data.” So, then I was like, ooh, you’re telling a behavior analyst to take some data. All right, you’re going to get some data. So, I broke that down and kind of defined, what did that mean to me? What does my fatigue look like? What does my brain fog look like? How is it unique to me and what I experience? 

And so, I quantified that and identified some behavioral dependent variables that I could take data on. And I did so in a way that worked for me. So, the data collection piece was very quick ’cause I knew I was gonna have to do it every single day. So, I created very quick kind of data sheets that I could run through at the end of my day to make sure that I didn’t have any missing data. And then, I got excited and I started taking CBD tincture. So, I just marked where I started taking that CBD tincture so that I could evaluate how my behavior looked with the CBD tincture and without the CBD tincture. And so, after I had about two and a half, almost three months of data, I was able to calculate conditional probabilities. 

And what that is it basically tells us, you know, what is the probability of this behavior occurring, given a certain event. So, for me, it was what is the probability of me experiencing brain fog when I have taken CBD, versus what is the probability of me experiencing brain fog overall. And so, what you do is you look at those two measures and you evaluate whether or not your conditional probability is higher or lower than what is called your background probability. And so, for me, what I saw was that my conditional probability of brain fog and fatigue symptoms were lower when I was taking CBD tincture, and then there wasn’t really an effect on the chest pain. 

So, that was able to tell me that for me, CBD was actually worth the cost because that is kind of an expensive supplement. So, I wasn’t really thrilled to add this to my regimen, but I had the data to support it and so I am taking it now. And so, I just had a rheumatology appointment on Monday. I took all my graphs. I had nine different graphs and I was showing them to my rheumatologist and she was really interested and she was actually surprised too that I found what I found. But that’s the joy and the wonders of data is that it takes out all the guesswork. 

I don’t know about the listeners, but I second guess myself constantly in relation to my chronic illness. Like, oh, maybe it’s not as bad as I think it is. Or maybe, other people — oh, my gosh, it’s so difficult. And so, that’s why I really love data for me because it’s no, Kristen, look, this is real. This is what you are experiencing. You can let that second guessing rest because you have this data to support what is going on in your body. So, it gives me some confidence and really empowers me as well. 

[00:17:46] Cheryl:
I was just editing a different interview and we talked a lot about the feeling of overwhelm when you first get diagnosed and a little bit of a feeling of your self-efficacy takes a hit because I think people, I’ll give myself as an example, I was an athlete. I was, you know, played the most selective soccer teams my whole life and then went to college and was the captain of the soccer team. And then, I experienced this deterioration that it was the first time that it felt like my health wasn’t in my control. And I know that’s a privilege, right? To have grown for 19, 20 years in a body that I was able to feel control of. Some people don’t even get that when they’re born. 

I had this sense of, wait, I’m doing the right things. I’m exercising, I’m eating well, and suddenly I’m in all this pain. And so, to be able to give back some self-efficacy to the patient to say that, yes, you have something going on in your body that is out of your control to some degree. Like, again, where we draw that exact line is hard to metaphorically say, but like my immune system is attacking my joints and I can do certain things that can help can either control those symptoms or the disease activity. That’s like a wonderful tool to give to a patient who feels so hopeless. 

[00:18:59] Kristen:
Absolutely. Yeah. And I think that’s one of the things that I love about applied behavior analysis in general is that it is a tool for me, right? It’s not the end all be all. It’s a tool and it’s very, very helpful across a variety of kind of situations I find myself in, but you’re right. That sense of control is something that so many of us struggle with, just like this loss of control of our body, of our health, of sometimes even our lifestyle, we feel like our lives are out of control. And so, having that little sense of control back and putting some of that control on the patient. And I have the power to make these decisions and to make these changes in my life in a way that’s going to be effective for my overall health management. 

[00:19:41] Cheryl:
Absolutely. I’ve seen so often in either the groups I’ve run or the social media interactions I’ve had that people feel they’ve tried something and that specific thing and that specific context didn’t give them the result they want. And they over generalize a conclusion from that to say nothing worked. I tried one diet. And therefore, no diet, or no exercise, or no — I feel for people who that’s their subjective reality, that feeling of nothing works, but I wonder whether behavior analysis could help people develop that nuanced view.

[00:20:17] Kristen:
Yes. Yeah, absolutely. So, not only could behavior analysis help with the way that you, your relationship with your diagnosis and your relationship with, ‘Okay, I need to try all these different things, this didn’t work. This didn’t work. Okay. I’m giving up.’ So, we, actually have principles to define these kinds of behaviors. So, like when I am met with I’m hitting a wall. So, I’m trying all these different things. I’m hitting a wall, hitting a wall, hitting a wall. That’s called learned helplessness and behavior analysis. So, nothing I do works. Why would I even try? And so, we just give up. 

