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its not just joint pain and th
General Education, Podcast

It’s not Just Joint Pain and 8 things Everyone who Loves Someone with Arthritis Should Know (Re-Release)

3 months ago
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Summary

If you love someone with rheumatoid arthritis, psoriatic arthritis or any other form of autoimmune arthritis, this episode is for you!

Back in January 2021, I shared the eight most important things that loved ones should know, so they can best support people with autoimmune arthritis. This episode includes messages and insights from twenty-eight other patients!

Today, I’m re-releasing this episode with some additional insights I’ve gained after leading patient support and self-management groups over the last 4 years.  Did I miss anything? Let me know in the comments! 

Episode at a glance:

  • One –  We want you to learn what the disease is and isn’t.
  • Two – The fatigue can be just as bad as the pain.
  • Three – It doesn’t just affect the body – it also affects the mind and emotions.
  • Four – It affects EACH person differently.
  • Five – Daily symptoms are often unpredictable.
  • Six – We want credit for how hard we’re fighting, even when we seem “normal.”
  • Seven – Sometimes we need problem solving, other times we need empathy.
  • Eight – Managing the disease itself is a job that takes time and energy.
  • Bonus point: Take care of YOUR needs as the caregiver/friend
  • Concluding thoughts

Video

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bio:

Cheryl Crow

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

Thank you so much to episode contributors from Instagram:

@Sophialwebb_  , @mhaggerty_ , @mariavgi , @warriorsmovemountains , @worldofOT , @shelly_steele , _brittanbee_ , @theinvisiblemewarriorspbc , @znev.alia , @aimeefb, @mrs_Alix_Naber, @Lailaschneider, @kat.panning, @Annafitandbeautiful, @danicreegs, @floopilicious, @wsmommie, @house_of_spoons, @Bto22, @diana_rosas023,  @chaichat023, @kheartsphotos, @pdxfashionista, @stephanielabonte, @shelly_steele + numerous anonymous contributors! 

Full Episode Transcript:

I am so excited to delve into today’s episode. It’s Not Just Joint Pain, Eight things, Everyone who Loves Someone with Arthritis Should Know. So my inspiration for this solo episode is that in my 18 years of living with rheumatoid arthritis and many, many, you know, volunteer experiences and social media interactions, I have noticed a trend where people who live with inflammatory forms of arthritis in particular like rheumatoid and psoriatic and you know, lupus, ankylosing spondylitis. There is a lot of misunderstandings about these conditions, especially because the word arthritis often makes it sound less serious than it really is. 

So when people think of the word arthritis, the word arthritis technically means joint inflammation and joint pain, but these inflammatory or autoinflammatory, or autoimmune forms of rheumatic diseases that cause arthritis have many, many more symptoms as those of us who live with them know.

So there are, there also just are a lot of other things that we kind of, those of us who live with these conditions wish that our loved ones knew. And sometimes it’s hard to have those hard conversations. It’s hard to have hard conversations with, with our loved ones because you don’t want to seem like you’re patronizing them, but there’s, there could just be awkward dynamics. So sometimes it’s just easier to hear a message from a neutral third party. 

So that’s what I’m hoping to deliver some messages to these loved ones, whether it’s friends, family members, spouses, girlfriends, boyfriends, coworkers sometimes it just helps to hear from someone else. 

So I want to help clarify a lot of the misunderstandings of these invisible conditions to make people who have them feel more understood and embraced and supported. So here we go. 

Number one:

Number one is we want you to learn what the disease is and what it isn’t.

So it’s understandable how many misunderstandings there are or misconceptions that are about autoimmune and autoinflammatory forms of rheumatic diseases because they are very complicated. And so here are just a few things that I want to let you know. So first is, is that inflammatory forms of arthritis affect the whole body, not just the joints. For example, the autoimmune response can cause your immune system to attack not only your synovial lining of your joints, in the example of rheumatoid arthritis, it can also cause inflammation of your heart, your lungs, and other previously healthy tissues, including those of your eyes. And they also cause these diseases often cause fatigue, widespread fatigue. And so for this episode, I got some quotes from other patients living with similar conditions, and I wanted to share a few of those as well. So, you know, it’s not just me, it’s other others have these same wishes for you to understand things better.

