fbpx
Copy of Episode
Blog, Podcast

Best Advice for People Newly Diagnosed with Rheumatoid Arthritis

July 28, 2020
41 min read
FacebookXRedditPinterestEmail

Do you know anyone who’s been recently diagnosed with rheumatoid arthritis?

This podcast episode is for them! I share my best advice for newly diagnosed patients from my 17 years of living with RA plus my expertise as an occupational therapist…

But if that’s not enticing enough…I ALSO included messages from seventeen other patients who shared their best advice and words of encouragement, and you will not want to miss these! I also included a transcription of the full episode at the end of this post!

Copy of Episode

Here’s the episode breakdown:

  • 1:10 – Episode introduction.
  • 2:08 – Analogy for those newly diagnosed – unexpectedly finding yourself a tourist in an unfamiliar land.
  • 4:08 – Advice for the initial adjustment period.
  • 6:30 – Tips for educating yourself about your condition without going down spirals of confusion or overwhelm.
  • 10:00 – How to best utilize social support, including social media.
  • 18:15 – How to best interact with your providers and medical team.
  • 20:15 – How to choose the best treatment ideas for you.
  • 31:44 – Tips for managing stress and taking care of your mind.
  • 40:00 – Concluding thoughts and words of encouragement.
https://thoughtful-experimenter-636.ck.page/2c6e14615f

Links discussed in this episode: 

Thank you so much to those who contributed their words of wisdom!
⠀
From Instagram: @hopeamidthepain, @Rheumatoiddiaries, @TheNarcissistGames, @Sje70,@deepa.venkatraman, @drmaggiecadet, @A.shrummer, @Jbayze2018, @worldofot, @boop911, @Kim_e_sue, @Mommywithmctd, @ra.and.me. @bookhimdanno, @paulaburza, @risingabovera
⠀
From Facebook: Monica Thomas, Laura Muller, Christopher Vance.

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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.

EPISODE TRANSCRIPTION

Introduction

Are you ready to hear some truth bombs on today’s episode? I’m going to be showing my best advice for newly diagnosed patients, but you will not only get to hear from me. Actually, 17 other patients either e-mailed or called and shared voicemails of their best advice. So, you are not going to want to miss this episode, trust me. 

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 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 today I’ll be sharing advice for newly diagnosed patients. But honestly, a lot of this is still really relevant to me 17 years after my initial diagnosis. So I’m pretty confident it’s going to be relevant to pretty much everyone, not just people newly diagnosed. 

This episode is a lot, so I’ve organized it into six main themes. And at first we’re going to talk about how to adjust immediately after your diagnosis, which is kind of an often overlooked time. Then I want to share the tips on how to best go about educating yourself about your condition. And then I’m going to explore how to best use social support, how to have a good relationship with your doctors and medical team, and then how to choose the best treatment plan for you. 

And then we’ll conclude by talking about the best ways to manage your mind and to be kind to yourself as you cope with the stress of a new diagnosis and the new way of life. 

Advice for Immediately Post-Diagnosis

OK, so let’s start with the beginning. That initial diagnosis. I’m going to share an analogy that applies here, but it’s actually from Emily Perl Kingsley’s classic essay called Welcome to Holland. She wrote that to kind of share with other people what it’s like to be a parent of a child with special needs. But I’ve adapted it to apply to the situation of inflammatory arthritis as well. 

OK, so imagine you have been planning a trip to France, you’ve read the guidebooks, you booked your tours, you planned the perfect Instagram worthy photoshoot at the Eiffel Tower. You’ve made reservations at the best restaurants and you are ready for France. But at the end of your 12 hour plane ride, the announcer suddenly gives you a warm welcome to Spain. 

Wait, Spain, what is going on? You didn’t plan for this. You planned for France, not Spain. You asked the flight attendant and they simply explained the plane has been rerouted to Barcelona. And let’s just pretend for the sake of argument, you can’t easily get from Barcelona to France. 

Now, not only has your destination changed, but your body seems to have changed, too.  The things that used to seem easy for you are suddenly harder and more painful. 

You get tired after the fifteen minute walk from the deplaning area to the baggage claim. Your hands are achy when you try to put your clothes on after you enter the bathroom. So you don’t just have to get used to a new way of life in Spain. You also have to get used to a new body that you’re inhabiting now. 

