It’s Not All in Your Head: Living with Autoimmunity

“…Did someone eat, chorizo? Ugh, someone just burped and I’m smellin’ some nasty chorizo.”

I sat quietly, trying to hide the fact that it was me who let out this embarrassingly fragrant emission of gas while sitting at the white marble bar of the Spanish tapas restaurant. It was bubbling up in my stomach and I couldn’t contain it from releasing. I quickly diverted the conversation, directing attention away from myself and the odor.

Similar situations of struggling with burps locked in my throat only became increasingly more prevalent as time went on, leading to self-consciousness during most dinners with friends or dates. I noticed it most whenever I ate garlic or onions. As I would burp and taste the garlic, my body then craved sugar. I would eat the chocolate, or the ice cream, and my body wouldn’t feel any better – but at least when the gas rumbled up, I tasted sweet sugar instead of potent garlic. But the uncontrollable belching wasn’t the only unwelcome symptom my body dealt with.

Damn, baby, your body is fragile,” my boyfriend would exclaim every time I’d come home revealing that I yet again had another flu-like viral infection, UTI or bacterial vaginosis. I’d often frighten us both into a pregnancy scare by frequently waking up distractingly nauseous for no particular reason. It didn’t help that my period was never on time. I’d often go months without ever seeing as much as a red droplet. I knew something was off with my body, I just didn’t know what as my cryptic symptoms seemed to draw a map to nowhere.

Time went on and I moved out of state to attend graduate school. As a side gig, I started to teach spin classes in my new little town in Colorado. The indoor cycling world was a whole new high for me, and I felt great… for a while. Then, piece by piece, my body felt like it was breaking down. I’d constantly catch colds and had stabbing pain in my throat. My voice seemed to permanently drop an octave from its consistently hoarse-state. Three months in, the owner of the cycling studio called me to say that they essentially had to take me off the schedule because of how many classes I’d needed covered due to being sick all the time.

After I finished my Master’s program in Public Health, I began working a stressful marketing job (off brand from my health-focused education) and about five months in, my mouth broke out in an absurd amount of canker sores. I discovered them by waking up one morning with my gums swollen and red, bleeding. I opened my mouth wide, facing the mirror to investigate the scene further, only to reveal the colonies of white papules on the inside walls of my cheeks. My mouth hurt so badly that I couldn’t even fathom trying to brush my teeth. I had a fever of 102 degrees and was bed-ridden for two weeks.

More time passed, and I decided to move to L.A. on a whim because I hated my marketing job so much that it drove me out of that quaint, little town. Within two months of being in the smoggy city, my entire body broke out into an itchy, bumpy rash. The doctors diagnosed it as scabies, but something within me told me it was something else, something stemming from within. Soon after, I get cellulitis – a rapidly-spreading bacterial infection under the skin – twice.

This entire journey just described has been about six years in length. Six years of questions, confusion and suffering. Six years of experimenting with different diets and health regimens in an attempt to mitigate my random collection of symptoms and boost my fragile immune system.

Enter into present day, and I am happily rooted in the city of Denver, Colorado. Yet, as much as I work to eat a healthy diet, avoid the foods that seem to irritate the ever-present acid reflux that bubbles like a hot spring in my stomach, workout on an almost daily basis, drink water, do all the things you’re “supposed” to do as a healthy adult, I still frequently wake up feeling fatigued and with brain fog. I’m constantly, constantly bloated. Every time I eat, too much gas builds in my small intestine from the bacteria that aren’t supposed to be there, causing my food to come right back up, acid along with it. It burns my throat. It feels like something in there wants to escape, and often it does, as I regularly cough up chunks of carrots, rice cakes or whatever food it is that I just tried to consume. Any food that does make its way to my stomach doesn’t seem to get absorbed – nutrient deficiency evident in my brittle nails and gradually thinning hair.

My elbows ache with pain for no reason. My hands and feet tingle all too often. My heart jumps in my chest, yet another bout of heart palpitations for the day; I become light-headed and lose my breath. My anxiety starts to spiral out of control, and then I can’t tell what feels real in my body, or what I might be “creating in my mind.” Either way, it all feels just as real to me. My perception is my reality.

