5 Essential Tips From a Patient-Doctor if You Suspect You Have an Autoimmune Diagnosis
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Kara Wada, MD: Hello and welcome back to this episode of the Becoming Immune Confident podcast. My name is Dr. Kara Wada. I'm a board certified pediatric and adult allergy immunology lifestyle medicine turned autoimmune patient, and we are going to share some awesome tips on navigating uncertainty. These are five essential tips if you are suspecting that you may have an autoimmune diagnosis.
What is a misbehaving immune system?
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Kara Wada, MD: So often in my office and in my clinical practice, I am seeing patients who are likely on their way to having an official diagnosis of an autoimmune condition or another immunologic diagnosis. So I encapture all of these in this term misbehaving immune system. So what do by that? First and foremost, when we think about our immune system, it is our body's way of identifying what is safe from not safe. Okay. And so when we think about when that process goes awry or misbehaves, that can happen in several ways. When we think about allergy, it is our body inappropriately seeing the outside world as a problem or as a danger signal. So in the case of peanut allergy or pollen our body is saying, " Get the heck out of here. This is not safe." Okay, when we think about autoimmune conditions, our body has failed to have tolerance to our own cells and tissues. There is some nuance between autoimmune and auto inflammatory where the volume is turned up on specific flavors of inflammation. So not all inflammation is exactly alike, but too much of it that sticks around for too long is almost certainly problematic.
And then one of the other situations that comes up is cancer. Our immune system is failing to identify and recognize that we have our own cells that have gone rogue.
And then the last situation that we'll mention is immune deficiency.
So this is a situation where our immune system is not identifying as well or fighting off as well infection.
And that can happen in a whole myriad of different ways.
If you want to learn more about the nuances of this, head back to our series of episodes that was Immunology 101. We'll link to it in the show notes. We start from scratch of the different parts and pieces of how our immune system functions, how we recognize infection, how we fight off infection, how we make memory to infections in our vaccines, and then what happens when things go awry.
So it's a four episode series, if I'm remembering correctly, all about how our immune system works and it really is taking you in helping you really become a scientist in your care, which is really one of the key aspects that we're going to talk about in today's episode.
Tip #1: Recognize and track symptoms
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Kara Wada, MD: So tip number one is recognizing your symptoms and looking for patterns.
So one of the first things that your immune system physician, whether it's an allergist, immunologist, or a rheumatologist typically those are the two types of physicians that really hone in on autoimmune conditions. Now, quick little asterisk or caveat is, for instance, If there is a organ specific autoimmune diagnosis, like multiple sclerosis, which is a neurologic condition, or inflammatory bowel disease, like Crohn's or ulcerative colitis, those conditions are typically cared for by that organ system specialist, so the neurologist and the gastroenterologist.
Okay, so there's some nuance, but when we're thinking systemically, we're thinking allergist, immunologist, and rheumatologist. What we are going to be doing is we're going to be putting on our Sherlock Holmes detective hats, and we are going to be listening to your lived experience and trying to put the pieces together with diagnoses and things that we have learned about in our many years of training and clinical practice.
Things in particular that are going to clue me in or make me want to ask more questions about are things like fatigue. How is your energy level? What sorts of things are resulting in changes in your energy level? What sorts of things are you unable to do maybe because of your fatigue? Joint pain?
But in particular, are you experiencing stiffness?
If so, for how long? Are you experiencing swelling? What does that look like? What joints are affected? And what sorts of things, again, make things better or worse?
Skin changes, also huge, right? Along with our digestion. These are all aspects to our health that very well may be affected or come into play in various autoimmune conditions.
Whatever symptoms you are noticing, what I find incredibly helpful is when folks bring in a little summary of the symptoms they've had and they've done some tracking or some kept a diary of their symptoms. How often do they occur? How long have they occurred? Thinking back, were these happening off and on for years or is this something relatively new? Are your symptoms changing in severity over time, also really helpful.
And are there any things that you've noticed that seem to lessen the intensity, make it go away, or make it worse?
These are all really helpful clues that can really help us get to digging in to what very well may be going on in what is really driving your symptoms and in trying to then be able to address those so that you could have relief from those symptoms as well.
So tip number one is recognizing symptoms and the patterns. And the best way to do this is by keeping track of them over that period of time. And so I know for in many areas it takes quite a while to get in to see an immune system specialist. And so this is where, you know, make good use of your time so that you can get the most out of your medical visit.