You desperately want to find a way to France, to the journey that you had planned and the way your body used to work. But the thing is, this is where you are now. Something happened in that airplane, and this is your new normal. 

OK, so I think you get the idea of this metaphor now, right? A life with rheumatoid arthritis or any other chronic illness is like the Spain of the story. 

Having your life rerouted is a huge deal and you are likely to have big emotions about that. And I encourage you to just feel those feelings and let yourself to grieve what you lost. Spain is not France. Your body is not the same. And you will likely always miss the idea of France and the body once had on some level, but at the same time, don’t get lost in your grief for what could have been. Given that Spain is your permanent destination now, the sooner you learn to adapt to it, the better. So don’t let your grief blind you to all the possibilities that are still available in your new world.

As Rheumatoid Diaries said on Instagram, “take time to come to terms with your diagnosis and be kind to yourself. Take it one day at a time.” 

And you know, when I facilitate arthritis support groups, I often remind them that finding the balance between grief and adapting to your new normal takes a little time for most people. It’ll be kind of like a teeter totter where sometimes you’re going to be unbalanced towards one end or the other for a little while. So try to just be patient with yourself. 

As Monica Thomas said on Facebook, “The new diagnosis is part of your life journey, and yet it doesn’t define you. You will learn to navigate. Be patient and be kind to yourself.” Thanks, Monica.

Mary Beth also on Instagram at Boop 911, which I love, She had three things to say about this stage. “One, know that this is not the end of the world. However, allow yourself to be sad for the life you thought you were going to have. You are entitled to that to be filled with hope that you are going to learn to take better care of yourself. You’re going to meet some amazing new friends that are all fellow spoonies.”

By the way, spooning is a metaphor for people with chronic illness. I’ll talk about that one later. 

“Three, start finding ways now to laugh at yourself, because at some point things will get you down. For example, you’ll drop a million things a day and you’ll need that humor to carry through.”

I really love that last point, especially thinking about the things like, you know, dropping things. And it’s so true that it’s easy to get frustrated with yourself. But if you can find humor, it will go a long way for your mental health. And actually, I think that’s been one of the most fun parts for me about social media, is connecting to other patients through humor. 

The Education Stage

But the next stage I want to talk about is after the initial shock wears off, you start facing the reality that you’re actually yes, in Spain, in rheumatoid arthritis land or other inflammatory arthritis land. And it just makes sense to look for a guidebook to how to live here, right?

This is what I call the education phase. So, educating yourself about your condition sounds like such an obvious thing. But many of us have grown up thinking that being a patient in the medical system is like a passive experience. 

You know, you go to the doctor, she tells you what’s wrong. She gives you the treatment. And that’s kind of it. That’s what it’s like when you’re a kid, right? Well, a kid without a chronic illness, I should say. But this model applies to short term acute illnesses like an ear infection. 

But what about long term ones? Since you’re going to have inflammatory arthritis the rest of your life, you actually need to learn how to make decisions, how to learn what the disease is all about. You need to learn about the medications and what to actually do on a daily basis to live and cope with this. 

So because this phase can be so overwhelming, I developed a program that I think is really great to help people go through the learning process with support and guidance so you don’t have to do it all on their own. And this is called the Beginner’s Guide to Life with Rheumatoid Arthritis (NOTE: this name has been changed to the Rheumatoid Arthritis Roadmap). 

And by the way, I’m just mentioning it now because the doors close this Friday, July 31st, for the next session. But anyway, you know, most people, as I said, have to figure out how to manage it all on their own. And they have lots of advice for you. 

So Stacy from Instagram says,

“As someone who has had R.A. for forty five years after being diagnosed with juvenile idiopathic arthritis, I think the best thing a newly diagnosed person can do is educate yourself. R.A. is much more than a disease that causes joint pain.”

 Yes, that’s so true. And Laura Miller on Facebook said, “I am a huge advocate for empowering the patient, making sure they have a seat at the table when key decisions are made in terms of access to medicines, that also that a patient has the tools, resources and knowledge to sit across the table from doctors and have informed and critical conversations too often in the past. Laura says, I used to take what a doctor said as gospel, and only in recent years, after having done extended reading, extensive reading, I started working alongside doctors in developing treatment plans versus just accepting what I was told.” Laura, that is really great advice. 

