Life With Lyme
“I wish I could show you, When you are lonely or in darkness, The astonishing light of your own being.” – Hafiz
I’m Not an Expert on Lyme Disease
I want to clarify that I am not an expert on Lyme disease, and I’m not offering medical advice. I don't possess the latest knowledge about Lyme disease and its growing number of associated co-infections. What I do have is my life experience with the disease and my hard-earned and ever-evolving personal perspective on life with Lyme. I share my personal experience here and what has worked for me. So, please keep in mind that from my perspective, you are the one who knows yourself best, and I believe your path to healing starts with the choices you make about your role in recovery. How do you relate to the condition? Personally, I have tried many different approaches, traditional Western methods, such as antibiotics and a strict anti-inflammatory diet (this was a big win for me health-wise, but difficult to sustain). I stumbled upon the benefits of meditation, I have worked with Integrative Medicine practitioners, had a regime of a shocking number of daily supplements, used a PEMF system, you get the point. I have approached this from many different angles!
Getting a Diagnosis
My diagnosis of Lyme was in September of 2002. What followed was first, relief that it wasn’t all in my head, then fear, and then I created a story about what it meant to be a person with Lyme disease, which became my story for a long time. For some time I defined myself by my diagnosis. Most days I felt unwell with some some okay days sprinkled in. The symptoms of Lyme Disease can be debilitating, efforts to get help can be frustrating. Finding a practitioner who has a nuanced and solid understanding of how to approach Lyme and often the treatments recommended are stupid-expensive and often not [fully] covered by health insurance. I was told more than once that my symptoms were psychosomatic, or that I was “merely” depressed. My insomnia, profound fatigue, frizzy hair, hair loss, non-functioning thyroid, nearly opaque brain-fog, aches and pains, sensitivity to sound–I honestly can’t remember all of my symptoms–were hardly psychosomatic. Simply stated: I felt like shit. At one point, my endocrinologist told me that having just had a child, I was supposed to feel like shit–um, NO. All this to say, it can take years to get a diagnosis. And, frankly, it’s a crap-shoot trying to get help. You are your best source for care.
Functioning Mostly, Occasionally I feel great!
By the time I got a diagnosis, I’d likely already been host to Lyme for years. I still don’t know with any certainty if I’m currently suffering from Lyme and if it’s possible to overcome the condition or simply manage it. Let’s just say I’m functioning for the most part. And when I’m truly taking care of myself, nourishing myself with the food my body needs, the exercise my body benefits from, working my gray and white matter, connecting to nature, and engaging in community, well, that’s when I feel more than just functioning. I feel great. And I believe it’s possible for you to feel great, too.
I Would Change My Approach if I Were Diagnosed Today
A big shift in my experience happened when a friend said to me, “You don’t have to identify with your disease.” What a concept. Such an insightful, off-the-cuff comment from a friend who was living a full life with an autoimmune disease. Her full life was not the life she may have lived without her autoimmune disease, but it was undeniably a full life.
Today, I have a different understanding of wellness and health than when I got the Lyme diagnosis. Over time, my understanding of wellness and health has significantly evolved. Hopefully, this is a sign of wisdom. My perspective on being a person with Lyme has also evolved. My ideas about being a human are more fluid and less rigid. I understand that I need to be open and curious as I approach life. In fact, the more rigid my thinking gets, the more my body responds with signals from my long list of symptoms. Is it beginning to sound like some of my symptoms were in my head? It’s more complex than that. Our culture perceives well-being as a lack of pathology. This is problematic if you begin to examine well-being on a spectrum that is not a fixed state of being but a responsive or reactive state of your mind and body. Our mind and body operate as one, each responding to the conditions of the other. A little dance, we are always in the process of learning new steps–hopefully.
Better Understanding The Nervous System
Here’s where I wish I began my Lessons in Living with Lyme: The Polyvagal Theory of the Nervous System. I’m going to recommend a few books here by experts, this is such important information for anyone with a body! I had so many aha moments reading these books. Those aha moments became shifts in my understanding of what it means to be me, how my system became what I understood to be me, and how I could evolve and have more influence over my system, make more conscious choices about who and how I want to be.
The first book is Steven Porges’s book, The Polyvagal Theory: Neurophysiological Foundations of Emotions, Attachment, Communication, and Self-Regulation. If you are really into medical books and have a good foundational understanding of the human system this is a fantastic book. Personally, I don’t have those foundational understandings and needed something more relatable. Enter: Deb Dana. Her most recent book as of this writing is Polyvagal Practices: Anchoring the Self in Safety. I was fortunate to be introduced to Deb Dana through Gabor Maté’s Compassionate Inquiry training. She gave a workshop on Polyvagal Practices to my CI cohort. Deb Dana brings the incredibly complex theory down to earth and makes it understandable and relatable. Another book I got a lot from is Amanda Blake’s Your Body is Your Brain: Leverage Your Somatic Intelligence to Find Purpose, Build Resilience, Deepen Relationships and Lead More Powerfully. In this book, she shares some of her clients’ stories of overcoming challenges that seem insurmountable by allowing themselves to truly experience their feelings without judgment (sound simple? It isn’t). My companion recommendation for Amanda Blake’s book is Bessel van der Kolk’s The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. All four of these books come from research-based scientific studies. You will find real information in them about how the human system works, and from that information, you will begin to put together a picture of how your human system works. Knowledge is power!
Why Begin With the Nervous System?
Fight, flight, freeze, or ease. The state of your nervous system is not in any way, on any given day static. You are a responsive organism, even when you are not conscious of this, your system is constantly assessing your environment for threats. The nervous system starts this important job of seeking and assessing threats the moment we are born. And our system begins keeping score right away. From birth to age three, humans use the nervous system of their caregiver(s). I can say with certainty that my human caregivers, from when I was born to when I “launched,” suffered from anxiety and depression, not to mention the myriad self-limiting beliefs they held for themselves. All this to say, the nervous systems I was using beginning in infancy were usually in a state of fight, flight, or freeze, almost never at ease or homeostasis. There is no blame here, I just recognize that my nervous system has some implicit habits that make my human organism a challenge to regulate.
The Enteric Nervous System
The ENS has been studied in depth for a mere 40 years, offering new insights into the human organism regularly. In my opinion, this system is where you will be able to have the most influence most immediately. Your digestive tract has its own nervous system, called the enteric nervous system (ENS). It has been called the “second brain.” However, according to Dr. Emeran Mayer, evolutionarily speaking, it was the first brain to develop. I came across Dr. Emeran Mayer while listening to the Mind & Life podcast. I will write more extensively on the ENS in a separate post. In the meantime, know that the food you eat can both cause harm and heal you. And you probably know instinctively when you eat something if your body is appreciative or not. Start paying attention to what you eat and drink and how it makes you feel.
Mindfulness
The practice of mindfulness has been transformational for me. It is impossible to say how much and what exactly this practice has done to my nervous system, my perception of myself and the world, and my relationships. However, I have an inkling that it was what made it possible for me to change my relationship with myself. Mindfulness made it possible for me to release self-judgment and eventually learn to experience and offer compassion. Mindfulness is not limited to the meditation cushion, in fact, you don’t even have to meditate to be mindful. Just start paying attention, without judgment, to everything. Start with interoception, the sensations within your body. Can you experience them without assigning judgment or meaning?
