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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