Patch, Patch, Patch

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A few years ago, friend Barb said that old age is a process of “patch, patch, patch.” We weren’t that old when she said this but I laughed because I was old enough to begin feeling it. Now I really get it.

In my younger years I went to the doctor with the expectation that whatever was wrong would be fixed. I didn’t have any chronic conditions so with some pills, ointment or a scalpel my acting up body could be made good as new. In the past few years the goal of my medical treatment has shifted. First I am sent for an x-ray or some other more sinister test to make sure there isn’t something “serious” going on. Then the work begins. Patch, patch, patch.

They call it life-style changes – until there isn’t any style left to my life. Maybe I could keep a food diary to find out what is irritating my digestive system – although I already know what foods don’t agree with me. They are the foods I enjoy eating, that I eat when I am with friends or for date night. I’m flexible and can compromise by ordering something different – I suppose. But research says that, after good health, having a strong, caring social network is most import for graceful, happy aging. Sitting around a table, laughing with friends who love me, and sharing food that is good (but not good for me) is just what the researcher ordered. Trumps my doc, although I do a good job of eating healthy foods when I do the cooking.

Another life-style change I have been urged to make is exercising. Now this is even harder for me than changing my eating habits. It is a whole new concept; there is nothing to change because exercise was never a part of my life. I hated gym class. If I hadn’t loved math and English and government classes, I would have quit school because of gym class. Now I am working to embrace exercise as a life-style. I have my feet taped to decrease heal pain so I can walk. I go to a gym to keep my core and legs strong so I don’t fall. I climb stairs to… well, to keep my titanium knees working so I can climb stairs. I carry a step counter in my pocket to motivate me to take a few more every day to keep my bones from breaking. Patch, patch, patch.

I think I’ve accepted the fact that my body is wearing out, meaning that I will face deterioration for the rest of my life. Put like that, it hits hard. It is scary. But I have also felt something close to relief since I accepted this fact. I am no longer fighting a losing battle of trying to get back the body I had 20 years ago. It has helped me focus on what I can do to maintain as much functioning as I can while realizing that I can also relax with the flow of time. There is real joy in taking a guilt-free nap on those days when I need one.

I’ve never been happier. I think this a lot but hesitate to say it out loud. There is a part of me that says that can’t be. How can a person be happiest at 70 when her body is falling apart and death is right around the corner? Wasn’t I happier as a newly wed, as a young mother, when I went back to school, when I was having a successful career? I was very happy then, but this is where I am, and my life is the best I can make it for who I am, what I am, and where I am. I can’t be who I was, and don’t want to be. To add to the lyrics that inspired me in another decade, “I am woman. I am now.”

Doctors & Patients: A Collaborative Relationship

Fibromyalgia

Fibromyalgia (Photo credit: Kindreds Page)

When I developed my chronic condition the first thing that happened to my life was that I started spending a lot more time in my doctor’s office. So much time that I thought I should be collecting frequent flyer points towards a free office visit. Or I should be given my own examining room with a recliner, a stereo system, and wet bar – and stocked with my favorite magazines. The nurses kept telling me they were working on it in the basement. What I received was a lot of time to read novels while I waited and time to think about this relationship that was forming. Through these frequent visits we learned how to work together and formed an excellent working partnership. In a series of posts I will be sharing with you what I believe made our relationship work so well and especially what it was about the relationship that contributed to my healing.

Originally I had written a section on what patients need from a doctor and then another section on what patients need to take to the relationship. As I was editing them for posting I realized that our relationship worked because we each brought complimentary qualities, knowledge and skills. We were collaborative partners with a shared goal of controlling my symptoms and increasing my functioning. According to Robin DiMatteo,[i] patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life. Continue reading

A Working Partnership

Having a doctor with whom we have a good working partnership is very important for us when we have been diagnosed with a chronic illness and are trying to put our life back together after the diagnosis. It seems that patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life[i].

The type of relationship we need with a doctor is different under different circumstances, and our needs are influenced by personality characteristics, culture and can vary with the severity of symptoms and illness. But our reality when we are attempting to get the symptoms of  a chronic illness under control is that we will need to spend more time attending to our health care needs and this requires maintaining a good working partnership with a doctor. With the help from a doctor who we trust, our symptoms are more likely to improve, we are more likely to regain functioning, and will be able to sort out what activities from our old life we are able to keep or resume, which ones we can keep but in a modified form, and which ones we will let go of.

