EPISODE 17: Paradoxes - the Yin and Yang of Autoimmunity

STACY: Welcome back to Autoimmune Adventures. Today, we're going to have a little bit of fun with the paradoxes of autoimmunity. You know, those situations where your body's like, I'm here to protect you, but also I'm going to attack you. It's like having a friend who's always offering a hug, but then accidentally punching you in the face.

Before we delve into specifics, though, let's clarify a couple of terms. First of all, a paradox is a statement that seems contradictory or absurd, but it may be true. And an oxymoron is a two word paradox that combines two terms that don't make a lot of sense, like jumbo shrimp or pretty ugly, and in the realm of autoimmune diseases, you're going to discover that we have plenty of both. So, join us as we unravel these paradoxes and share insights into the world of autoimmunity, and remember, laughter is the best medicine, even if your autoimmune system disagrees. But first, let's have our Good Bit Minute.

Have you ever heard the saying, failure is the stepping stone to success? It might sound counterintuitive, but there's a paradoxical truth to it. Science has shown that the more often we fail, the more likely we are to succeed in the future. How can this be, you may ask? Well, think about it this way. Each failure is an opportunity to learn, grow, and adapt. It's like training for a marathon.

You don't expect to win the first time that you go out for a marathon, so that makes sense. And with each race that you progressively practice, you're going to learn from the mistakes you made in the past. You're going to improve your technique. You're going to get closer to your goal. So the next time you stumble, remember, it's not a setback. It's a set up for something even better. So, let's push forward and we'll be amazed at what we can achieve!

BECKY: So, we wanted to introduce you to the first time that we learned about what a paradox was when we were kids. Our family liked to go on adventures, and on one particular occasion, our parents drove us into the Rocky Mountains in Colorado to a little town called Paradox, Colorado.

And when we asked our dad what it was named for, he told us Dr. Albert Peale, who was a renowned geologist, had given Paradox its name in the 1800s because he had observed that the Dolores River had, as he said, quote, "a desire to perform strange and unexpected things." Basically that just meant that unlike most river valleys, the Dolores River didn't run parallel to the Paradox Valley. It ran through it at 90 degree angles through the cliff walls. And, um, this apparently can give the illusion of the water running up the hills instead of down. So that was how it got its name. And that was really fascinating for us as kids. I actually remember my dad explaining the word because I had no idea what it meant.

But, kind of, the thing that was fun is other than the, the river, Paradox itself had some other fun paradoxes that were part of it. It was a very small town. It was an old town. And when I say small, I mean like, I don't even know if they had more than a dozen families there. It was very small. And as we were driving through it, everybody was super friendly.

Everybody waved at us, even though they didn't know who we were. Um, it was beautiful, green, up in the mountains. It was so, uh, the time of year when there are a lot of cattails growing everywhere along the river. And it was just kind of this beautiful country scene out of, out of like a nice movie. And then it was like, suddenly it went from movie to, to horror film.

As we came to the edge of this little town that was so beautiful, and there was this old run-down sawmill. And my dad, who's a curious guy, wanted to go in and see it, because they, they didn't have anything blocking it off. It was open to whoever was going to come around and, and he was curious. We assumed that because it was an old sawmill, that there was going to really be nothing inside, and much to our surprise, there was a lot of stuff inside, including a lot of old rusty saw blades, which of course made my mother extremely paranoid because you have, uh, my dad who was thinking it's super cool, and then five little kids running around rusty saw blades, which about probably gave her a heart attack.

But the point being, this little town that had its name Paradox from the we found had other paradoxes. What looked like this little quiet sleepy town on the outside, had some really crazy stuff going on on the outskirts. And so that was how we learned what a paradox meant.

ALYSIA: So in the context of autoimmunity, a paradox is a seemingly contradictory or illogical situation that occurs when your body's immune system, which is designed to protect it, mistakenly attacks, attacks its own tissues. So this paradox is often seen in autoimmune diseases where the immune system is intended to, its intended function is to fight off foreign invaders, and it kind of becomes its own worst enemy, right?

So that brings us to Paradox #1, the body as both an attacker and a victim. It's like a friendly takeover gone wrong, if you will. In autoimmune diseases, the body's immune system is designed to be its own superhero, but it kind of turns into a super villain. It's like having a bodyguard that accidentally beats you up while trying to protect you from someone who's trying to hurt you.

So the immune system, it's obviously, it's supposed to protect us from outside threats like germs and disease and etc. but it kind of goes rogue and it starts attacking the body. It's like your body's friendly neighborhood watch turning into a vigilante squad that's kind of out of control.

