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Podcast

Can you live a Normal Life with Rheumatoid Arthritis?

March 27, 2021
34 min read
Episode Cheryl solo
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Episode Summary

In Episode 29 of the Arthritis Life podcast, host Cheryl Crow reflects on the question “Can you live a normal life with Rheumatoid Arthritis? She also shares why acceptance is key to adjusting to one’s “new normal” after a diagnosis like rheumatoid arthritis. She explains why she puts energy towards methods to thrive despite a chronic condition, rather than focusing solely on ways to prevent or manage pain. 

In this episode Cheryl also shares how ACT: Acceptance and Commitment Therapy has been key for her to build a life she loves despite chronic illnesses. She also shares how she’s found a balance between ways to minimize pain and ways to live a good life despite pain. Additionally she urges listeners to ask, “Can I live a good life with rheumatoid arthritis?” rather than “Can I live a normal life with rheumatoid arthritis?” 

Medical disclaimer:

All content found on the 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.

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.

Speaker bio:

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 live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare she say) FUN patient education and self-management resources. 

Episode Cheryl solo

Links to things discussed in the podcast episode:

Episode at a glance:

  • 1:20 – Why I chose this topic for today’s episode.
  • 3:00 – Does “normal” mean lack of severe joint damage? Research study showed 80% of people with rheumatoid arthritis can live a “normal life.”
  • 5:00 – What is your definition of normal – compared to what?
  • 7:00 Is a “normal life” the exact life I imagined for myself pre-diagnosis? 
  • 7:55 – Is a “normal life” one where I can experience things that are important and achieve meaningful goals and life experiences? 
  • 10:05 – Can you live a normal life with RA? It depends on what your definition is, and what your hopes and dreams are underneath your concept of normal.
  • 10:35:  You may not get the normal you wanted or expected, but can you find a NEW normal you can learn to love? 
  • 12:40 – There is no guarantee for anyone of a pain free life. Confronting that reality head on can free us from pressure and energy to try to achieve a perfectly pain free life, which is impossible for most.
  • 15:00 – How my therapists taught me the futility of trying to avoid pain and anxiety.
  • 15:45: “The hope is that you can still live a good life despite inevitable pain and suffering, that’s the hope, the hope isn’t that you can avoid it, because avoidance is not a long term sustainable strategy .”
  • 16:00 – We can and should gather evidence based tools to manage and minimize our pain and function on a daily basis, however: “If we ONLY focus on the tools to MINIMIZE pain, the problem can be the expectation or belief that we attach to the idea that if we JUST have the right tools we are going to 100% be guaranteed to avoid all pain, and I do wish that were true, but realistically it’s just not true for most people because, pain, physical or mental, is an inevitable part of the human experience.”
  • 17:15 – Difference between pain and suffering.
  • 17:55 – I was dragged “kicking and screaming” into acceptance. If you are confused, you’re not alone! 
  • 18:45: True acceptance of the PRESENT moment is completely different than giving up or resignation.
  • 20:10 – When we’ve done everything we can to reduce pain, instead of struggling with that, we can focus on: what can we still do in the present moment?  What can I still DO that ’s important or valuable to me, DESPITE the pain? I eventually learned to let go of the illusion that if I just do the RIGHT THING I could ALWAYS avoid pain, and once I let go, I was  set free.
  • 21:30 – Balancing act between plan A (using tools to minimize symptoms) and plan B (tools to “workaround” symptoms and function despite them).
  • 22:20 – We spend a lot of time running away from pain and running away from our disease, but what if we spent more time running TOWARDS things we can still do that are valuable?
  • 23:05 – What I  dislike about a “normal” life being defined as one without disease –  feels ableist to me
  • 24:15 – My old optimism: if I just find the right solution my pain will go away, RA will have no affect on my life. New optimism: me and people with it can still live rich, meaningful lives DESPITE discomfort.
  • 27:15 – My new mission: finding a balance between controlling symptoms/minimizing symptoms *and* focusing on maximizing our quality of life despite it. 
  • 27:30 – Why I developed Rheum to THRIVE membership community and what it stands for. 
  • 28:45 – So many people get stuck in this mentality that they have to WAIT until their symptoms are fully controlled before attempting to thrive or live a full life, and I really encourage you to see what is still possible in your life. What can you still do and enjoy and accomplish despite your condition?
  • 29:25: Can you live a normal life with RA? Depends on your definition of normal!  
  • 29:45 – The question I like to ask more than “can I live a normal life with RA:” Can I live a GOOD life with RA? Can I be of service to others, can I leave the world better when I leave it than when I found it?  I think YES.

