The Emotional Side of a Chronic Illness – Part 1

Pre-Diagnosis

I thought it was time to write about something on a more personal level. The majority of my prior posts have focused on issues patients face when dealing with the medical community and methods that can alleviate some of those issues. Although my previous posts represent my purpose for creating this blog, I think it is important to share the issues I have personally faced with respect to the Parkinsonism diagnosis. Therefore, I decided to begin by writing about how Parkinsonism affects me emotionally now, as well as how it affected me emotionally prior to the diagnosis.

My true diagnosis journey to Parkinsonism began in late 2003. It was at this time that I became fully aware that some of my symptoms were not related to the herniated cervical disc, which had been surgically addressed by a fusion in August of 2003. Because the fusion had corrected the symptoms that were related to the herniated disc, I was better able to recognize that the symptoms that remained were due to a separate cause. Therefore, in order to draw a line in the sand, I now state that my Parkinsonism related symptoms began in late 2003.

For the first couple of years, I did not actively search out a cause for the existing symptoms, nor the additional symptoms that began to emerge. Since many of the symptoms were not consistently present, I was fully aware that seeing a specialist would not produce any results. My previous Primary Care Physician and I made the decision to monitor the symptoms until they were progressed enough that a cause could be determined. I often provided written communication to my physician as symptoms changed or new symptoms emerged. Emotionally, this period caused frustration more than anything else did. I was frustrated because I wanted answers, yet I fully understood why I had to be patient.

The intense search for a diagnosis began in August of 2006. By this time, my symptoms had progressed to the point that without appropriate treatment, my ability to function in all aspects of daily life would have been non-existent. My symptoms were not only consistent and present, but they had progressed to a very severe level. For the first time since my symptoms began, I was frightened. It was at this point that I realized that I was not dealing with a minor disease. I knew that whatever it was, it had the power to rob me of my ability to walk, speak, or do any type of activity that required normal speed of movement. My biggest fear was that whatever I was dealing with might not have a treatment or cure.

I previously posted on how Parkinson’s Disease came into the picture that August day that I tried Sinemet. Between that day until June of 2007, three different Neurologists evaluated me. Two were Movement Disorder Specialists, and the other was a regular Neurologist. Without going through all the details again, I will only briefly describe the roller coaster of emotions during this time.

Anger was a huge emotion that I experienced. I was not angry at the prospect of having PD. I was angry about how I was being treated by the two Movement Disorder Specialists. One made statements contrary to known information about PD, focused on conditions that do not benefit from Sinemet use, and discounted or did not answer questions that my husband and I would bring up. The other specialist blew me off, because I had dared to question the methods of the first specialist. Angry does not even describe the depth of emotion that these experiences caused.

Disappointment was prevalent throughout this process. My third Neurologist was a wonderful, caring physician. Unfortunately, after 6 months, he felt that he did not have the necessary experience needed to diagnose the condition. This contributed partially to my disappointment. The majority of my disappointment stemmed from the knowledge that I was losing a wonderful physician who I knew I was able to work with. Additionally, this event meant that I had to start over again with yet another specialist.

Frustration was a daily emotion, which had multiple contributing factors. During "wearing off" times or when I went off medication for medical evaluations, the return of motor symptoms was very frustrating. The inability to speak normally or to walk with a normal rate of speed and fluency was not only exhausting but also frustrating to the point that I often spent the day in solitude on the couch. Additionally, I felt like I had to be one step ahead and ready for battle when dealing with the specialists, which became a major trigger of frustration. I became more frustrated than ever before with not knowing my diagnosis and I felt that the specialists due to their methods, attitudes, lack of interest, etc., were wasting time. Finally, my biggest frustration was the inability to explain to other people how it feels when the symptoms are present. I never felt that anyone understood completely what I was feeling and trying to express.

During this period, the big “D” entered my life. Yes, whenever my symptoms would return I would be hit with an overwhelming feeling of depression. At first, this really frightened me, because it was a feeling I had never been exposed to before. Initially, I really did not understand that the feeling was in fact, depression. Of course, I began to do some research on the internet, and the information I found explained it all. It appears that when the dopamine levels in the brain are low, such as in between doses or when completely off medications, depression can manifest in the same manner that motor symptoms return. Depression is known as a non-motor symptom of Parkinson’s Disease. This appeared to be what was happening in my case. If my motor symptoms returned to a significant degree, depression would envelope me also. The next dose of Sinemet, which helps with controlling the motor symptoms, would also alleviate the depression. Therefore, I only had to deal with depression during those times when my dopamine levels were low, which I tried to prevent as much as possible.

Loss and mourning go hand in hand. This was the beginning of the sense of loss and mourning for those losses. The feeling of loss involved many factors, primarily the loss of my ability to maintain the fast-paced lifestyle I had always thrived on. I mourned the loss of my ability to work. In many ways, I felt as if I had completely lost the person I once was and had no idea how to deal with the person I was becoming. Additionally, the loss of complete independence and having to rely on other people for certain things was one of the greatest aspects of my former self that I mourned. I had been independent my entire life, and for the first time, I began to realize that my independence and self-reliance were now becoming a part of my past life.

I believe that loss and mourning are such strong emotions for someone dealing with a chronic illness, that often they become barriers to acceptance of the chronic condition, even if the chronic condition has not been firmly diagnosed. It was not until I was able to accept my various losses associated with my condition and get through my mourning of those losses, that I was finally able to envision a positive future, despite my physical health. Once this occurred I began searching out new interests to replace the activities that I was no longer able to do. This enabled me to wake up each morning with new purpose and helped me to realize that there were many things I could still do.

Finally, guilt was a heavy feeling that entered my life. Although my health condition was beyond my control, I began to feel guilty for the burden I felt I was becoming, in the lives of my family, especially my husband. I was no longer able to contribute as much financially as I had been. My condition would sometimes dictate when and for how long we were able to go places. These are just two examples of situations that fueled my guilt. I spoke openly with him about this feeling many times, and each time he would reassure me that I was not the burden I perceived myself to be. He would always say that he fell in love with my heart and my mind, rather than the physical condition of my body. Despite his words, the feelings of guilt, whether rational or not, were and still are difficult to remove from my life.

Through this initial diagnosis process, there were only a handful of people who I shared all of the information I had with respect to my health. My faith in God played a key role whenever I had to deal with these emotional factors of my condition. There were many times when the emotions were so overwhelming, and the only way to get through the negative feeling, was to turn it over to God and let him take control. He always brought me through the rough patches without fail.

The Lord provided a partner here on earth that became my daily strength and the voice of reason whenever my emotions were running in high gear. This partner was my husband. When I needed to talk, he would listen for as long as needed, sometimes for several hours, allowing me to work through my emotions. If I needed to cry, which I rarely ever did prior to this disease, he would hold me for as long as I needed, until I completely cried out whatever emotion I was experiencing. My husband has only spoken words of encouragement with respect to my condition, and has never made me feel like our lives are less full because of it. When I am walking slowly, he holds my hand, and has learned to let me speak for myself even if it takes ten times longer than normal. When my husband has done everything he can to help me through a bad emotional event without success, he is the one who reminds me that it is time to give it to the Lord to deal with. My husband is my partner and best friend on earth. The Lord is my Savior who carries my burdens when we no longer can.