BECKY: And examples of specific diseases, if you're familiar with lupus, it does attack like your whole body, the immune system attacks your whole body. If you have type 1 Diabetes, your immune system is attacking your pancreas. psoriasis, it's attacking your skin, Graves and Hashimoto's, it's attacking your thyroid, and of course there are a lot of other ones, but that's, that's essentially what the autoimmune disease is, it's attacking some part of your body.

The challenges of treating these kind of conditions are immense, and you have to find a way to calm down your immune system without leaving your body vulnerable to other threats, and that's a very delicate balance, and finding the right approach requires, usually requires working closely with your doctor.

You'll find that most medications that are prescribed for autoimmune diseases often do suppress your immune system, so your doctor needs to be there to help you find that balance.

ALYSIA: I just want to add here, this is making me think back to, um, our discussion on, on feeling like your body's betraying you, especially in the early days of autoimmune disease.

When you don't understand what's happening, it's really disorienting to be living in a body that is suddenly causing you all these issues. It's your actual body attacking itself. That is for me was a very emotional experience. I had a lot, I think I've mentioned some self hatred. I was very angry at my body. I felt like I was, it was betraying me.

And now I understand years later, I understand that all of those symptoms was my body's way of crying for help. Right? So if you are new to this and you are in this position where you're like, what the crap is happening with my body? Why is this happening? Just remember that the things that are happening are your body trying to alert you.

Hey, something is wrong. Something is wrong. Something is wrong. And there's a lot of those. Something is wrong. It's like a check engine light keeps coming on. So just remember that if you're kind of new to your diagnosis, or you're still trying to figure out what's going on, don't, don't hate yourself, just know that your body's doing its very, very best to get you through this.

STACY: And speaking of the whole, something's going on, something's going on. One of the paradoxes that we have is Paradox #2, which is pain caused by inflammation. And it's kind of a frenemy. Pain is a frenemy, guys. It's, it's someone that really is giving us important information, but they don't seem like they're very nice. They're like the friend that, you know, verbally smacks you upside the head when you're having a hard time. You're kind of grateful for it because you needed it, but it still stings. So, imagine that inflammation is a firefighter. They're supposed to go in and put out this fire. But instead what happens is when there's a threat, they rush in, and instead of putting out the flames, they get this whole cocky, full of themselves attitude and they decide, I know better than anyone what I should do. I'm going to inflame everything. And so then we have a flare, okay? It's like the house burns down. So the firefighter that's supposed to help us actually burns the house down.

And that's kind of what happens with chronic inflammation. So I want to talk about the positive side of inflammation, which I know sounds crazy to even say that, but there is a positive sign of inflammation, a positive part of inflammation, and that is that it's a signal of danger. It's our body's way of saying, "Hey, there's something wrong." When we get inflamed, when we get swollen ankles, when we feel really sore in our joints, all of these kinds of inflammation or a warning sign alerting us that our body is in trauma and it needs help.

And it also is a little way of saying, hey, you need to slow the flow. You need to just slow yourself down because it's crucial for repair and generation, inflammation is what helps us repair because it sends all of the good parts of like, it sends all the lymph and all the other things into that part of our body to help clear out the problem, but our bodies, because we have autoimmunity, have a hard time removing the inflammation once it's there. So obviously that's part of the dark side of this. Um, there's a lot of chronic pain which causes more inflammation and that can lead to things like arthritis and fibromyalgia and IBS and other things of that nature. And it can also cause tissue damage, if we have long term inflammation, it can mess with our tissues and organs.

Um, and so, what the goal here is, is to balance the need to reduce the inflammation while supporting our immune function. It's a delicate balancing act. And most of the meds that help us with suppressing our immune system, or getting rid of the inflammation, if you have too much of them, then you can get more sick. So, it really is a balancing act, kind of trying to balance a suppression with an ability to continue to stay healthy and at any amount.

ALYSIA: And I think that's like a mini paradox within that paradox, right? Because we know that, um, if, I mean, For pain, what's, what's the first thing I go to, I would go to ibuprofen or naproxen. They are anti inflammatory, and they are a pain reliever. So you think, Oh, this is great. Well, if you use them too much, it's really damaging. It's damaging to your gut health and your gut health is directly linked to autoimmunity. So there's a lot of little paradoxes within paradoxes. It's really, it's a little maddening. It's a little crazy making.

What's our next one?

BECKY: Our next one is Paradox #3, a simple workout. And I love this paradox because for anybody who has autoimmunity and they experience fatigue, a workout never feels simple, really. Imagine that you're so tired you could sleep for a week, but your doctor suggests that exercise is what's going to help you feel better.