So, to develop that resilience, we again have a lot of principles in behavior analysis that help with developing that resilience. And so, some of that is just going to be things like, first off, accepting that this is a journey, right? This is not something that we are on for a limited amount of time. And so, just accepting that and learning to rest along the way. Like, that is so, so crucial. I am the biggest proponent of rest. I could not be doing half of what I was doing if I didn’t have regular, very directed and intentional rest throughout my day and throughout my weeks. 

[00:21:23] Cheryl:
Yes. It seems as so many people I’ve encountered in the chronic illness world are people who are used to being able to be really productive, being able to be really active, overachiever, maybe a little bit of a perfectionistic streak. And so, learning how to rest without guilt, for me, personally, the diagnosis helped me be able to rest without guilt. Because I was able to say, I have an excuse for needing more rest. But when it’s happened so quickly, when you’ve gone from, again, a level of functioning that is so high and your whole life is oriented around that level. And then, all of a sudden, you get flipped upside down. It can be really, really hard to learn how important that is. 

[00:22:05] Kristen:
Yeah, that is a topic that’s so near and dear to my heart because I was diagnosed with my chronic illnesses nine months into my PhD. So, I had obtained my master’s, but yeah, I was fresh into my PhD journey and I was very used to being an overproductive person and just constantly producing. And it was all about this product-based work. And I was very much that type of person and, like, very perfectionist and all of that kind of stuff. And so, it was very hard for me to learn how to rest and to get to a place of peace when I have to rest. But I’m happy to report that I’m 100% there now. So, it’s possible. 

Like, you know, that’s the thing about behavior analysis too, is the science of behavior teaches us that everything is a skill that is learnable. So, like you see somebody who has these personality traits that you’re like, “Oh, I wish I was more like that.” You actually can be if those are in line with your values, if those personality traits are in line with your values, and it’s something that you want to learn, most behaviors are learnable. And so, of course, there’s going to be, like, biological, constraints and things like that, but just keep an open mind and try not to limit yourself when you see a certain behavior that you are like, “Oh man, I wish I had a little bit of that,” because you absolutely can learn it. It takes a lot of practice and it is hard work, but most skills are learnable.

[00:23:29] Cheryl:
I love that. And one of the things that I remember being so surprised by, a lot of people tend to think that our thoughts direct our behaviors, right? Like, ‘I think therefore I am’ thing, but okay, I think that I’m a person who values exercise and therefore I go and I exercise. Your behaviors can actually exert a bigger influence on your feelings about yourself than your thoughts and feelings can exert on your behavior. So, we tend to think, ‘Oh, if I’m just motivated, if I’m just motivated’. No, if you actually just do things, it’ll change your feelings and your thoughts, as opposed to changing your feelings and thoughts in order to change your behavior. Is that still applying? 

[00:24:09] Kristen:
It just depends on the, philosophy that you’re subscribing to. So, there’s a lot of different schools of thought out there. The school of thought in terms of a behavior analyst is that your thoughts are going to influence your behavior potentially. They may act as some sort of motivation, but they’re not necessarily like controlling your behavior. You’re controlling your behavior actually. So, and the environment influences how you end up behaving. 

And so, when your environment is not conducive to all of these lifestyle changes that your rheumatologist has suggested, no wonder you’re not doing them. That’s not your fault. That is not your fault at all. That is the fault of the environment being set up in a certain way that is not going to help you at all in producing those behaviors. And so, again, working with a behavior analyst who’s trained in being able to look at the environment, look at what’s going on, and how can we make this work better for you?

[00:25:02] Cheryl:
Oh, it makes so much sense. And environment is in occupational therapy, we have one of our models, it’s called the PEO — Person, Environment, and then Occupation — which is just our fancy word of saying meaningful activity or necessary task for your daily life. So, an occupation could be sleeping, it could be taking care of your child, or whatnot. So, but the environment is like this invisible, huge influence people tend to forget. I know some people say, even like laying out exercise clothes the night before, like, some people wear it to bed to remind themselves or put their shoes on as they get out of bed, put their exercise shoes to remind, that kind of — I guess that’s more of a technique than an environment, but you can modify things in your environment. 

[00:25:44] Kristen:
Yeah. And it absolutely is. Yeah. It’s modifying your environment to change your behavior. We would call it like a prompt in applied behavioral analysis. So, it’s something that evokes a behavior and makes it more likely to occur.

[00:25:56] Cheryl:
Oh, I just literally yesterday did this after seeing people on Instagram do this. I really liked the idea of making smoothies, but my barrier that I identified to my behavior of making smoothies was I was irritated at having to get everything. Our freezer is over-filled and then I was like, I had to get things out and then things were falling and I was, like, just throw it in the side and who cares? I don’t want to make a smoothie anymore. So, I was, I saw that somebody had taken the pre-measure of the ingredients in their freezer and put them in little freezer bags, get the Ziploc out of the freezer, put it in the smoothie maker, and then you add whatever else, maybe like a protein powder or like a almond milk. And it was like, I’ve already made two smoothies, yesterday one and one today, and it was like that’s totally influenced my behavior. I didn’t need to think differently about how much I wanted a smoothie. I wanted a smoothie the whole time, but I my behavior wasn’t following from that desire.

