Good Patient Syndrome

By: Loolwa Khazzoom, Founder, Dancing with Pain

July 29th, 2009 • Patient AdvocacyPrint Print

Three years ago, I went in for an MRI. I was electrocuted. I screamed for the technician to stop, but she couldn’t hear above the noise of the clicks and bangs. So flailed my legs around. The technician pulled me out, clearly irritated at me for disrupting the test. When I told her what was happening, she replied that it was impossible. She did, however, offer to put a folded towel beneath my lower back so that I wouldn’t feel the “discomfort.”

She put me back in again and started off with a few tester clicks and bangs, which did not shock me – as I reported to her through the microphone in the MRI. As soon as the real test began, however, I was electrocuted again. Repeatedly.

This time I didn’t yell. This time I didn’t flail my legs around. I stayed put. I waited for the four minute session to end. I did not want to irritate the technician. Instead I endured what was quite possibly the longest three minutes of my life, literally counting the seconds until it would be over. But then, one minute before the test was to end, my lower back started spasming violently, right where I was feeling the shocks. It occurred to me that I might not just be enduring four minutes of discomfort. I might actually be endangering myself.

So I flailed my legs again. The technician was as annoyed as I had feared, this time more so than before. Again she denied that the machine could possibly be shocking me. It must be something else, she insisted. Regardless, she put a pillow under my back, to buffer me more than the towel had done. She sent me back into the machine.

This time, I received very vivid, intense shocks. This time, I flailed my legs around to be pulled out. This time I told the technician that something was very wrong with the machine. This time I refused to continue the test.

But by then it was too late. Something was horribly wrong with my back, which was in excruciating pain. And it didn’t end there. For the next six months, my back went out completely, almost every day – which never had happened before the MRI. I was like a beached whale on my bed on a regular basis. Three years later, I am still recovering from the residual effects of pain and limited mobility.

Which begs the question: Why did I – an otherwise educated, intelligent, self-aware, outspoken, powerful, and assertive woman – not better advocate for myself? Why did I agree to go back into the machine? Why did I put my discomfort with the technician’s annoyance above and beyond my concern for my own safety?

Over the years, after speaking with many individuals who have chronic pain and other forms of chronic illness, I came to find I was not alone. It seems, in fact, more common than not for patients to defer to doctors and bodyworkers, even when the patients know that doing so is not in their interest. It’s a phenomenon I have come to call the “good patient syndrome,” caused by the following factors:

1.There is a power discrepancy in the health care hierarchy:

The practitioner is positioned as the authority figure and the patient as the compliant follower. This power discrepancy is reinforced through numerous medical symbols, social norms, and legal points of reference.

2. There is a stark reality that the life of the patient is literally in the hands of the health care practitioner.

It can be as dangerous as life-threatening for a patient to behave in any way that may undermine a doctor’s sense of team spirit with the patient. More often than not, the prerequisite for engendering that team spirit is submission to the doctor’s agenda.

3. There is a sense of trust that “doctor knows best.”

Most patients, especially newer patients, have little or no medical knowledge of their condition in particular or their bodies in general. They feel at a loss to be at the helm of their own health care, being that they have not gone to medical school. They are furthermore taught that doctors are the well-informed to make medical decisions for them, and that doctors have patient interests at heart, and that it is safe to follow a doctor’s lead.

4. Those with chronic conditions are usually overwhelmed.

Those churning through the medical system with a chronic condition are already overwhelmed with the number of doctor appointments they have to schedule and the number of health-care-related activities they have to do (like icing regularly or doing physical therapy or taking medications around the clock) in order to function. Tending to their health is a part-time or full-time job that comes on top of whatever other life obligations and basic needs they have – working, parenting, shopping, eating, sleeping…

In addition, those with a chronic condition usually have limited ability to work and are isolated from community — translating into limited financial and human resources and therefore a reality where chronic patients have to do more things themselves than others without their medical condition. What’s more, in the bodies of chronically ill patients, internal energy is physically depleted 24/7. Challenging a doctor is tantamount to risking having to find a new doctor. Starting again with another practitioner means adding to the time and energy that is already so scarce in the patient’s life.

5. Those with chronic conditions are often desperate.

Even if chronic patients have the good fortune of being insured, they usually are spinning through a managed care hell. They are not allowed to leave their current plan, because no other plan will take them. Meanwhile, there are a limited number of doctors available through their current plan. It is therefore a major risk to potentially alienate one’s current doctor. Not only might the patient run out of other options for health care providers, but the patient may be labeled a “problem patient,” meaning s/he will not be taken seriously or responded to appropriately by other practitioners in the network.



Comments

Jasmine July 30th, 2009

What a scary tale, but such a valuable lesson.  Great post :)

JoAnne February 27th, 2010

Wow that is scary, but I can see myself in some of those situations beinggery. “I” say it is failed, they don’t. Accroding to my MRI my back surgery was a sucess. Excuse me, then why am I in terrible pain 24/7 and on 3 different pain meds that only take the edge off the pain. Why is it I can’t walk without a walker and not too good with one. I’ve lost my sense of balance and I fall a lot and hurt myself. And on and on. . . so, am I labeled a problem patient? Probably.

MattP March 6th, 2011

That is crazy what happened to you.  If there was any justice the hospital should’ve fired that tech and gave you a settlement! The same goes for me too. I hurt my shoulder in Jan ’10 and saw a chiropractor….Ever since the moment he adjusted my neck I’ve had tingling,numbness, and weakness in my right arm; Difficulty swallowing and passing stools;  Constant headache and blurrred vision; And # other things! I asked him what happened and he replied, “You’re all out of whack! Give it some time and you should be alright”.  So I did. Now I’m much worse and going to doctors  twice a month.  I don’t know what to do about this, I’m only 25!

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