Facing Change – Maintaining Integrity

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of?

I wrote this in my journal in October 2004, ten months after being diagnosed.

For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):

 Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one possessed or dreamed that one possessed. Yet it is only when a [person] is able, without bitterness or self-pity, to surrender a dream he has long cherished or a privilege he has long possessed that he is set free – he has set himself free – for higher dreams, for greater privileges.

I need to reflect on what this means for the changes I am experiencing. There are days when I feel like my world is breaking up, I sometimes don’t know who I am anymore and whether there is enough of me left; I’ve lost the safety of knowing who I am and what my body can do. And I am really afraid of what my future will be like.

Thinking about what it means to give up my dreams and privileges will have to wait for another day, when I can muster enough courage. It has been many years since I’ve felt this much emotional pain. I had forgotten the feeling of crying from so deep that it feels like a fist in my stomach.

 Seven months later I reflected on what I had written above in the following journal:

During the past 7 months, as I had to face a very uncertain future, I tried to cling to what I had been and especially what I thought I wanted to be. I fought to hang onto my dreams and hard earned privileges. James Baldwin wrote to the privileged whites who he is asking to give up their personal dreams and social privileges for a more just world. I would have to rewrite the last sentence in order to communicate the journey I am taking:

 Yet it is only when I am able, without bitterness or self-pity, to surrender my old life – and be willing to live the life I have been given – that I am able to have a fuller life.

 I think I am mostly there, sometimes more gracefully than other times. Most days I feel a peace that comes from knowing God will use me in ways I can’t even imagine. I feel a peace that comes from knowing God will give me what I need when I need it. I’m not quite as graceful when, after I have done things that I didn’t think I was capable of, when I have pushed myself to my physical limit, I experience days of pain and fatigue. I guess I didn’t think that was a part of my covenant with God, but then he never promised life would be easy. He just promised to love me and be with me.

When I wrote the previous paragraph I believed that I was “mostly there.” I had done a lot of grieving, had felt a lot of sadness, fear, emotional pain, frustration, and anger. But I still had a long way to go because developing a chronic illness like fibromyalgia impacted on all aspects of my life and adjusting was a process that took years. At times I felt like I was taking too long but adjusting to a chronic illness is neither easy nor quick.

I was in my late 50’s when I was got sick so I also had to deal with the physical and life changes that took place as I was aging along with the changes imposed by fibromyalgia. I have been thinking about people who develop chronic illnesses in other stages of the life cycle and know that each life stage has its challenges and tasks and adjusting to a chronic illness makes accomplishing the task even more challenging. The bottom line is that no matter how old we are, being diagnosed with a chronic illness is devastating and disrupts our goals and dreams.

Here is what I wrote seven and a half years after being diagnosed explaining how I knew I had found my new normal:

I have made two interesting discoveries that have confirmed for me that I have settled into a “new normal.” One is a quote from an article that I discovered while doing a literature search for my writing. The literature review includes the work of Nola Pender[i] who proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.”

Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

The second discovery is that my life no longer centers on fibromyalgia. Instead, I am living my life fully with some limitations due to fibromyalgia. Most of the time when I am active and doing things I love, I don’t even think about having fibro. It has become one small piece of my identity and how I live my life.

My doctor helped me understand that a new normal is not a destination that we arrive at but a new way of being right now. It is being who we are right now as we move through our life-cycle phases. It is a way of thriving as we are continually adjusting to the demands placed upon us by having a chronic illness. This means that I will face future challenges as my life circumstances change and I will have to continue to work on what it means to thrive, to live my life and be who I have been called to be.

What is encouraging to me is that I once again feel like I am in tune with my normal life cycle. I can once again take an active role in making decisions about who I am as I age and how I want to live my life, as some options are lost and new opportunities become available. Fibromyalgia will always be a factor in the decisions I make but I don’t feel like my chronic illness is in control of my life. My life has integrity.

[i] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.


Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me

Being Sick and the Sick Role

I struggled a lot over what it means to be “sick” and this was a major theme in my journals beginning in the first year and continuing for about a year and half after developing symptoms. Here is an early journal entry, about six months after diagnosis:

When I have a pain-free day, I become more sympathetic with myself and recognize how hard it had been to function on the previous days. On the other hand, when I am going through a string of difficult days, I get really angry when my husband comments on my being “sick.” I don’t want to be thought of as being sick!

It is interesting that I am having a difficult time writing “my pain,” preferring to talk about “the pain.” Maybe I don’t ever want to accept “the pain” as being “my pain.” It feels like talking about “my pain” would mean that I have taken on the “sick role.” I refuse! (9/04)

I had a vague understanding of what the “sick role” meant but finding articles that explained it in depth started me thinking about how to better understand my struggle. I was struggling to understand what it meant to be sick while at the same time maintaining a “non-sick” relationship with my family, work, friendships, and community, and especially what it means to my sense of self and self-worth. The concept of the sick role was developed as a way to understand the different expectations that society has of people when they become sick[1]. The sick role was written to explain how people deal with acute illness, those that can be cured, but it helped me understand my struggle as I worked towards acceptance of having a chronic illness.

