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In this episode, I will cover:

• The specifics of my autoimmune disease story
• Learn what an autoimmune flare is
• Explore autoimmune ‘triggers’
• Learn about the ‘Spoon Theory’ and how it helps explain autoimmune disease
• What it means to have Multiple Autoimmune Disease

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Episode Transcript:

Hello everyone. How’s it going? Today we are going to discuss five things. I wish I knew about autoimmune disease when I was first diagnosed. So I want to start off by asking you some questions. First of all, do you have one, or maybe even multiple autoimmune diseases or diagnoses? Many of my followers have this hodgepodge of really uncomfortable symptoms, but no diagnosis and sometimes that can be even more frustrating.

The specifics of my autoimmune disease story

So if you do have an autoimmune disease, when were you diagnosed and how were you diagnosed? I was personally diagnosed in 2011 with celiac disease by my doctor in Chicago. So even though I had struggled with fibromyalgia from seventh grade, which seems to have a correlation to autoimmune disease, it’s not actually classified autoimmune.

So 2011 was when I first received my autoimmune diagnosis. Now maybe I wasn’t paying attention, maybe I was high on those narcotics they were giving me. But all I remember hearing is, you can’t have gluten. Celiac disease equals no gluten. Here’s a list of common foods that have gluten in them, avoid them. Then that was that. So you’ve already heard me talk about how I rebelled against the gluten gods and I obviously wasn’t taking that diagnosis very seriously in the beginning. I also thought that that was my rock bottom in my health journey, and that when I received this diagnosis, everything would turn around. When I removed the gluten that would be my turning point. Instead, what I found was that my health continued to decline, even after I made those dietary changes.
So here are five things that I really wish I had known when I was first diagnosed with an autoimmune disease.

Learn what an autoimmune flare is

Number one, you can have autoimmune flares. What is a flare? First of all, you’ll know when you have one, if you haven’t already. But an autoimmune flare is characterized by the sudden onset of severe symptoms usually based on certain triggers, and those triggers may be unique to you. So if you haven’t had one, imagine all the worst things about your autoimmune disease happening at once. That’s kind of what a flare feels like. So for example, if you have, say, Crohn’s disease during a flare, your T cells attack the lining of your gut, which can cause this horrible stomach pain.

Or if you have multiple sclerosis (MS), during a flare you might not be able to get up out of bed. You might have trouble thinking clearly, you might feel extremely, extremely weak. We all ‘flare’ in different ways, and based on different triggers, depending on our unique body, and whatever disease we may be struggling with.

Explore autoimmune ‘triggers’

So some of the triggers that you might have are things like stress, anxiety, gluten, accidental gluten exposure, a.k.a. getting ‘glutened’; exposure to other types of toxins or chemicals; coming down with an infection or illness like the cold or flu; fungal overgrowth like candida; inflammatory foods; processed foods; leaky gut; prescription drugs; non-steroidal anti-inflammatory drugs; things like aspirin. If you have been having really poor sleep or lack of sleep; or even just the air you breathe and high pollution that maybe, you aren’t used to.

So flares can be dangerous because inflammatory chemicals in your body are signaled on, and your immune system begins to attack itself. So that feels like this little war going on inside your body when you’re flaring. And your tissues are attacked and can eventually die. So why do I wish I knew this? Because I would have better understood when, and why, my body felt like it was revolting against me. Now, I know in retrospect, that my body was not fighting me, it was just sending me a signal that something was off balance, or I had experienced that trigger. And so it wasn’t fighting me. Because we want to get out of that mindset that the body is against us. But it felt like this little war inside of me at the time.

So understanding what a flare is and the tools for getting through an autoimmune flare, really would’ve made a huge difference for me. So that’s number one. I just want you guys to understand there is such a thing as autoimmune flares if you’ve never heard of that. And it helps us understand our body a little bit better.

Learn about the ‘Spoon Theory’ and how it helps explain autoimmune disease

Number two. Things I wish I had known is the ‘Spoon Theory’. Have you guys heard of the ‘Spoon Theory’? The spoon theory is a term that was birthed, a theory that was birthed by Christin. And I’m sorry Christin, I’m probably going to mispronounce this, Miserandino, Miserandino, I think that’s how you say it, Christin Miserandino. And Christin was struggling with lupus and the spoon theory, out of this spoon theory came this term ‘spoonie’ for someone who has an autoimmune disease. It’s a pretty popular hashtag on Instagram. If you haven’t checked it out – #spoonie. So Christin was at this diner with her college roommate, and her college roommate asked what does it feel like to have lupus? And she proceeded, Christin proceeded to grab all the spoons off their table, and some of the tables next to them, and gathered about 12 spoons up together. And she put them together on the table, gave them, put them out in front of her friend and said, Here you go, you have lupus.