I kind of want to say that to everyone. But you really are a partner with your doctor when it’s a chronic illness, it’s not just a passive thing. 

Lastly, from Hope Amid the Pain on Instagram kept it nice and simple. And she said,

“Remember to listen to your body and educate yourself. You know you better than anyone,” which, you know, that’s so simple. But it’s actually hard for me to remember sometimes to just do the simple task of slowing down and listening to my body.” So I thought that was great. 

Jackie from Instagram said, “My advice is to not only do research yourself, but have a support network that does research to my husband, often notices things or thinks of different questions to ask the doctor than I do. Also, don’t be discouraged if close family doesn’t get it along with my husband and a few friends. The online community is amazing.” Thank you, Jacki. 

So, again, if anything around this topic is really overwhelming to you, make sure to check out the show notes because registration is closing soon for the next course, the Beginner’s Guide to Life with RA (ADDED LATER: changed later to RA Roadmap). 

Social Life & Social Media

So the next thing is that we need to talk about social connections and social media. So for better or for worse, social media is one of the most common sources of information about your disease. And I am part of lots of different social media groups. And at least once a day, I’ll see a newly diagnosed patient post about their journey and ask for support and guidance, which is great. It’s only natural to want to talk to others who’ve been there before you. 

But I really have come to see social media as a double edged sword. There are lots of incredible things like social support and sharing of ideas. But there are also some really problematic things, like people sharing misinformation about miracle cures or scaring each other away from taking potentially helpful medications. 

So really, with social media, my best advice is to take everything with a grain of salt. You know, think about when you read restaurant reviews, you don’t expect that you’re going to agree with the tastes of every single person that reviewed that restaurant, right? One person’s favorite dish is another one’s least favorite. And what worked for one doesn’t necessarily work for another. So in the similar way, treatments really vary between patients and what works for one doesn’t necessarily work for another. 

So, while it’s often said in rheumatology and in chronic illnesses that patients become the expert in their own journeys and care, that is totally true and valid. But that doesn’t mean that you as a patient are an expert in someone else’s care.

You’re an expert in your own journey and your own care on your treatment team. But that doesn’t mean that you have the ability to understand what’s going on in someone else’s body. And so I would encourage you both on the giving and receiving end on social media to, you know, obviously feel totally empowered to share your own journey. But be careful in making assumptions that what worked for you will work for someone else.

So in general, it’s hard to make like black and white rules. But I like to say, you know, I go to social media for social support and for maybe daily living hacks and adaptations. But when looking for, like, really detailed evidence and learning about different treatment options and medications, I really recommend using, like, a higher quality source of information like non-profits or medical centers.

And a general rule of thumb is, you know, websites ending and like .org or .edu tend to be really a lot more heavily vetted through, like having making sure they’re reviewed by scientists and other experts. So but again, find your own balance, you know, do what works for you. 

So, you know, not surprisingly, the audience also chimed in with some great ideas about social support in general, not just social media. So and also, not surprisingly, people didn’t necessarily agree on the best way to go about this. 

So, for example, the Narcissist Games recommends that you “talk to other patients before you make a decision about treatment.“

However, Deepa said, “Do not Google, do not join negative Facebook groups and they will drive you to depression.” And I have to say, I have heard that many times, that people have gone to groups that are kind of having a vibe of like complaining and venting, which, again, there’s a time and place to grieve and vent, but they can give you a warped sense of what’s actually possible out there. 

And I always remind people, the people who are doing well and medications like the first five years after I started Enbrel, I was in complete medicated remission, which meant I had no symptoms of RA in my daily life. I just took the medication. And so I was playing soccer. I was swing dancing. I was traveling the world, you know, so I was living my life completely in a way that didn’t really have to take my disease and account, other than the medications. So I wasn’t on any Facebook groups or social media groups because I didn’t really need to process it. It was just kind of like, oh, yeah, go to the doctor, get your meds. 

Obviously, it’s a lot more complicated for me now. But remember, the people who are doing great on medications aren’t necessarily active on social media. That’s the point. 

And now I’m going to play you three voicemails that kind of explore this topic of social support. And I, I really love these, so I hope that you enjoy them, too. 