It's like saying to go cure your exhaustion, I want you to go run a few miles. And it seems like it's a classic catch 22. You want to because it's supposed to help you, but you're too tired to. And then, you know, they tell you you're going to be less tired if you exercise, but you're too tired to exercise.

I think most of us have been there at some point or another if you have autoimmune disease. And the body's immune system, which is supposed to be a protector, kind of turns into a bully and attacks our healthy tissues, which, as Stacy was just talking about, causes inflammation, and that's really what is making us feel exhausted.

And here's the twist, though, guys. If you exercise, and it doesn't have to be, we've talked about this before, we actually did a whole episode on, um, diet and exercise. And if you are doing even low impact exercise, something that is not hard for you, exercise can actually help you reduce your inflammation.

It's like a secret weapon against fatigue. And by moving your body, you can boost your immune system, increase your energy levels and improve your mood. Um, so the next time that you're feeling drained and your doctor suggests exercise, remember it might seem impossible, but it could be the very thing that would help you break free from the fatigue that you're feeling.

Just start slow and listen to your body, and as always before you start any kind of exercise regime, always talk to your doctor because different people are in different places and they're going to help guide you on what's going to be safest and best for you. Um, but guys give it a try and I kind of laugh as I, as I'm doing this one because I think I've mentioned before I have a hard time getting motivated to exercise.

I am not always good at it. And so this is a good reminder for me that it actually, you can start slow and you listen to your body and you would actually be surprised at what you achieve and how it does give you back some of that energy that you feel like you lost.

ALYSIA: I think that's so true. Especially for me, especially if I'm outside performing that exercise. Um, which I think we'll get into another paradox about being outside in the sun here in a minute, but first our next Paradox, #4, we call "the living dead." And this, Oh, it's so accurate. Sometimes...this is the need for good sleep versus having insomnia. This is. That's a very regular dilemma for me in the realm of autoimmune diseases, I would say this is one of the most frustrating paradoxes because you really need that good sleep and there is often this just insidious presence of insomnia, it's like being trapped in a never ending cycle of exhaustion and you're just unable to catch that decent sleep that you need.

It totally reminds me of Alanis Morissette's song "Ironic." Like, you're just exhausted, but you can't sleep. So the root of the problem, autoimmune diseases, they wreak havoc on our sleep patterns in a lot of several, in, in lots of ways. And surprise, surprise, it's inflammation. That's the name of the name, name of the game guys. The chronic inflammation that often is associated with autoimmune conditions can disrupt sleep architecture.

The next thing would be pain, right? A lot of autoimmune diseases exhibit pain as a major symptom. Sometimes it's joint pain. Sometimes it is muscle aches. Sometimes it's abdominal discomfort. Whatever it is, it can make it difficult to fall asleep and it can make it difficult to stay asleep.

Another one would be medications. Oftentimes, um, with autoimmune disease, we are on medications, obviously. And some of those medications can have significant side effects that are going to interfere with your sleep. So, you know, corticosteroids like prednisone, um, might have that effect. Um, I know I'm on one that definitely has that as a side effect and it is really frustrating.

So, we've got to remember that the consequences of sleep deprivation are real. I'm experiencing them today, guys, because I've had to re-record this little section several times because my brain's not braining today and my mouth isn't connecting to my brain.

So, the consequences of sleep deprivation can exacerbate our autoimmune symptoms. It can create a vicious cycle. And when you're tired, your immune system is less effective at fighting off that inflammation and the other autoimmune-related issues that we have. So this can just lead to obviously worsening symptoms. It just makes it even harder to fall asleep.

So if you want a detailed discussion on that, check out episode number nine, where we talk about quality sleep and there are just a few. Just really quickly. A few important highlights from that are going to be to create a sleep conducive environment. One is going to be establishing a consistent sleep schedule, limiting your screen time before bed, practicing relaxation techniques and, as we always say, consult with your health care provider.

If insomnia is significantly impacting your quality of life, talk to your doctor. There are things they can do, there are treatments they can recommend, lifestyle changes you can make that will help. So, by addressing these underlying causes of insomnia and implementing these strategies for improving sleep, We can with autoimmune disease break free from the sleep deprivation cycle and experience a better quality of life.

STACY: And I agree that sleep is really important, but we have a lot of things in our environment that affect us. And one of the things that affects us a lot is sunlight. So Paradox #5 is the sweet sorrow of sunlight and dietary dilemmas because we have environmental issues and foods that we eat that can cause problems.