I finally had to tell myself, “I can’t live this way anymore.” So I bit the bullet and ordered blood tests for gluten-sensitivity after a supportive conversation with a friend who told me my symptoms sounded a hell of a lot like Celiac Disease. I dropped the $200 dollars for the blood tests and called a functional medicine clinic the next day to schedule a consultation. As someone who’s studied exercise science, nutrition and public health, I’ve felt disappointed in myself for going through six years of suffering with digestive and health issues without seeing a holistically-focused doctor to help get to the root of the discomfort I live with every day. But it’s not too late, and I’m not one to sit in disappointment or discouragement for too long.

I’m also not one to sit in excuses, but I do know that two huge contributing factors in my delay in getting real help had to do with the western medicine focus of our healthcare system: treat the symptom, not the cause, and many people telling me throughout my entire life, “It’s all in your head. You’re a hypochondriac.” I was told it so much that I believed it. But my body never stopped trying to talk to me. Its cries only got louder and louder until I finally listened; it must love me so much to communicate with me this way. But I’ve been failing it by only listening to sources outside myself who weren’t willing to listen to me back.

That was, until I sat down with two functional medicine doctors during that consultation that told me I, in fact, have an autoimmune disease and need to do something about it, otherwise more serious chronic disease will surely result. I already knew this reality deep into my soul, but the scientific proof and expert validation was necessary for me to feel empowered and hopeful to begin the healing process with my body. Finally, I have answers with tangible solutions. Finally, I have a starting point and a map to repair the damages that have been done.

But this wasn’t my fault. My disease is not my fault. I was born into a genetic predisposition, and then an environment set up to turn the heat (i.e., inflammation) on high. Life experience followed, with stressors, triggers and traumas, and so we have ourselves another walking case of autoimmune disease – bodies trying so fiercely to protect themselves that they kill themselves, slowly.

Isn’t it kind of beautiful, though? How much our bodies love us – so hard that they take their protective mechanism steps too far. It is because our biological and physiological evolution has not caught up with the damage we impart on ourselves in our modern age. Our bodies cry for the soil, the root of humanity that is still connected to the earth, while our minds are slaves to technology and artificial intelligence that ignores primal intuition.

I am on a journey to connect with that self that longs for the root. It wasn’t my fault that I got pulled so far away from it, but it is my responsibility to heal myself, to come back to myself. I am a week into a diet of no gluten, soy, corn, eggs, dairy, sugar or caffeine to try to extinguish the fire of inflammation within me. The brain fog has started to lift and I feel like I have my sharp mind back. My body is starting to restore itself to a shape and a look I recognize from years back before I started to feel sick. I could cry thinking about this gradual process of coming home to myself. I know it will be a journey, and certainly not a linear path, but the hope I see and feel already is enough to propel me through a potentially convoluted route if it is one that leads to healing.

Many people – women especially – are living unknowingly with autoimmunity as their doctors, friends and family members fail to validate or recognize their condition. Autoimmunity often presents itself in the form of “invisible” symptoms on the outside, but the symptoms are very real to the individual experiencing them on the inside. Those that it affects could be thriving versus simply surviving.

We all deserve a life in which we simply do what we were meant to do: flourish. I won’t be limited anymore by what someone else tells me that my body is experiencing. I refuse to ignore the messages my body gives me, and I also refuse to stay quiet about my experience when I know for certain that so many other women share my similar story. I know this because the more I share it, the more I hear of others’ stories of physical suffering on a daily basis and having no clue what the cause might be.

We must take our health into our own hands. Tell me, what relationship is more important than the one you have with your body, mind and spirit? What do you have if not your health in all of these entities? How can you overflow from a place that is starved and empty? You simply can’t. So, we must listen to our bodies and fight for them fiercely. Because I’m here to tell you, what you feel is not all in your head. 

Photography credit: Stephanie Pouse

by jklapko

Janie is a new-found creative that has discovered writing as her own form of therapy. She's a holistic health & self-development enthusiast who can usually be found at a coffee shop, listening to a podcast, or experimenting with making "healthy" treats in the kitchen. She often spends time seeking contemplative sources of information that provoke thought and action for a more progressive and spiritually-embodied world. She's passionate about inspiring women to step into their innate power, and is a proud plant mom.

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2 responses to “It’s Not All in Your Head: Living with Autoimmunity

  1. Wow Janie, thank you for sharing your story and encouraging others who may be experiencing these symptoms to seek holistic treatment. You’ve been so resilient through it all and I’m happy that you’re starting to feel better. Your vulnerability is inspiring.

  2. This article will help others!!
    Thank you for your honesty and helpful descriptive experiences. I will be interested in a follow up article-
    I wish you well 🥰

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