In a recent post I offered some general suggestions for using open notes in healing ways. Today I'll introduce some practical tips for overcoming some of the challenges Healthy Survivors may face.
Language: You may feel offended by an acronym, word or phrase. First find out the intended meaning before drawing conclusions. It likely means something different in medical settings than in social settings. [For example, "SOB" stands for shortness of breath.]
Prognosis: You may feel disheartened -- or despairing -- after reading your prognosis. Again, be sure you know what a word means before drawing conclusions.
Words such as poor, guarded, grim and grave can feel like stabs to the heart, even if simply reinforcing something you already know. That's because seeing it in print can make it feel more real, even when nothing has changed from yesterday.
Words such as favorable, optimistic and good can trigger fear or disappointment in some patients, too. As above, seeing a prognosis in print can make the recent (or current) threat to your health and life feel more real. [Note: Before your diagnosis, you likely did not hear or see a prognosis for your life.]
Always keep in mind that a prognosis is NOT a prediction. Nothing pleased me more than when one of my patients did unexpectedly well and proved my prognosis wrong. [Note: When I entered a clinical trial to treat my second recurrence in 1993, my prognosis was ~2 years.]
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