“My name is Fiona Melun and I gave my Melun Musings on here and I was diagnosed with ankylosing spondylitis two years ago. I live in London. 

Um, it was like a bomb being dropped. And I think it depends on who’s breaking news to you. But mine was quite negative and doom and gloom and I went to a rheumatologist and was mortified. But I would suggest I think that you immediately turn to Google and Facebook for forums, and I think you need to be careful with that because a lot of it can be disbarring, I would suggest reaching out to the charities and websites such as. In London, there is not strangulating spondylitis and this is arthritis for all kinds of arthritis, suggest getting in touch with them and trying to speak to people who are your age. 

The stories have really varied when you can get in touch with those groups because it’s such a spectrum and you can fall into that category, which is fabulous. Or you might fall somewhere else on the spectrum. 

And it’s good to get in touch because I think there are positive stories and help on how to manage as opposed to just reading something on the Internet. It’s good to maybe speak to someone as well. If you want, you could get a second opinion also and make sure you’re happy with the care they are receiving at your hospital. I think that’s really important, actually. 

Have a rheumatologist and a team that are really supportive and encouraging in these hospitals because one of my doctors suggested it. She didn’t think that my rheumatology team is giving me everything that I needed and I’m really happy that I moved. So that makes you happy with your can someone who can listen to. 

 So my advice to everyone and to any single person that’s new, even if you don’t know anyone with this condition at the moment, even if you’re the first one in your family to have it, or even if you’re one of the ones in your family that does have it and you know how it goes, I know that you are never, ever alone. There is this huge community of amazing warriors out there on social media that you can easily connect to. 

And we all love to talk. We always want to talk to each other, support each other in many, many ways possible. 

Now, one word advice to everyone would be to simply try things out. You’ll probably hear a lot of things about nutrition, about supplements, about exercise, and just try these things out, see what works for you and your body, because we are all so individually different. 

What works for one person might not work for another. So give it away, give it a go for a few weeks, see how it makes you feel. And you never know. Maybe something natural that doesn’t involve medication can help you feel at least a little bit better, which is a win, right.” 

“Hi, my name is Effie and I’m from Chicago, Illinois. I’ve lived with juvenile idiopathic arthritis for 15 years.  My best advice for newly diagnosed patients is to not be scared of taking medication no matter what your treatment plan looks like. 

Act fast and don’t delay and just know if you do feel scared. It’s OK. And don’t hesitate to reach out for support and help if you need. So there are so many people out there, online social media, even in your own networking where you live and doctors have a lot of resources as well.” 

Get Lots of People on your Medical Team!

OK, now I want to talk about how to best work with your medical team. So my biggest advice here is to just utilize all the available resources, because many people think that they can only get help from their rheumatologist and rheumatology nurse. But there are actually so many other health providers who can help you, including pharmacists, social workers, occupational therapists. 

Of course, I am an occupational therapist, so I’m a little bit partial to us, but also physical therapists, counselors, psychologists, psychiatrists, podiatrists, certified hand therapists and all sorts of alternative medicine providers like naturopaths. 

So when it comes to finding a provider in the first place, Sue from Instagram reminds you that you might have to change rheumatologists a few times before you find a good fit. And that’s good advice across the board for specialists. So if you don’t like your first provider, you have the right to try to find another one that’s a better fit for you. 

And Deba from Instagram has great advice here. She says, “Be your own health leader and set goals to work with your medical team.” Jackie also says, “Always, always, always advocate for yourself. You know yourself better than anyone else can.” That was great. I thought that was great. 

And I was also lucky to hear from Dr. Maggie Cadet, who is an amazing rheumatologist in New York, who, by the way, if you’re not following her on Instagram already, you should be. She posts often and she has amazing reflections to share. 

And she said: “From a physician perspective, I want and need patients to educate themselves, as well as with the physician guidance to stay active, be open with questions about therapies, be honest about physical and psychological symptoms and be an active participant in their care and not lose hope.”

Wow, so much advice packed into one quick paragraph. And I really love what Dr. Cadet said about being an active participant in your care. And so self-management is actually the term. And it kind of sounds vague, but it’s the kind of medical term for the things patients do on a daily basis to manage our condition. Everything from diet and exercise to taking rest breaks, to conserve your energy, to practicing meditation for stress management. 