When a person is sick, according to Parsons, s/he takes on the sick role with the following implications: a) others recognize that the illness is involuntary, that the sick person isn’t responsible for being ill; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) they are expected to seek competent help and to cooperate in the process of trying to get well. You can recognize how the sick role works for you if you think about a time when you have been sick – even as a child. When I had my tonsils out as a nine year old I got to eat all the popsicles I wanted and didn’t have to go to school when all the other kids did, but I also couldn’t go out to play, had to stay on the couch all day to rest, and had to return to school as soon as I was well.

When my symptoms of Fibromyalgia began and for a period of time after I was diagnosed, having the status of being sick worked very well for me and helped me to do what I needed to do. I was able to take time off work for doctor’s appointments and testing, people were willing to cover work and home responsibilities, and they understood if I cancelled social engagements. As time went on (six, eight, twelve, eighteen months) and it began to sink in that I was living with a chronic condition, I began to have strong emotional reactions and mental conflict over being sick and taking on the sick role. Although there were still times when I needed to use the “privileges” of being sick, I also got angry when people referred to me as being sick and I became frustrated with having to rely on medical care to keep me functioning.

The sick role that applies to people who have acute illnesses seemed very different than what I needed when I knew I was going to be sick forever. I questioned what the sick role meant for my self-identity and self-esteem. I also questioned how to balance being sick with maintaining the highest level of functioning possible so I could once again enjoy the life I felt I had lost. What would it mean for my sense of self and my life if I were to accept that I was sick and allow myself the benefits of the sick role?

In future posts I will share my thoughts and reactions to each of the characteristics of the sick role.

[1] Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me

Meaning in a Quilt

During the first year after being diagnosed with fibromyalgia, I was desperately trying to hold on to the life that I had lost. I spent hours sitting, looking out the window, trying to figure out how to make sense of what was happening to me and how to cope with my fear.

I needed a diversion so I started piecing together a new quilt top for our bed. Over the years I had made several quilts, choosing both easy and very difficult patterns – some I finished and some are in a drawer. I looked through my quilting books and picked a new pattern that appealed to me. Here is my journal entry about how this process both helped me cope and seemed to reflect how I felt about my life during this time:

Sewing on my “Contrary Wife” quilt continues to bring pleasure. This has been such a good project because of the symbolism. The name of the pattern fits how I feel I am perceived because of my need to maintain control in my life when I don’t seem to be able to control what my brain does. I know I come across as contrary and always putting up a fight. On the other hand, the pattern is bright and colorful.

It was fun to use all my favorite fabric while buying lots of new pieces. This is bringing joy to days that could otherwise be quite devoid of joy. Each block is unique and different while having a constant pattern. As I look at the different blocks I have designed, they seem to reflect how I experience life on different days.

Some of the blocks are muted and relatively dull – although I love the fabrics and find the combination of fabrics pleasing. Some of the blocks are very bright and intense. Some are high contrast, maybe even sharp, like the pain I feel in my legs and arms. Some blocks are not so pleasing by themselves – the colors are not my favorites and I would leave them out if they weren’t necessary for holding the rest of the quilt together. Sometimes the unpleasant colors of our life-quilts are necessary for the overall beauty. I also like the strong lines of the pattern when the blocks are laid out. The strong diagonal lines seem to hold the quilt together, just like I need strong lines of faith and love to hold my life together.

The most important characteristic of this quilt pattern is the fact that, with careful work, I can make the points and seams line up. With a little effort in measuring accurately, sewing correct seam widths, and multiple re-stitching, I can make it work out. I need this as I am struggling against what seem like the insurmountable odds of finding what will work to help me feel good with a condition that will not go away even if I do everything right.

I am so glad I have my faith to guide me through this. I have to believe that God has provided me with everything I need to make the most of this situation. Of all the hundreds of quilt patterns that I know are just waiting for me to do, the one that I felt compelled to do is the one that is perfectly meeting my needs. 

I finished the quilt top but it was several years before I took it to be quilted and I finished binding the edges so I could use it on my bed. This was my “fibromyalgia quilt” and fibromyalgia was causing me so much emotional and physical pain that I couldn’t get my mind around how my “fibromyalgia quilt” could comfort me as I lay under it.

People deal with traumatic experiences by finding something good within it or turning it into something positive – we want to find meaning in our pain. I wanted to find some good in having fibromyalgia but I couldn’t, no matter how hard I tried. Maybe not wanting to get comfort from my fibro quilt was symbolic of my not wanting to see any positive in having fibromyalgia. Maybe it was a symbolic act to express my anger over having my life and my very self taken away from me. Wrapping my “fibromyalgia quilt” around me and getting comfort from it was something I refused to do.

I finally did enough emotional healing to finish it in the sixth year after diagnosis and it has become a beautiful expression of my determination and courage. I’m still not sure, however, that I can find any positive meaning from having fibromyalgia. My life is good, but not because I have fibromyalgia.

Copyright © Patricia A. Bailey, 2012-2013.