In 1969, author Elizabeth Kübler-Ross published her book “On Death & Dying,” and in it she presented a famous formulation of the stages of grief that dying people tend to go through as they come to terms with the realization that they will soon pass. Since the book’s publishing, her stages-of-grief system has become more popular than her book, and it is now a part of our modern cultural awareness. Her five stages include denial, anger, bargaining, depression and acceptance.
Inspired by Kübler-Ross’ work, I have begun to notice similar but different stages of consciousness, experiences and emotions for chronic Lyme patients as they move to complete healing. One of the differences in the staging system I’ve developed is that a patient can get stuck in a stage and never progress to complete healing. Conversely, in the stages of grief, a patient ultimately moves through the system and reaches the final conclusion of death whether they like it or not.
Another difference I’ve noticed, after my own 15-year struggle with the disease and after talking to thousands of patients over the decades, is that the chronic Lyme patients who progress to 100% remission experience a shift in consciousness that can be tracked in a hierarchy. I would like to make a fine point that I’m talking about chronic Lyme patients exclusively. I’m not talking about early-onset Lyme patients who have gotten a timely diagnosis and have taken a round of antibiotics or herbal treatments within the first 60 days of infection that completely disabled the disease. These people can go on with their lives mostly unfazed. It’s the chronic Lyme patient who must go through these six stages to make it to complete recovery. It is a much different and more challenging experience and not everyone makes it through. In fact, it is rather rare to do so.
I would also like to point out that this staging system attempts to describe the experiences of people who have recovered from chronic Lyme whom I’ve had direct experience with. I am open to hearing about any chronic Lyme patients who have fully recovered in different ways, and I understand that no staging system can be entirely comprehensive Also, chronic Lyme patients may experience these stages in a different order than presented here. That said, this system seems to adequately describe the steps a typical chronic Lyme patient goes through on their road to complete recovery.
Discovery:
Patients can get stuck in this stage for months, years and even decades. They know something is wrong with them but they don’t know exactly what. They go from doctor to doctor and take test after test and still don’t reach an adequate explanation for the wide range of symptoms they’re experiencing. Or worse, misdiagnosis may send them down a treatment rabbit hole with no end solution. When a definitive diagnosis does come through, the patient feels an overwhelming sense of relief that they can now focus on their disease with a treatment that will ultimately bring them to complete recovery. For the chronic Lyme patient, this relief is short-lived as they begin to experience the challenges of the Treatment phase.
Disillusionment:
This stage may come during the Discover stage or during the Treatment stage. Either way, a chronic Lyme patient will begin to have some of their beliefs about their trusted medical systems, insurance coverage and Western medical doctors’ knowledge overturned. Every chronic Lyme patient expects to go to a trusted physician, get a timely and accurate diagnosis, and begin an effective treatment protocol that completely eliminates the illness. This is the process that helped them recover from colds, flus and other acute illnesses, so why wouldn’t this work for Lyme disease? As the chronic Lyme patient begins to experience inconclusive or incorrect diagnoses and treatment protocols that are dangerous and ineffective in curing them, they lose faith in the system that had supported them in the past. They find that insurance companies don’t cover alternative treatments at all and barely cover pharmaceutical treatments that often don’t help. Many of their doctors have not been trained in chronic Lyme treatment so these physicians can become defensive and question whether their patients are sick with a legitimate disease. Family members may begin to believe that the chronic Lyme patient’s illness is all in their head and that the patient is either seeking attention or suffering from depression or mental illness. At this point, the patient who can move from disillusionment through a belief-system shift of self empowerment (by becoming their own health advocate or even their own physician) is the patient who can move up in the hierarchy.
Treatment:
Treatment of chronic Lyme is not a one-size-fits-all proposition. Physicians and patients are finding that the treatment combinations that work effectively tend to be customized to the patient and their set of symptoms and co-infections. It is important that a patient goes through the Disillusionment phase by realizing that the scenario they experienced in the past of diagnosis/treatment/cure will not be the same straight line with chronic Lyme. Further confusing is the fact that because antibiotics are prescribed and proven effective in treating early-onset Lyme, many physicians prescribe antibiotics-only treatments to their chronic Lyme patients. These patients may experience some early symptom relief, but many cannot tolerate antibiotics alone or find that they need to continue treatment when their symptoms return weeks, months or years later. Most physicians agree that while antibiotics-only treatment may give some relief, it is not a cure for chronic Lyme disease. The patients who reach complete healing move to all-natural and herbal remedies to remove the pathogens with a combination of detoxifiers that allow them to eliminate toxins from their system without suffering from endless Herxheimer reactions. At this point, it can be an important move for a patient to do their own research and find the treatment combinations that work for them. This move to self-empowerment can help guide them through the later stages of healing.