 The excellent working partnership that I had with the family doctor who helped me get control of my fibromyalgia symptoms was an important factor in my learning how to manage FM symptoms, regaining a sense of who I am, and gaining a sense of normalcy that is allowing me to thrive. Finding a doctor I could work with didn’t happen purely by chance or totally by divine intervention. Before I developed fibromyalgia, I needed a general practitioner and visited several that I never went back to. Some of them did a good job of treating the medical problem for which I made the appointment, but I just didn’t feel right about how the doctor related to me.

 When I left my first appointment with the doctor I finally chose, I had the impression that he was competent, listened well, and showed an interest in me as a whole person, not just some symptoms. When I started developing symptoms of muscle weakness, muscle pain and fatigue he took them seriously and made referrals to specialist that resulted in a very thorough and thoughtful assessment but not a diagnosis. During this process he was responsive, genuinely concerned, and caring.

I decided to go to the Mayo Clinic, with the support of my doctor, to see if they could identify why I had gotten so sick so quickly. Additional testing had the same results but the doctors at the Mayo Clinic gave me the diagnosis of Fibromyalgia. The fact that I received the diagnosis there and went through their Fibromyalgia educational program seemed to give legitimacy to the diagnosis. Their Fibromyalgia Clinic also provided recommendations for treatment that I took home and these provided a starting point for my doctor as we worked together to decrease symptoms and increase my functioning. Fibromyalgia is very difficult to treat, however, and we had to work hard to maintain our relationship.

 My relationship with my primary care physician didn’t begin to feel complicated until I was faced with symptoms that doctors couldn’t diagnose and then with a chronic illness that not much was known about. Some early experiences in life made it difficult for me to trust that doctors would hear my complaints of pain and respond with caring and compassion. I wasn’t hostile towards doctors – I just didn’t trust them to hear me and take care of me. I found that as my need for help with health care increased, my anxiety over asking for help escalated. I realized that I needed my doctor in a way that I had never needed a doctor before and I needed to learn how to relate to him in a way that involved trust. 

Comment from Dr. Taylor: A barrier to having a good partnership is that Fibromyalgia is a gut-wrenching problem for the patient and a daunting one for doctors.

Developing a relationship built on trust requires something from both individuals in a relationship so I have prepared a series of posts about the characteristics that we need in our doctor and also what we, as patients, need to take to the relationship. I write from what I have learned through years of reading and personal experience and I hope that my writing will stimulate your thinking so you will identify what is important for you in a good doctor/patient relationship. I am now looking for a new doctor and am amazed at how hard it is because even though I know what I need, each doctor has a unique style and personality and it takes time to discover compatibility.  I need a doctor who believes FM is real and can tolerate the frustrations of treating something s/he can’t heal. I wouldn’t agree to marry someone on a first date and I’m finding I don’t want to commit to working on a relationship with a doctor after one visit. The doctor/patient relationship is a lot like a marriage in that each relationship is unique because of the combining of two unique personalities.

 As I write these posts I will be sharing what my previous doctor taught me about how to work together, including his comments in the sidebars. I had originally written these posts as a chapter to be published in a book and he read and commented on that material.


[1] DiMatteo, R. (2004). Doctor-patient communication. In N. B. Anderson, Encyclopedia of Health & Behavior (pp. 261-265). Thousand Oaks, CA: Sage Publications.

S/he Loves Me, S/he Loves Me Not: An Unequal Relationship

Since I lost my doctor (isn’t there a really old country song with a similar title?), I have been thinking a lot about the nature of the doctor/patient relationship. I’ve gone to doctors from whom I was basically purchasing a service but that isn’t a relationship. What I have been thinking about is the type of relationship that is built when a doctor helps us through a very difficult health problem by not only being competent but also being kind (see my post on Kindness). Being sick generally results in feelings of helplessness, and when we have an illness that we know doctors may not recognize and take seriously, we feel very vulnerable to not getting our health care needs met at best, and being abused at worst.

What I have read (from both the patients’ and doctors’ perspectives) has led me to the conclusion that it isn’t the patients’ fault (although some patients can be very difficult and uncooperative) or the doctors’ fault (although some doctors can be disrespectful and rude). As my doctor told me, forming a good partnership is difficult because fibromyalgia is a gut wrenching problem for patients and a daunting one for doctors. Here are my thoughts on this relationship.

