Well, it is day four of Diabetes Blog Week and the topic today is about our experiences with
healthcare. In this post, I shift the focus a bit to an ideological issue I see as pervasive in the medical community. It has to do with imagined hardship.
Last year, while working as a bartender, a woman pointed to the tattoo on my arm that reads “DIABETIC” and asked, “are you diabetic?” I responded, “yes, I have diabetes.” It was a slow day at the bar, so I entertained her string of run-of-the-mill diabetes questions.
No, diabetes is not as dichotomous as you would think. No, cinnamon does not reverse it, nor is there a cure. Yes, I do take multiple daily injections and prick my finger many times a day. And finally, yes, it could be worse.
Then, the woman offered me credit for my medical efforts, “Uh, I cannot imagine,” with the usual doom-and-gloom tone.
To me, her words translated to, “Your life must be awful.” I went home and reconsidered the disease-acceptance I had built up since the last conversation like this, about a month before. Even a little suggestion that the way I live is far from ideal is a reminder that others would not opt for my life circumstances. “No one would want this” is the thought I am left coping with.
There is a researcher named Peter Ubel who, along with colleagues, compared the way non-sick and able-bodied people expect to feel at the onset of a diagnosis, and the way sick and disabled people actually feel post-diagnosis. Ubel’s findings suggest that non-sick and able-bodied people are poor assessors of quality of life given medical complications mainly because they fail to incorporate adaptability into imagined scenarios.
Individuals like the woman I interacted with, can be narrowly focused on the potential pain of shots or the inconvenience of monitoring blood sugar. These individuals might play out one or two scenarios in which the mentioned diagnosis would limit a freedom they value. As Ubel mentions, the notion of adaptability is absent in the snap judgement used to decide the desirability of a particular lifestyle.
When we form an idea of what life would be like given X circumstances, we miss something. Malcolm Gladwell, in Blink: The Power of Thinking Without Thinking says, “We have, as human beings, a storytelling problem. We’re a bit too quick to come up with explanations for things we don’t really have an explanation for.”
In the context of today’s topic, I draw attention to the fact that among the individuals who overestimate the decline in quality of life given a new diagnosis, who underestimate adaptability, who form incomplete explanations based on limited information, are doctors.
Healthcare providers are not immune to faulty expectations. The trouble we face as a result of faulty expectations are the subsequent treatment options provided.
In my own healthcare experience, I’ve been denied CGM coverage because my management wasn’t ‘good enough.’ I have also been denied disability status because my doctor didn’t see diabetes as a disabling disease (put another way, my illness wasn’t ‘bad enough’).
My biggest frustration with our healthcare system is that the person with the least decision-making power is me, the patient.
I believe this stems, in part, from a system that elevates the physician’s, the payer’s, the industry’s perspective over mine. It stems from a system that values my life less because of diabetes.
Source: Ubel, P., Schwarz, N., Loewenstein, G., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4), S57-S62.
Click for the The Healthcare Experience – Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
The Chronic Scholar 
1. I have never ever considered adaptability as part how people with diabetes are viewed by people without diabetes. But it makes so much sense.
2. What can be done so that we, as patients, are the number ones? We’re the ones putting in the effort day after day after day and it deserves way more respect from “the system.”
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Several years ago my husband and I inquired about increasing our life insurance. We both went through a medical exam, were asked many questions about medications we were each on. My husband was on medication for high blood sugar, heart medication – I was on allergy medications and a low dosage of antidepresent. Neither of us had been hositalized for our illness or had any other problems. I was completely denied a life insurance policy based on my use of an antidepressant medication. I believe that our medical system has become so disconnected from a Doctor being able to treat their patients effectively. The patients not only have to deal with their own illness; but with a system that puts obstacles in the way of effective care. This Country has a medical system that ranges from managed health care systems HMO’s to private consierge doctors. HMO’s are the most restrictive in terms of care of the patient and the consierge group bipasses all or most insurance blocks. Definently a have and have not system. How do we fix this system? Not penalizing a patient for seeking good medical care. Not making a judgement call that one issue is worse than another. Stigmatizing a patient and pushing them away from good health care. These are all questions that a good health care system should be asking themselves.
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A family doctor and his nurse practitioner caught my diabetes, and they were mostly very kind. The NP did say “You’ll probably find 2 or 3 meals you can eat for breakfast and 2 or 3 you can eat for lunch and dinner and just stick to those.” I was so upset that my life was going to be so limited.
In reality, I eat way more variety now than before, and sometimes I think about calling to tell her my story so she doesn’t scare other newly diagnosed people. She definitely doesn’t understand what the change in quality of life is like for us.
I spend a lot of time wishing that I could at least be respected as an equal in the helath care world. After all, I’m the one who sees my condition 24/7. A doctor might see it for 2 hours a year at most.
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Heather, I love this post. The quotes are great to prove your point and it really is so sad that the person with the least decision making is the patient. I really hope that changes in the future.
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