Full Episode Transcript:

Episode with Speaker 1 (Cheryl)

[Introductory music]

Hi, everyone! Before we get started today, I wanted to let you know that I am launching a brand-new membership program. It’s called Rheum to THRIVE and the doors are actually open today through Wednesday, March 21st. So, head on over to my website, myarthritislife.net, for more details. I hope to see some of you there! 

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, and 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. 

[Episode begins]  

Hi, everyone! So, the topic of today is ‘Can you live a normal life with rheumatoid arthritis?’ and this is a complicated question. I first encountered this question, actually, when I was looking at my blog — I had a blog initially called theenthusiasticlife.com, it’s still out there, but my main website now is arthritis.theenthusiasticlife.com. But anyway, I somehow was poking around my website and found out that for my most popular article, the search term that was leading people to this article or this blog post was, “Can I live a normal life with rheumatoid arthritis?” and that really surprised me because I just didn’t think it was something that people would search for in a Google search engine. I knew it was a question that would come across people’s minds, but it’s such a profound question, and I guess I just didn’t know how common it would be to search it on the computer. 

It turns out that if you look up, “Can I live a normal life with rheumatoid arthritis?” it’s 50 million, and “Can you live a normal life with rheumatoid arthritis?” it’s 6 million. So, um, you know, in general, at first I thought, “Oh, normal is a problematic concept for me,” and in my background, I’ve worked with developmental disabilities and they used to call it like, you know, ‘abnormal psychology’ or ‘abnormal human development’ and there’s this kind of connotation that normal is better and abnormal or anything that deviates from normal is worse.

But I know that what people, I think, are getting at is, you know, can I do the things that I want to do in my life that I that I hoped I could do before this diagnosis kind of put a big wrench in things. I did look up if there was any research on this. I was kind of curious as an occupational therapist, and there was a study that came out a few years ago. The conclusion about this study from the University of Vienna said 80% of sufferers of rheumatoid arthritis can lead a normal life with the aid of medication. And this little study is in the show notes.

But, you know, they said that because of the newer treatments for rheumatoid arthritis, that it no longer causes permanent joint damage, and it used to be about 50% of people would have severe permanent joint damage and the other 50% would have more moderate, I guess you would say, but now it’s more like 80/20.

So, they’re defining normal from what I can see as just lack of severe joint damage, which I think for a lot of people, you know, they’re hoping to achieve something a little bit more ambitious than that. 

Also, I would wonder myself, you know, is my life kind of quote-unquote ‘normal’ or typical, if I have — if I’m able to avoid severe joint deformity, but I still have to experience things like expensive medications, always having to have a job with health insurance in the U.S., doctor’s appointments, side effects, family planning being affected by this. All these things are not typical things that someone my age who doesn’t have rheumatoid arthritis has to think about. So, I thought this is an interesting question, especially in light of some of the programs I’m developing.

So, today’s episode is a solo episode, just me talking about some of my perspectives on this and hopefully this will spark a larger conversation. I would love to hear your thoughts and your ideas on social media or through email info@myarthritislife.net.

Let’s just break it down a little bit further. So, when you ask the question, “Can I live a normal life with rheumatoid arthritis?” the first question I would have for you is, compared to what? There’s this hilarious video that I will put in the show notes, ‘Marcel the Shell with Shoes On’, and it’s a humor video. But it’s a little shell with eyes and shoes, and she says, “You know, people think I look weird, but I say compared to what?” meaning like what do you compare a shell with shoes on to?