Treatment Tips

So I want to talk a little bit more deeply about treatment ideas. Now, Deeper from New Jersey recommends that you, “Remember there is absolutely hope for a pain free, active, healthy life, even with RA, remain active, move even when it hurts. Meditation and yoga are very underrated to combat physical and mental pain.” 

And Ashley from Instagram says, “Check your diet and journal every day, things that you put in your mouth and the reaction the next day.”

So certainly a diet is probably the biggest area of, how should I put this, diet is the area that there seems to be a huge variance between people. So you’ll hear, like, on one side of the spectrum, somebody who went vegan and had amazing results for their R.A. Someone else went Keto, which is like kind of almost the opposite of vegan. And they also had great results. 

And it’s lik,e it’s really the case that, like, you know, it’s going to take some trial and error for most people to see what in your individual body works. But there definitely are quite a few anecdotal stories and some research articles that show that, you know, certain foods can trigger, you know, symptoms in different patients. 

So these symptoms either being fatigue or or pain. And one anonymous, she said, “Don’t feel bad when you need a break and keep track of what helps you feel better.” 

And I wanted to put a quick plug in for a chronic illness behavior coaching and behavior analysis is something that I’ve learned a little bit more about recently because I had known about behavior analysis from working with children with developmental disabilities. But actually the behavior analysts, or board certified behavior analysts can also help you with health related behaviors, because I think a lot of us get to a point where you like, you know what to do, right? You know you’re supposed to diet and exercise, but you don’t necessarily know how to get yourself to actually do it. 

And secondarily, you also sometimes don’t know how to take data on your own symptoms and how your behaviors affect your symptoms. So the example of diet and food is an example of finding a correlation between a behavior you take during the day, like, okay, I’m eating something really sugary. And then what is the effect of that behavior? Like, did that cause more symptoms in you or did it not? So behavior analysts can help you with that stage, which is really great. I’ll link to one Kristen from Warriors’ Move Mountains in the comments she’s on Instagram, she shares a lot and she’s also a patient, so she gets it. 

And so the other thing I wanted to say about treatment ideas is that I’ve seen over and over again patients go through like a predictable cycle. So at first we all naturally as human beings want to look for a shortcut. And so the thing that people ask about on social media is, do I really need to take these scary medications? Has anyone done a diet or natural cure for this? 

So this is a super valid and totally normal question to ask. 

But the honest answer, that I kind of alluded to earlier is that there is no ONE diet or one natural cure that is guaranteed to work for everyone. But just like, there’s no prescription medicine that is absolutely 100 percent guaranteed to work for anyone either. 

So, you know, of course, there are some people who try the natural route and experience relief. And I honestly believe they have really good intentions when they come on to social media and share their success stories. But I have to say, it’s problematic when they assume that what worked for them will necessarily work for someone else. 

So the fact is, inaction is, inaction IS an action. So is, space, an, space, action. Not taking Western medicine immediately after your diagnosis is one action that can directly cause harm to your body, because there’s a wealth of evidence that shows that early disease control through medication can give you the best chance at preventing long term deformity and disease activity. And all you have to do is look at case studies from all the patients before the nineteen nineties who had rheumatoid arthritis. 

So in the 1990s, the better treatments started becoming available like disease modifying antirheumatic agents. And in the late 90s, early 2000s, the biologics became widely available. And before that point, after a diagnosis, was a guarantee of lifelong joint deformity and pain for most people, the ones that didn’t have the fortune to go into spontaneous remission. 

So, you know, simply, it is not the case now with modern medicines that it is a guarantee of long, long term deformity. You have a much, much better case of living, a quote unquote, normal life. I don’t like the word normal. It’s kind of problematic, especially, again, with my background, with working with people with developmental disabilities. But, you know, living a full life without pain is actually possible for many people with rheumatoid arthritis. 

So unfortunately, something to do with the human mind, how our brains are wired makes it really hard for us to see the risk of inaction, of not taking the medicine. 

What we tend to focus on is the cost or the risk of the medicine itself, which I am not going to deny exists. The medications do have side effects and that is that is true. But they’re not also not guaranteed for everyone to experience. 

You know, there’s a big medical disclaimer on all these episodes and all my content. I’m not giving you medical advice or medication advice. I’m trying to share the observations I’ve made. And you know, how I came to my own decisions about the medication aspect of treatment and to help you kind of think through your own decisions.

