Lyme Disease + Mental Health: Ways to Improve It from a Lyme-Literate Therapist
by Jenny Lelwica Buttaccio
Since she was a child, Kerry J. Heckman, LICSW, Clinical Social Worker, has dealt with Lyme disease in some capacity. Growing up in Minnesota in the 80s and 90s, she assumed tick bites were a normal part of everyday life. From a young age, she experienced bouts of depression and anxiety, but she never considered they could be the result of tick-borne infections.
In her early 20s, Kerry developed chronic pain throughout her body, including her hips, back, and shoulders. In her late 20s, she was diagnosed with Grave’s disease, an autoimmune thyroid condition where the thyroid gland produces too much thyroid hormone.
By the time Kerry was in her early 30s, her ability to function from one day to the next gradually came to a halt. She had symptoms like night sweats, chills, headaches, insomnia, dysautonomia, and severe pain. Despite seeing several doctors over a year and a half, she was left with few answers and mounting pain levels. Eventually, she had imaging done, and the results were surprising: Kerry had what looked to be an infection in her spine.
The emotional and physical stress of managing an unnamed illness intensified, and she had to leave her job as a school social worker. With her treatment options dwindling, Kerry turned to integrative medicine for answers. At the suggestion of her new doctor, she received a Lyme test through Igenex, and shortly after that, she was diagnosed with Lyme disease and the coinfection bartonella, which turned out to be the infection in her spine.
After a five-year journey to regain her health, Kerry is still trying to peel back the layers of chronic Lyme disease, but she functions well most days, living a full life and heading up a private therapy practice in West Seattle. She considers herself a somatic psychotherapist, where she uses a mind-body approach to therapy, healing trauma, and improving nervous system dysregulation from the heightened flight-or-fight response that many chronically ill patients experience. She has used this type of inner work to improve her health on a personal level, and now, she’s seeing results in other clients with Lyme disease as well.
Recently, we talked with Kerry about the effects of trauma, especially medical trauma endured by many patients as they try to navigate the healthcare system and nervous system dysregulation in Lyme disease. Here’s what she had to say — and how simple exercises can help you “unstick” your nervous system and experience a greater sense of calm and wellbeing no matter what the source of the trauma.
RawlsMD (RMD): You mentioned you’re a somatic psychotherapist. How does your approach differ from, say, a traditional talk therapist? And who would benefit from somatic therapy?
Kerry J. Heckman (KH): Somatic psychotherapy uses a bottom-up approach rather than the top-down approach of traditional talk therapy. Other terms for this modality are “body-based psychotherapy” or “right hemisphere psychotherapy.” We use the body to change our thoughts instead of changing the thoughts to change how we feel in the body.
People who benefit from body-based therapy are those who know they have dysregulation in the nervous system and want to find ways to regulate it. Somatic work uses sensations experienced in the body to better understand the cumulative effect of trauma on the nervous system. The interventions primarily focus on the right hemisphere (the creative side of the brain). So, instead of inquiring about how a person thinks about something that happened to them, we might ask what a person is noticing in the body as they are talking about it. Then, we use experiential right-hemisphere processing — movement, the senses, sound, imagery, coloring — to help the body return to its natural, regulated state.
RMD: From your viewpoint, what are some of the more common mental health challenges and problems among Lyme patients?
KH: Trauma, specifically medical trauma, is a major concern and talked about a lot among the Lyme community. I define trauma as anything that causes chronic dysregulation in the nervous system, which shows up as anxiety, depression, bipolar disorder, and other mental health issues.
We often associate trauma with abuse and neglect and traumatic events, but there are limitless ways the nervous system goes into chronic disarray. Some of those reasons include the medical trauma I mentioned but also:
- Chronic stress
- Environmental trauma
- Intergenerational trauma
- Prenatal trauma
- Birth trauma
- Developmental trauma
- Racialized trauma
- Vicarious trauma
Lyme doesn’t discriminate, and neither does trauma, so people with Lyme are likely to have experienced other trauma in the past, too. People with Lyme also have a lot of issues in relationships and are in a constant grieving process for the life that could have been.
RMD: You mentioned medical trauma as a type of trauma Lyme patients have exposure to. In what ways do you feel it impacts healing?
KH: I think the biggest issue related to medical trauma is broken trust. Medical professionals are supposed to help us, and we put our trust in their knowledge and ability to empathize. When that trust is breached due to denying our diagnosis, it makes it difficult to trust others in the medical profession.
The symptoms of chronic Lyme are often dismissed compared to other chronic illnesses. In mental health, we use the term “gaslighting” a lot, which is when a person or a doctor makes you feel like your reality isn’t real. In turn, it makes you question yourself and everything you know to be true. Gaslighting of Lyme patients is a big cause of medical trauma. Plus, there are studies on how trusting doctor-patient relationships actually benefit outcomes, so people with Lyme are often robbed of that opportunity.
RMD: Does every patient have some degree of trauma? And is it crucial to deal with it to fully heal from Lyme?
KH: In my opinion, yes. If we consider a chronic infection an “environmental trauma,” by definition, everyone who has Lyme disease has had some impact on the nervous system. A bacteria from the environment attacks the brain and nervous system and causes it to stop functioning properly. Then, we add on all the other causes of trauma, and it’s unlikely that any Lyme patient has escaped it.
I believe it is crucial to regulate the nervous system to recover from Lyme disease. Think of the nervous system as the mastermind of the body. If we can regulate the nervous system, there are benefits in every other system: the immune system, the endocrine system, the reproductive system, the musculoskeletal system, all of which are affected in one way or another by Lyme.