So Stephanie Labonte at Instagram, Stephanie Levante says, “I want you to know this, that this has good and bad days, but I am not going to heal or get better soon. I can only manage my health.” So this sounds straightforward, but it actually, it actually illustrates a really important difference, which is that when people get sick with like an acute illness, something like the flu or a really bad cold or sinus infection, there’s a natural progression, right? That it starts off, you feel hurt or sick and then you slowly heal and get better. And in our culture, we’re so used to saying things like get better soon or get well soon that when you have a autoimmune disease or an autoinflammatory form of a rheumatic disease that people often put under the umbrella of arthritis it is a lifelong chronic condition. You might go into remission at some point, but you will always be considered to have it.

You have this illness, the rest of your life at this point until there’s a cure. So understanding that you can manage your symptoms, you can manage your quality of life, but it’s not going to go away is a really important thing to understand. Another thing is like I started mentioning earlier that it affects the whole body, not just your joints. So Shaiachichat 23 says, “I wish they would just research the basics of my illness. I don’t have energy to educate everyone.” So it really does go a long way. If you can show that you proactively have researched someone else’s condition, the person that you love, whether it’s again, a spouse, coworker, family member. And I want to encourage you to find valid sources of information in general, the rule of thumb is to look at foundations, or nonprofits, or .edu organizations like, you know, stanford.edu or harvard.edu.

Those are ones that tend to have a good amount of curation of their content or quality control. You also want to just look at who authored the article. So for example, you know, I have a master’s in occupational therapy, which is a health field, and so I’m a licensed health professional. And so when I write an article or a blog post, there’s a level of, you know, quality associated with that, obviously the same would be, you know, if it was a doctor or a PhD person versus somebody who doesn’t have any training, I don’t, I’m not saying this to be a snob because there’s a time and place for patients to share their own expertise that they gain over time. But there’s a difference if you’re trying to give like medical kind of related information and education if you don’t have any medical training, it’s hard to, you don’t know what you don’t know.

So it’s not like anyone who didn’t have a health degree. Isn’t smart. No, a lot of patients become experts in their own care. And that’s really, really great. But broadly speaking, you want to, when you’re first learning about the disease, I really encourage you to look at valid sources of information that have been, you know passed through some sort of review process. Again, like happens with nonprofits like the Arthritis Foundation or Society for Arthritis or European League against Rheumatism. And so, yeah, just look at who authored the article, look, if they have a conflict of interest, obviously if it’s somebody who writes an article about, you know, diet and nutrition and rheumatoid arthritis, and they’re also selling their own, you know special dietary supplement, they might have a conflict of interest to maybe make you want their supplement more. Right? Than somebody else who is more of a unbiased opinion.

So it’s really complicated, but just, I think a good starting point is to look at those valid sources of information. I do have a free training on this called how to use social media without wanting to tear your hair out because it is How to Use Social Media for Health Information Without Wanting to Tear Your Hair Out. Because it’s really hard. Like I think we’ve, again, all information has some validity to it, but you have to just kind of know how to like put your detective lens on and take things with a grain of salt. There’s another, another quick misconception again that we, that I mentioned earlier is that, oh, it’s just arthritis. It’s just joint pain here or there, or that you just have it in one finger. If it’s osteoarthritis, which is wear and tear arthritis that is typically in just one or two joints it is not a systemic disease.

It is a, just a phenomenon in a joint. But these autoimmune and autoinflammatory forms of arthritis, they are not just in your joints. So Meg’s Twisted Tree says, “It’s not just stiff joints that everyone has and a little ibuprofen will take care of it.” She’s saying it’s not the case that you can just take ibuprofen and it’s better. So those are a couple of things to just start off with. Again, if you love someone with inflammatory arthritis and you take the time to get to know their disease and understand it, believe me, it’s going to go a long way. And you know, Britton B. Says on from Instagram, “It’s okay to ask questions and do your own research. We don’t have to pretend it’s not a thing.” So although it’s a good one. Another person, Alia says, “My parents didn’t give me our AvIA genes.

