The pandemic has forced many of us to think about all the things we can’t do as freely as before. These can be devastating and uncomfortable thoughts, but they’re all too familiar to those of us living with chronic illness.
Getting diagnosed with a chronic illness that causes debilitating pain, fatigue, and disability — like I was, as a senior in high school when I learned I had rheumatoid arthritis — causes a lot of unwanted and unexpected change and grief.
For me, rheumatoid arthritis (RA) was an earth-shattering diagnosis. The image of your old self — who you were and who you wanted to become — disappears right before your eyes, as you are placed on an unknown path forward.
Because I was diagnosed with rheumatoid arthritis as a teenager, it took me a while to fully process this loss. If I’m being honest, I’m still adjusting to how RA has changed my life.
But with 17 years of living with RA under my belt, I’m now able to recognize that these changes have also brought tremendous insight, growth, and transformation in my life that may not have occurred otherwise.
A big part of this growth has come from seeing how other people in my (arthritic) shoes have dealt with the changes from a chronic illness like RA. The answers we seek on the most difficult parts of our journeys aren’t always found in a pamphlet at the doctor’s office or from an internet search. Some of the most important lessons I’ve learned have come from fellow patients I connect with in person or online.
One of those people is Kristen Brogan, who shares her journey with chronic illness through her Instagram account WarriorsMoveMountains. Kristen, who has rheumatoid arthritis and Sjögren’s syndrome, is also a behavior therapist who has started applying the same behavior change science she uses with clients to her own chronic illness patient journey.
I had the opportunity to talk to Kristen about her perspective — as a patient and a therapist — on adjusting to life with a chronic illness. Her take on things has helped me tremendously since I started following her on Instagram and participating in one of her support groups last summer. I hope the CreakyJoints and Global Healthy Living Foundation community finds this Q&A helpful too.
Q: Can you share a little about yourself? How is your career path aiming to help people who are living with chronic illnesses like rheumatoid arthritis?
In addition to be a chronic illness warrior, I am also a doctoral candidate in cognitive and behavioral sciences and a Board-Certified Behavior Analyst (BCBA) with a master’s degree in psychology, emphasis in Applied Behavior Analysis (ABA). Practitioners of ABA use the science of behavior to help our clients identify obstacles toward reaching self-identified behavioral goals. We then work with them to develop a plan and teach them how to reach their goals in a way that is comfortable for them.
I worked in the field of ABA for several years before I was diagnosed with my chronic illnesses. I worked with a variety of children, adolescents, and adults both with and without clinical diagnoses. However, it wasn’t until my own diagnoses that I realized just how useful the tools of ABA could be for people living with chronic illness.
Right after I was diagnosed with rheumatoid arthritis and Sjögren’s syndrome, I started utilizing ABA-based behavior change strategies in my own chronic illness management. I used the science of behavior to help implement all of the lifestyle changes that came along with my diagnoses, such as diet changes, exercise changes, taking medications, and stress management.
The biggest gamechanger was when I started to work on shifting my mindset, which will probably be a lifelong process. This has made it easier to let go of things that no longer serve me. I have found a way to live a fulfilling life despite the many lifestyle changes I’ve had to make because of my chronic illnesses. It’s not a quick fix and it takes a lot of hard, ongoing work but with ABA, the authority is in your hands which I find really empowering.
Q: If someone is having a hard time dealing with changes that a chronic illness may bring, what are some tips — from a behavioral perspective — to help them cope?
This is a tricky question because ABA is extremely individualized. We take the specific behavior and why the behavior is occurring into account before making any recommendations. However, I understand that sometimes we need some tips to get the ball rolling so I will do my best.
The first tip that I would give someone is to truly identify what is the barrier or the specific challenge that is holding you back from making changes. For example:
- Is it that you haven’t accepted your diagnosis yet?
- Is it that you are holding on to old behavioral patterns?
- Is it that you are scared of the future?
It could be a combination of those or a multitude of other factors as well. Spend some time considering why you are having a hard time dealing with the changes to better understand how to move forward.
One reason we struggle with making lifestyle changes is because behavior changes are hard. When managing a chronic illness, there are a lot of changes to make and changing our behavior is really challenging and way more complex than we often think. That’s why there’s an entire field of science devoted to behavior.
My biggest tip is to give yourself some grace. You don’t need to have the perfect diet, the perfect exercise regimen, or the perfect disease flare tool kit right away. You are going to live with this diagnosis for the rest of your life, so you have plenty of time to learn what works for you. Embarking on a chronic illness patient journey is challenging but if you approach it in the right way, you will become so much closer to yourself and get to know yourself so much more intimately than you ever thought possible. And let me tell you, becoming your own best friend is pretty lifechanging.
Q: On your Instagram account WarriorsMoveMountains, you wrote about celebrating your challenges in addition to your highlights. What does that message mean to you?
While I really enjoy and value celebrating my highlights and my “good days,” it means more to me to celebrate the challenges, and I don’t think we do that enough. When people see me hiking, canoeing, or doing some other physical activity, it’s very natural to think, “Wow, she’s doing really well and that’s great.”
What people don’t see is everything it takes to get me hiking in the first place. They don’t see the flares, the days spent on the couch, the tears that I shed for the pain I endure during and after the activity, or me having to take multiple medications to manage my symptoms.
I don’t share those “behind-the-scenes” moments as much because when I do, people tend to feel sorry for me, it comes off as complaining, or they feel like they need to “fix” my situation. That’s not the point. I have a chronic illness with no cure. You can’t fix me. And further, I don’t need fixing.
