In an article entitled "Living with chronic illness: a phenomenological study of the health effects of the patient-provider relationship," Chesla C. Fox noted that chronically ill women who reported a connected relationship with a health care provider and viewed their care as a partnership had more confidence and motivation to manage their illness and a greater sense of well-being. More and more studies like this one are popping up and telling us that the inter-personal relationships between patients and caregivers are key in the treatment outcome. It seems silly to say that patients will be more compliant if they like their doctor, but it is a fact.
The Junior High Effect
One of the rarely discussed but often difficult parts of many medical treatments is the effect on one's ability to go to the bathroom. Anesthesia and narcotics can make a person unable to go to the bathroom while some other meds will cause frequent, unpleasant and unwelcome trips. Talking about poo and pee is not encouraged in this culture (is it in other cultures?) but, rest assured, this is a major issue for many people dealing with illness and medicines. For those who are suffering with stomach issues, it really can be unbelievably miserable.
After my first transplant, it took a long time for my stomach to recover from the anesthesia. In fact, I was eating with no "output" for 14 days. Yes, two weeks. I had a raging and insatiable appetite from the steroids and, despite my condition, continued to eat and eat long after I had become a 'Buddha Belly.' It was rather astonishing how much my stomach expanded and I can honestly tell you, I rarely thought of much else. When I wasn't shoveling food in, I was lamenting what I had just eaten. I walked the halls as much as possible trying to make things move. It ranged from highly uncomfortable to almost unbearable.
By week two, I was obsessed with my stomach and growing increasingly irritable. I was snapping at everyone who came in the room. Everyone, that is, except my doctors. Somehow, when the doctors were rounding, I was able to turn on my happy patient face. We laughed and joked about my misery and being F.O.S. (full of shit). No matter how bad I felt, when they walked in my mood and demeanor did an about-face.
I wasn't playing a game and I wasn't even faking my cheer. When I saw my team walk in the door, I really did feel an energy boost. And it wasn't just me. When the docs came in, my father became very talkative and jovial. My mother became sweet and proper. My sisters beamed with gratitude and smiled widely. My brother became very professional and authoritative. Each of us changed in a very noticeable way when the doctors came by. The family picture they saw when they walked in my hospital room was not a false one but it wasn't an entirely natural one either.
So what is that about? Why did I go from whining, complaining and crying to laughing and grinning just because men with white coats walked in the room? Why did my whole family change their tune? I can only think of one explanation. This is a result of The Junior High effect.
As much as we would like to believe that we are all grown up now, the truth is we will forever carry with us a piece of junior high. Those were the days when all that mattered was who was popular, who had cooties and where you fit in the pecking order. In those days, a good day might have been marked by the most popular girl in school asking if she could borrow your pencil and actually knowing your name. A bad day would have been when the most popular boy in school said you stuffed your bra. Whether you were a jock, nerd or drama kid, the impressions of social ranking were branded on our brains during our time in junior high.
When my doctors walk in the room, I am the geek and they are the cool kids. I am excited by the attention they are paying me and this emotion masks some of my physical problems. I want them to like me, to praise me and to accept me as one of them. Over the years, my reaction to this desire for acceptance has varied. Nonetheless, whether I was rebelling against their power over me or trying to prove I was worthy of prom queen, the person they saw before them was not always "the real me." Considering the amount to which physicians rely on observation in treating patients, this is worthy of noting. So, to the "cool kids," what you see may not be what others see when you leave the room.
Do You See Me?
I have been seeing some of the same doctors for nearly 20 years. They have seen me sick and they have seen me healthy. They have seen me in the depths of depression and on top of the world. More than anything, they have seen me at my most vulnerable.
Perhaps it is that past vulnerability that drives me to "prove" to them that I am now strong. Recently, I sent my doctors and nurses an email about a talk I was doing in the hospital. It really had nothing to do with them, I was going to be speaking to medical students. So why did I send the email? Because I want them to see me, to see the person I have become. I want them to witness my work and approve of me. Like a little child, I want them to be proud of me.
They, perhaps even more so than I, know the fragility of my life. Because of this, they may never see me as I see myself and that bothers me. I spent so long living a smaller life than I was capable of, I want them to now understand my true potential. I want them to see me differently. I want them to stop viewing me as "just a patient" and see me as a colleague of sorts.
It has only been within the last year that I have been able to see my doctors as human beings and not superheroes or villains, as the case may be. Perhaps with time, as I continue to pull back the curtain, I will find they do see me as a whole person. Or, even better, perhaps one day I will overcome my childish need for their approval and just appreciate our relationships just as they are.
What I Know Now
I hate to add more weight to an already heavy load, but being a good healthcare professional is not only about being skillful with medicine. There is immense power in the patient/caregiver relationship. A physician's interest in a patient's well being can inspire a desire to be compliant and even spark a person's will to live. Equally, a lack of interest can make a patient feel isolated and without the support needed to make a valiant effort at getting well.
Whether you like it or not, healthcare professionals are often regarded as the top of the line in human beings. An encouraging word or a snide comment can make all the difference to those who admire them. When we are weak, we may rely on the strength of the professionals around us. When we are well, we may seek to prove ourselves worthy of their care. Being an effective nurse or doctor means being willing to also be a friend and a parent. Being Student Body President isn't easy.
Tuesday, March 10, 2009
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4 comments:
Wow, you are good! Take a bow. Everything you said is so true, I'd just never really thought about it before.
I have had Crohn's for years and now I will publicly say something potentially embarrassing. When I first met my current GI, I knew why people fall in love with their doctors (not that I have, LOL). To find a doctor that actually cared how I felt was so overwhelming, I cried when I talked to him the first time. And I want to feel good, not just for me but for him too.
God bless you. I am a cancer patient & have an okay relationship with my doctors. Even harder than being a sick patient is to be an advocate for an elderly cancer patient in a society that values universal health care over the lives of the elderly. All the best to you.
http://advocateyourself.blogspot.com
Wonderful post. I've pondered the same things as we've met with doctors for my 3 yo's chronic illness. I've noticed that even my son will try to brighten up for the doctors. He wants them to be pleased with him.
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