When the Pain of Lyme Becomes the Power to Heal

Beating chronic Lyme Disease, Bartonella and Babesia is about so much more than treatments. I’m headed into the sixth year of this journey, and I can honestly say I’m doing everything. Herbals, detoxes, lifestyle and diet changes, antibiotics, anti-fungals, anti-malarials, the list goes on. The thing very few people talk about is the emotional trauma of these diseases.

I’m not just talking about the well-known psychiatric symptoms of lyme disease — and even more importantly, the debilitating and uncontrollable anxiety, depression and panic attacks caused by bartonella, babesia, mycoplasma, gastro-intestinal disorders, and systemic parasites. These are very real, sadly misunderstood neurological symptoms of these diseases that cannot be calmed by psychiatric medications.

These symptoms are terrible, but what has caused me so much pain and emptiness in this season of lyme goes beyond the physical and neurological. It has been a long and lonely journey. When I first became sick, my husband and I were still working to build a life and community in a new city after a cross-country move. As a result, all our closest friends lived long distance, and our local support system was nearly nonexistent.

It takes time and effort to build a deep safe community in adulthood. Add a physically exhausting chronic illness to the mix, and it’s even more of a challenge. That being said, once I regained basic mobility, we’ve worked hard to have a social life.

Fighting a chronic illness is an isolating experience even when surrounded by people. There are some things that only those fighting the same war can ever understand. In my battle with tick-borne diseases, the worst part of it has been how these illnesses amplify past emotional damage.

Life is hard when you’re healthy, but what people fail to acknowledge is that when chronic illness strikes, the other challenges of life don’t take a vacation.

Over the past four years, I’ve found that the emotional symptoms of bartonella and babesia serve to trigger the old pain of attachment disorder, and all its relational fears of abandonment. This has been further complicated by experiencing the loss of several of my closest friends in the course of this illness.

In monitoring my physical health, I discovered that the fears and patterns of emotional symptoms follow my herxeimer cycle. Things that trigger me when I’m killing off bartonella don’t even phase me once the herx has passed. To the best of my understanding, my brain becomes confused by the infections and excessive release of toxins into the brain and GI tract. My brain is aware that I’m experiencing severe anxiety, but it can’t find a typical cognitive behavioral pattern of interactions triggering thoughts that lead to emotions. I believe that in an effort to make logical sense of the sensations, the brain looks for a source, and so reverts to the oldest pattern of neurological firing that matches the intensity of the emotions being experienced.

In my case, this is relational stress stemming from attachment disorder. My theory since initially writing this has been since confirmed, as with specific intense antibiotic treatment, I lost all traces of relational fear, depression, insecurity, and anxiety for six months in 2020. Unfortunately, during recent courses of treatment for parasites, the same intense mood swings and fears have suddenly returned.

This is incredibly hard for me to tolerate as I tend to judge myself harshly for still struggling with old wounds I had thought I’d made greater progress in healing through years of therapy and mindfulness exercises. Beyond that, it hinders my ability to trust others and go deeper in the relationships I’m still working to build. People are one of my deepest passions in life, and maintaining a consistent circle of close relationships is paramount to me.

How do you tell people you’re still getting to know that — through little to no fault of their own — you have weeks, months, or even years of illogical uncontrollable fear of them? That is a level of vulnerability I don’t know how to explain. I have tried, but it does not seem to be easily understood or received.

Healing attachment disorder requires a structured environment of consistent emotional safety…and the life of a lyme warrior is full of unpredictable emotions and physical challenges. As waves of bartonella, babesia, or any other infection or toxins flood my nervous system, I combat the urge to perform a paranoid scan of my relationships. Every tonal shift, delayed response, inconsistency, or cancellation rings alarm bells of intense fear for me. I can become paralyzed in excruciating waves of inconsolable crying or panic for days if even one person breaks their usual pattern of communications.

The thing is, healing from attachment disorder is about more than surrounding myself with safe people. It also means learning to be safe myself, both in thought and action. Having a chronic illness is not an excuse to let past emotional trauma control my behavior. The last thing I want to do is to hurt others by reacting to my own personal pain. Now that I know for a fact that these intense emotional reactions to relationships is largely due to the diseases, I take this even more seriously than ever.

These diseases have taken my body, my mind, my career, and many of my relationships…and I’ve fought tooth and nail to reclaim it all. Enduring lyme and co-infections is a long lonely gritty battle. The greatest victory is won when we learn to flip the narrative. For me, beating lyme isn’t just about being cured. It’s about learning to take what is trying to destroy me and transform it into an opportunity to grow stronger and heal more wounds than were inflicted in this season.

Instead of giving up and running as my old emotional wounds are triggered, I choose to see it as an opportunity to go deeper in the healing, face my fears head on, and work on this part of my life in a way I never have before. In staring down disease-induced attachment disorder, standing firm and refusing to lash out or run away, I’m learning how to set healthy boundaries — both by saying no to unhealthy requests or behaviors, and in learning that I’m allowed to express and enforce my own needs and boundaries in all areas of any kind of relationship.

I’m also learning which inconsistent patterns in relationships are toxic, and which are not. There are only two things that have ever helped to alleviate the emotional flares — temporary relief from positive consistent contact with the person inducing the trigger, or I have more permanent long-term relief found by alleviating the infectious or toxic cause.

Every day is an internal exercise. When the herx rises and my mind is flooded with spontaneous panic and obsessive thoughts, when my chest pools with the tight frantic energy of anxiety, I fight to step outside myself and become an observer. Regardless of the source, emotions can be powerful and consuming forces — if we choose to embody them. As overwhelming as emotions are, they do not define us, nor do they define reality. As much as it burns like fire, until the herx lifts, I punch back in my mind and refuse to listen to the emotions screaming inside. In this way, emotions can become a wave washing through me, revealing the wounds within and empowering me with the choice to engage…or change the script.

I firmly believe there is no experience of mental illness that cannot be beaten, and there is no circumstance in which neurological overload can ever be used as an excuse for being unloving or inattentive to any of our relationships. We have a responsibility to learn how to live in such a way that keeps us balanced physically and emotionally despite whatever condition we may face. Beating bartonella and lambasting lyme is about a mindset…a perspective shift.

When I use my battle with lyme as a tool to heal old wounds, it steals its power over me. Every day I can choose to shift from seeing myself as suffering from a disease, to viewing the experience as one of a spiritual and emotional boot camp. The anchors of emotional pain that arise can weigh me down, or become the weight that builds the strength necessary to lift myself up and out of the bondage of emotional chains.

I am by no means a master at this daily process of internal self-care, but it’s a part of my lyme story. That which we don’t voice has the power to hold us captive. When the night is long and the sun fails to rise, we can transform pain into power, and the mess into a message. When we share our struggles with others, we often find that it heals a piece of our souls.

Though I hid this part of my story for years, I will share it now. This is part of my fight to take back control of my own life and relationships. I may not be the only person who is having this pseudo-psychiatric experience from tick-borne disease, but I am one of the very few who is actually willing to speak openly and honestly about it. No one should ever be judged or pushed away for struggling with emotional things that are not from their own choice, nor of their own biology.

We can never change or heal the suffering of the world if no one is willing to fight for the truth. We truly must live out the love, authenticity, and compassion that we ourselves need so badly. Speak the truth, share your story, and fight on warriors.

Thank you for reading and engaging with my story. I invite you to follow my writing here, and share these words in the hope that they may reach those who need to hear them.

Poet, aspiring writer, passionate advocate for emotional intelligence, avid nerd and Lyme warrior.