I know humor is subjective and you might be like, what is she talking about, but the point is, you know, on a more serious note, when you say can I live a normal life, are you comparing it to other people your age? Are you comparing it to people across the globe? Are you comparing it to someone else in human history your age or your gender like 10,000 years ago? Right now, the life I’m living, even with a chronic illness, you know, rheumatoid arthritis, plus some other health issues, my life is so much more luxurious than a human’s 10,000 years ago. They wouldn’t even live till 39, you know, or even 500 years ago I’m living better than a queen, practically, depending on which part of the world you’re comparing it to.

So, I think we have to kind of ask — again, this is the anthropologist kind of in me — but, you know, what are you comparing it to? And that’s a really important question when we think about our own mental health, because if you’re always comparing yourself to someone who’s got it better than you, there’s always going to be somebody who does. There’s always somebody who’s doing better than you, there’s always somebody who’s healthier than you, prettier than you, you know, seemingly richer than you, are happier than you.

And if we only ever look ahead, or look above us, and say, “Oh, man, I wish I had what they have,” we’re going to be disappointed. And also, we’re missing the greater perspective, you know. What do we still have? What can we still do?

Rheumatoid arthritis is a very devastating diagnosis for many people, but we still have abilities that other people don’t have. So, that’s the first way I would look at it; I would ask, “Who are you comparing it to?”

I think a lot of people, when they think about, “Can I live a normal life?” they’re implying, “Can I live the life that I assumed I would have pre-diagnosis?” And, you know, I would say, no. Your life is going to be different than what you expected.

Most people, if you expected a life without rheumatoid arthritis, and you have a rheumatoid arthritis diagnosis, your life is going to be different than what you expected. It doesn’t mean it’s worse, but it is going to be different. I don’t have the exact same life I expected to have, you know, life without rheumatoid arthritis when I was 20, got this diagnosis; this was not in my life plan. But I think that I can still live a good life, and we’re gonna get to that point soon.

Another way of defining ‘normal’ or ‘can I live a normal life’ would be, “Can I live a life where I can experience things that are important to me?” like goals that I had before my diagnosis, like wanting to have a meaningful job, wanting to get married and have a family, engaging in meaningful hobbies, and then, you know, the answer for me is, “Yes,” but for other people it might just be, “It depends,” but usually yes with some accommodation. 

For example, my hobbies were mostly amenable to what my body could handle, but some people aren’t. If your hobby is really, really hard on your body or requires a lot of pressure on your hand joints, you know, like maybe, I don’t know, glassblowing comes to mind, certain sports are going to be difficult if your disease is not well-controlled through either medication or lifestyle factors.

So, this brings up one of the big questions which is, you know, all these unknowns and uncertainties, if your disease goes into remission or you’re able to achieve medicated remission or unmedicated remission, then you can live a pretty similar life to what you would imagine pre-diagnosis, just with you on medications you have to remember to take your medication, and pay for it, and it will still affect your life, but your activities can be potentially the same.

But if your disease is not responding to treatment and therapy very well and you’re still having a lot of pain and inflammation, it is going to affect your life more. So, it’s very, very hard in the beginning because you’re not really sure what your normal range is going to be. I responded so well to my first medication, I thought that was just going to be how it was the rest of my life. I didn’t think I would have to tweak and adapt things as much as I ended up doing. That was my journey. 

I mean, I wish we could just give everyone a map when they’re diagnosed and say, “This is what your trajectory is going to be,” but unfortunately, that’s not possible at this time.

All of this is iterating on this idea of, “Can you live a normal life with rheumatoid arthritis?”, it really depends on what your definition of normal is and what are your hopes and dreams underneath that concept of normal.

I wanted to look at it a little bit a different way from my experiences with the kind of therapy I’ve been to, which is called Acceptance and Commitment Therapy. One of my favorite quotes that relates to this is, “The truth will set you free but first it will piss you off,” and that’s from Gloria Steinem.

So, the truth is, you probably won’t get the exact same normal that you wanted, or hoped, or dreamed. And that’s the part that might piss you off. I wish I could say, “I have the magic pill or the magic cure that will make your disease totally go away,” and I don’t, and no one really does. There are people who have had different approaches that have worked really well for different people, but no one has the One Cure or the One Tool that is guaranteed to work for everyone as of today, March 24th, the day of this recording.