We just happened to share genetic material, but it’s not their fault.” So there can be lots of different misconceptions, lots of guilt people might feel cause it can run in families, but you know, we don’t want to play the blame game. So that’s point one, again is we want you to learn what the disease is and what it isn’t. So it’s a lot more complicated than just joint pain. 

Number two

Number two is that the fatigue can be just as bad as the pain for things like rheumatoid arthritis. So the best analogy I like to use is it’s like when you have a really bad flu where you’re so exhausted, you can’t even practically get a bed to walk to the bathroom and you just have no energy left. That is what a flare up of fatigue feels like. To make things even more complicated, as I said earlier, these diseases are complicated, that the fatigue and the pain don’t necessarily flare up or occur at the same time. You can be feeling really good in terms of joint pain, but then have a really horrible flare of fatigue or vice versa.

They used to think researchers used to think that they always went in tandem, but that’s the latest research is showing that it’s not the case, necessarily. So know, that again it’s, if the person is not having horrible joint pain, they might still have a severe negative effect on their quality of life, just due to the fatigue because fatigue is required for every single daily activity. And it’s much harder to find work arounds for fatigue than pain in my experience. Like if my hand hurts, I can use a different strategy. I can use a life hack to perform the same action, I need to perform. Like opening a jar. I can use a jar opener. I can ask a friend to open it for me. But if, but if you have so much fatigue that you can barely get out of bed, it’s hard to work around that, right?

There are definitely strategies which I do teach in my online course, the Rheumatoid Arthritis Roadmap, but at the end of the day, it’s, it’s just really, really hard a lot of the time. So a few kind of tips you can do as a loved one of someone with arthritis or inflammatory arthritis is warn the person with arthritis in advance about plans so that they can conserve their energy and then also be flexible and allow the person to reschedule at the last minute if needed. 

So what’s really, really important about that is that we don’t always know. Us patients don’t always know when our fatigue is going to flare up. I personally, after 18 years have started noticing some trends, for example I have some triggers for fatigue such as really, really hot environments or really, really cold or overdoing it in terms of exercise or exertion on a particular day.

And I have like a body rhythm. My circadian rhythm is pretty predictable that I’m a morning person and I, I have a really big dip in energy in the mid-afternoon. And then I get I, if I take a rest, I can kind of replenish my energy. So you, you can learn how to schedule things in your life so that you can you know, go out and be with friends. But if you’re, if you have one of these diseases, you can end up feeling really guilty if you have to cancel plans last minute. Because even if I know 9 times out of 10, I’m going to feel good after a nap, there could be, you know, a really important like meet up with a friend and I take a nap and I’m like, okay, I’m going to conserve my energy. And then I wake up and I’m like, I still feel bad.

I don’t have any energy to go. So no, the friend being flexible and understanding can go a really, really long way. So we don’t feel guilty having to change plans at the last minute. I also wanted to share a quote from the Invisible Me Warriors PBC on Instagram. She said, “The exhaustion is awful and we don’t want to be told, I feel tired to just drink coffee.” So sometimes friends and family, they might be well-meaning, but they might kind of end up minimizing the suffering of the person with inflammatory arthritis. So just be cautious about the assumptions you make, Anna Fit and Beautiful says “The fatigue is real. We require more rest and sleep, period.” Yes. So one of the causes of fatigue is that when you have an autoimmune or auto inflammatory response, your body is using up a lot of energy, trying to attack your own previously healthy joints.

So you don’t have as much energy to do other things in the same way that, you know, again, when you, when you’re sick with like a virus, your immune system is really busy trying to attack and eradicate that virus. And that’s why you don’t have as much energy either to simplify things overly, but so know that we do often need more rest and sleep. Also know though that fatigue is different than tiredness. So tiredness resolves with sleep and fatigue does not resolve with sleep necessarily. So that’s one of the ways you can differentiate between the two of them. But that said it’s is a little complicated because getting adequate sleep can help prevent fatigue or make the fatigue feel less intense. So it’s not that they’re completely unrelated, but just know that it’s not the same as just a normal person’s sleep like sleepiness or tiredness.

