Hey, that's MY hope! get your own!

Coincidentally, just when I was giving the issue of compassion and reality in medicine and disability some thought, I had the good fortunate to read Orac's post on just this issue. I have been struck by some of the responses in the forums by people who believe that a doctor telling you that you can't do something or informing you of your body's limits is wrong. This strikes me as a failure of both the medical community and patients in general to understand each other and to understand our own responsibilities as patients and doctors.

In the forum discussions several people have mentioned that when doctors tell them or people they know that they will never do something again (walk, sit up, climb mountains) that they lose the hope that is precious and necessary to them in their recovery and day to day lives. I can absolutely see why they would feel that way; we look at doctors as the people who know far more than we do, who know best, and who can somehow magically understand exactly how we will react to a broad range of criteria. The truth is, whatever hope we possess is ours alone to nurture; I can no more take away someone else's hope than they can take away mine. This is not to say that negativity doesn't harm us, as it certainly does. But does information from a doctor, even if it is prognosticative in nature harm us? If we know that we are responsible for our own state of mind (to an extent), then where does the physician's responsibility to be steadfastly plain in their dealings with us to the point of outright prognosis begin and where does our own responsibility to ourselves and our acceptance of reality end?

I have a unique perspective on this (of course) because I believe I was one of the rare ones who was given too much information and not enough. Generally, if you tell me something about my health I am going to have a pretty good understanding of what you mean and I will always want to hear it in the most reasonable, factual way. But there is a problem: I've mentioned my extreme disconnection from emotion* when attempting to understand things and when trying to puzzle through problems, so when emotional language is used I believe it if it is coming from a credible source. I think this, allied with the reactions of my friends and family to the same language being far more emotional than mine, made me think it was something we were supposed to be emotional about. This led to my misunderstanding of the odds. What I mean is: I had every doctor telling me how serious my case was, how dire things could be and were at times. Every time I had blood work I seemed to add a new doctor to my cadre of specialists to deal with some new problem that had shown up. Every time I got dizzy I was admitted to the hospital, sometimes for a week at a time. Every time I got the sniffles there was cause for alarm and vigilance; hell, a nosebleed was a freaking catastrophic event. Add to all of that the dire language used in my paperwork from Northwestern in their attempt to first qualify me for the stem cell transplant and then to get my insurance company to pay for it, and what do you have? A whole lot of people thinking and acting as if I was going to die at any moment. And don't forget! it could happen. Which is still true.

The reason I feel the need to detail all of this is because I think it's a good example of just how big of a chasm we are forced to bridge when we begin or continue to be patients with chronic or fatal diseases. Physicians are fallible and unable to get inside our brains or lives to see just how to communicate with us and to know what we understand. If I feel muddied by the cacophony, imagine what someone who isn't as literate, literal and educated might feel! Granted, my education and literal nature might have gotten in the way more than anything because it was assumed I could extrapolate exactly what was necessary to understand the larger meanings. I noticed a distinct change in attitude in physicians who were first meeting me when they found out not only that I was a prof, but that I taught philosophy; they often changed their tone and manner to sort of include me in the conversation as someone who would understand what they were saying and handle it better than someone who was not trained as I am. I think the assumption would be that I have a big brain, can understand the macro and the micro concepts and I have an intimate relationship with reason; honestly, it's a reasonable thought process and one I would adopt, knowingly or not. There I was, receiving wave after wave of information without and remediation or break; add a large slice of denial into that mud pie and you get a pretty clear picture of what it was to be me two or three years ago. It is only now that I have found a good mix of the right medications and feel as normal as I get to feel that I am able to look back and see that people were being downright hysterical. People being, by the way, my doctors.

What would have happened in the above scenario if they had told me only half the truth? Would it have been better if they had left the direness of my situation and diseases out of it? Actually, no. If I didn't know just how serious it all is, my priorities might not have changed; I never would have accepted my status as a PWD, and I would have assumed that I was going to be "normal" again. In other words, I would not have been able to accept that my normal was now different from the normal I had known before the big bang. To say that I should still be striving for the normal that was before is to deny the fact that the normal I know now has as much validity, richness and integrity as the normal I knew three years ago. More so, perhaps. What I am trying to get at in my long winded way is that there is a difference between offering a patient hope and offering them nothing. When physicians withhold information from us, consciously or not, they are taking away our hope for the future. They are consigning us to the wasteland of ignorance, false starts and dead ends; they are, at bottom, not allowing our normal to be what it is, but forcing us to try and live up to an inflated and false idea of what our normal should be. That is where the responsibility lies, I believe. Physicians must learn to accept the fact that humans change, humans degrade. We need physicians for a reason, right? We need them because there is something wrong or to prevent something wrong. Denying that fundamental truth and clinging to the notion that it is the physician's job to do anything other than diagnose, treat, and explain disease and disorder is expecting too much. It is also true that when physicians refuse to deal with disease plainly and realistically, they are more surely denying their very job as a physician than if they were to refuse to treat us for disease.

It comes down to this: A physician has the duty as a physician to diagnose, treat and explain the processes and diseases they are trained to deal with; a patient has the duty to accept the physician in his or her limited role in our lives and not expect them to be more than they are capable of being. Do we really want our rheumatologist or spine specialist to be the person who supplies us with hope? Of course not. They can't supply us with hope, that is ours and ours alone; all the physician can do is give us the information they have in the best and most honest way available to them with the ever present acknowledgment that life is a uniquely random and unknown game. Statistically speaking, if your spinal chord is severed, you will not walk again as things stand today. (er, no pun intended) But that does not mean you will not still have a life worth living or you will be more limited than you were before your accident. It may even mean you have more opportunities than you had before; the point is, the emphasis should be on change, not the taking away of anything. Here's the kicker: that's ok and there is still hope in that life and future. It may not be the hope you had the day before your accident or degeneration, but it is hope nonetheless. Because we cannot stand still, cannot go backwards, cannot go sideways, the progression forward is the very mechanism and definition of hope. Without the forward movement, all things end and the necessity for hope dies. It is in this way that the acknowledgment of hope, while changed, is still very much a part of our lives as humans, no matter what we're told by a physician, advisor, family member, or friend. It is in this that our responsibility to ourselves and to the knowledge we must take in from our physicians exists. And it is in this acknowledgment of our autonomy and our responsibilities as patients that physicians can confidently do the job of diagnosing, treating and explaining our physical health. What more could we ask?

*I am not an unemotional person, but I do prefer reason as a general rule.


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