One of the most intriguing paradoxes that I think we have is the relationship between sunlight and depression. People with autoimmunity have a tendency toward depression, but many of us also have problems, so while sunlight can be a mood booster, it can also exacerbate the symptoms of people with autoimmune disease.

Sunlight can help regulate your mood. It can help increase your serotonin. It's a neurotransmitter that is associated with happiness. And so, there is a reason why people say, go outside and get a little bit of sunlight. You'll feel better, because you literally will. However, for individuals with autoimmune disease, excessive sunlight exposure can trigger flares. It can worsen symptoms. A lot of people have, um, problems with being in bright light. It hurts their eyes.

BECKY: For people like us with lupus, it feels sometimes like your skin is on fire, honestly. This is the best way to explain it. It's different than a sunburn. It's hot. And, um, so one of the other ones that is an interesting one, like Stacy mentioned, dietary dilemmas.

So one of the big ones that you probably hear a lot about are foods like garlic and echinacea, because they're touted as really great immune boosting foods and supplements. However, even though they are beneficial to people in general, and most people because they do help boost your immune system, again, there are some autoimmune diseases that these are not good. Um, because essentially your immune system is working in overdrive. And so the same reason that garlic and echinacea would be good for normal people that don't have autoimmune diseases makes them not the best choice for you if you have autoimmune diseases, because your autoimmune disease is already in overdrive, and you don't need to overstimulate it anymore.

I think another dietary issue would be nuts and seeds, right? There are, I mean, we know nuts and seeds are nutrient dense and they provide us those really good omega 3 fatty acids and there are lots of health benefits to them, but unfortunately they can be problematic for people with certain autoimmune diseases.

Um, you know, diverticulitis for example. And so we know that they are packed with fat, healthy fats, protein, vitamins, minerals, but we all know that with autoimmune disease, it's not uncommon for us to develop allergies or sensitivities. Oftentimes, um, when you start tracking that, a lot of people do find that they have sensitivities to nuts and seeds, and it can lead to some pretty severe symptoms.

So one of those little, um, those little symptoms might be, um, and I didn't know this till recently, but if you are eating nuts or seeds and you get cankers, that is a sign of an allergy and you probably shouldn't be eating those nuts or seeds.

Navigating these paradoxes. It is kind of a delicate balance, right? As always, we're going to suggest that you work with your health care provider closely to determine the best course of action. In many cases, finding that right balance between sun exposure and dietary choices and medical treatments is key to managing your autoimmune condition effectively. It can be done, and sometimes it takes a little time to figure out what's going to work best for you, and what you can and can't eat, and what you can and can't do, but work with your doctor. You'll figure it out. You just don't give up. Don't give up. Don't get discouraged. Just keep working on it.

STACY: And paradox number six, guys, is one that I think all of us have been experiencing a lot. When we get a lot of stress and a lot of exhaustion, we lose our words. So, we call Paradox #6 "the Idiot Savant's Dilemma." Knowing too much to remember anything.

BECKY: This is my favorite one.

ALYSIA: Preach.

STACY: So I think that one of the most perplexing paradoxes in autoimmune disease is this phenomenon of the idiot savant. This oxymoron describes individuals who possess a vast amount of knowledge, but they struggle to access it. And that makes them often appear like they don't know anything.

And as we've all discussed. We are wordsmiths. We love our words. We were raised by a man who was a wordsmith, and we love our words. And one of the common manifestations of this is the inability to find the right words. We know the words, we just can't find them. You may know exactly what you wanna say. You may even be able to explain everything you're trying to say, but you can't find the word. That is the thing you just described. So, it's like having a dictionary in your head, but you're completely unable to find the page you need.

BECKY: And you might have even had the page like an hour ago or five minutes ago, and you probably could have used that word then, but you're not going to be able to use it in the moment, and maybe you'll remember what it is in another hour or in another 24 hours, but that's just the way it works.

STACY: And there's a reason why this happens. It's the fog of cognitive dysfunction. And I know that's a lot of words, but basically what it means is that autoimmune disease can lead to an inability to grasp things. Our cognition or that which allows us to speak and make ourselves understood kind of gets fuzzy and messed up when we have autoimmune disease, and it can make it really difficult to retrieve information from our memory, and this shows up in a lot of ways. Some of the ways that it shows up are a difficulty finding words, which we just discussed, forgetting names, forgetting dates, struggling to concentrate, feeling that really bad brain fog, or feeling like you're slow, like your brain is just dead...the timing belt in your brain is just off.