Layla Schneider says “Your support means the world to me, when I say it doesn’t hurt. What I mean is that the pain is bearable right now. I wish I could be more useful in home chores. And I hate the thought of being a burden to everyone. I can feel guilty when I can’t spend time with them. And when I’m not nice to you, please remember I feel pain, nausea and stomach ache. Every day.” I thought that was really powerful because it shows it’s not just that we have to deal as the patients with this fatigue and the way it feels it’s that we know that it affects our social life and our environment, our ability to do things like simple household chores, it can make us have a lot of big emotions about what, what our bodies can do. So I thought that that was a really good point.

And another person who wants to be anonymous says, “I want you to know it is chronic. I can’t just take a pill that cures it and I still have bad days.” So that kind of goes a little bit with what I was saying earlier about just understanding what the disease is and isn’t, and understanding the difference between, you know, a disease that you can manage through medications and lifestyle factors. And it is, is that you can actually cure or make it go away. 

Number three

So that idea of guilt and being a burden really leads to my third point or my third message, which is that these conditions don’t just affect the body. They also affect your mind and your emotions. So in general, there’s lots and lots of data showing people who have arthritis or chronic pain are at much greater risk of depression and or anxiety disorders than the general public, which I think, you know, makes a lot of sense.

If you’re living in pain and fatigue, it’s going to affect your mood. To some degree, you’re going to have feelings about that. It’s only human right to have feelings. And we all, I think universally prefer to feel healthy and energetic than we do to feel pain and lack of energy. So just know that again it’s not our, whether I’m having a good day or a bad day is not just dictated by my pain levels or my fatigue. It’s also about my emotional relationship to my condition. And the thing that’s been the biggest trigger for me personally, has been uncertainty. This is something I’ve worked a lot on in therapy. So I used to think uncertainty was a problem and I needed to just solve it by figuring out what was certain. So for example, there’s an uncertainty when you first get diagnosed, no doctor can tell you with certainty, which medication is going to be quote unquote, the best for you, which medication are you going to definitely do well on.

They can take the available research and data and definitely say, look, you know, given all this research we have, this is what it, with your particular circumstance, with your physical presentation, family history, blood work and physical exam this is what we recommend because in general, the data shows that this is the best course of action and still doesn’t mean that they can say for sure, what’s going to happen to you. And so I used to think, oh my gosh, these doctors are so mean sometimes not telling me, like, they’re not able to tell me what’s going to happen. Like I’m so frustrated about this, but then I just realized that it’s just actually just a reality of life that nobody knows for certain. And I know I’ve talked about this in multiple episodes, right? And the global pandemic that started in 2020 is a really perfect example of this, right?

You might’ve had your 2020 completely planned out. You knew what you were going to do. You had your goals, you had your strategies, but then life happens, right? Like things can come out of nowhere and suddenly change all of your plans. So that is true. Whether or not you have a health condition. So for me, the journey towards acceptance of uncertainty has been really long and really hard that once I was able to embrace, like not embrace it, but tolerate it and acknowledge that it is the reality of life, then it has become less of a struggle for me. So so another thing that some people said is “Someone handling it well-“, this is anonymous, “Just because someone’s handling it well, doesn’t mean that they’re better.” And I really like that point. I’ve had people on social media say to me like, oh, how long have you been in remission?

And I said, well, I’m not in remission. Like, oh, did I, did I appear to be in remission? And I know I have pain almost every day. It’s pretty mild to moderate most days, but I’m still, you know, I’m still affected by this disease. It doesn’t mean that it, that my physical symptoms are gone and my fatigue is gone. It just means I’ve learned how to work around it and live a full life despite it, but it does not mean that it’s gone or that I don’t have to struggle. Another anonymous person said, “Please figure out how to support us on our bad days.” So, you know, that obviously should involve some communication between the person who has the condition and the loved one, you know, figure out what does the person need. And we’re going to go a little bit more into that a little bit later.