One of the characteristics of a good doctor/patient relationship is that the doctor is genuinely caring and expresses concern about our pain and distress. The doctor is there for us when we feel our worst, are most fragile and are helpless in helping ourselves. The doctor is there with knowledge, skill, and hope of relief. When we are in a good relationship we believe that the doctor truly cares about us and doctors frequently underestimate the power this has to heal (once again see post on Kindness).

Inherent in this relationship, however, is the same relational inequality as several other relationships, such as parent/child, teacher/student, and therapist/client. Jean Baker Miller[i]  was the first to make the distinction between unequal relationships that are temporary, designed to facilitate human growth and development, and unequal relationships that are permanent and oppressive. Unequal relationships should only be unequal long enough for the person who is “stronger” to help, nurture and enable the person who is “weaker” until dependency is eliminated.

We want our doctor to help us heal and learn how to take care of ourselves so we can be healthy, functional and not dependent on the doctor any longer. A chronic illness, however, complicates our goal of becoming independent of medical care. With a chronic illness the goal becomes the alleviation of symptoms and/or making lifestyle changes that will reduce the severity of symptoms – until something increases symptoms again.

The issue for the relationship becomes how both parties can handle dependency needs so the doctor doesn’t feel depleted by our needs that seem to go on and on – and we don’t slip into chronic helplessness because nothing ever seems to really make a long-term difference. Here are some journal entries where I am attempting to sort this out:

Being responded to by my doctor has felt so good, that I want him to continue to take care of me. Time to cut the ties except when I am stuck. My new normal has to include active participation in my world of work and family. I want to age actively and engaged. (June, 2007)

 The combination of continued fibromyalgia pain and the fear that I won’t be able to distinguish it from acute pain that signals a new problem, or worse that I will overuse him for pain that is just FMS pain that I should be able to live with, wears on me. I keep thinking that I should relieve all pain that I can (with my doctor’s help) so I have more ability to tolerate the pain I can’t control. But I’m beginning to feel like a hypochondriac going to the doctor every week with a new symptom. (July, 2007)

 Once again I asked my doctor about how often I needed to come for acupuncture and this time he asked if I remember what he told me last time. He is trying to tell me that I am doing fine and that I only need to see him when I’m not. What I really needed to say was that his emotional support has been as important as his medical knowledge, honesty, diligence, intelligence, and analytical thinking. I will miss his emotional support when I don’t need his medical help. I am shifting to a position of strength and control, living freely and with confidence.

Maybe I can live with less emotional support from my doctor because I have internalized his emotional support and I have such a strong support system with my husband, family, friends and colleagues. (September, 2009)

During this time I was wrestling with a lot of issues. How do I know when I’m doing well when I very seldom feel really well? How do I know if the symptoms are something I should have checked out (with yet another doctor’s appointment) or just handle on my own? When I have an uncomfortable symptom, when should I ask my doctor for help and when should I just live with it? How do I deal with my need for emotional support from my doctor that is as important as my need for medical help? How do I get my needs met by my doctor when I’m so afraid he will get tired of me and find me a burden? Here is another journal indicating that I was still wrestling with these issues two years later:

When I have a lot of pain I begin to feel like a whiner and dread going to see my doctor because I know he must think this is going on forever. Well it is going on forever – it is chronic but how much is too much? I feel like I’m not telling him anything new – same song, 3, 263rd verse. When will he get tired of me? When will he find me boring? (10/11)

 Most of the time I trusted and appreciated that my doctor cared about me but his caring also caused some vague anxiety. When someone is willing to work with us, expresses caring and concern, who goes the extra mile to help us, we feel appreciation and gratitude and love for that person. It is an intimate relationship (emotionally but not sexually). Although doctors do form positive feelings towards patients they have helped, the patients have a stronger need for and feelings towards the doctor. It is possible for them to care deeply about us because it is a part of our human nature to be drawn to and feel compassion for another who is struggling[ii], but we are one of many patients that they are called upon to help on a daily basis. They aren’t suppose bring their vulnerability to the appointments so they don’t form the same type of attachment. Although doctors need patients for economic reasons and to do the work they are trained for, they don’t need individual patients with the same sense of vulnerability and sometimes urgency that patients need them.


[i] Miller, J. B. (1976). Toward a new psychology of women. Boston: Beacon Press.

[ii] Kegan, R. (1982). The evolving self: Problem and process in human development. Cambrige, Massachusetts: Harvard University Press.

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