My Personal Journey Through Autoimmunity, Trauma, and the Path to Holistic Healing

In 2011, I believed a partial hysterectomy would be the turning point in a long struggle with debilitating symptoms: crushing fatigue, persistent swelling, unexplained pain, rashes, and disruptive gastrointestinal issues, often accompanied by nausea. I imagined a future free from these burdens. Instead, my symptoms intensified, catapulting me into a medical odyssey that would span years and unveil a profound connection between my physical ailments and a history of unaddressed trauma.

My initial post-surgery path led me to my OB/GYN, who, observing my worsening condition, referred me to a rheumatologist. The diagnosis was fibromyalgia, though my blood work, at the time, was deemed "normal." Yet, my body continued its relentless protest. The increasing severity of my issues sent me back to my primary care physician (PCP), who then directed me to a neurologist.

It was during an MRI, ordered by the neurologist, that a startling truth emerged: I had sustained several traumatic brain injuries (TBIs) throughout my life. The neurologist, however, couldn't definitively link these TBIs to my current physical symptoms, stating, with a somber truth, that such a connection could only be fully understood posthumously.

The journey continued with my PCP suggesting a sleep disorder specialist, given my profound sleep disturbances. Multiple sleep tests revealed a critical absence of REM sleep. After exhausting her diagnostic avenues, the sleep specialist referred me to a psychiatrist.

This is where my path took a deeply misguided turn. I was wrongfully diagnosed with bipolar disorder. I had never experienced a manic episode; my "mania" was, in reality, extreme sleep deprivation, a common mimic of manic symptoms. While I had a long history of depression, the possibility of major depressive disorder coupled with generalized anxiety disorder was overlooked. Instead, I was prescribed a cocktail of medications that profoundly disrupted my life, leading to terrifying nocturnal hallucinations of figures standing over me.

The unfortunate reality of psychiatric diagnosis is its sticky nature. Once labeled, it can be incredibly challenging to shed, even with new practitioners. For years, I was passed from psychiatrist to psychiatrist, the bipolar diagnosis clinging to me like a shadow. It wasn't until I found a truly phenomenal psychiatrist, one who specialized in trauma, that the truth began to unravel. Finally, I received accurate diagnoses: PTSD, major depressive disorder, and generalized anxiety disorder.

Despite these breakthroughs, the physical symptoms persisted. Over the years, I've consulted a seemingly endless list of specialists: pulmonologists, neurologists, nephrologists, urologists, cardiologists, ENT doctors, OB/GYNs, podiatrists—you name it. I've accumulated diagnoses for numerous autoimmune disorders, each adding another layer to the complex tapestry of my health.

For the past decade, I've immersed myself in extensive research exploring the undeniable link between trauma and autoimmune conditions. The evidence is compelling, yet most medical professionals remain untrained in trauma-informed care.

A comprehensive trauma history, encompassing physical, mental, emotional, and psychological experiences, is rarely taken. This crucial assessment could unlock profound insights, guiding doctors toward more effective healing paths. However, my experience has often been one where the focus shifts from finding a cure or an end-goal solution to merely managing symptoms—a sustainable model for medical practices, perhaps, but not for genuine healing.

Embracing a Holistic Approach to Autoimmunity

My journey has led me to believe that true healing from autoimmune issues necessitates a holistic perspective. Here are some key strategies I've found invaluable:

1. Understanding and Balancing the Vagus Nerve System: The vagus nerve is a critical component of our autonomic nervous system, influencing everything from heart rate and digestion to mood and immune response. Trauma can dysregulate this system, contributing to chronic inflammation and autoimmune flares. Learning about its function and engaging in practices that stimulate and balance it—like deep, slow breathing, cold exposure, humming, and gargling—can be profoundly beneficial.

2. The Power of Meditation, Mindfulness, and Quieting the Mind: Our minds, constantly racing with thoughts and worries, can exacerbate stress responses that fuel autoimmune activity. Meditation and mindfulness practices create space for self-awareness, reduce cortisol levels, and promote a sense of calm. These practices help us disengage from the anxious chatter and reconnect with our bodies' innate wisdom.

3. Honoring Your Energy and Setting Strong Boundaries: Living with autoimmune conditions means your energy reserves are often finite and unpredictable. It’s essential to recognize that you may need to live life differently than others. This involves diligently investigating what works for your body, honoring its needs, and setting robust boundaries to protect your well-being. This might mean saying "no" to social engagements, prioritizing rest, or adjusting your daily routines. This approach may not be understood or agreeable to everyone in your life, but remember, they do not walk in your shoes. You owe no one an explanation for doing what is best for you.

My journey has been long and arduous, marked by misdiagnoses and a system often ill-equipped to address the intricate interplay of mind, body, and trauma. However, by embracing a holistic approach, finding the right medical professionals who want to partner with me to find solutions and becoming my own advocate, I am slowly but surely reclaiming my health and finding a path toward greater well-being.

References:

1. Trauma and Autoimmune Disease:

• Dube, S. R., Anda, R. F., Felitti, V. J., Edwards, V. J., & Croft, J. B. (2009). Adverse childhood experiences and the risk of autoimmune disease. Psychosomatic Medicine, 71(5), 578-586.

• Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., & Koss, M. P. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14(4), 245-258.

• van der Kolk, B. A. (2014). The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. Viking.

2. Vagus Nerve and Nervous System Balance:

• Porges, S. W. (2011). The Polyvagal Theory: Neurophysiological Foundations of Emotions, Attachment, Communication, and Self-regulation. W. W. Norton & Company.

• Kok, B. E., Coffey, K. A., Cohn, M. A., Catalino, L. M., Vacharkulksemsuk, L., Fredrickson, B. L., & Algoe, S. B. (2013). How positive emotions build physical health: Perceived positive social connections account for the upward spiral between positive emotions and vagal tone. Psychological Science, 24(7), 1123-1132.

• Gerritsen, R. J. S., & Band, G. P. H. (2018). Meditation, mindfulness, and emotional arousal: A review of the effects of meditation on the autonomic nervous system. Psychology Research and Behavior Management, 11, 165–181.

3. Holistic Health and Autoimmunity:

• Myers, A. (2019). The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases. HarperOne.

• Weil, A. (2004). Spontaneous Healing: How to Discover and Enhance Your Body's Natural Ability to Maintain and Heal Itself. Knopf.

• The Institute for Functional Medicine. (n.d.). Functional Medicine for Autoimmune Disease.

©Lisa King, LPC