We have a whole nother episode on making the most of your medical visit too, so we'll link to that because you will want to check that one out as well.
Tip #2: Seek professional medical advice
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Kara Wada, MD: Tip 2. Seek professional medical advice. I can't emphasize this enough but really, seeking out those who have expertise in what you're worried about even.
So if you're worried about an autoimmune condition, it can be really helpful to seek out the expertise of someone who has experience and a wealth of experience in that area. It can be helpful to check out reviews patient satisfaction, though those measures are not perfect. I also have found it really helpful to talk with my current care team. Those that I really love on my care team, ask for their potential recommendations. Do they have any specialists that they work with that their patients speak highly of. The other place to ask or look for folks and recommendations is within perhaps, perhaps you suspect a particular condition, ask within that patient community who is known for one being active within the field, maybe publishing or doing some research in that area, but also is known for listening, for validating your lived experience and for having that good bedside manner, too. Because it takes a combination of that trusting therapeutic relationship that can be hard to develop, especially if you've had some bad experiences within the medical system.
Along with someone who is staying up to date, who knows their stuff and has good intentions as well.
As you were preparing for that visit, having your journal and your notes handy, maybe bringing, planning on bringing an advocate with you can be really helpful. And then you may also keep, have a little list of, "Okay, what are my goals for this particular visit? Are there certain things I'm really fearful of? Are there particular lab tests that I'm curious if that would be helpful in my situation?"
Jot those things all down. We're actually going to have a really great resource for you to download that is going to help you through this process. Over on my website and we'll link to that in the show notes as well, but walking you through this process of summarizing your tracking of your symptoms. And also really getting clear on what you want to communicate at the visit and hopefully get out of that visit as well.
Tip #3: Conduct reliable research
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Kara Wada, MD: Moving on to tip number three. Conduct personal research responsibly. So I am absolutely thrilled that we live in this time of having so much information, especially medical information, at our fingertips. It's incredible. It really has changed the dynamic and the conversations and the level of conversations I am able to have with my patients. And we really get to come together as a team and have shared decision making. It is bringing together their lived experience, the experiences I have in caring for folks with their condition and the science, right?
The science piece of where's the research, where's the data, what are their values and goals, and bringing that all together in one space so that then we can move forward as a team. The reality is, though especially in the interwebs and on the internet, there's also a lot of crap and a lot of bullshit.
That's the reality. I have gone into support groups, in part looking for support to specifically, autoimmune and Sjogren's support groups, and some of the stuff that I've seen, I just have to slowly back away because it is just not good for my stress levels.
Some, there's a lot of folks who are selling a lot of snake oil a lot of things that are unproven that may or may not be helpful and may potentially actually be harmful. And so it's really important to look for the credentials and the background of who is making a recommendation.
The second piece is, do they have a financial stake in what they are talking about or recommending? Also important to understand and it can be really helpful over time to work on seeking out reliable resources like official health organizations, peer reviewed journals things that have more evidence and science behind them, right?
It's also really important to be conscientious of our tendency for self diagnosis. Oftentimes, patients have it right. And sometimes we don't, right? Just like in the office, like I want to get every diagnosis exactly right, but sometimes we have a certain amount of information in a certain period of time and things may evolve or change.
And I am human. But I'm not kidding. I'm not batting a hundred for a hundred, right? And I have this extra training expertise in this area, right? To expect yourself to have the perfect answer to what's going on with the information that you have, you may be on the right track, but maybe not exactly right.
Or there may be just things that you weren't aware of that didn't think of that may mimic what you're experiencing. So I say that to just say, keep an open mind as you go into a visit. And and I know that can be hard, especially if you have had circumstances where you've been brushed off.
Or felt like you weren't listened to but leading with curiosity and open mindedness can be really helpful on, on this diagnostic odyssey.
Tip #4: Prioritize self-care & lifestyle
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Kara Wada, MD: All right, tip four, lifestyle considerations, self care, self compassion. All of this is huge when we think about living with. a chronic condition, whether that chronic condition has a name or not yet.
I realized that's incredibly frustrating, but our habits matter and our habits can be harnessed for healing. Okay. So the amount to which those habits may make a difference or not is going to vary for each and every one of us. Some of us may notice like for me, sleep is huge. If I have a couple of nights of crappy sleep, my pain levels go up.
