Welcome to my blog. In January, 2004 I was diagnosed with Fibromyalgia at Mayo Clinic and, along with a lot of other information, I learned it is important to pace my activities and control my environment to reduce stress. I’m not sure I totally comprehended what this meant because I still wanted to work full-time, be an equal partner with my husband in maintaining our home, being a parent, loving our grandchildren, engaging in worship at our church, and having fun with our friends. Here is what I wrote in my journal:
I don’t know how to judge a good day from a bad day – I don’t know how to live my life. If I don’t do anything at all, I have relatively low amounts of pain but being on the sofa all day isn’t a good day. When I go to work, socialize, and exercise I am emotionally happier but it leads to more pain the next day. (Journal, 01/04)
I found a good book (there weren’t many published at that time) and I believed that I would soon have my life back on track if I did everything right but this was delusional. The journey that first year was very rocky, with small steps forward and many falls backwards. I was committed to doing everything right but it wasn’t easy knowing how to apply what I learned to my everyday life. It became evident that the only way I knew how to pace myself was stopping when I couldn’t go any further but this method also meant that I did a lot of things wrong and paid a really big price with pain and fatigue.
Along with the pain and fatigue, I experienced frustration, sadness and anger. None of the books I have read talked about the emotional toll this would have on me and how I could mentally cope with having a chronic illness. Learning to cope with the physical symptoms was difficult but coping with the emotional and mental strain was very daunting. Here is a journal entry from April, 2004:
The process of learning to live with chronic pain and being, if not medically fragile, functionally fragile has been more difficult than I had anticipated. It has challenged my thinking, emotions, and beliefs about relationships, my self-esteem and self-image.
Freud summed it up well that all of life is about loving and working, and I discovered that having a chronic illness does a number on both. Developing a chronic illness also impacts on our self-image and our self-esteem – it shook my sense of self to my very core. My degrees are in mental health so I had knowledge of grief and loss, how people cope and change, and had been a mental health therapist. I know how people heal from emotional trauma but I was looking for help in dealing with the ongoing emotional turmoil of facing a condition that is chronic and invisible. I felt very alone even though I was surrounded by family, friends, and colleagues who cared about me and were eager to help. Here is another journal from April, 2004:
Now that I have learned how to deal with the major symptoms most of the time, I find that I am still searching for how to cope with something that is chronic. I read the book on coping with chronic illness that Joyce gave me – it was interesting but didn’t tell me how I can cope. I have found that being sick has touched all my emotional nerves and coping involves resolving these issues. I wonder if anyone can tell someone else how to cope? I wonder if there are similarities to the grieving process due to chronic illness that everyone needs to go through? They say that the pain of grief is lonely because no one can go through it with you. Do I have to figure this out alone?
I did two things to help myself with the emotional pain and confusion I was experiencing; I made an appointment with a therapist with expertise in grief therapy (with the extra benefit of being a nurse) plus I started keeping a journal. The therapist helped me make sense of what I was experiencing by asking the right questions and helping me understand the medical side. My journal was originally intended for my daughters if they developed Fibromyalgia, but I soon recognized that it gave me a place to record the feelings and thoughts I was afraid to express to anyone else, to clarify the issues and feelings I was experiencing, and to record my journey so I could track my healing progress. Keeping the journal became a healing experience. As I write entries on this blog I will draw heavily on my journal because I believe my experiences haven’t been much different than most people’s. I hope that you, if you have been diagnosed with fibromyalgia or another invisible chronic illness, will be able to identify with some of my experiences, will find increased understanding of the psychological problems you are facing, discover ideas for coping, and receive encouragement so emotional healing can take place.
Has a chronic illness led to your feeling like your world has fallen apart?
Did you find that getting sick impacted on your sense of self?
I hope you will share your experiences.
Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.
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