So, that’s the bad news. That’s the part that will piss you off. But the part that will set you free is the truth is that you can find a new normal, and a new normal that you can, I hope, learn to love.

It doesn’t mean that, again, it says, easy as the normal you had before your diagnosis, doesn’t mean that it’s as simple, but I do really — I know that’s maybe the optimistic part of me — like I’m having some truth bombs on the one hand; like, no, I don’t think everyone can just slide down a rainbow and have a perfect life with RA, rheumatoid arthritis, but I do think that there are choices, and adaptations, and ways we can work around it, and change our mindset, and our habits, and our coping skills to where we can still love our life. I really think that’s true for most people. 

Another thing that I think is important to remember is that most people who are healthy and able-bodied, their definition of ‘normal’ is continuing to be healthy and able-bodied, but that’s actually not a guarantee for anyone. It’s not a guarantee for the person who has the perfect exercise plan, the perfect diet; that person can still come down with a chronic illness, they can come down with cancer. Anyone can come down with anything at any time, and that is the reality.

It is what it’s — it’s always been the reality. You can definitely take steps, like you can play the odds in your favor, right. If you exercise, and you eat well, and you avoid things that are more likely to cause cancer, like you avoid smoking, tobacco, and stuff like that, yeah. You can help shift the odds in your favor but there is no guarantee for anyone have a pain-free life.

I just strongly believe that it’s important to look that reality in the face. It’s never been true in the human condition that there’s just a way to completely avoid pain and suffering. So, the sooner we can kind of confront that reality head on, and sooner we can say, “Okay, my life is going to have some degree of suffering, whether it’s rheumatoid arthritis, whether it’s something else,” it sets us free.

And you may think, “Well, wait a minute what? This is depressing, you know, why does thinking about suffering set you free?” The reason it does is because it frees you from this pressure to try to achieve a perfectly pain-free life. No one gets that, you know?

So if we kind of get our expectations so high that like if I just do the right thing, I just follow the right plan, I’m going to avoid pain and suffering the rest of my life. That is a lot of energy you’re going to have to put into something that’s ultimately, for most people, futile. 

The average person, I would say the average person is going to have some pain and suffering. Let’s just make that kind of the null hypothesis like they say in scientific experiments. The null hypothesis is that nothing will change, or that your experiment won’t have an effect. So, let’s say that the default state of human existence has been that it has many wonderful things but we also are inevitably come across pain and suffering. I don’t mean just physical pain but also psychological.

So, if we assume that that’s kind of going to happen, then we’re not surprised when it does inevitably happen. That’s been, really, an interesting thing for me to have to kind of come to terms with. You might wonder, okay, wait a minute, how did you get here?

Because a lot of people say to me things like, you know, “Oh, you’re so positive, you’re so happy and bubbly,” and I will say, for the record, that it’s true that I think — my parents say I was a happy baby, like I have a little bit of a sunshiny kind of default brain wiring, but I’m not trying, like I don’t wake up every day and say, “I want to feel perfect today. I want to feel sunshiny and rainbows every day,” I have a really realistic expectations of most of my days and actually I think that that actually helps me feel happier because I’m like, “Oh, this isn’t that bad.” 

When I first went to therapy — this is one of my favorite stories — you know, I was kind of bragging to my therapist about how good I was at avoiding like my pain and anxiety triggers, and he’s like, “Oh, it sounds like you’ve worked really hard to organize your life so that you can avoid pain and always try to feel the best you can,” and I was like, “Yeah, I’m great,” and he’s like, “Wait, that wasn’t a compliment.” 

And I was like, wait, what? How is it wrong to try to control your life so you avoid pain or discomfort? What kind of therapist is this? And basically, again, he had to kind of, over time, help me confront the idea that control is often an illusion and so, basically, you can run but you can’t hide again.