[00:26:50] Kristen:
Absolutely. Yeah. And yeah, no, that, that’s such a great, that’s such a smart kind of tool to use and to implement to make that behavior more likely. I go a step further and I actually may, I batch make all my smoothies and then I just freeze them and take them out the morning that I’m going to have them because I can’t with meal prep, like during the week, I’m just too busy with work. And I just get so exhausted by the end of the day. There’s just no way that I’m going to be getting out a blender and cleaning it after. It’s not happening. 

[00:27:17] Cheryl:
I’ve been getting some questions from people lately who are wanting to pursue advanced degrees and they are young people who have these kind of, inflammatory conditions. And the question I get a lot is like, how do you balance being a student? How do you make it look so easy, Kristen? No, I’m just kidding. ‘Cause I know you’re honest about it. It’s not easy every day. 

[00:27:40] Kristen:
No. Yeah, it’s definitely not. And actually, I love this question so much. Anytime I could talk about graduate school and the huge puzzle piece of graduate school that is mental health, I will talk about it. I supervise Master’s students. And so, it’s a huge piece of my supervision is to always make sure that they have some sort of mental health goal that they’re working on because I think way too often in graduate school, honestly in life in general, we just forget about that piece. And unless you’re actively working on it, it’s use it or lose it, right? And so, like you have to make sure that this kind of stuff stays fresh. So, in terms of balancing graduate school with chronic illness, it is a challenge. Absolutely. 

I think a huge component of my success or anyone’s success who does graduate school with a chronic illness is going to be, first off, your advisor So, your advisor actually has a huge influence in your graduate school experience. If you have an advisor that fits well with your needs, you’re going to have a much easier time than somebody whose advisor does not really fit well. So, if you are thinking about going to a Master’s program or a PhD, you want to make sure that you talk to students of the advisor. So, current students and people who are early in their journey and people who are later on in their journey. ‘Cause someone like me who is in their final hour, we have a lot more to say because we’ve been around for a while and we’ve learned how to set boundaries and how to become our own person while under the leadership of somebody else. 

And so, I would say that is going to be the key kind of thing to think about is who is your advisor going to be and, you know, does their supervision style and then also do their values align with yours? Is it really productivity-based and is it something where you’re going to have to push yourself harder than you’re able to? Because that’s setting you up for failure. Again, you are not the problem in that equation. It’s a bad fit. And so, you need to make sure that you find the right fit. And so, you absolutely can manage chronic illness with graduate school. You just need to make sure you’re in the right place for you and your abilities. 

And then, the other thing I would say is get really good at setting boundaries. Know what your boundaries are and don’t be afraid to set them because when, speaking of behavior analysis, when you set up a behavioral pattern, right, so if you’re constantly saying ‘Yes’ to things and overworking yourself, you’re teaching other people in the environment that they can keep loading stuff on you. When you start putting your foot down and you say, “Hey, this isn’t working for me. I need it to be this way instead,” people will listen. but you’ve got to set up those expectations and you have to set those boundaries and that can be extremely challenging to set boundaries. I know it was something that was very hard for me when I first got diagnosed. 

So, lean on your support systems, and make sure you’re celebrating your behaviors when you do set boundaries. So, it might be something as small as saying no to a social event that you have, you just don’t have the energy for and you say ‘No’ to it, go celebrate yourself for saying ‘No’ to that because that was probably a lot harder than you’re giving yourself credit for and you need to make sure that you’re reinforcing those behaviors.

[00:30:42] Cheryl:
That makes so much sense. I just, I literally just did that earlier last week. I said ‘No’ to a volunteer opportunity that I really wanted to do, but I have to recognize limits. And I literally texted a friend. I was like, “I said ‘No’ to something! I’m so proud of myself,” because the root of that behavior to me at times is multi-pronged. One of them is just my innate personality and a pattern over time of feeling like I can do everything, say ‘Yes’ to everything, and also a genuine desire to do everything. I just want you to know, even if I didn’t have to sleep, if I could take a pill and not sleep in those 24-hours a day, I would still want more hours, you know? 

So, I realizing that there has to be a limit, but also it comes from, I really realized this after my son was born and I had a pretty bad flare up and then I started feeling a little bit better when I switched medications. I was like, I have to seize the moment because I don’t know when the next flare is going to come. And so, I’ve got to lean in now. And I really realized I came close to burning out. I didn’t burn out professionally, but I came too close for comfort because I was trying to squeeze in too much in the time period that I felt capable, but it was like too big of a volume of commitments and stuff.

