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

Loss of My Doctor

The doctor that I have had for the past 10 years seemed to be a gift from God. He understands how difficult fibromyalgia is for the patient, has an excellent problem-solving mind when presented with a new symptom, welcomes new information about treating FM, cares deeply about his patients, and gives the time a patient needs. There were a few rough spots through the 10 years, but our relationship seemed to be very satisfying for both of us. I thought he cared for me, appreciated how I worked with him, and I knew I respected him so I was dreading when he retired in a few years. When he retired I knew it would be hard but I also knew I would be happy for him and together we would find someone else to take care of my healthcare needs. What happened, however, was totally unexpected and is taking a long time to deal with emotionally.

I have Medicare insurance and he made the decision to not accept Medicare reimbursement if congress didn’t stop the decrease in payment to health care professionals, so this meant he would no longer be willing to treat me. Congress did put a hold on the cut but I had already felt the wound of betrayal and after a lot of thought and tears made the decision to discharge him from having responsibility for my primary healthcare needs – I fired him.

What pained me most was that he hadn’t seemed to understand how the ending of our relationship would impact me. From his perspective it was strictly an economic decision; from my perspective I was losing something more than a best friend. I was losing someone who I had put my trust in; who I had not only entrusted my body and health to, but had also shared my pain, fear, sadness and anger and he heard me and helped me. I had assumed that I had moved him in a way that mattered and maybe I did but his economic well-being meant more. I wanted to believe that I had mattered but in the end I had to realize that he mattered more to me than I mattered to him. Our relationship was unequal (I’ll post more on this topic) and I realized it was impacted by many factors that I had no control over (Maybe I’ll post more on this).

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

Kindness

In this post I want to share with you the reflections of a doctor going to see her doctor. This was written in a creative piece entitled Kindness by Dr. Scholten, who provides healthcare to refugees in Canada, [i]. It is especially potent because she has experienced being both the doctor who is appreciated by patients and then a patient who feels gratitude towards her doctor. So often we wish that our doctor could be in our shoes, could experience the emotional turmoil we experience, that can only be touched through kindness. Sure we need doctors that are competent and capable but there are times when these qualities just aren’t enough.

She begins her story by saying that she had helped an Eritrean couple who were new refugees to Canada and facing an unplanned pregnancy. They come to her office for the last time before continuing with an obstetrician and the husband expresses his deep gratitude to her with a small speech. Obviously she had touched them deeply with her caring and help. She writes, however, that she is “embarrassed that I’m thanked for dispensing something that cost me nothing: no education, no honing of skill, no effort. I’d rather be thanked for diagnostic prowess or a deftly performed procedure.” It is clear in her statement that she underestimates the importance of her kindness and she believes technical skills and intellect are much more important. She writes that she forgets their gratitude as soon as she ushers them out. What happens next in her story, however, gives her a new perspective:

Seated in my doctor’s office, I’m in the chair tucked right next to his desk. This is the first visit that I haven’t sat casually on the exam table with my legs dangling over the side, the first time I haven’t popped in for something routine like a vaccination or contraception or a prenatal visit, where we talk shop and I ask about his daughter, a medical school classmate. This time, I’m here to follow up a disastrous ending to a second-trimester pregnancy. He knocks on the door, steps in, gives me a long, sober look as he slowly closes the door, sits down. He sits in silence. I can’t look at him. Finally I force myself to talk, exhausted, crying, despairing and he listens. He leans over his desk, arms folded on it, looking down. Eventually I look at him, at his solemn white-bearded face, and I note that he is flushed. His eyes are damp. And I realize that he is moved by my distress, and I am completely taken aback.

If we have a chronic illness, we have probably had a similar experience. We have sat before a doctor in all our emotional nakedness, overwhelmed by a mix of sadness, fear, shame – feeling very vulnerable and helpless. At that moment we don’t need “diagnostic prowess or a deftly performed procedure.” At that moment what we need, what heals, what has a lasting impact on us is “kindness.”