Again, that might sound like…WHAT? You know, don’t you want to give people hope? But the hope is that you can still live a good life despite inevitable pain and suffering. That’s the hope. The hope isn’t that you can avoid it, because avoidance is not a long-term sustainable strategy. 

So, when it comes to rheumatoid arthritis, I want to be clear for a second because I don’t want to say like, we don’t have — that we shouldn’t do anything and nothing matters. No. We can have — take actions in our daily lives — to absolutely have evidence-based tools to manage our pain and function on a daily basis. I mean, that’s like what I live for and I do all the time, you know, life hacks, and routines. and habits like exercise, sleep hygiene, mental health, all these things we can do to reduce or minimize pain. So, tools are good. We should have tools.

(But) if we only focus on the tools to minimize pain, the problem can be the expectation or belief that we attach to the idea that if we just have the right tools, we are going to 100% be guaranteed to avoid all pain, guaranteed. And I do wish that were true, but realistically, it’s just not true for most people because, again, pain, you know, physical or mental, is an inevitable part of the human experience.

As Dr. Russ Harris said in my favorite book, ‘The Happiness Trap’, the more we try to avoid the basic reality that all human life involves pain, the more we are likely to struggle with that pain when it arises, thereby creating more suffering. This sounds like a really straightforward sentence but it’s actually really, really deep.

There’s a difference between pain and suffering. To make it a little bit oversimplified, but pain is like the physical sensation and suffering is from the meaning we attach to the pain, and it’s from our psychological response to the pain. So, basically, if we are assuming that if we just did the right things that we can avoid pain, then when pain happens, we struggle with it, versus accepting it.

I was dragged kicking and screaming into acceptance. I did not — this did not make any sense to me when I first learned it. That’s why it’s so delicate for me to talk about it. I’m so passionate about it on the one hand, because it has really changed my life for the better, but I am reluctant at times because I am imagining the people listening to this being in the position I was before, being like, “What are you talking about?” 

So, again, please — I love talking about this stuff now though, so if you are confused and this doesn’t make sense, let me know. But, you know, when the therapist first told me about accepting pain, I was like, “No,” look, again, I’m an optimist, you know, I don’t want to accept pain, I want to fix it. I want to make it go away. Again, I was kind of pissed off, to be honest, but it’s like that Gloria Steinem quote again, the truth will set you free but first it will piss you off.

The therapist explained that true acceptance of the present moment is really different than giving up or resignation; acceptance of the present moment is something where Dr. Russ Harris says, “It doesn’t mean you have to like your uncomfortable thoughts and feelings, it just means you stop struggling with them. Acceptance literally means ‘taking up what is offered’. It doesn’t mean giving up or admitting defeat; it doesn’t mean just gritting your teeth and bearing it. It means fully opening yourself up to your present reality — acknowledging how it is, right here and now, and letting go of the struggle of life as it is in this moment,” end quote.

So, when Dr. Russ Harris says that, it’s like I can accept that this present moment is what it is. In this moment, I might have pain. That doesn’t mean that I have to give up hope that in the future I might be able to manage my pain better, or maybe my medications will work better in the future, or I’ll get some relief in the future. Those are thoughts that can still co-exist with acceptance in the present, but the acceptance of the present is about literally what’s happening right now. 

When you’re in pain, your brain wants to protect you, right. So, your brain is like putting off a bunch of signals when you’re in pain, saying, “Oh, my gosh, do something about this. Fix this, fix this,” and with acute pain, there’s something that you do need to do usually. It’s like, oh, take your hand off the burning stove. Okay, you need to take an action.

Unfortunately, with chronic pain sometimes there isn’t anything more we can do to reduce the pain in the moment, so instead of struggling with that, we can say, “What’s still available in the present moment?” 

Acceptance and Commitment Therapy, the A-C-T, some people will break it down to say like ‘A’ is acceptance, ‘C’ is connecting to what’s possible in the present, and then ‘T’ is taking meaningful action. So, (instead of) saying, “Okay, I’m not just gonna sit here and accept this,” you’re saying, “Okay, what can I still do that’s valuable and meaningful in my life despite this pain?” and that has been what’s been really really empowering to me because it means that my happiness and the value of my life is not contingent on me controlling my pain in a perfect way, or finding the way to cure or heal my illness.