[00:31:52] Kristen:
Absolutely. Yeah. I mean, I have absolutely burned out several times in graduate school, but I’m still here. And why is that? You know, because you learn these skills of persistence. And I understand that persistence is a behavior and that I can cultivate that. And if this is still in line with my values and my goals and my dreams, and I need to continue to pursue it, I just have to pursue it in a different way. And so, something that I’ve learned in the past couple years is to not commit to things that’s more than 80% of what I know I can handle. So, I, if I know that okay, I can handle, let’s say I can handle these 10 things. I’m actually not going to commit to those 10 things. I’m only going to commit to 8 things because I know if I commit to those 10 things and then I have a flare, or there’s something else that goes on in my personal life, or maybe something really fun comes up and I want to take part in it, I’m not going to be able to do that if I’ve already committed to my full load, right? It’s like that spoon theory, like, don’t use all the spoons. Save a couple because you never know what’s going to come up.

[00:32:49] Cheryl:
That’s a beautiful rule of thumb. And again, those of us who are used to committing to 110%, it’s a big leap to learn a new behavior, but you can. I know that you have utilized so many different tools for your own kind of stress management. Would you like to elaborate a little bit on mindfulness, or ACT, or anything that you do for kind of overall stress management or anxiety or however you label it? 

[00:33:17] Kristen:
Yeah, absolutely. Yeah. So, I think the biggest, the biggest catalyst, full disclosure, I went to therapy. Literally the day after I was diagnosed, I made an appointment with a therapist because I knew that — so I have mental illness in my family history as well. And so, I know I’m predisposed. And then, we know that people with chronic illnesses are actually more likely to experience mental health issues at some point. So, I wanted to get out ahead of it. So, even though I wasn’t struggling yet, I was actually celebrating my diagnosis because it meant I was going to get treatment, I knew that I wanted to get out ahead of it. And so, I think that doing that actually saved me because I think I would have gone down a spiral and it was so much easier to get out ahead of it, I guess is what I’m trying to say, than digging myself in a hole and then trying to dig my way out of it. 

And so, I will say that there is absolutely no shame in going to therapy. Even as somebody trained in psychology, I went and reached out to another professional because I was like, I can’t do this by myself. And so, I think that was a huge, huge turner for me. By going to therapy, that’s when I contacted mindfulness practice. My therapist was a was a proponent of it. She never pushed it on me at all. But that was something I wanted to do for myself And so, having that as a regular practice that I still engage in now every single day, that’s made a huge difference in the way that I approach my diagnosis and the thoughts that I have surrounding my diagnosis. Because sometimes it’s not necessarily what’s actually happening that causes suffering. It’s everything that’s going on in here. 

And so, when you learn that tool of mindfulness And you’re able to generalize it and practice it when the thoughts are overwhelming, it’s just so much easier than, again, like having to dig yourself out of this hole where like I have been overwhelmed for months and I haven’t sought any help. And then, you mentioned ACT or Acceptance and Commitment Therapy. So, that’s just a psychotherapeutic tool or a model that some clinical psychologists may use. it is very behavioral. I definitely enjoy lots of tools from ACT. 

So, ACT kind of functions on this idea that there are six kind of core areas that lead to what we call psychological flexibility, or being able to handle whatever gets to you thrown your way in life in a way that you are proud of. ACT is really neat because they use the patient’s verbal behavior. So, how is the patient speaking about their experience? And then, the therapist will identify where on those six kind of core areas, where do I need to focus my treatment? So, it can be a super useful tool, and it also incorporates mindfulness or the what they call it is contact with the present moment, but yeah, it can be a really, really useful technique. 

[00:36:05] Cheryl:
And it was so fascinating to me because I learned it as a patient first. And then, when I started learning the history of it and doing continuing ed as a practitioner, because occupational therapists can use it as a model as well. And I think a lot of people with pain, it’s a model that resonates, from my experience, a little more than CBT because there’s this pressure taken off of you of trying to argue with the thoughts or just learn how to acknowledge and then distance yourself a little bit from them. 

[00:36:34] Kristen:
That’s one of the core areas of ACT is diffusion. And so, the idea here is that we are so fused with our thoughts that we are so connected to them that we end up regarding them as true and as these kind of like permanent objects that are guiding us, whereas that’s actually not true at all. Thoughts are just there and they’re just noise in the background like if you had the radio on. And so, through that practice of diffusion, you can learn to just allow that, like, recognize that these are just thoughts. They don’t actually have any power over me. They don’t even need to be true. And even if they are true, that actually is irrelevant. It’s really more about are these thoughts helpful for me in this moment? Because if they’re not, then I don’t need to give them any attention right now.

[00:37:18] Cheryl:
That’s, yeah. And I think with people in pain, it’s can be so useful because you could be thinking this might not ever get better and spiraling on that thought. And that’s true thought. It’s true that it might not ever get better, but it also is true that it might get better. So, learning to live with that uncertainty is huge. But back to the mindfulness practice, can you walk us through a little bit more? What does your mindfulness practice look like in your life?

