A Year of Learning with Autoimmunity
Autoimmunime 2024 Recap
On the first day of 2024, I started the Autoimmune Protocol (AIP) diet. Now, a year later, I reflect on all that I learned and realized about myself and autoimmunity in 2024.
Introduction: A Journal of Autoimmunity
This is Auto-Immuni(me), a young woman’s journal of facing autoimmunity and learning to navigate the many changes it demands but also invites. This journal series is in part a record for my own self of all that I learn and experience as I go through autoimmunity without pharmaceutical immunosuppressants nor NSAIDs (non-steroidal anti-inflammatory drugs) and learn to control what I can of my own symptoms and health through how I live and what I eat.
But I also create and share this journal series for any woman who has found herself with a body experiencing autoimmunity, and has felt fear or shock thinking of what that could mean. You are not alone!
A Personal Note: Who I Am and My Journey
To be clear, I am not a doctor or medical professional! I am a yoga teacher, corn farmer, paralegal, herbalist, and horsewoman (forget cowgirls). I live an active life in which I wear many hats and often find my days full of a variety of activities—from mucking the barn to preparing a legal declaration, designing a yoga sequence, and propagating plants. My life is full of activities that I love and activities that the years I spent in pain almost stopped me from doing.
I now live as an n=1, inspired by Dr. Sara Gottfried’s research on autoimmune disease, where my body is my own experiment. Observing its reactions and feedback to different lifestyle stimuli and inputs helps guide me step by step towards health and freedom.
Autoimmunity: More Common Than We Realize
Autoimmunity is much more common than we tend to realize, and predominantly impacts women. Studies find that 1 in 4 women in the United States have some kind of autoimmune condition (there are about 80 different ones).
That said, I think ourselves and each other are some of our greatest tools for trudging through the mess of half-witted rheumatologists, delayed bloodwork, vague diagnoses, and recommendations that make you wonder if your doctor was even listening. Of course, we all hopefully will eventually land in the office of a helpful healthcare professional who can provide us with the answers and guidance that we need. But we must admit that when it comes to autoimmunity, this can be very difficult to achieve, and often takes years before receiving a concrete diagnosis, as we tread through the fog of what functional medicine calls “pre-disease.”
2024: Pursuing My Graduate Studies Amid Autoimmunity
This year I didn’t let my autoimmunity keep me from starting graduate school. The AIP diet helped me feel my best to perform my best in my studies.
Living with Autoimmunity: Walking Blindly
Living with autoimmunity or “pre-disease” often feels like walking blindly with your hands stretched out before you. You want to be safe and careful. You don’t want to feel pain again. You don’t want to live life enslaved or controlled by your symptoms. But you may not have the professional guidance or personal vision you need to make the progress you desire.
Without our sight in this scenario, our other senses become more fine-tuned to our surroundings. Over time, with attention, awareness, and practice, we may become hyper-aware of things we used to ignore from our own bodies and the signals they give us. Gradually, we are able to walk without seeing, relying on the information the body provides us moment by moment.
This year I started focusing on nutrient density in my diet by trying to include a variety of fruits and/or vegetables in all of my meals.
What I Learned in 2024: Key Insights from My Autoimmune Journey
Relying on information from my body was definitive for me in 2024. Some of the main things I learned include:
1. Learning to Recognize an Array of Symptoms
With the AIP diet, I had hopes of managing my pain, and within a couple of weeks, not only had my chronic joint pain dissipated, but I also felt a new mental clarity and lightness of being that made me feel something like a superhero.
Upon cutting all potentially inflammatory foods out of my diet, I was able to recognize other ways my autoimmunity had been impacting me and my life, ways that I had not yet realized, like:
Brain Fog: Although I suffered from this for bursts of time ranging from days to months before learning about my own autoimmunity, I had always just reasoned it away, typically blaming myself for not getting enough sleep the night before, crashing from being caffeinated, or feeling under-caffeinated. For so long, I could not recognize that what I was experiencing was brain fog caused by inflammation because I was still understanding inflammation as something that was happening more in my joints than something that may be happening all over my body.
Mood: Some foods eliminated on the AIP diet, when reintroduced, may not cause my familiar joint pain to come back, but they can still impact my mood. I found my mood to be particularly impacted by gluten, which doesn’t explicitly bring back my joint pain, but after consuming gluten, I begin to feel a headache within several minutes and often feel my mood plummet despite being happy in the context in which I have consumed it. It brings about a sense of exhaustion, irritability, and heaviness for me.
