I vividly remember a point early in my journey with Lyme where I felt afraid of everything. My body seemed to be responding to all foods with an allergic reaction. This turned into an elimination diet, which turned into a spiral of countless supplements, which turned into a spiral of detox protocols ranging from trampolines to castor oil packs. All this detoxing (and the fact that I couldn't walk) led to days and weeks confined to my home. My life morphed from a bustling career to being shuffled from one healthcare provider to the next. Life became small. The smaller my life became, the bigger my fears.
These sudden personality and lifestyle changes left my family completely baffled. They honestly had no idea what to think. I found that most everyone, family included, really REALLY wanted my issues to "just be a mental health problem." This was before my physical Lyme diagnosis. It seemed that if everyone (doctors included) could just turn this into a "brain thing" that it was somehow less difficult, manageable and most importantly, easily explained away. And as with any other difficult situation, there I was, exposed to the honest opinions of loved ones and professionals - "Mental health issues aren't nearly as serious or complex as physical illness." Having worked in outpatient mental health for almost 10 years, I understood mental and physical wellbeing are not an interchangeable way to suffer but inter-connected more than we currently acknowledge. It was that understanding that allowed me to take control of my healthcare plan and get my life back.
When we try to understand the inner world of someone experiencing Lyme, it's important to remember that things that seem like "disorders" to an observer are actually the brain's way of adapting to a situation. Whether that be biologically adapting to a brain infection or cognitively adapting to irrational thoughts and feelings, the brain has one job, to protect itself.
At first glance, we may not understand why our Lyme stricken loved one suddenly seems to have what appears to be an eating disorder, but when we take a closer look, we realize she is trying to protect herself from whatever unknown food is causing a flare up. We may not understand how someone that used to travel the world can not set foot outside her door. Again, a closer look reveals the destruction of one's confidence after Lyme took her ability to remember locations, recognize faces or spell. Lyme is the perfect storm for inducing panic.
Somewhere along the road back to functioning, Lyme sufferers become aware that they have been through something. It wasn't a war. It wasn't a natural disaster. Hell, it wasn't even something the world fully understands. So, to be able to come back from that, articulate your experience and jump right back into life without some sort of support is as absurd as requiring our veterans to do it when they return from abroad.
No one has panic, eating disorders or agoraphobia "just because". There is always a cause. Infectious diseases including Lyme Disease are a known cause of panic disorders. When treated, panic subsides. We as mental health clinicians need to be educated about the biological factors attributed to mental illness.
Healing the mental health needs of the Lyme community is not as simple as clearing the infection. Often those post recovery are left with a trauma and fear to re entry very similar to those that have been in combat or have been in prison. The experience:
- Diminishes our confidence in taking care of ourselves
- Forces us to relearn basic skills such as reading and following directions
- Changes us emotionally, making it harder to relate
- Alters our personality
- Induces intense feelings of grief over the loss of our pre Lyme life
- Induces flashbacks of pain, delusions or hallucinations experienced while being sick
- Causes paranoia toward the outdoors and food
Any post Lyme treatment healthcare plan should include some assessment for mental wellness. Using standard psychosocial assessments, we can get a sense of what Lyme disease sufferers need in order to thrive at their current capacity or post recovery. In addition, Anxiety disorders are the most common mental illness in the United States impacting some 40 million people(ADAA, 2017). Infectious diseases and other illnesses that cause inflammation in the brain and spinal cord are a cause of anxiety disorders. If you or a loved one are experiencing an anxiety disorder coupled with other physical symptoms, please explore medical causes to your condition. We still have a long way to go for the testing of infectious diseases and an even further way to go in providing these types of tests to the mental health community.
In the meantime there are so many options for relieving even the symptoms of anxiety induced by chronic infections. Check out my other blogs on anxiety for a few of my favorites!