[00:37:45] Kristen:
Yeah. So, my mindfulness practice started off with using some meditation apps, just doing 10-minutes a day. That was my goal in the beginning. And then, once I started feeling comfortable with that, I started busting out of the mold a little bit and doing my own thing and just focusing on like a breath practice. And once I solidified that breath practice, all this while I’m trying to use the tools of mindfulness outside of meditation, right? So, meditation is the gym. Mindfulness is the exercise. So, I’m using mindfulness — I did not come up with that. I think I heard, I think I heard Cory Muscara say it, but I think Jon Kabat-Zinn has said it as well.

[00:38:24] Cheryl:
I love that. 

[00:38:25] Kristen:
It’s a really good analogy. Yeah. So, using mindfulness throughout my day. So, actually, not just in relation to my chronic illness, it was extremely helpful there, but also in relation to my PhD. It was extremely helpful in relation to my PhD because I was so stressful and my thoughts were on my PhD all the time. And so, mindfulness really helped me just drop the struggle and just allow these things to be and pass as they will. I’ve been getting more into different types of mindfulness and different types of meditation. So, looking at, like, chakra meditation, I’m not sure if you’re interested in that at all or have any exposure to it, but.  

[00:39:04] Cheryl:
I’ve heard of it. I would love to hear more. 

[00:39:07] Kristen:
It’s neat stuff. And I’m certainly not a teacher. I am very novice in this work myself. I do like exploring like the different energy centers of the body and kind of seeing, again, I think it’s a nice tool. It is a way to direct your energy and direct your thoughts and direct kind of what do I want to give attention today? And so, if it’s, you know, I need to infuse more love and practicing and behaving throughout my day with more love, then I can go ahead and focus on that chakra and then that will give me that motivation to behave in a way that’s, again, more in line with my values. That’s what it all comes back to.

[00:39:42] Cheryl:
None of my therapists ever explicitly talked about the values piece. I think claustrophobia, again, is, a perfect example, right? ‘Cause I value travel, and I value time with my family and exploring new places. And I have to get an airplane to do that. I just have to. I literally could go on a container ship. It’s physically possible. But it’s so extreme and would have so many negative sides to it that it was, like, really hit me in the face, like, I have a choice, right? Sometimes, and ACT talks about the choice point. I could say I’m not willing to tolerate the discomfort that I feel on an airplane and I’m not going to travel, even though my value is travel. I am going to choose not to, because I’m not willing to. But I was like, I’m a little bit too stubborn. I was like, no, that doesn’t resonate with me. I value it too highly. I have to learn how to do this. 

And so, going to therapy is not fun. but it was a wonderful at the end. It’s like running a marathon. It’s great after you finish and you can look back and say, “I did that.” So, to see yeah, I can now live according to my values. And it’s not like I feel this wonderful sense of perfect peace and harmony when I’m on the airplane. But I’ve learned I can live with anxiety. It has translated so much to my thoughts around my condition, particularly with uncertainty. Again, is it going to get worse? Is it going to get better? I think it’s really common for people with inflammatory arthritis and any autoimmune disease to struggle with that uncertainty and to try to chase certainty is a lot of energy that ultimately is not going to result in your goal of certainty because certainty is impossible.

[00:41:18] Kristen:
Absolutely, and it’s, yeah, and it goes so much further even than just chasing certainty, but I find that a lot of times we end up chasing things like happiness, right? I know we both have read The Happiness Trap, but we tend to do that, yeah, and we chase all of these things that we have deemed as good and desirable, and I will have a good life when I achieve these things. And it’s really not about that. It’s about I’m gonna have a good life in spite of whatever comes my way, right? And I’m gonna learn to find joy, and I’m gonna learn to find peace, and committed action despite what is happening around me. So, I think that is where those values and even acceptance can be a really powerful tool in chronic illness management because, again, we spend a lot of time fighting our diagnosis. 

And I know that sometimes we have to, right? Like that, that, idea of I’m gonna fight back against RA. That can be really, really helpful sometimes. But there are also other times like you’ve got — life is balance, right? It’s all about balance. And so, there are some times when you’re going to just have to accept, like, you know what? I do have rheumatoid arthritis and right now it’s got to take center stage and that’s just how it is. So, how do I find happiness and joy and peace despite the fact that my RA right now is more active and is needing more of my time? 

[00:42:39] Cheryl:
That so resonates. And I think for a lot of people, the difficulty with learning acceptance is that they associate it with giving up, not even playing the game. But you’re still playing the game. You’re playing the game of life, right? You’re just not playing life versus my condition. What’s hard for me is that I feel so much passion for people who are recently diagnosed, but in some ways there’s a paradox. ‘Cause it’s on the one hand, it’s I learned all these helpful tools after living with this for 13, 14 years when I finally went to therapy. I want to teach everyone right away so they don’t have to struggle like I did. And on the other hand, are you completely ready to learn all of these tools immediately after your diagnosis? I’m not sure everyone is ready and that’s okay, too.