But the good news is that we can think of nervous system regulation as a continuum — not as something with a beginning and an end. Anything we can do to regulate the nervous system is beneficial; we don’t have to heal the nervous system completely for there to be benefits.
RMD: How might someone know they are experiencing trauma? What might they notice in how they think, act, or behave?
KH: Think of trauma like a lens through which you view the world. If your body is in a chronic state of stress, then everything feels scary. It is often accompanied by uncomfortable body sensations. You may notice this as nausea, internal vibrations, heart palpitations, brain fog, muscle tension, collapsed posture, lack of appetite, being hungry all the time, or a pit in your stomach.
Each person will experience it differently. You may notice a deep impact on the way you think, as your thoughts are a product of your neural state. When you are regulated, you may be able to see the reality of a situation. When you are dysregulated, you might start ruminating on the worst-case scenario or seeing everything, including yourself, as bad and wrong. Once your nervous system becomes chronically dysregulated, you develop a relatively small window of comfort, and small triggers can push you outside of your comfort zone very easily.
If the nervous system can become regulated through processing trauma and Lyme disease treatment, you’re able to live your life mostly in a calm, vital state. Nervous system work is the process of widening the window of comfort. Fewer situations will trigger the nervous system. When bad things happen, as they inevitably do in life, you’re in a much better position to move through it.
It is really important to remember that none of this is your fault and the nervous system, even with Lyme disease, is changeable. You can rewire the nervous system. It’s a long road, but it is possible to become more regulated.
RMD: Can you offer some coping strategies that help people deal with the trauma they’ve endured?
KH: Think of coping strategies in two categories: Some coping strategies help our nervous system, and other coping strategies help our neural state. Our nervous system holds the cumulative effect of trauma in the body; our neural state arises from our nervous system but shifts from moment to moment.
More traditional coping strategies, such as going for a walk, meditation, taking a bath, talking to a friend, and listening to music, help rewire your nervous system toward regulation. Our nervous system craves connection and activities that help us feel calmer or alive, so it’s good to know what you already do that makes you feel calm or alive. You can amplify the effects of your coping strategies by noticing how you feel in those moments and bringing your awareness to the sensations in your body. Do you feel tingly? Energized? Clear-headed? Warm? Connected?
However, I often hear people looking for strategies for when they’re actively feeling anxious or depressed. For these moments, I encourage people to think smaller. This is where we need our neural state coping strategies — things to move us from outside of our comfort zone back in the direction of optimal arousal — that place where we can feel a greater sense of ease and wellbeing.
Breathwork is a good option for some. The lungs are the only part of our autonomic nervous system that you can control. If you breathe out for a longer amount of time than you breathe in, it sends a signal from your lungs to your heart and body to slow down.
Slow, oscillating, rhythmic movements, like rocking from side to side, lifting your right shoulder and then your left, or tilting your head side-to-side, are another way to reset the nervous system. It is important to go slow — like how a sloth moves. This stimulates both sides of the brain, calming the body and giving you something to focus on other than discomfort.
Scanning the Environment
Orienting to your space is another way to shift neural states. You can do this by slowly scanning your environment from one side to the other. Think of what an animal does when it comes to a clearing. Notice what your eyes are attracted to. Notice texture, color, shadow, and light. If there is something your eyes like looking at, pause there and take it in as long as you want.
Another rich resource is imagery. Choose a word that accurately reflects the opposite of how you’re feeling. For example, if you’re feeling anxious, your word may be “calm,” “settled,” or “still.” Then, go to your imagination and find an image that represents that word. “Calm” may be waves on the ocean, sun through the trees, your favorite houseplant, or a meadow of wildflowers. If you’re feeling stuck or paralyzed, your word may be “energized” or “engaged,” and your imagery might be a waterfall, ice skating on a pond, or a horse running through a field.
These are just a few of the ways we can calm or unstick our nervous system in difficult moments. They sound too simple to work, but that’s precisely why they do. Less is more. Your resources will be unique to you based on your life experiences, so explore, and you never know what you’ll find. The other day, I realized that rainbows are a huge resource for me, and just bringing to mind the bright colors of a rainbow has a calming effect on me.
RMD: To work through trauma related to the medical system and chronic illness, how might someone go about finding a therapist to help them?
KH: Believe it or not, there is something called a Lyme-Literate Therapist — someone who either has chronic Lyme or has a close family member or friend with it. Also, this group of individuals is working on ways to train other therapists in being Lyme-Literate. However, due to the massive need, we are still unicorns and difficult to locate.
One resource to try is ILADS (International Lyme and Associated Diseases Society). Members, who are mental health professionals, can be located through their provider search. Also, if your area has a local Facebook group for Lyme disease, other members may have recommendations.
Also, many therapists who specialize in working with chronic illness, which is another good place to try. I often refer people to Psychology Today because you can search by important criteria, such as zip code, issue, modality, and insurance. For example, you can use the search terms “chronic illness” and “somatic.”
Explore other modalities that may be of interest to you, or ask other Lyme patients what therapeutic modality they’ve found helpful. There are many emerging and exciting therapies that work directly with the nervous system.
More about Kerry
Kerry J. Heckman, LICSW, is a licensed therapist in private practice in the Seattle area. She specializes in somatic psychotherapy for the treatment of trauma. She is also a Lyme-Literate therapist specializing in working with people who have complex and chronic illnesses. She lives with chronic Lyme disease and associated autoimmune illnesses. A graduate of Loyola University Chicago School of Social Work, she spent the first 10 years of her career as a school social worker. Kerry is also a freelance writer on the topics of mental health and complex illness. You can find more information on her website: www.kerryjheckman.com.