And Mari or Maria BGI says “It’s, excrutiatingly, excrutiatingly painful and scary 24/7, and it’s never going to go away. It’s a part of me.” Again, so understanding that, you know, think about how scary it is to live in pain all the time and know that it’s not going to go away. It’s a profoundly difficult, psychological experience. It doesn’t mean that we can’t learn coping skills. I mean, that’s like one of my passions is sharing all the coping skills I’ve learned. But but I think it’s important for the, for people who love someone with arthritis to acknowledge how, how difficult and how serious it can be. 

Number Four:

So number four is that it affects these diseases and conditions affect each person differently. So just know that if you know someone else who’s had rheumatoid arthritis, for example, you know, it doesn’t make perfect sense to compare your friend’s, you know, condition to the other person’s condition.

For example, I was a captain of my college soccer team. I was very, very successful as an athlete in college. And I got, I started feeling really, really bad my junior year or kind of between my sophomore and junior year. And then, I got diagnosed the summer before my senior year. And I quit the soccer team because I wasn’t feeling well enough to, and I wanted to focus on my health. 

And I remember the coach at the time said, well, you know, I had a friend in college, she had RA and she played when she was trying to like, I don’t know, I can’t get into her mind, but I think she was potentially trying to encourage me by saying, Hey, like, just because you have RA doesn’t mean you can’t play college soccer, which is true, but that doesn’t because one person who’s had RA and who’s already gone through the process of like finding the right medication for them and finding the right way to manage it is different than somebody who got diagnosed like two weeks before the soccer season’s supposed to start.

That’s a totally different scenario. It’s a much more difficult, uncertain time in someone’s life. And so, you know, I, I know that that was her job is like right as a soccer coach, her job is to make the best team. And, you know, I was a successful player, so she was trying to get me to play, but I didn’t appreciate that because it made me feel like you’re just trying to make me feel more guilty for not feeling capable of playing or that it was the right choice for my health. Like, so, you know, it’s complicated. So just so yeah, just because you might’ve found someone on Instagram who is able to, you know, do a certain workout program or do a certain supplement and feels really good. That doesn’t mean that someone else who tries that same thing is going to have that same degree of success.

Our conditions are all really complicated and really different. Katrina had a really good point, which is, “This disease is not a one size fits all and medications don’t equal cured. I’m I want you to know, I’m proud of never giving up on myself. I awake each day hoping for a good day. Sometimes I wish I didn’t have it as I get tired of dealing with it. I feel like a burden at times that I am not my disease. My energy changes on a whim.” So you know that again, she said, you know, it’s not one size fit all. It’s not that everyone has severe progressive RA. It’s not that everyone has mild RA and can go running through fields of flowers. It’s just different. So that’s number four. 

Number Five: Unpredictability

Number five is that daily symptoms can be really unpredictable. So Shelly Steel on Instagram says “Every day is different and challenging.”

Anonymous says “Just because I feel okay now doesn’t mean I’m going to be feeling okay tomorrow.” So really know that our symptoms fluctuate daily and hourly. We, and this is me talking now. We can’t always predict when we’re going to feel good. And so, and again, that’s the hardest part for me. Like, you know, it affects everything right? Planning your job. Should I go to grad school? And especially when you get diagnosed young, you know, should I, when should I have my wedding? Like, what if I wake up on my wedding day, feeling a massive flare up, it’s just, it can be really challenging.

 So you know, the symptoms day to day can also can fluctuate, but also the yearly disease progress can fluctuate between people. So one person might have a progressive pattern where they get progressively worse over time. And that is the typical pattern is it is considered a progressive disease, but some people have more like relapses and remissions where they go into remission for a long, long time.

So it’s hard to know at the beginning, which one you’re going to be. So M Haggerty says, “I asked that people, warn me about plans as far ahead as possible, and it makes it easier to rest accordingly. This has really helped me, especially with young people. You can’t ask me at nine o’clock at night to go out at nine or seven o’clock at night to go out at 9:00 PM. But if I can plan ahead, it’s more likely that I can make it.” I liked that.

