Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
I've heard people with Lyme disease say that they wouldn't wish it on their worst enemy, so imagine how devastated I was when I found out a tick had infected my best friend.
It all started with a late summer FaceTime call during COVID-19. My friend, we'll call her Julia, wasn't feeling well and had a consistent low grade fever. She'd been tested for COVID-19 and it was negative. As she was describing what sounded like the "summer flu," all my alarm bells went off.
Sometimes my husband jokingly accuses me of thinking every symptom means someone has Lyme disease. But the reason is because people with Lyme have symptoms in every system of the body. But this felt different. This seemed more like an unmistakable case of Lyme disease. She'd recently stayed in a cabin in the woods in an endemic area. And until COVID-19, it was rare to have flu-like symptoms in the summer.
"You should get tested for Lyme disease," I told her.
With acute symptoms and her location, I hoped the doctors would agree to a simple Western blot test, which they did.
A few days later, Julia sent me a text that she was CDC positive for Lyme disease and offered three weeks of doxycycline.
She never saw a tick. She never had a rash. Had she not asked her doctor for the test, it's unlikely she would've gotten one.
Now that she had a positive test, it was time for action. I knew what was ahead of her if we didn't act quickly: debilitating symptoms and possibly a lifetime of multi-systemic illness.
I knew of a LLMD in her area and encouraged her to reach out to her. Unfortunately, because LLMDs sometimes don't take health insurance the bill would've been a whopping eight hundred dollars for a first appointment. Many of us have paid a lot of money for doctor's appointments, but this seemed outrageous for an acute infection. Instead, we turned to the ILADS provider finder. She was able to locate a Lyme Literate Nurse Practitioner and see her the following week.
From what Julia told me, I gathered this LLNP was knowledgeable and thorough. She elongated her course of antibiotics at least another week and looked for signs of co-infections. The LLNP took a conservative, but balanced approach and I felt she was in the hands of someone who actually understood the ramifications and complexities of this illness.
After reflecting on my high level of worry, I started to worry that I was worrying Julia. The reality was, she was in an acute situation, much different from my long term illness that I have had time to adjust to. This was brand new to her and she was seeing through the lens of my jaded, afflicted eyes. I changed my approach to one of reassurance. There was no evidence that anything bad was going to happen to her and she was in the care of a competent medical professional.
Julia reacted well to the antibiotics and didn't have any significant side effects. Her LLNP encouraged her to be diligent and pay attention to her body following the treatment protocol. If she experienced any achy joints, fever, or any other curious symptoms she should follow up right away.
I hate to think about what would've happened without swift action and a positive Western blot test. As the months passed, the bacteria would've found its way into her tissues and the likelihood of a clear diagnosis and treatment path would've become smaller and smaller.
Instead, this early intervention was what she needed to help her immune system beat Lyme disease. I am confident in her full recovery.
For anyone who has Lyme disease, we are used to the frequent calls and questions about tick bites. There is a lot of misinformation about tick bites and Lyme disease and our lived experience is a trusted source. For better or for worse, people often reach out to us first before even talking to a doctor.
Never underestimate the importance of the knowledge you gain from living with this disease. Because Lyme disease is so common in the United States and all over the world, you can help by recognizing symptoms early on and helping people access the right care. You are the first line of defense against this epidemic.
Personally, I can name three people in my relatively small circle of friends and family that have been diagnosed with Lyme disease. This is not counting the hundreds I know from the Lyme community. This is not a rare disease. This is a pervasive epidemic that is only expanding through climate change and lack of recognition.
For those of us with the chronic ramifications of Lyme disease, I am sorry you didn't have an intervention sooner. I'm sorry that even if you had an early intervention it wasn't the one you or your body needed. I'm sorry that this disease exists and that it has negatively impacted your life.
I think of my own experience and how I went undiagnosed for over 20 years after the tick bite. I think about how I went undiagnosed for 10 years after I started having serious symptoms that any LLMD would have easily identified as Lyme. I think about the ordeal I went through in order to land in a doctor's office who mentioned it could be Lyme and sent me to an LLMD. Now, here I am 30 years after the tick bite, still in treatment, still fighting this stealth infection.
"Health is a crown that the healthy wear, but only the sick can see it." - Imam Shafi’ee
Somatics is the practice of experiencing the internal sensations and signals of the body. Modern psychotherapists recognized this as a way to regulate the nervous system and ease symptoms of mental health issues. This modality is practiced in the right hemisphere of the brain where perception and sensation are located. The left hemisphere is responsible for cognitive processing and sequential thinking. Basically, feeling versus thinking. So much of language is cognitive; however, there are many phrases that speak more to right hemisphere processing than left.
Here are some examples of somatic phrases we use on a regular basis:
1. "Gut Feeling"
We often hear people speak of their gut feeling as a sensation that informs them whether or not to do something. This phrase puts language to what we innately know. That our feelings, not our thoughts are our most attuned guide when making decisions.
The curious thing about a gut feeling is that if we are feeling "dysregulated" (some level of anxious or depressed) we are not as in tune with the feelings of our gut and it becomes more difficult to make decisions.
We can learn to “trust our gut,” by learning to trust our body.
2. "Shouldering the responsibility"
One of the first places people notice muscle tension from the fixed action patterns of the autonomic nervous system is in their shoulders. Often people notice tension in their shoulders when they are carrying too many responsibilities or are feeling responsible for others.
In letting go of some of the responsibility we can allow our shoulders to release.
3. "Heart to heart"
In somatic therapy the space between client and therapist (or any dynamic between two people) is known as the intersubjective field. The magic is that our two hearts are talking without needing to say a word.
In everyday life when we have a "heart to heart: conversation, we are usually referring to a conversation about our feelings. We feel connection in our heart space which allows us to be open and vulnerable with each other. You may even remember leaving a "heart to heart" conversation feeling more connected to the other person.
5. "Having a backbone"
Our backbone is our somatic powerhouse. The back of the body holds what the viscera are not able to hold. As a saying, "having a backbone" means to be strong in your convictions and have the ability to stand up for yourself. In trauma sometimes that ability is lost, but it we can be regained through fostering a connection with our backbone and using it as a source of strength.
6. "Reconnect," "Remember," & "Realign"
Imagine the word as two parts—"re-connect,” "re-member," "re-align." To remember who you are is to come back to your body. Reconnecting and realigning with your whole self—mind and body. All these words have a deeper meaning if you associate it with body.
Again imagine the word as two parts—"in-sight." To look within. In therapy, I often ask if there is any "insight" into the issue at hand. This is a powerful word that can evoke a meaningful response.
What insights do you have about your somatic (physiological rather than psychological) experience?
These phrases didn't come about by chance. They arose through the right hemisphere of perception. We also understand them, because we have an awareness of these feelings. It is the way in which we are all connected. Each of our lives is made up of different experiences, but it is our shared sense of interconnectedness that bonds us together.
"The human body is not an instrument to be used, but a realm of one's being to be experienced, explored, enriched, and, thereby, educated." - Thomas Hanna
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.