So I approach this with a super open mind and I look at all the available evidence. I have a master’s in occupational therapy, which is a health field, so I have some experience, not a doctor, but I have experience with, you know, reading scientific journal articles and evidence. 

And it was just really clear to me that my rheumatologist’s recommendations about, you know, taking the medications were absolutely going to give me the best chance of long term disease control. And that was in the beginning stages. 

And since then, I have explored other routes and I’ve talked to a naturopath. I’m very lucky living in the Northwest. We have some really, really well trained naturopathic doctors that in my case, I have one that actually also has an autoimmune disease, which is just like a unicorn. I’m so happy. And she has given thesame advice as well. 

And again, it’s really, you know, medical advice has to be tailored to your own history, your own situation. And so, you know, that’s what I’ve been able to do, is, you know, continue looking at the best available evidence, looking at my own history, that the severity of my disease is such that I am continuing on the Western medication route. But I’m always open to and experimenting with other things as well, because, hey, you know, like my old soccer coach used to say, you know, control the controllable or, you know, he used to say that in terms of like the referees. 

But you know, I could ramble on about my own journey forever. But it’s very common in the beginning to struggle about whether to try the natural routes or Western medicine. And it’s often posed as this, like either or, and I’m hopefully I didn’t make it too much that way, but I even my own mind falls into that trap sometimes. 

But really, you know, there’s a lot of wisdom in making the decisions based on the best available science at first, which is, you know, in my case, I found that the best available evidence was for the Western medicines. But then, you know you can, you know, then try the other alternative routes, because if there is, you know, randomized control trials are like a gold standard and scientific evidence. 

But what I joke about with both my Western and my naturopathic doctors is, you know, no one has done a randomized control trial on ME. And at the end of the day, I am the one that is at the, you know, facing the consequence of my treatment plan, right? 

So, you know, if it turns out that for me, you know, like I was joking to my doctor, you know, if it turns out that I just need to stand up and spin around three times and eat five gummy bears, like even though there’s no evidence for that, if I do that and it’s not that hard and it works, why wouldn’t I want to do that, right? 

So there’s also patients who have started with the Western medication route, kind of putting their eggs in the basket of the area where there’s the most rigorous evidence. But then they’ve also at the same time tried the natural cures and or natural routes. There’s many of them. It’s not just one. And they’ve been able to control their disease with natural things like diet and such. And then they’ve been able to slowly wean off their Western medications over time or it’s been kind of an up and down process. 

Maybe their disease severity has gone down and they’ve been able to do the diets and then that work for them then. But then maybe their disease gets a little bit worse and then they have to go back on the Western medicines for a little while. And so, you know, it’s not such a black and white either or. 

But, you know, for me, I just wanted to share my thinking on it because it is such such a common question, especially for newly diagnosed patients. 

So, kind of to go back to the ten thousand foot view of being a newly diagnosed patient and looking at different treatment plans, I wanted to replay something from Sarah Dillingham’s interview because she pointed to three things that help her manage her rheumatoid arthritis and rheumatoid disease. And it’s the same thing, it’s just a different name for it. And I thought they’d be really helpful for you as well. So let’s listen to that. 

“I find it’s really good, you know, to optimize your management of your illness. For me, what works is being in a supportive patient. And I can vent because I don’t want to wear out my family all the time with it, but having a good rheumatology team and also then being able to have access to really solid information from people like Arthritis Foundation. So I think those three things are coming together and it really makes it, you know, a good difference for me having a lot. It’s really helpful.”

Tips for the Mental and Emotional Side of Rheumatoid Arthritis

OK, so now we’re getting towards the end. We need to talk a little bit more in depth about how to manage the mental side of things. So autoimmune diseases and basically anything that causes chronic pain at some point will cause stress for most people. So you are not weak for struggling or needing support. 

My journey was a little bit interesting because I didn’t start going to therapy until my son was one year old and I was having some issues adjusting to what I was still considering postpartum at the time. And I originally thought that was mostly what we’re going to talk about, parenting and adjusting. 

But we actually ended up spending a lot of time, like, processing my chronic illness journey and how my health condition was affecting my feelings of being really overwhelmed as a new parent. And then I realized through therapy, like, how much I could have benefited from it earlier. 