 Also anonymous says, “I want you to know I’m not suddenly better when I’m having a good day or a week.” someone else anonymous says “We can’t be treated as porcelain dolls, let us dance knowing we will pay for it later.” And then Sophia Web says, “I will always have this. It is a day by day basis.A good day can still have some pain.” So I think one of the most painful things, emotionally that can happen to somebody with this disease is for someone to start judging them about like, oh, well, I saw you come out last week. Why are you saying you can’t come out this week? You know, come out mean like, go hang out back in the old days when we could actually hang out depending on where you are in the world right now, you might still be able to hang out in person.

 But the point is, you know, yeah, some days I have to wear a splint. Some days, I have to take a three-hour nap in the afternoon. Some days, I can’t open a peanut butter jar, you know, some days, but some days I feel great and I’m dancing and I’m running around and happy. So, but you know, if I say, oh, I can’t, I’m sorry, you know, I’m not feeling good today. I’m not feeling well today. And I can’t come, let’s say, go to your baby shower or something. You know, we don’t want the person to say, well, wait a minute, you were out dancing last week. Like, are you just using this as an excuse? 

You know, please like presume competence. This is a great just overall life advice, presume that the person is doing their best because we really are. 

Number Six: We want credit for how hard we’re fighting

And actually this brings us to point number six, which is we want credit for how hard we’re fighting. Even when we seem normal, our symptoms are often invisible and we don’t feel we get credit for how hard we fight. So anonymous says, “I want them to not discount the fight. I manage so much, so well for how tired I am. I’m pretty sure I speak for a lot of people to agree with anonymous and that, you know, if I’m having a great day again, it’s because I’ve worked really hard to have a good day.

It’s not like I’m all better now.” PDX fashionista from Portland says “I mask a lot. So while I don’t look like I’m in pain, in reality, I hover around a 7 to 10 most days.” So really please remember that. You cannot tell how much pain someone’s in just by looking at them. 

Diana Rose says 23 says, “I’m trying, I’m trying to get better, trying to have energy and need less sleep. I’m trying to show up. I rarely know what any day in the future will look like I can only do today.” So I really love that. 

And of course I have to put in a Taylor Swift reference because I am a huge Taylor Swift fan. Those of you who know me know this, and she has a great song from her. Second to latest album called Folklore. And the song is called, “this is me trying.

And it’s, it’s a really kind of subtle song, but it just says, you know, I- I want you to know that this is, this is me trying, like, if I’m always trying kind of thing, like I’m not, not trying. So please presume that I’m trying my best. Mari says, “When I have a flare, I can still function. My spoons are a tad low, but I can still do things.” So that’s a good illustration. 

That again, it can be different for each, for each person. Some people can still function during a flare. Some have to be in bed 24/7 , and WS Mommy says, “See the tasks I do and reinforce that, you know, that I am not being lazy.” Yeah. It’s a terrible feeling to be trying really, really hard and then be accused of being lazy or using excuses. That is not the recommended way,According to me. 

Number Seven: sometimes we need problem solving and sometimes we need empathy.

The next point is sometimes we need problem solving and sometimes we need empathy and acceptance. So this is one of the best pieces of marriage advice I’ve ever gotten, actually, which is I got it from somebody at a wedding once that, that my husband, I were sitting next to, and we asked them, because we were engaged. We said, what is your best marriage advice? 

And they said, “when one person starts venting about an issue or a problem, the other person asks at the very beginning, is this a listening problem? Or is this a solving problem?” Which means, is this a problem that you want to talk about and have me just listen and empathize with you about, or is this a problem that you want me to think as I’m listening to about solving it or finding solutions? 

Because when it comes to living with a chronic illness, a chronic condition like rheumatoid arthritis or similar rheumatic diseases a lot of times there, isn’t a way to solve the problem.A lot of times we do just need empathy and acceptance. And, and I think that that can be threatening to people sometimes who are problem solvers. 