Anger & Panic:
For those stuck in the Disillusionment and/or Treatment stages, overwhelming frustration with lack of healing improvement can bring up combinations of anger, rage and panic in chronic Lyme patients.
Depending on the patient, they can react either externally or internally and this can have a bearing on whether the patient experiences anger or panic. Patients who react externally are more prone to anger and tend to get frustrated with their family members, doctors and support systems. They can flare into rages that alienate them from the very people trying to help them. Further, they can feel unheard or marginalized when they complain of symptoms and don’t receive validation from others. Because these patients tend to suffer from central nervous system irritation brought on by Bartonella and other co-infections, the term “Bartonella Rage” has become well-known in chronic Lyme communities.
If a patient reacts internally, they may be prone to fits of panic. It is common for Lyme patients to run out of money and support during the treatment stage, and these stressors can result in the patient feeling hopeless. When the bottom falls out of a patient’s world like this and they have no energy to continue fighting the illness, suicidal thoughts occur. It is an unfortunate fact that suicide continues to be the leading cause of death in Lyme patients in the United States.
For these reasons, it is important for patients to move beyond this stage. Furthermore, the anger and panic they experience actually worsens symptoms and helps the bacteria and co-infections thrive. Those who have come to terms with their anger and panic find they have more energy reserves to heal. They place their focus on moving on with their lives vs. feeling the need to prove the injustices they have experienced. To be sure, they have suffered real injustices, but it is exhausting and energy draining to spend your time proving yourself to an unsympathetic audience. Placing focus on happier thoughts, successes and positive pursuits has always proven to be a powerful component to healing, and it is the key to helping patients move on from this stage.
Acceptance:
A patient who has accepted his/her situation is one who is ripe for healing. It doesn’t mean they have resigned themselves to failure. It means they have stopped resisting, and by doing so have stopped the energy cycle of opposing force from the disease. Many alternative healers will tell you the less energy and attention you give to an illness, the less resistance you will get back from it. I noticed this during my own healing journey. The more I focused on the symptoms and bad feelings the disease was causing, the worse I felt. Yet, there were times when I would watch a funny show on TV or listen to some music that made me forget I was sick. The more I strung those situations together into longer periods of time, the better and better I felt. Another way to let go of resistance during this stage is to stop identifying with the illness. Stop calling it “my disease” or “my symptoms.” The bottom line and the best way to move through this stage is to accept the illness while also stopping the amount of energy and attention you give it. Once negative focus on the illness has dwindled to almost nothing is when patients tend to move to the next stage.
Gratitude:
If the idea of being grateful for chronic Lyme disease coming into your life sounds ridiculous or unthinkable, you may not be ready for this stage. Those who have reached recovery openly accept this concept. In fact, it allows them to put the illness completely behind them and understand why it was introduced in their life in the first place. It helps to think of the disease as simply new information being introduced into one’s life. The illness is a doorway or fork in the road that can either take you upwards or downwards. Instead of reacting negatively, you can accept it gracefully and realize what a gift of experience you have been given. This experience can be like a forest fire that burns away all unnecessary elements in your life, while creating space for new growth. Yes, it burns things you deem valuable, but after those things are gone, you realize they weren’t as important as you thought.
This experience can be like a forest fire that burns away all unnecessary elements in your life, while creating space for new growth.
Further, you are forced into new situations and places in your life that can be better places than where you were before. Understanding this, I came to a point that whenever I felt a symptom occur, I lovingly embraced it, thanked it for the information, and then asked for it to go with love. Each symptom passed quickly after doing this. The patients who move through this stage always experience some sort of spiritual shift, and this shift usually results in them wanting to help others with the disease. In fact, there is not a single person I’m aware of who has reached full recovery without some kind of spiritual breakthrough involving their forgiveness of others and themselves for past injustices. Complete healing works on all three levels of you… mind, body and spirit. And if you only focus on one aspect of yourself, you will get the corresponding results. People who experience complete healing are all positive, open-minded, full of gratitude and free of regrets. They are emotionally “debt-free” and actively give thanks for the illness and the knowledge and experience it has given them.
The above material is provided for informational purposes only. The material is not nor should be considered a substitute for medical advice, diagnosis, or treatment.