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The Impact of the 5 Stages of Grief in Lyme Disease

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You often hear people mention the grieving process when they lose a loved one, go through a painful divorce, or receive news of a terminal illness. Those suffering from chronic Lyme disease also experience this process, yet it is usually not referred to as “grief.”

During the grieving process, Lyme disease patients go through the usual stages of the grief cycle or process, which include:

  1. Denial or isolation
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

When I received a Lyme disease diagnosis in 2002, I went downhill quickly. I was unable to do anything myself, partly due to the damage that Lyme had caused to my central nervous system, which included vision loss and an inability to speak clearly. In the hopes of helping myself to get through it, I kept a journal, which I stumbled upon the other day and began reading. I did not recognize myself from the words I wrote years ago. Was this really me?

I realized that I had been experiencing the same symptoms associated with grieving, such as anger, fear, guilt, sadness and shock, or disbelief and numbness. Other physical symptoms that I documented myself as having included: immense fatigue, insomnia, nausea, weight loss and weight gain, aches and pains, and immune issues.

Following is more information on the stages of grief and how I experienced them.

1. Denial and Isolation: 

(Disbelief, Shock, Yearning or the thought that “This can’t be happening.”)

In the beginning, I isolated myself from family and friends. I kept all of my feelings inside and didn’t speak about what was happening to me. I don’t think they even knew the extent of how bad my Lyme disease symptoms were and how much it was affecting me. I often cried, but not openly. Many times, it was during a shower or while my family was either sleeping or gone. I wavered between thoughts of, “This can’t be happening to me,” and “Why me?”

Finally, I found a neurologist that believed what I was going through and wanted to help by prescribing IV Rocephin for Lyme disease treatment. I was elated. Once I was done with the 28 days of IV Rocephin, I believe I was going to be alright!

Actually, I was in denial that it might have been too late for that. And initially, I was in disbelief that the disease had not been treated correctly and had probably progressed beyond the point of being curable. So I went into shock when I found out, and during the three months that I was searching for answers, the bacteria caused a lot of  damage in my body, and later, I realized that it was going to be very difficult to reverse, repair or cure. I could not believe that after the Rocephin, I hadn’t seen much progress. I kept saying to myself: This can’t be happening!

2. Anger:

(Why Me?)

Then, I went through a process of being angry. Why wouldn’t the doctors listen to me? I was so angry because I knew almost the exact date and time when my health began to go downhill. Why didn’t they believe that it all began when I found the tick and saw the bull’s-eye rash? The doctors kept stating that my symptoms were just a coincidence. Whenever someone asked how I was doing or what had happened, I became so upset that I’d begin shaking and cry tears of anger. Why did the doctors ignore me and treat me like I was a lunatic? I was often told that my symptoms were all in my head.

Another question I’d ask myself was: Why wouldn’t the doctors give me antibiotics for a bit longer? I told them the symptoms I was experiencing were still part of the early signs of Lyme disease. If they had listened or done Lyme disease testing, I would not have reached the critical point where I had to have someone else feed, bathe and clothe me!  I felt so brutally angry that all they did was call me crazy or label me as “clinically depressed,” or a “hypochondriac” — as well as many other things. Why did they let this happen?

3. Bargaining:

(Guilt or What If?)

Then, I entered the bargaining stage. My thoughts fluctuated between “if I had only found this doctor sooner” or “if I had done more thorough research and been more demanding,” this would not have happened. I found myself asking many “What IF” questions, such as:

* What if I don’t become well?
* What if I have to be taken care of like this from now on?
* What if my sweetheart begins to resent me?
* What if he decides that he can no longer take care of me and leave me?

At night, whenever I would cry, I would find myself bargaining with God: “If I get well, I will be a better person,” or “If I get better, I will do this.” There were numerous entries in my journal that indicated that I was going through this bargaining stage.

4. Depression:

(Mourning, loss, regret, fear and goodbyes.)

As part of the grieving process, I mourned the loss of being able to do the daily activities that I had once taken for granted. I felt the loss of being sought after for answers and information by others and formerly  being called the “encyclopedia.” I mourned that I was no longer highly regarded by others for my knowledge. I cried because I was no longer considered the best at what I did. I felt at a loss because I no longer could remember people’s names after only meeting them once. Loss, loss, loss!  It surrounded me.

I read entries in which I said goodbye to my family and friends, in a sense. My rationale for saying goodbye was that they’d be far better off without my bills or having to take care of me, helping me dress,  cooking for me and feeding me. I had actually written goodbye letters. I had outlined specific bequests.
Fearful thoughts also surfaced many times throughout my journal. These manifested in questions such as:

* Will I learn to deal with the fact that I cannot walk on my own anymore?
* Will I ever regain my night vision?
* Will I ever be able to speak without stuttering?
* Will I ever be able to convey my true feelings, like I once had?
* Will I ever be able to read again?
* Will these “shakes,” that reminded me of Parkinson’s disease cease?

5. Acceptance:

(Making peace or achieving a sense of calmness.)

Finally, as I progressed with Lyme disease treatment, I began to shuffle or slide my way around the house. Eventually, I was able to walk slowly with some assistance, which gave me hope. I found a sense of peace that I now was walking and getting dressed. The ability to dress and feed myself instilled confidence in me, and I began to reach out, to a few select friends. By listening and accepting me as I was, they helped me to move forward. With their support and understanding, they helped me to understand that I was much stronger than I thought.

Eventually, those strong feelings of anger began to subside slowly. The “Why me?” and bargaining sessions began to lessen. I found myself able to smile and laugh more. I’d say that I was finally accepting things as they were.

My acceptance of my situation didn’t mean that I was ready to give up on becoming better, but I was ready to face the future. And I would continue to do all that I could, to improve physically, emotionally, spiritually and otherwise.

Please remember that there is no timeline under which these five stages of grief occur; they are not set in stone. These stages were not meant to define how you should deal with your grief. They are simply a guide to the emotions and feelings that many people with Lyme disease will go through. The stages and emotions can vary from person to person. We all grieve differently and uniquely, which is normal and healthy. Ultimately, the key to true healing involves finally coming to terms with our own personal grief.

This article was first published on ProHealth.com on April 28, 2016 and was updated on February 25, 2020.

Lydia Niederwerfer is a Lyme disease survivor, a freelance blogger, founder of LymeAware, and is passionate about spreading awareness of Lyme disease and other tick-borne illnesses. She is a devoted wife, loving sister, and inspires many of her friends and fellow Lyme Warriors. She also shares the trials and triumphs she has experienced in her journey with Lyme disease on her blog. Lydia has a B.A. in Business Administration, majoring in finance and works within her area school district.

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One thought on “The Impact of the 5 Stages of Grief in Lyme Disease”

  1. PC1980 says:

    What wonderful insight she has in this article! She gives a lot of information on what a person deals with that I did not know. I pray that there is a cure in the near future to cure these people! Very informative!

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