So my biggest advice in the mental health area is to not wait until things are really bad before you get started with a therapist. And I mean, one of the reasons is it can take a while to find a good fit. So it’s better to get the ball rolling when things aren’t super, super bad and you’re not in a crisis. So that way you have someone you know who already knows a bit of your history and you can call on them if or when things get worse. 

So, I’ve ended up having two therapists over the last six years. One is the psychologist I mentioned and then the other as a psychiatrist. And I wanted to share one of the funniest conversations I ever had with my psychiatrist, who, by the way, he provides hour long therapy sessions. So, not everyone knows that psychiatrists do full therapy, not just medications. 

But he said, “Oh, it sounds like you’ve gotten really good at figuring out how to manage your life so that you feel in control and you avoid your anxiety triggers most of the time.” 

And I was like, “Yes, thanks for the compliment. You know, I’m amazing.” And he is like, “No, that that wasn’t a compliment.” 

And I was like, “What?” But so I didn’t get it at first, because it made so much sense to me. Like, you know, anxiety is painful. And so I’ve learned how to avoid situations that cause anxiety so I can control my life, so I don’t feel anxious. 

And but, you know, what he was getting into, and this is a longer conversation, but avoidance is actually not a good long term strategy for anxiety because it’s kind of built on this illusion, which is a, the delusion is that you can actually control your life to avoid anxiety and that avoiding it is a good thing. 

But really, anxiety is just a normal response to fear. And you know what? If you’re going to live a FULL life, you are going to feel some degree of anxiety at some point. So we need to actually learn how to cope with situations that trigger it. If we only focus on avoiding it, we never actually build our capacity or our ability to cope with anxiety and all kinds of uncomfortable emotions. 

I’ve learned they’re not something to be feared or problems to be solved. They’re just part of life to be able to sit with and really tolerate over time. It doesn’t mean you have to like them, but you can’t live your life completely trying to avoid discomfort at all costs because you’re going to end up living small. So, and also it’s just not possible. You literally can’t avoid pain in life, whether that’s physical or psychological. 

So, you know, I’m going to delve into this more in later episodes. But, you know, the technique I found the most helpful from both my psychiatrist and psychologist is acceptance and commitment therapy, which is also known as ACT. 

And the word acceptance is definitely commonly misunderstood, but it doesn’t mean resignation. It doesn’t mean thinking that things will never get better. It means, it’s a mindfulness-based approach that means in the moment, being able to sit with or tolerate whatever is happening without trying to change it or alter your perception of it, just being able to literally sit with the world and with your situation, exactly how it is at the moment, being willing to do that.

So it’s taught me that I can live a full life now, even with pain or with anxiety, and that I don’t need to avoid them at all cost. 

Ushma, who’s also an inflammatory arthritis patient from the world of OT, she shared some similar wisdom and she said, “Practice embracing uncertainty, letting go and not being in control. It will take you a long way.” 

And I just resonated so much with that. Uncertainty is definitely the other trigger for me. Anxiety trigger. So, you know, when I don’t know the right path or what to do, I tend to feel really anxious. And that’s really, really common. 

You know, I mentioned earlier with medications and treatment plans, it’s it there is going to be uncertainty. No one’s ever going to be able to have a crystal ball at this point. It is not realistic to expect anyone to have a crystal ball to say, you know, you should take this or you will do great if you take that. So you have to learn how to be able to cope with uncertainty. 

And Chris on Facebook said, “When you have a name, because you finally have a name for what’s been going on with you, you might be depressed, that there’s no cure. This is totally normal in human strife. Hard to rest your soul. We can’t totally control it. But stress and worry are killers and try to accept yourself. Morrissey saying, I am human and I need to be loved just like everyone else does. And that’s a great starting point.” I love that. I also received two voicemail entries that built on this idea. So let’s hear them now. 

“Hi there. My name is Caleb. I’m from British Columbia, Canada, beautiful west coast. I’ve had rheumatoid arthritis for about ten years. However, it took me almost eight years to get diagnosed. I wasn’t diagnosed until I was twenty years old, even though my symptoms started when I was twelve. My best advice is to grieve, find whatever you need to do to look after your mental health during that time, because it’s a big thing. You really need to make sure that you’re taking care of your mental health as well as your physical health.” 