Libido: I have not dug as much into the research on this one but was told by a functional medicine practitioner that libido tends to be impacted by autoimmunity in women. Being intimately bound with our sense of energy levels, tiredness, and self-image, it makes sense that libido may fluctuate negatively when autoimmune symptoms flare. However, to catch it requires distancing from negative self-talk that our culture has conditioned us to lean on when we experience lesser libido than we are used to.
New Habit: This year, I built the habit of snacking on whole fruits like mango, avocado, and coconut, instead of processed foods.
2. Everything Is Information
Once I developed a heightened sense of my own body through first recognizing how amazing I felt after a few weeks on the AIP diet, I was able to better (but not perfectly) gauge how different variables affected me.
Food Sensitivities: Sometimes the effects of a food I tried to reintroduce would be subtle and hard to pinpoint until the third day I would try it. Other times, the effect was extremely acute, with my long-lost joint pain returning in a matter of minutes just after consuming a bite of something.
Tracking Symptoms: It can certainly be exhausting to try to follow and stay with yourself through the unending ups and downs of autoimmunity and the dietary changes it requires, but I consistently found comfort in one thought: that everything is information.
New Focus: This year, I started focusing on nutrient density in my diet by trying to include a variety of fruits and/or vegetables in all of my meals.
3. Remission & Flare
Before this year, I knew what these words meant generally speaking, but I had never experienced them in my body. Throughout 2024, I had about 3 periods of time where it seemed my symptoms had gone into remission (See Auto-immunime.3). It was amazing to feel liberated from having to worry so much about certain things I was eating or drinking and to live without the pain or more subtle symptoms I had become used to having to accommodate.
Remission: The difficult aspect of symptom remission (when your symptoms suddenly go away) is that it can be pretty random and there’s not always something you can explicitly do to bring it about. However, there is ample research that provides insight into some of the things we can do to put our symptoms into remission or even reverse autoimmune disease.
Flares: The opposite of remission is a flare, or when your symptoms are suddenly worse, or sometimes much worse. When I have had flares in my autoimmune symptoms, they often look like not being able to walk without limping, because of the pain in my hips, experiencing my body’s regular patterns of digestion in complete disarray, and feeling bloated and exhausted despite sleeping.
First Hand Example of Autoimmune Symptom Remission
In 2024, I walked a piece of the Camino de Santiago with one of my best friends. My autoimmune symptoms went into remission after walking 90km in four days. For a little over a week after this experience I had no autoimmune symptoms whatsoever and was able to enjoy foods that normally would induce inflammation for me.
4. The Unmatched Power of Sleep
Sleep has proven to be one of the most healing practices available to help overcome the struggles brought on by my autoimmune symptoms.
Sleep Debt: Despite common disbelief, sleep debt is real. When we don’t get the sleep our bodies need, we may continue to struggle cognitively, physically, and emotionally until we catch up. During sleep, our body gets to work healing and restoring itself.
My Magic Number: I have found my magic number of hours for living my best day-to-day life is 9 hours of sleep. Every now and then, when there is time to indulge—especially if I find myself with hours of sleep debt from a busy week—I may organize to sleep for 10-12 hours. Upon waking from those nights, I feel like a true superhero, my mood is vibrant and energized, as if I have been reborn.
Sleep Hygiene: Making sure I get enough sleep is so important to controlling my autoimmune symptoms. It is a practice that helps me love myself!
5. Letting Go of My Timeline
With autoimmunity, like many things in life, it is important to completely let go of our timelines and expectations. We don’t want to set ourselves up for disappointment just because we imagined something would happen sooner than it actually does or that something would be easier than it actually ended up being.
Non-linear Progress: I found that when I was seeing my AIP reintroduction linearly as a goal I wanted to reach as soon as possible, I caused myself stress when things were not playing out as I wished for them to. Shifting my mindset to see my autoimmunity and my path with the AIP diet as a non-linear, complex, and important experience and reality that I am navigating helped me stop worrying about things I cannot control with my own autoimmunity and to focus on the many things that I can.
Practical Tip: I use a sombrero on sunny afternoons to avoid too much sun exposure, which can trigger autoimmune symptoms.
Final Thoughts: Reflection on the Year
Although the entire year was full of learning through gathering information from my own body, applying it, and waiting to see results, these five things were the defining epiphanies. This information is entirely based on personal experience and is not intended to offer medical or psychological advice or expertise.
I hope after reading, you feel a renewed sense of clarity and commitment to your own health journey. Always remember, you are not alone! Leave a comment below to share what you have learned through autoimmunity and how it has impacted your life.
Take care & be well,
Lex of the jungle XO