This encounter had an impact on Dr. Scholtens because she thinks about it repeatedly over the next few weeks. She continues to feel comforted by the fact that he just sat there giving her all the time she needed, that he was moved by her distress. She goes on to say, “His kindness is more dear to me than anything he’s done for our family over the years, even his delivery of my daughter.”  Dr. Scholtens seems to have been humbled by her experience as a patient, recognizing that she has “been wielding something powerful without any respect for it.” This power is the impact that doctors can have on us when they allow themselves to be drawn into our emotional pain for a few minutes.

We are deeply touched when our doctor hears and understands when we are experiencing the fear that comes when our body has failed us and we don’t know how to fix it – or maybe fear that our painful body will never be fixed. We become very attached to a doctor who we have seen when we were most vulnerable and s/he acted with kindness. We also can be deeply hurt when a doctor who has touched us deeply doesn’t recognize our gratitude; doesn’t understand the importance of the relationship to our wellbeing. Relationships end for a lot of reasons and the ending can be even more painful when the pain isn’t recognized and acknowledged by our doctor. I was left feeling very alone and betrayed. I just wanted to hear the words, I’m sorry.


[i] Scholtens, M. (2011). Kindness. Canadian Medical Association Journal, 467-478.

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

Losing Control of My Life

When we get sick we need to shift our attention, and our energy, from our normal activities to getting well. I will be sharing information and my thoughts on the sick role in future posts under the category In Sickness and In Health.

In that first year I had a really hard time getting my mind around the fact that chronic meant forever, maybe because I was so afraid of what forever in pain meant for my work and play. I began to understand, but really didn’t want to know, that it meant I was never going to get well, that I would have some level pain and would need to work to maintain my energy – and I probably would never get back the life I had known. Although I had a strong desire to continue working full-time and to have a life outside of work, being sick seemed to become who I was and what I did. I had lost control of my life to sickness.

My life became weekly doctor appointments to adjust medication dosages, discuss ways to treat new symptoms, or for acupuncture for pain. Life was also consumed between appointments by doing things to get the most from my time with my doctor, like creating charts of sleep quality, or pain levels, or amount of fatigue. I was thinking about symptoms all the time which meant that pain and fatigue were controlling my life. Don’t misread me – I’m not criticizing what I was doing. This is what I needed to do and because of it I was slowly getting better. I wasn’t getting the life I had known back – but I was getting control of symptoms and I was hanging onto a sort-of life.

For a long time I fought hard to get my old life back by doing everything right but the progress was usually so slow that I wasn’t able to see it. Maybe I couldn’t see it because I was looking for evidence of my old life and wasn’t willing to recognize anything different. Sometimes I just got tired of fighting and then I would rebel. You have heard of the fight or flight response when we are in danger? Well I saw losing my life and my sense of self as a huge danger and it didn’t seem like fighting for health was working. My rebellion would involve something like a “flight away” from it.

In my anger, I backed off from what I had been doing. I tried to pretend that I wasn’t experiencing pain and fatigue. I tried to pretend that pain wasn’t controlling my life. I tried to tell myself that most of the time the pain wasn’t strong enough to make a difference in my life, but it was always there. I tried to convince myself that the pain didn’t keep me from doing the things I wanted to do, but the pain did interfere because it tired me quickly. And I discovered that pain was controlling my life, even if I didn’t want it to or told myself that it wasn’t. The pain was an ever present part of my life, even if it wasn’t intense or always in the same place. And the pain was so unpredictable. I continued to live with the frustration that there didn’t seem to be much I could do to make it better or know what made it worse.

These funks when I would try to flee from having FM didn’t last long – probably because they were less productive than facing the illness head-on. After stomping my feet and having my temper tantrums I would settle down to figuring out what I needed to do to control my symptoms and continue to focus on living my life. And believe me, being sick never was at the top of my fun-in-life list – but it was there because that is what having a chronic illness means.

We can have control of our lives and maybe sometimes even control some of our symptoms of our chronic illness. I just had to figure out how.

Have you struggled with feeling you no longer have control of your life? Please comment.

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