[00:43:23] Kristen:
Yeah, and I think that’s a wonderful point is — you’re right. You’re so you’re only going to find this as effective when you’re ready and you’re in a good spot to go ahead and practice that acceptance. It’s okay when you’re not. It’s okay that you’re not necessarily ready, right? Like, it’s okay that there’s going to be a little bit of I’ve got to fight this for a while. So, I just, you know, have grace. Don’t be too hard on yourself. Because even myself, I mean, I’m still pretty new to my diagnosis. But I definitely have moments where I am absolutely not in a place of acceptance. 

So, you know these things are all journeys that we’re on. They’re all kind of roller coasters. They ebb and flow, they have ups and downs. And so, I think the biggest piece is can I still live a life that I find fulfillment in despite those ups and downs, because ups and downs are part of life, chronic illness or not. And, it’s really more about accepting that and being at a place where can I live my life and be fulfilled with it, even though I’m going to have those ups and downs?

[00:44:25] Cheryl:
That’s so beautiful. Yeah, The other metaphor that I resonated with in the Russ Harris’s work is your thoughts are the passengers on the bus and so you’re driving and sometimes your thoughts are going to be saying things like, “You’re stupid, you shouldn’t do that. Pull over, oh, my gosh. Danger’s ahead,” and or they can say, “You’re amazing, you’re awesome, go faster. Go chase that next shiny object,” but you are in control, you’re the driver and you know where you’re going. So, you have to learn how to just tolerate those thoughts. I think the biggest thing is to be able to tolerate those thoughts or be able to acknowledge them and say, oh, those are thoughts, but I’m still going — if where I’m driving to is a full life despite chronic pain, I can listen to, but I can’t follow those thoughts that say, ‘Pull off, stop, don’t even drive anymore’. So, I think, some people, after hearing you, how eloquent you are and maybe checking out your Instagram, they might be like, ooh, I want to get some help. I want to get some chronic illness behavior coaching either from you or from someone else. Can you talk a little bit, what does it look like or to work with a behavior analyst on chronic illness behavior coaching?

[00:45:31] Kristen:
So, the way that it works, for me at least right now is it is remote. So, you know, given the pandemic and all that kind of good stuff, we’re just doing things virtual right now. It first starts out with just a consult call and kind of seeing if we are a good fit for each other, right. You have to make sure that I’m a good fit for you. And that doesn’t hurt my feelings if I’m not it just means that we’re not suited to fit together, right, and to work together and that’s okay. So, we, we first do this little consult call. And then, after that, if we decide we want to move forward, then we do an assessment. And so, the assessment call is basically just me asking some questions about your lifestyle, and what your goals are and what has worked for you in the past, what hasn’t worked. 

And then, we discuss together about some potential solutions. So, what does behavioral science say about the goals that you want to reach and how can we reach them? And so, I will field some options off of my client and they will tell me what works for them what doesn’t and then I will create a plan and the plan will be a detailed explanation of how they’re gonna reach their goals. And so, it’ll have specific steps that they can engage in order to reach those goals. I will definitely ask people to take data. Data is a really big component of what we do in behavior analysis. And so, I have to let that data guide my decision making, otherwise it’s not really behavior analysis. 

So, I would create a data sheet for my clients and they would take data and then we would check in. It just depends on what we’re working on and how intense it is, and we might meet once a week, I might do some text prompts in between. It just depends on the client and what fits them and their lifestyle. So, I can be very adaptable depending on what works for them and then we just go from there. And so, it might be that you have this like this concrete thing that you want to work on and you just need a plan to help you get there. 

So, we can do that or it might be something more ongoing. So, it might be more about you know working around my thoughts on high pain days. Maybe I have a really hard time managing those thoughts. Okay, well that might require a little bit more of an ongoing process. But the idea and behavior analysis is always that we are getting to a place where you are not having to work with us regularly. So, the goal is to put the tools in your tool belt. it doesn’t do me any good to keep all the tools myself. So, the point is that I give you the tools and then you walk away with them and then I support you so that you can continue to use those tools in a way that works for you. And further, if we can even get you using those tools for other behaviors, that’s even better. So, then now, you really are empowered to do this stuff yourself and you’re not necessarily needing to rely on a behavior analyst to get you there. 

[00:48:20] Cheryl:
Almost like a jump starting, and helping. It really makes so much sense to sort through again that overwhelm. And I know that at one point, when I was working at accepting uncertainty, I was telling my therapist it can feel like a fool’s errand to try to like correlate everything. But at the same time, I think it’s just this interesting balance in between on the one hand accepting that this is happening right now in the present moment, versus gathering data to help us promote our health in the long-term, you know? It’s a balancing act. 