And just not feeling as great. If I have a cold or another illness, my dry eyes and my dry mouth are on the rise. Nutrition, in years past, I needed to be a little bit more on point with. And now, I've become a little bit more resilient where I can eat a little bit more, and occasionally some junk food here and there and do okay.
I have patients where they really need to be super, pretty diligent about their eating and their sleep is not quite as much of an issue, right? So we all have kind of this different dynamic. We have to be willing on our journey to realize for one, it's a journey. We're never going to get to a certain point and say, okay, this is exactly what I do. Every single day from here on till the end of my life, it's always going to be evolving and changing. So being open to that is really helpful. And then becoming a scientist in your own care and experimenting with how different aspects to your lifestyle may affect your symptoms. This can be really helpful as you're tracking your symptoms.
Overall, if we can lean into those five must-have daily habits for healthy living. Those are really going to center yourself in things that we know are supported by science. They're going to help immune system health. They're going to help cardiovascular health and metabolic health, all these things.
What are they?
First is meal management. So when we think about managing our meals, thinking ahead and planning ahead really helps set the stage so that we can. Set a goal and work towards that. If we aren't planning ahead, then we aren't able to really work towards a goal nearly as easily. If you want to learn more about that, I have a whole meal management masterclass you can check out.
But really, what do we want to focus in on from a nutrition standpoint? We want to slowly but surely increase the amount of fiber in our diet. How do we do that? We want to increase the number of plants, the types, and the amount over time. What are we thinking about? Vegetables, fruits, whole grains, nuts and seeds, herbs and spices, beans and legumes.
So like lentils too. All of those have different types of fiber. They all feed different members of our microbe community. The diversity of our microbe community is what helps really balance our immune system and turn down excess inflammation. So this is all really helpful. The problem is, for most of us, we grew up and have lived and eaten a very low fiber diet for the majority of our lives.
So you have to think about making these changes very slow and steady rather than jumping straight into the deep end because you do that and you're probably going to end up with a lot of tummy distress. So just start slow, maybe adding, one more serving of veggies a night at dinner, get that into the routine.
And then maybe you decide, "Hey, I'm going to try doing some oatmeal or some smoothies for breakfast and see how that goes". Slow and steady changes. They add up and they snowball over time. Okay, so that's the meal piece. Mind time. Mind management. So our brains are always running. We have 60, 000 thoughts in a day.
Many of those are subconscious. But we tend to live in what we call like the left side of our brain, the logical side of our brain. It's getting stuff done, going through all the things with life. Our modern existence doesn't make much time for us to experience things on the right side of our brain.
So the right side of our brain is the side that is all encompassing, it is empathetic, it is creative, it is curious, it is those expansive elements that make us really human. And so carving out, even if you just start with five minutes a day, just to have some time to pray, to meditate, to journal.
Something where you're having some quiet time and able to explore and essentially work out that right side of your brain is really beneficial. Ideally, you want to try to work your way up to about 20 minutes a day of mind time. Next up, we have our meaningful moments. These are my favorite. So lately, my five year old Josie she is an early bird.
She's getting up with me at 5:30 in the morning. And this is my time where I do my mind time. So she and I this morning sat in this little recliner. I have one of those sun lights, the happy lights. So we're getting a little sunshine, artificial sunshine this time of year. And she picked out our morning meditation.
So we did that together. She sat on my lap and was able to put her hand on her heart and just having these these little moments where you have meaningful interaction with those that you love and care about, whether it is a phone call where you are actually connecting with that other human on the other end of the line, maybe it's writing an old fashioned letter or an email to someone, maybe it is lingering in a hug.
For a minute staring into someone's eyes, these are really forging these in supporting these relationships that we know as a social species helps us live longer, healthier lives. So there is really great science that says loneliness will equate to smoking 15 cigarettes a day.
So this is really counteracting a lot of the loneliness and the disconnect that we have all felt, especially coming out of the last few years. Next on our list is movement, so getting some movement in. Some is better than none, and you want to aim for movement that makes you feel good.
So you don't want movement that is painful or that you are feeling really cruddy, that next day or the day after that. All right? Ideally aiming for 150 minutes of moderate exercise a week. That's where the data says, it's you hit your best there, but some is better than none, and we all start somewhere.
And last but not least is mandatory me time. This is carving out time specifically for you. Whether it is time to plan your schedule, or it is time to read a book, to do something fun, something that makes you smile or sparks joy. Put it on your calendar. All right. So these are, some of those lifestyle things that you could just start incorporating.