It means I can still discover ways to have a good life, even when pain is present. It’s more exciting and empowering than I imagined it would be, let’s put it that way.

Again, Dr. Tabares and Dr. Hopperstad — those are both my therapists, I want to give them credit here — they taught me, “What can I still do despite this pain? What can I still engage in that’s valuable to me?” So, basically, again, they helped me let go of this illusion that if I just did the right thing I could avoid pain, and that’s really what set me free.

There’s a balancing act between, again, I have a symptom and I have a toolkit and a toolbox — a metaphorical and physical one, for those who have seen my TikTok’s where I show all my life hack gadgets — you know, if I am having trouble with something, I have kind of a choice. Plan A is to like fix a problem, remediate it, and then Plan B is to work around it. In occupational therapy we call the workarounds like compensatory strategies. In a way, acceptance is a little bit like a compensatory strategy because it’s saying, “I can’t fix this at the moment. It is what it is. What can I still do that’s meaningful?” 

The thing that’s also good about this approach, and again, using it in your toolbox, is that there’s a lot of time and energy that people put into running away from their pain, or running away from their disease in terms of rheumatoid arthritis, and trying to go down these rabbit holes of fixing it, and curing it, and doing the perfect diet or the perfect X-Y-Z that’s going to make your disease go away, when that time could be spent running towards things that are still available to you.

Unless you’re in a coma, you still have choices. You have things that you can do that are valuable in this world. Your life has value. And so, you know, I think some of the conflicts I have around this idea of, “I have to make my rheumatoid arthritis go away before I can have you know a quote-unquote ‘normal life’,” it kind of feels like it prioritizes able-bodied lives as more valuable or more normal.

Yes, most people would choose to not have a health condition if they could choose. I would not choose to have this. If I had a choice between having rheumatoid arthritis and not, I would choose not to have it. That doesn’t mean that I still can’t find meaning in my life though and still can’t have a good life despite it, but of course I would choose to not have it because it’s introduced a lot of burdens and challenges. At the same time, yes, I have learned a lot from those challenges. 

I’m not going to say I would prefer to have it than not have it, but also, I just think that, again, because suffering is an inevitable part of the human condition and because there is no such thing as like — who’s the normal person? Like, are we going to choose one person? Is it like Sarah, who lives in North Dakota, is she the person? Are we all gonna — we have to like choose one person that represents normal?

I don’t know, it’s a little bit problematic to me to say that a normal kind of able-bodied life is the one that everyone should, you know, always aspire to.

So, again, kind of as I was sort of alluding to earlier, accepting the inevitability of pain was definitely challenging for me at first, but once I did I really do think I have a different kind of optimism, you know. Initially I thought I had this optimism of like, if I just find the right solution I’m going to make my pain go away all the time, or my rheumatoid arthritis is going to have no effect on my life. But once I accepted that it is going to have an effect on my life, you know, I had an optimism, a new kind of optimism, that basically says me and other people with rheumatoid arthritis and similar rheumatic diseases, we can still live a rich and full, meaningful life despite what’s going on. 

I actually was looking back on an old blog post I wrote when Charlie was a year old, a guest blog post about kind of my postpartum journey and challenges. I said there that, “I accept that even if I were in perfect health, there would still be limits to what I could achieve in life but I also accept my health is an additional limiting factor beyond my baseline mortality, that given the choice, I would choose to live without. But after mourning everything I’ve lost, I have felt more fully present and grateful for what I still have.” 

One of my favorite quotes comes from Victor Frankl’s ‘Man’s Search for Meaning’, “Everything can be taken from a man but one thing: the last of human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way,” you know, and in the first 15 months of Charlie’s life I kept waiting till I could figure things out, when I could get back to 100% with my health. And at that point I meant back to 100% as in back to my pre-pregnancy state where I still had rheumatoid arthritis, but it was under better control. 