Her friend was a little confused at first, but she explained that part of having chronic illness, was having to make choices about things that perfectly healthy people do not have to make choices about. So while a healthy young adult wakes up with potentially infinite possibilities, and energy, this is that never-ending supply of spoons. Someone with chronic illness might only have 12 spoons and there’s no guarantee that they might not drop a couple on the floor, but they might start with 12 and each task during the day, requires a spoon, requires energy.

So for example, brushing your teeth, washing your hair, bam, spoon gone. Two spoons, gone, brushing your teeth, washing your hair. And then you make breakfast. Bam. Another spoon gone. You guys see where I’m going? And so, some choices need to be made. You might be leaving work to go home for the day, and you only have two spoons left. And you might have to decide between picking up your clothes at the dry cleaner. Does anyone use a dry cleaner? All right confession, I’ve never been to a dry cleaner in my entire life. But if you do that, maybe you have to decide are you going to use a spoon to go pick up your clothes from the dry cleaner, or are you going to make dinner that night?

So you need definitely need at least one spoon to get ready for bed. So you have a total of two left. And how were you going to utilize that? So you just have to make choices based on how many spoons you have left for the day. And on some days you might have more spoons than others. Some days you might feel like you have 30 spoons. Other days you might feel like you have 10 spoons, but you start to put one spoon in your pocket and this spoon is on reserve, because you know that shit hit the fan at any time.

So there’s also this little piece of protection in that where, we kind of conserve our energy so that we always have that one spoon in our back pocket. Now I do not like to live my life in fear, so I don’t walk around terrified about how many spoons I have left for the day, and frantically thinking, Oh my God, I only have three spoons left. Because that would be living from a place of lack, and in a lack of mindset, you will never heal.

However, I do like how this theory can help explain chronic illness, and help you explain chronic illness to your family and friends so that they can understand better. And they can even start to use that spoon analogy with you. As you start to explain maybe an on a day that you are feeling really fatigued. It also helps you manage your energy for the day.

Now being my rebellious self, I didn’t think I had to change anything. Which led to a lot of days where I felt totally burned out. I had used up my spoons and I had probably even borrowed a few spoons from the next day. Therefore, I ended up severely burnt out, and exhausted for several days. Have you guys ever experienced that? Where there’s one day that is extremely taxing on your body and going to bed and waking up in the morning doesn’t quite fix it? You’re still drained and that kind of lingers with you, and lack of sleep, or exerting yourself too much, can also trigger that flip flare. So that’s what this spoon theory helps. You guys can read the whole story on Christin’s website, butyoudontlooksick.com. All one word, butyoudontlooksick.com. So that’s number two, the spoon theory. Hopefully you guys can go use that in your life and, potentially increase the understanding of those around you as well.

Number three, things I wish I knew. Is that our immune system is a nutrient hog. Yup. It is a big old hog. It uses micronutrients more than any other system in our body. And so it needs this wide array of nutrients like vitamins, minerals and amino acids, and fatty acids, and plant phytochemicals in order to be able to operate efficiently and do its job, which is part of what keeps us healthy. So when you aren’t getting enough nutrients, the immune system begins to dysregulate and it just stays on. It stays turned on. Which means it stays in an inflammatory state. So this dysregulation, plus potentially eating a diet that is inflammatory means loads of inflammation in your body. And we know now that inflammation has an impact on almost all disease. And, now we’re starting to see it also has an impact on mental health.

So what I wish I had known, is that my body was likely not getting enough nutrients, and especially not absorbing all the nutrients that I put into my body, or eating in my diet. And I would have started to add more colors and diversity of food to my diet and especially added extra anti-inflammatory foods to keep inflammation at bay. So again, number three, our immune system is a nutrient hog, needs a lot of nutrients in order to do its job and keep us healthy.

All right, number four, once you have one autoimmune disease, you are more likely to develop another autoimmune disease or even multiple autoimmune diseases. I surveyed the women in my Facebook group and it was really interesting to see which and how many autoimmune diseases these women experience. So most of the women answered at least one, because my group is called Autoimmune Drive and that’s why they’re there.