They don't cost really any money but really can help you move the dial as you are thinking about, really trying to turn down inflammation, make some meaningful changes for the long term to help your health and healing.
Tip #5: Prepare for the journey ahead
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Kara Wada, MD: All right, last but not least, we have tip number five. which is preparing for the journey ahead.
We've talked a little bit about getting a diagnosis is a bit of an odyssey and living with a chronic condition, whether it has a name or not, if you're dealing with symptoms that are impacting your quality of life it really requires us to develop skills. We need to develop a mindset of resilience.
We need to work on flexing our ability to shift things to a more positive spin in a toxic way, but in a way that helps you through those crappy days. And we also need to develop confidence. We need to be able to sit up and stand up and say, Hey, this isn't right. I need care.
In order to advocate for our own health. For those of you listening, especially that are in the United States, our health care system is a bit of a dumpster fire. Physicians are leaving practice over 62 percent are burnt out, which means they have a lot of trouble really connecting and leaning in and getting curious, especially when it comes to dealing with those of us that don't read the textbook.
And we have to advocate for our own health and that is really uncomfortable sometimes. Most of the time it's really uncomfortable but we need to develop those skills practice them in order to really help ourselves. in the long term. The other skill that I think is absolutely critical when thinking about preparing for the journey ahead is realizing that no one has a crystal ball that is going to be able to tell us how, whatever our condition is, or the unknown of our condition, there's always going to be uncertainty.
I think there's an increased awareness of that uncertainty, especially if you have a diagnosis or you suspect a diagnosis. You may hear or see the worst case scenarios especially on social media or in support groups. But the reality is that your journey is your journey alone. We are all on our journeys together in a collective, in a collective.
And yet we are also on our own journey. And we can take, note that that in itself is empowering. That we don't necessarily have, we don't have control over what diagnosis we have. We didn't cause ourselves to have a diagnosis. And yet, we have the power to choose how we show up with those symptoms, with that diagnosis.
How we show up to this life that we have. And that in itself is pretty damn empowering. So let's summarize.
Tip 1. Recognize their symptoms and track your patterns. Looking for patterns. And there may not be patterns. I forgot to mention that. This happens a lot with my chronic hives patients. They've racked their brains trying to figure out what a pattern is. There isn't one. There's no rhyme or reason. The hives pop up whenever they damn well please. And that is just as helpful as figuring out what triggers or relieve your symptoms. So I'm glad I remembered that.
Tip two, seek professional medical advice, and be smart about who you're going to see using some of those tips for looking for recommendations.
Tip three, conduct personal research responsibly looking for edu, gov peer reviewed literature and not, someone selling something that their niece's nephew's brother got healed from. Okay.
Tip four. Do what you can while you're waiting, right? You're tracking your symptoms, but what can you do with your daily habits to really help yourself on this healing journey to the best of your ability?
And part of that, going into tip five is really preparing for that journey ahead in really building resiliency, building your confidence. Flexing, that ability to shift from our brains, which inherently are negative focused and being able to reframe things. All of those are going to serve you so well as you continue on this journey of showing up day after day with whatever life is going to throw our way.
If you found this helpful, I am thrilled. I would love to hear your feedback. If I missed anything, drop me an email, let me know. [email protected]. If you are like, yeah, I want to go download.
How to get your free symptom tracker
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Kara Wada, MD: What is this resource you put together? Awesome. My team and I just put together essentially a little worksheet for you to fill out print out to bring with you to your visit so that you have everything written out. You have your goals written out. Your story, your health history, all these things as you are going to see your immune system expert locally.
If it's someone who's in Ohio, if you're traveling to Ohio to come see me, bring it in to see me and in the office. I'd love that. If you are like, "Goodness, this just spoke to me. I really want to see how I can work with with Dr. Kara". I would love that. If you want to head over to drkarawada.com. Click on ways to work with me. It's a tab up at the top. We have information on my group coaching, my medical mentoring sessions, and those who want to see me in Columbus, Ohio at the office how to schedule with me there. I would be honored and thrilled to help you on your journey and helping you in your journey to becoming immune confident. I hope you have an incredible day, incredible rest of the week, and I can't wait until we meet again next time.
If you are loving this mix of self discovery and science found here on the Becoming Immune Confident Podcast, I'd love to invite you to sign up for my email list. Hop over to drkarawada.com and hit subscribe to ensure you don't miss out on any insights into new immune system science or how we can harness healing through our daily habits.
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