[00:48:51] Kristen:
It’s a total balancing act. And like I said, that’s why I’m such a big proponent of looking at this as a marathon, not a sprint, because you really do need to make sure that you’re resting along the way and taking breaks sometimes if the symptoms can, you know, wait. So, I, I know when I was in the process of getting costochondritis diagnosed it was exhausting and I was like knee deep in my dissertation. It was like, I can’t do this. Like, I need to take a break from chasing a diagnosis And so, I literally just walked away for about a month and just said, “I can’t do this,” and just waited and then eventually when I was ready you pick back up and you go ahead. So, like you said, it’s asking yourself that question, like, is this working for me now? Because things are going to shift, right. And so, chasing the diagnosis is working for me right now, but right now it’s not, and I need to stop. And then, at some point stopping is no longer working for me and I need to pick that back up and chase again. 

[00:49:45] Cheryl:
Such a great point. And I’m anticipating a question some people might have, and I will definitely be putting some resources in the show notes for learning more about BCBA’s and about ACT and about ABA, and chronic illness behavior coaching. But what, how would you differentiate chronic illness behavior coaching from either, quote, ‘general’ life coaching or health coaching or is there an overlap there? I know you’ve talked about this, but yeah. 

[00:50:12] Kristen:
Yeah, absolutely. Yeah, so there’s definitely a little bit of an overlap for sure. So, I actually, it was very exciting actually, I got to talk to a board-certified behavior analyst who’s also a certified health coach a couple weeks ago. And that was super fun. She works for a large company and she does like stress management for the larger company. And so, she, I think, you know, with the behavior analysis. One, it’s always like the data, right? And so, we have lots of data driving us. And so, we’re collecting data all the time. And so, that’s one of the big tools that we use. Another big tool is just all the training that we have in behavioral science. Whereas with health coaching, for example, it’s going to vary depending on where you do your coursework. But they’re going to be more on this kind of like holistic level of learning about like mindfulness and motivational interviewing and things like that. And so, there’s definitely some overlap for sure. But I think that both has their unique kind of areas of expertise. 

[00:51:08] Cheryl:
And life coaching is similar to health coaching for what I know in the sense that you can either have a certification and go through a program or because it’s not like a nationally regulated profession, anyone can call themselves like a life coach or a health coach. Whereas if you know that somebody has a BCBA, that’s like a Master’s level. And that is more rigorous than not. So, again, it doesn’t mean that you can’t find someone that works for you. Certainly, I am a huge fan of workability, right? I think, as a Master’s level trained occupational therapist, there are some ways in which I’m over-trained sometimes, so I’m the first to admit that. But I think there is a clout that is important in a field that is regulated. And unfortunately, I’ve seen people out there and I got gotten targeted by people who are like, “I can make, I can cure your RA. Join my health coaching program.” I’m like, nope. 

[00:51:56] Kristen:
This is actually why I started offering behavioral services because I was being targeted by people that I was like, what exactly qualifies us to be providing these services? And so, I said, you know what? All right. We need to spread the word and let people know that if you’re going to be working with someone, again, like you do you, I’m all about people doing what works for them. But I think when you are thinking about, like, how can coaching fit into my life, lifestyle coaching, all these different kinds, I just strongly encourage people to interview different coaches. So, like you may talk to me. And that’s great. 

But I also want you to talk to other coaches. And so, maybe you go talk to a certified health coach, or maybe you talk to someone who’s not certified. And for you, that works. It’s, you know what, you do you. It’s your money. At the end of the day, it’s your life. You need to find somebody who fits for you. And if you do find that good fit, honestly, you’re going to get more results out of that regardless of the technique that they’re taking. Because if you don’t buy into the services, you’re never going to get anywhere. 

[00:52:57] Cheryl:
That’s beautiful. This is so fun talking. I know we could talk for hours, but do you have anything else that you wanted to say about either behavior analysis, chronic illness behavior coaching, or your own journey before we start wrapping up? 

[00:53:13] Kristen:
Yeah, I think it’s just about, I think like final thoughts, final words, is you don’t have to do it alone, you really don’t. And so, that support can come in a lot of different forms. And so, if you find that your support is the people, the immediate circle in your life and that’s working for you, then there’s no need to fix it. It’s working for you. But if you find that like, man, I really feel like I would be in a better place if I could do this that whatever, you can do those things. And so, just getting creative and figuring out, like, how do I achieve those goals? 

So, maybe it’s joining a support group. Maybe it’s getting active with other patients or maybe it is pursuing something like a coaching kind of situation. Because at the end of the day your rheumatologist, I mean, they see you for the total maybe an hour a year. And changing behavior is really hard. And so, to put it on the patient, just here’s this list of things, go make it happen. That’s, I’m not blaming anyone here, but I do think that we need to support behavior change in a more realistic level based on what our science tells us. We know that’s not a very effective way to change behavior. And so, again, there’s no shame in like reaching out and asking for that extra support, that extra help, if you’re feeling like I could be in a different level with my chronic illness and I’m not where I want to be, and why is that?