Through therapy I realized the more important question to ponder is, “What if this is my only chance to be Charlie’s mom?” It’s not how I imagined or hoped it would be but it’s the chance I get. What can I gain from accepting my world as it is rather than anxiously attempting to control it or tweak it so I can achieve this elusive concept of feeling better in the future. If I fixate on the future, what have I lost in the present?

I’m hoping that that will help people who are kind of — who are just struggling. And I get it. Like, it is —I wish I, again, I wish I could just sit here and be like, “Listen to this blog post, I’m going to tell you all the ways in which your life is totally gonna be exactly what you always hoped and dreamed it would be before your diagnosis,” and unfortunately I can’t say that again. But I can say that you can still lead a good and meaningful life.

I do know that in my heart and so, my whole mission right now in life is to help people with these kind of diseases learn how to thrive despite them, because I think there’s so many voices out there that are offering programs and offering strategies to make the disease go away. 

Again, I take my medicine every day. Like, I take my medicine to help slow down my disease progression and that’s extremely important to have tools in your toolbox to minimize the symptoms, to manage the symptoms, to make the disease not wreck havoc on your body.

But at a certain point, again, there has to be a voice in the space — the chronic illness space — to say, “What can we still do despite our condition? How can we maximize our quality of life, maximize our fulfillment and our happiness, despite it?“ and that’s what I’m feeling particularly passionate about right now. T

hat’s why I developed Rheum to THRIVE, which is my new membership community. The mission of the group is to really offer educational content and support to people who have these diseases, to help them, again, learn how to thrive despite them.

And THRIVE is an acronym that I created. The ‘T’ stands for tools for pain and fatigue. The ‘H’ is our healthy habits. The ‘R’ is relationship; so, like how our conditions affect our social life. The ‘I’ is our inner world; like how it affects, you know, our mental health. The ‘V’ is valued activities; so, what can we still do despite, and ‘E’ is executive functions; so, figuring out how to be executive CEO of your illness care team, and track your symptoms, and stay organized.

So, my philosophy that I’m sharing with you here about like, “Can you live a normal life with rheumatoid arthritis?” is embodied in the mission of the group. It’s saying that yeah, we can thrive. We are going to do our best to thrive, and we are going to use tools to minimize our symptoms, and we’re also going to use tools to maximize our quality life despite our symptoms.

To reiterate a little bit, I think a lot of people get stuck in this mentality that they have to wait until the symptoms are fully controlled. You know, I’ll wait and put my life on hold until I can sort out my rheumatoid arthritis. And I really want to encourage you to kind of see what is still possible.

What is still possible in your life, what good things can you still do, and enjoy, and accomplish despite it? That’s really been a wonderful thing for me to see people kind of confronting in the chronic illness community lately, and it’s what I’ve tried to do in my Rheumatoid Arthritis Roadmap program and now with Rheum to THRIVE. So, I am so, so excited to get started with that community.

And I think in conclusion, normal. What is normal, you know? Can you live a normal life with rheumatoid arthritis? I really do think it comes down to what is your definition of normal, and how severe is your illness, and I don’t even know if someone will characterize my life as normal or not. I really don’t know. I think it’s a really hard question to answer.

I think the question I kind of focus my life more on is, “Can I live a good life? Can I be of service to other people? Can I leave the world better when I leave it then then I found it?” And that is a question is easier for me to answer. I can do those things with rheumatoid arthritis, you know?

Despite rheumatoid arthritis. I can have a good life, I can have a meaningful life, fulfilling relationships. Is it harder than it would be if I didn’t have rheumatoid arthritis? Sometimes yes, other times no. It’s made me a more empathetic person. I think that’s what the question is that I find more interesting. But I know that 50 million people have been curious about the answer to this question, “Can I live a normal life with rheumatoid arthritis?” so I think it’s worth exploring, which is why I made it today’s topic.

I would love to hear from you. We recently reached 10,000 downloads of the Arthritis Life podcast, which is so exciting. And if you don’t mind taking a second to review it on your favorite podcast player, that would be great because it helps us get more visibility, and I can’t wait to talk with you more. If you want to send me a response to this, send me an email at info@myarthritislife.net.

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Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. 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.