Lyme disease is a tick-borne illness that, if left untreated, can impact the central nervous system and cause chronic systemic issues. When promptly caught, it is generally treated with one round of antibiotics. In those cases, it is a fairly short-lived and harmless disease. However, many people never see a bulls-eye rash and are left undiagnosed. Lyme disease can manifest differently from person to person, making it tricky for both patients and medical professionals. Some go years without a diagnosis, and by the time a diagnosis is clear, Lyme has already wreaked havoc, not only on the body but on the psyche as well. Research has shown that Lyme Disease is often accompanied by psychological symptoms when not adequately treated. This is nothing for Lyme sufferers to be ashamed of; it is one of the many ways the disease shows itself. Understanding this can help untangle some of the confusion many patients face.
With any chronic illness, one can expect to be psychologically impacted. We know that the mind affects the body, but the body also affects the mind. The mind-body connection goes both ways and illness reminds us of this; it wears us down and tries us to our core. In addition to the already-present mental struggle of chronic illness, it is common for patients of Lyme Disease to develop anxiety, depression, panic attacks, sleep disorders, OCD, and in some cases schizophrenia.
The spirochete bacteria in Lyme disease is similar to the bacteria found in syphilis, which actually presented as “psychosis” in certain patients . It is possible that there is something particular about these spirochete bacteria that can alter the psyche on a physiological level. The interplay between physical and psychological symptoms can prove to be very confusing and challenging for medical professionals, caretakers, partners, and patients.
Where does the physical illness end and the psychological illness begin? Which came first? Should we treat this with psychotropics or antibiotics?
As it is with many undiagnosed illnesses, people begin to wonder if they are going crazy. One aspect of Lyme Disease that contributes to this feeling is the controversy surrounding the testing, treatment, and longevity of Lyme disease in the medical community. Some doctors may label you with “chronic Lyme Disease,” while others tell you that chronic Lyme Disease does not exist. This can feel very troubling for those who have persistent symptoms long after treatment. These mixed messages can make an already difficult situation feel even more difficult. There are many schools of thought and this post is not going to discuss the myriad perspectives and approaches to Lyme Disease treatment or the debate on chronic Lyme. However, it is important to note that this lack of clarity adds to the psychological distress that often accompanies the disease.
Most people have had the experience of being sick and not being taken seriously, either as a child or as an adult. Maybe you went to the doctor and your symptoms seemed to magically disappear during those 20 minutes in the office. Maybe your parents just thought you were trying to get out of school. Or, in the case of many Lyme Disease patients, maybe you went to the doctor with physical symptoms and left with an anti-depressant script and a referral to a psychiatrist. While that may be part of a successful treatment plan for some, it is likely not the whole picture. Lyme patients often feel dismissed and misunderstood when trying to find answers from medical professionals. They may begin to wonder if their symptoms are “all in their head.” This mindset can cause patients to blame themselves and discount their struggle, contributing to the already present psychological strain of the disease.
Here are a few things for Lyme sufferers to keep in mind:
1. It's not just “in your head.” You are not crazy – you are sick. Just because there are not clear answers does not mean you are making it up. Lyme Disease may be causing psychological symptoms, but that does not discount your physical symptoms – and vice versa! Both can co-exist and neither are your fault. Your body has been plagued with foreign bacteria and it is working hard to fight those toxins on multiple fronts. Talking with others who have experienced chronic symptoms after being treated for Lyme Disease may give some perspective. You are not alone.
2. Encourage your loved ones to read about the effects of Lyme and its different presentations. There are books and support groups for caregivers and family members to develop greater understanding of what Lyme sufferers experience on a physical and psychological level. A support system of people who understand your experience can help advocate for you when you do not have the strength to do so yourself. Reflect on who you feel safe with and who might be willing to walk with you through the nuances of this mysterious disease. It’s okay if you are finding it difficult to ask for help; just start with one person.
3. There is no shame in treating the psychological aspect of Lyme. Continue to pursue medical treatment for physical symptoms, but do not neglect your mental health. Taking care of your body will help your mind and taking care of your mind will help your body. Just as there are “Lyme literate” doctors, there are also Lyme literate therapists who are familiar with the unique challenges you are facing.
4. Remind yourself that you are doing your best at navigating a controversial disease and that you know your body better than anyone else. It may be helpful to form a mantra that you can repeat when you need these reminders. It might sound something like: I can trust myself and the experiences I have in my body. Create a mantra that most resonates with your needs.
5. Honor your body’s experience even if it does not make sense to the medical community or even those closest to you. Take time everyday to listen to yourself and to your body. This may mean 5 minutes of meditation in the morning or 10 minutes of journaling at night. What areas are not being tended to because they have been dismissed, either by you or someone else? What symptoms are you afraid to express out of shame or fear of being labeled as “crazy?” Identify these hidden thoughts and feelings and then express them in some way or take them to someone in your inner circle who you trust. Do not suffer in silence!