I want people to know that it’s not about fixing my challenges but rather celebrating them. It’s a matter of looking at a challenging day and saying, “Wow, she is dealing with so much and she is still here giving it her all. That’s amazing.”
I want people — myself included — to start being proud of these challenges instead of feeling ashamed of them and hiding those moments.
Yes, we all want to celebrate someone “overcoming” a challenge but what message does that ultimately send when that is all we celebrate? We all know that chronic illness is way too unpredictable for that mentality. We can’t wait for only good days to celebrate.
I want to encourage all of us to start celebrating ourselves, our bodies, and our lives just as they are — both the highlights and the challenges.
Q: How can people celebrate their wins and also let people around them know how to support them?
I am a huge fan of celebrating every win, no matter how small it may seem. If you wait for things to be perfect or for something monumental to occur before you celebrate, time will pass you by without you even realizing it. There are so many different ways to celebrate the beauty in your day to day. For example, take time to be truly present in your favorite tea or coffee in the morning, savoring every sip. Give yourself a pat on the back and reach out to tell a friend if you tried a new workout you’ve been putting off. Buy yourself a little something for taking your medication this week, even though you really didn’t feel like it.
Moments worthy of celebration happen every day and there are so many different ways to celebrate them. I love finding a community of people who help me celebrate those moments as well. I have a core group of people I send text messages to when I need a mini celebration for something that went well. Increasing the number of positive events in your daily life can have a really big impact on your mindset and your gratitude.
From a behavioral perspective, when you celebrate small wins, you are even increasing the likelihood that you will engage in those types of behaviors in the future. So you get the double-win of a little celebration and you increase your chances of repeating those celebration-worthy behaviors. How cool is that?
Recruiting an accountability buddy is another great way to increase the likelihood of a behavior occurring as well as deepening your relationship with your buddy. However, I do think we need to be mindful of who we choose to let into the personal parts of our disease. It’s important to find a buddy who is interested in supporting you in the way you need to be supported, rather than supporting you in the way that they want to support you. Sometimes those two things align (and that’s the best possible combination) but sometimes they don’t. It’s important to find a friend who practices humility and kindness and who is open to learning to support you. In turn, you can be open to learning to support them in however they need to be supported.
If someone isn’t capable of supporting you the way you need, that doesn’t make them a bad person necessarily. It just means it’s not going to work out right now. So maybe put that aspect of the relationship on pause until things are better aligned. I think oftentimes the type of support we need is really specific and if we aren’t able to get it, that can sometimes make us feel worse. So don’t feel bad about walking away from something that’s not working for you.
Q: What are some signs that someone could benefit from professional help with behavior change or other mental health support?
A good litmus test for seeking out professional support, be it from a board-certified behavior analyst (BCBA) or other behavioral or mental health professional, is to ask yourself:
- Am I living the life I want for myself?
- Am I satisfied with the way I am living my life?
If the answers to those questions are no and you’re having a hard time aligning your lifestyle with the challenges that stem from your disease, it may be time to seek out some help. This is really personal and individual to each person. There’s no one thing that may signal extra support is needed. But that’s one of the beautiful things about the human experience: only you know yourself best. If you feel like it’s time for some outside support, then you are probably right.
My biggest piece of advice for anyone — chronic illness or not — is don’t wait to seek support because it “isn’t that bad.” That’s really not the point of behavioral and mental health professionals.
Yes, we can help people in crisis, but we can also help get you on the right track if you are straying just a bit off the path you want to be on. Things don’t have to be catastrophic for you to benefit from help.
Bear with my extreme analogy for a moment. If your leg hurts after playing a sport or doing some activity, do you wait until it falls off to go to the doctor? No. You go to the doctor when the pain is bad enough to impact your daily life.
In the same way that you go to the doctor when a physical medical issue is interfering with your daily life, you may want to seek support when challenges with your behavior or mood are affecting your daily life. When things are feeling off and you’re having a hard time getting back on track, it’s time to seek support from a behavioral or mental health professional.
I truly think the world would be a much more peaceful and compassionate place if we all regularly worked on our own stuff. Everyone has something they are grappling with. Throw in a chronic illness and that is a lot to deal with, on top of all the other ups and downs that come with life. I myself regularly seek out behavioral and mental health support through both individual and group therapy and find my life much more in line with my values when I am regularly receiving that support.
If you’d like to learn more about whether implementing behavioral aspects of psychology is for you, you could reach out to a BCBA (visit bacb.com to search) and see if they can provide you with a consult. Working with people with chronic illness is fairly niche for BCBAs so ask if they have experience helping people with challenges like yours.
That time to chat can help you understand if that person is a good fit for you or not. I recommend asking a few questions such as How do ‘invisible symptoms’ play a role in your practice? and How would you take data on something like fatigue? Those questions can help you identify if the practitioner will respect the invisible aspects of your chronic illness, such as fatigue and pain.
You may also get a clearer picture of what behaviors you want to work on just by having that conversation. And always trust your gut. If you get an off feeling, then it’s probably not a good fit and you should continue to look elsewhere. In the same way that there are doctors that are a good fit for you and those who are not, there are BCBAs who will be a good fit for you and those who will not.
Lastly, Kristen had some powerful sentiments to share with everyone in the chronic illness community.
In case no one has told you this lately, you are doing great. Even if your life isn’t exactly where you thought it would be or doesn’t look exactly the way you thought it would, never stop believing in yourself. I know the challenges of chronic illness are many and often unexpected, but you are doing it. And I am so proud of you. I hope you can take some time to celebrate your bravery today.
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