Like, you know, for example, my husband’s an engineer and that’s one of the things I love the most about him is that he’s a great problem solver, but the the difficulty about that is that I’ve learned that I need to – communicate when I just need him to listen or empathize as opposed to solving, because there aren’t, again, there aren’t always solutions to the problems that we have.

 So, you know, there’s another great resource I’d recommend for, for marriages in particular. But honestly, I use these principles for you know, parenting and for other relationships too, which is it’s John Gottman, Dr. John Gottman, a world renowned marriage researcher wrote a book called The Seven Principles To Make Marriage Work.

It has a lot of great tips for again, communication and differentiating. He, he calls it solvable problems versus perpetual problems. So in a marriage, for example, it might maybe a solvable problem is something like, you know your spouse’s alarm is waking you up, or they’re like hitting snooze five times where they can solve that versus maybe a perpetual problem might be that let’s say someone tends to run late. You could solve that. But for some people that’s just going to be a perpetual problem and it’s better to just work on like accepting it and working around it.

 So I really love this quote from Warrior’s Move Mountains. She said, “I want you to know that having friends who just listen and show interest is everything. You don’t need to make it better.” So, you know, there are so many things that you can say when someone’s in a lot of pain that don’t have to involve problem solving, problem solving might be something like, have you tried this?

Have you tried that? Have you tried a heat pack? Have you tried a cold pack? Have you tried yoga? Again, sometimes people want problem solving. Sometimes they want tools and tips, and I’m a huge proponent of having a toolbox and having people in your life who can help remind you of what’s in your toolbox. But other times we just need the person to say, yeah, that sounds really hard. 

Another great book I recommended is How to Talk so Kids Will Listen and How to Listen so Kids Will Talk. Again, both of these books apply to all relationships, not just children, parent, or marriage. And it really teaches them how to talk so kids will listen, really teaches, reflective listening, where you just simply summarize what you’ve heard about what the person just said and reflect it back to them. Like, wow, it sounds like you’re really overwhelmed.

It sounds like there’s just a lot of uncertainty around what you should do with medications and this really, really difficult. Or it sounds like you’ve tried so many things and it’s not clear if they’re really working or not. So that ability to empathize and differentiate between conversations that need to be an empathetic conversation and listening conversation versus a problem solving conversation can go really, really far. The Schmitz from World of OT says ask, instead of assuming, so simply ask, ask if someone wants help, ask if they want advice. Oh, you know, I have a friend of mine has the condition too. Do you want any tips from her or do you want me to share what worked for her? Ask, instead of assuming the person knows. Katrina said, “Whenever you do random things for me, it’s like liquid sunshine. I am grateful. I still want and expect to live a full life,

Despite my illness. Some days I feel good, but most days are fairly tough as I have multiple conditions.” So that kind of touches upon this acceptance piece, which I know I’ve talked about many times, but it really is a delicate balance in the long-term between an improvement mindset and an acceptance mindset. You can kind- you can have both, but you know, in general an improvement mindset is this mindset, I have to just figure out the best way to always make my pain better and always figure out how to maximize my physical health and my physical, you know, state versus an acceptance mindset of like, this is what it is right now. Like I might, you know, there might be something more I could be doing there might not, but what else could I be doing with my time and energy?

 You know, what would be available to me as we saw Dr. Bronwyn Thompson say, “You know, what if pain wasn’t a problem for me? What would I, what would that open up for my life?” So that’s just a really, really interesting question that we can ask ourselves. And, you know, I think that for me, it’s, I noticed in my own life and looking at other people’s lives, that there’s definitely an ebb and flow. And the majority of people in the very beginning tend to take an improvement mindset. 

But as the years go on that they learn how to accept, because at first you can feel good in it and it can feel really a reassuring to think I’m going to be optimistic. I’m going to be positive. I’m going to try everything. And then we’re going to, we’re going to conquer this. I conquered my rheumatoid arthritis and that’s one of them, if that’s happened in your life and that’s been helpful for you, that’s great.