It's not I, I like to say today. I'm not wording my words.

ALYSIA: Yeah, I was gonna say my words are not wording. Um, my oldest Kenzie She has an analogy that in our brains our brains have a little hamster, and it's running on a wheel, and that's what keeps our brain moving. And we joke that when we're struggling to say what we need to say, or, or just like comprehend something that we need to comprehend, we're like, my hamster is sleeping right now, so you're going to have to just revisit this with me a little while. This has been a very real struggle for me today. My sisters could attest, my coworkers could attest. I was telling them before we started recording, I was talking to my girlfriend at work two times in a short shift. I was mid-sentence and completely forgot what I was telling her.

I really hate feeling like an idiot. I hate feeling like an idiot, because I know I'm not one, but listen, I, I think, and I don't, I think that a lot of people with autoimmune disease don't know that this is actually a problem. They just think they don't, they don't know that this, that autoimmune disease does affect your cognitive abilities, and your cognitive, your cognitive function.

So it's good to know you guys aren't idiots. It's just, we're struggling. Our brains are struggling. Our bodies are struggling and it's okay. You, sometimes your hamster needs a nap and that's okay.

BECKY: That's true. And it really is the whole thing. We we've talked a lot about inflammation and inflammation impacts your brain.

That's all there is to it. In fact, if I can find it, we will try and include a link. Um, I saw a really good study a not just a week or two ago about the impacts of inflammation in the brain and how it really does that that's a real effect. Losing your words and losing your concentration. Um, there are a few things to cope with the cognitive challenges that we can do, if you're experiencing them, you can try things like memory exercises like puzzles and games.

You can learn new skills. It sounds kind of funny, but honestly, guys, learning new skills is a great way to use your brain because when you have autoimmune diseases, you can't always do everything you were able to do before anyway. YouTube has so many free options of things that you can learn. Pick things in your price range, in your activity level range, whatever it is.

There are so many options of activities that you can learn.

Um, don't forget to take breaks, because also as we talked about, when you're tired, you sometimes can almost overload your brain. Give yourself time to rest and recharge. Another really important one, it's important for anyone, but especially people with autoimmune diseases, is to stay organized.

And we have so many wonderful modern tools, calendars on our phones, planners, whatever we want to take. There's note taking apps to help you stay on top of things. If somebody looked at my calendar, they would probably laugh because I have very ordinary reminders that probably there's a lot of people out there wouldn't need, but I need because if I don't have a list, I am not going to keep track of it.

So, those are all good things, those kind of tools. Again, you've heard us say this several times already, but seek support. If you feel like your cognitive abilities have really decreased and you're really concerned about it, talk to your doctor, because honestly, the inflammation that's caused by having autoimmune diseases can sometimes not just temporarily impact your brain, but can have long-term effects, effects on your brain.

So talk to your doctors, consider getting a neurologist if you're really concerned, and they can help you look into those things. Um, remember that again, just that, that this idiot savant parable, parable, look at me go. It's ironic considering we, my words aren't wording, right? Remember the idiot savant paradox is a common experience for most of us with autoimmune diseases, but by understanding that it's actually a thing, a real phenomenon, and implemented...

right now, guys, my words aren't wording.

ALYSIA: Keep it. Please keep this. Please keep that in there. It's such a perfect example.

BECKY: This is a perfect example! Um but by, by understanding that this is a real thing, obviously, as I'm in the middle of having a moment...that you can implement some of the coping strategies we talked about, and you can help manage your cognitive challenges, improve your quality of life.

ALYSIA: So the bittersweet conclusion, we have explored some mind bending paradoxes in autoimmunity today from the, I'm, so tired and I need to exercise paradox to sunshine makes me feel good, but it also makes me sick paradox. It's a never ending game of whack-a-mole. But here's the good news: we are not alone! Millions of people worldwide are navigating these confusing contradictions. And by understanding your condition and advocating for yourself and finding support, you can tackle these things head on. Just remember that laughter is the best medicine.

I know the three of us, we have had a lot of laughs trying to get this episode recorded today. So, um, laughter is the best medicine. Keep your sense of humor handy and you're going to find your way through this crazy maze of autoimmune adventures. We hope you are fans of irony because we are. Um, thank you for joining us today. Like, and subscribe, and you can find us at autoimmuneadventures.com.

Remember you are worthy of joy. Your disease does not define your life, you do.

HELPFUL LINKS:

Article about study that shows link between inflammation and mental sluggishness:

https://neurosciencenews.com/inflammation-mental-sluggishness-15212/