What it means to have Multiple Autoimmune Disease

But many people experienced two, sometimes three, even four, or five autoimmune diseases. And the combination of at least three autoimmune diseases in one person, has actually been defined as M.A.S., which stands for Multiple Autoimmune Syndrome. And about 25% of patients with autoimmune disease have a tendency to develop additional autoimmune diseases, and at least one of them is usually a skin disease such as psoriasis, scleroderma, or in my case, vitiligo. I was first diagnosed with celiac, and just within a year or two later, I also developed vitiligo. So why does this happen? Regina Berkovitch, Ph.D and doctor of clinical neurology at Keck Medicine at the University of Southern California said, “If the immune system already follows the autoimmune pattern, it is just a higher possibility that there will be another target.” And why is this something you’d want to know when you’re first diagnosed?

So you can take healing frickin seriously, and be on the lookout for changes in your skin. Or changes in your symptoms and potentially catch something in early stages, so that doesn’t become chronic in your life. So again, this happened to me after I developed celiac, developed a skin condition, which is also autoimmune called vitiligo. And I think it’s important for all of us to know that we have a higher risk and it doesn’t have to, again, be something that puts us into a fear mindset, but simply in awareness. And maybe even some inspiration to really take your healing journey seriously, and do everything you can to support your body.

And lastly, number five, there are also emotional roots to illness. This is my bread and butter. This is my jam. This is what I love to talk to everyone about. And I especially wish I understood this when I was diagnosed with fibromyalgia after doctor, after doctor looking at me like I was crazy because I didn’t fall and I didn’t hurt my back. I wasn’t in a car accident, I was just in pain. And so they looked at me like, well what happened? My answer was I don’t know, I’m just in pain.

So what do I mean by this emotional route to illness? I mean that there are deeper roots. And there doesn’t have to be this physical injury, or hormonal imbalance for you to experience pain. So, for example, the pain in your left shoulder might have nothing to do with an injury, or you falling and hurting your shoulder, or the weird way that you sit at your desk every day. And instead, that left shoulder pain might actually be these super high, almost unachievable expectations that your mother has always had of you. Our left side is our feminine energy. And oftentimes, we also carry in the left, any relationships in our maternal bloodline.

So part of what I do as a coach is actually help people uncover these emotional, spiritual, energetic imbalances that might be affecting your health. What are the emotional roots that maybe singular within the symptoms you’re experiencing? Or it could be a combination of physical and emotional roots for whatever you’re experiencing.

I’ve also had a client who struggled with osteoporosis and it wasn’t that she didn’t drink enough milk because we know that’s also not true. That’s been debunked you guys. But she did feel unsupported and she felt unstable on her life for many, many years. And that led to this feeling of hopelessness, and helplessness, and had manifested in her bones. I had another client who experienced this constant ache between her shoulders, and she had never pulled her rhomboid muscle. She had never hurt her shoulders or had an injury, but instead she had manifested this deep underlying stress, chronic stress in her life. And she felt literally like the weight of the world was on her shoulders from a very young age. That kept building, and building, and building, until she was stuck in this product pain.
And then many of you listening may also struggle with thyroid imbalance, or thyroid disease, or Hashimoto’s autoimmune disease that affects the thyroid. So some of the symptoms and discomfort you can experience if you have Hashimoto’s is depression, weight gain, low energy, crappy sleep. But also let me know if this resonates with you. If you have a thyroid imbalance, maybe you’ve spent years swallowing your words; putting others needs ahead of your own; taking care of other people; even holding back your truth and what you really want to say or really feel on the depth of your heart. And you might struggle to stand up for yourself, and feel like you’ve really sacrificed a lot of your life for others. So Hashimoto’s a.k.a. people pleasers, let me know if that resonates with you guys.

So the emotional root is just as important to acknowledge in your healing and in fact can speed up the healing process exponentially. This is something that I experienced. If you really take that side of your healing seriously and integrate that into your physical healing as well. So that’s number five. There are emotional roots to illness as well. And that’s it.

That’s it for this episode, you guys, I would love for you to tell me what you wish you knew about autoimmune disease when you were first diagnosed. So DM me on Instagram. I always respond or screenshot this podcast and tag me with your answer. I can’t wait to hear from you. And if you love this podcast, I’d love for you to leave me a five-star review on iTunes. Thank you guys so much for listening and I’ll see you next time.

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