But that doesn’t necessarily happen for everyone. Not everyone finds a way to conquer it or heal it or improve it. And so what can we do then we have to learn how to accept it and have a good life despite pain, despite fatigue, what can we still do? Because no matter how much this disease has taken from you, you still have some abilities. You still have some gifts that other people don’t have. 

So, you know, it’s an interesting push and pull in my experience between like gratitude for what I still have and acceptance and of what I don’t have anymore. How’s the Spoons put it really nicely, “I want you to know I’m okay with my illness. I’ve moved on from trying to be cured to embracing the ups and downs. It’s a better mindset for me to have.” I thought that was just a great way to summarize it.

Number Eight

The last thing number eight is simply that managing the disease itself is a job that takes a lot of cognitive, time, energy, and emotional labor. So know that, even if, let’s say you’re in Medicaid remission, like I was for the first five years, I still spent hours on the phone with insurance companies trying to make sure my medicine was covered. And, you know, making sure that because it’s a specialty medication, so they have to be temperature controlled. And you can’t just pick them up at the local Walgreens or Bartell’s, you have to have special deliveries for them. And so there’s just a lot of management. There’s also symptom management, there’s advocacy with your doctor, there’s tracking your symptoms, there’s managing your medication refills. And so, you know, know that the person has to do a lot of work to just be a patient. And that’s why I have a whole section of my Rheumatoid Arthritis Roadmap online course, all about, you know, the logistical side of being a patient, how to do that job of being a patient, managing it, all those little tasks that take up time and energy.

So, and that could be a big learning curve for somebody who was previously healthy and fully able-bodied. And didn’t really have to deal with the medical system depending on where you live in the world. That can be very, very challenging. 

Bonus Point: Take Care of *your* needs as the caregiver / friend

That’s a, that’s a pretty straightforward point for the last one, trying to wind it down here, but the bonus, I did want to give one more bonus because I can’t ever contain myself. So please make sure, you know, as the loved one of someone with inflammatory arthritis, make sure to take care of your own needs as a caregiver or friend or spouse. So we know it’s hard for you. Like we know it’s hard for you to see us in pain. We know it’s hard for you to see us, you know, waylaid by fatigue. We know it’s hard for you to live with the uncertainty that we have to live with as well.

So there is no shame in getting therapy for yourself, for coping, with how hard it is to be, you know, to love someone with this disease, to be a family member of somebody with this disease. It’s hard. So we want you to, you know, find an outlet for yourself to get the support that you might need. There are social workers out there, counselors, psychologists, psychiatrists, that they can help. You could also, you know, I’m a, I’m a fan of all kinds of therapies. 

So I really want you to know that, you know, we appreciate that people in our lives who take the time to get to know what we’re going through and ask us, you know, how to, how to best support us. And we want to be there for you as well. We want you to do your own self care and take care of yourself.

Summary

So to summarize this episode in case you’re kind of zoned out, because I do that sometimes when I’m listening to podcasts: number one, we want you to learn what the disease is and isn’t preferably from valid sources of information. Number two is that fatigue can be just as bad as pain. Number three, it doesn’t just affect the body. Also our mind and our emotions. Number four, it affects each person differently. Number five, the daily symptoms can be very unpredictable. Number six, we want credit for how hard we’re fighting, even when we seem normal. And just remember, our symptoms are often invisible. Number seven, sometimes we need problem solving, but sometimes we need empathy and acceptance. And number eight is that managing the disease is a job that takes a lot of time and energy. And then the bonus point is just make sure to take care of your needs as a friend, caregiver, or a loved one of a person with inflammatory arthritis.

So even though I’ve been talking for a long time, I know there’s must be things that I’ve missed when we had 29 different submissions from Instagram, which I’m so excited about being able to share your, all of your wisdom and and tips. But I would love to hear more if you want to comment wherever you first heard of this episode, or send me, send me an Instagram DM or Facebook message or email me at info. Info@Myarthritislife.Net. There’s numerous ways to get a hold of me or just go to myarthritislife.net. So I’m so appreciative of your time as always thank you so much for tuning in and thank you for your support. Bye bye.

TO EDIT OUT:

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis, to simple physical strategies you can use everyday to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.

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