[00:54:35] Cheryl: 
That makes so much sense. And I think that insurance companies are slowly coming to realize that for chronic conditions because frankly, they’re concerned with their bottom line and it saves them money if people can change their behavior. I think it’s a little bit of a human bias to want to think that if we just had access to the right information, we would automatically change our behavior. And that’s not true, right? How many of us know that you should stay calm and rational during an argument? That knowledge doesn’t make you able to do it. And I know that in my program, The Beginner’s Guide to Life with Rheumatoid Arthritis, there are nuggets of information that I’ve put in there that I know that the patients weren’t taught before, and I’m proud of being able to tell them that, but I also think that’s like the first step, right? You have to then take that knowledge and translate it into daily practice and behavior change to have the life that you want for a lot of people. So, yeah, I love that you don’t have to do it alone. I was going to ask your message to newly diagnosed patients. 

[00:55:28] Kristen:
Addressing mental health early, I think that is also a really big tool or key to my success is that getting out in front of it and just working on all of those things before you are having to dig yourself out of a hole. 

[00:55:42] Cheryl:
You’re just resonating with me because I waited so long. And it wasn’t like I had any negative thoughts about therapy. I just thought, and I’ve heard other people, so many people say it ever since. I just thought it wasn’t bad enough. I was postpartum when I finally had the actual realization like this is bad enough. But at first I don’t want to, I’m not having self-harmful thoughts. I’m not having thoughts about my life isn’t worth living. I’m not, it’s not that bad. It’s just I feel constantly like on edge and irritable and anxious. And I actually had a, this wonderful woman who she actually worked for the Arthritis Foundation at the time. And I hadn’t seen her in a while. My son was like 11-months-old and I think she was trying to have a baby and she was like, “How’s it going? Tell me, like, what,” and she said, “How has your life changed?” ‘Cause I hadn’t seen her in a year and I literally remember the first thought to come in my head was so quick and so strong. It was like, “Everything is worse about my life. Everything is worse except for the fact that I feel that I’m happy that I am a mom.” Like, I’m happy that this happened like on a logical level, but and that’s not a kind of thought that I had ever had before, like, even when I was at the worst one diagnosis, I never thought everything about my life is worse. 

And so, it was like, oh, this is not me. And I actually got a little tearful. And then, of course I go back on this like aggressive pep talk to her of, wow, it’s been really hard to me, but I’m sure it’s going to be great for you. You’re going to be great. You’re going to love it. You’re going to be one of those moms who’s just this is the best thing ever. But I was like, in my heart, I was like, everything about me is worse. I have less patience. I’m more sick. I feel dumber because I can’t think clearly. And so, and again, it’s not that wasn’t maybe objectively true, but I needed support, and I could have gotten that support so much earlier. So, yes. 

[00:57:24] Kristen:
Absolutely. Yeah. And therapy doesn’t even have to be a one-time thing. It can be something where you go and you’re like, okay, I’m doing pretty good. We titrate off. And then, I noticed myself slipping a little bit. I’m not full blown thinking my life is worse. But I’m also not where I was two months ago. So, I’m going to go back and we’re going to do a little refresher and then we’re going to be on our way. So, I think that’s another thing, don’t be afraid to go back to therapy too. And don’t wait for it to be out of control before you go back. Like, your therapist loves to see your face and know that you’re doing okay but you just need a little extra boost. 

[00:58:00] Cheryl:
It is the one thing if I could change anything in my life, I would have gotten mental health support earlier That’s a wonderful note to end on, I think. I’m just so grateful for you for taking the time to show your perspective. 

[00:58:11] Kristen:
Thank you so much for giving me this opportunity because I love the fact that you asked about like the ABA question, just because that is one of the things that I really enjoy doing, is getting the word out there that ABA isn’t necessarily what you thought it was.

[00:58:27] Cheryl:
Yay! Well, I’m so happy again that you’re here and I hope that people take the time to look at the show notes to get some more information and to figure out how you can connect more with Kristen. So, thank you. 

[00:58:45] Kristen:
Thank you so much. 

[Ending note]

Thank you so much for listening. To today’s episode, don’t forget to check out my latest courses and resources on my arthritis life.net. This podcast is brought to you by The Beginner’s Guide to Life with Rheumatoid Arthritis, a four week online education and support program that I created from scratch to help people with inflammatory arthritis learn everything they need to know to navigate the social emotional. Physical and logistical challenges of rheumatoid arthritis and related diseases. You can also connect with me on my social media accounts, on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes. 

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net. And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone, who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes, or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.