Next, we’re going to hear from Heidi Wimar. I really love her message here, and I hope you do, too. 

“I would say stay positive because every day is different. There are going to be good days and great weeks and bad days and bad months.But find those positive moments in life and hold on to them because they’ll get you through the roughest times. It’s only been a year for me, but I have been able to find the positive in the darkest moments where I feel like this is the end. Like my body is never going to go back. I’ll never be able to feel happy or joy or get out of this pain. And I will think of a time that makes me happy and I find that positive. Where I did a load of laundry, I folded a stinking load of laundry that day, even though nothing else got done. I got laundry done when I was in the most excruciating pain. 

All I can say is anybody that’s newly diagnosed, it’s not the end of the world. It feels like at the end of the world, but it’s not. In fact, it’s the beginning of a great adventure for you to rediscover who you are with this disease as a part of your life, but not who you are. It’s an addition to life, a life that you didn’t know you had.

And you can find new things that you love, new things that you can enjoy, new things to discover. I wanted to hike the rim to RIM Grand Canyon. I wanted to run a marathon at Disneyland and I still plan to do Disneyland. And my husband said, if it means I put you in a wheelchair and I’m the one who pushes you through this run or I’m the one who carries you across the line, it’s like that, I’ll do it. But it’s our adventure together. It’s finding what makes you unique and enjoying what makes you happy. Sorry, I babble on and on. It’s about finding joy and peace in the darkness and finding out your new wow.” 

That was so, so eloquent. OK, so we’re getting to the actual conclusion of this episode now. 

Concluding thoughts

So I have a lot more I want to say. But I really want to just conclude with the idea that to the newly diagnosed patient, I want to say you can do this. You might not want to do this to live with this disease, but you can, you know, as Glennon Doyle Melton says, “We can do hard things.” I really repeat that to myself a lot. 

You know, finding that balance in your life between grieving what you lost and embracing what you still have is hard. So be kind to yourself and remember, at first you’re going to feel kind of like a tourist in a new land with having to learn all the stuff about arthritis and a chronic illness. But pretty soon you’re going to be feeling and acting like a local. 

And, you know, I have some resources for you I want to wrap up with because I’ve spent a lot of time creating them specifically to help people who are newly diagnosed. And one is called the “Six Things Everyone with Arthritis Should Know.” And the other is “My RA Checklist.” And that shows you all the steps needed to organize your life and manage your condition. 

And of course, I also have, like I mentioned earlier, my paid online education and support program, which I only run a few times a year. So again, registration closes on July 31st for that. So check out the link in the show, notes to sign up.

And you know, I have done all the work of collecting the most important tips for managing pain, fatigue, stress, social effects of RA and even logistical stuff like how to be a patient, how to track your symptoms. 

And you can try to figure this out all on your own. But honestly, it takes a lot of people years. And what’s been interesting, and I’ve run this group, this program twice already, is that some of the people that I’ve had the most testi-, most strong testimonials have been people who actually live with the disease for longer. 

And I think the reason for that is that they understand how hard it is to try to figure this out, and so how valuable it is to have it all kind of organized for you. 

But here is a testimonial from a patient who took it back in June who was recently diagnosed. And she says, Sarah, she says, “I had so many questions about my symptoms and how to manage this disease that I wasn’t able to ask my medical team getting valuable information each week about things that really matter to me from somebody who gets it was so helpful. It’s obvious that Cheryl really cares about the people enrolled and goes out of her way to answer questions and give explanations. The social support that comes with this course is also invaluable. I now feel so much less alone and way more confident in managing my illness.” 

So that made me so happy to read that. That is exactly why I created it. And, you know, I also just created a free Facebook group for anyone who’s listening to this podcast to connect further with me. And I also just kind of run some polls and ask questions and there to make sure I’m making this podcast as good as it can be. So I’ll link that in the show notes. But you can just search Facebook dot com slash groups and then arthritis life podcast and support. It’s actually the longest you can make a title is what I did. So sorry. That’s just to be a very extra thing, and I hope you all have a wonderful week and yeah. Let me know. Any comments, questions, concerns, criticisms from this episode. Thanks. 

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 dot 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 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. 

The next group is going to start in August 2020. Learn more at myarthritislife.net You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even tictoc. Check out the links in the show notes.