I was reminded of a strange reality this weekend.
When I was diagnosed with myelofibrosis four years ago, I was free with information about my diagnosis and my "mean survival rate" at that time. People were very sympathetic and kind. Some were acquaintances who I see infrequently.
Fast forward four years. I meet those same people at some event and they ask about my situation. They wonder why I am still walking around - seemingly well when I had a fatal diagnosis four years ago.
Was it a misdiagnosis? Have I been healed since then? Was I not telling the truth four years ago? They don't usually ask these questions directly... but they are there as a subtext.
No problem - I'm happy to explain. But for most people their eyes glaze over a few sentences into the explanation and they are are at the limit of their interest. They are ready for me to stop talking and leave them alone. I believe they are thinking - "OK - Dave has some serious disease - but it obviously isn't very serious right now and he might live a long time with it. We don't need to be too concerned with that right now."
So my strategy is to give people a shorter version of the answer. "Yes, I still have this disease, but for right now it is chronic and not acute. Thanks for asking."
When I was diagnosed with myelofibrosis four years ago, I was free with information about my diagnosis and my "mean survival rate" at that time. People were very sympathetic and kind. Some were acquaintances who I see infrequently.
Fast forward four years. I meet those same people at some event and they ask about my situation. They wonder why I am still walking around - seemingly well when I had a fatal diagnosis four years ago.
Was it a misdiagnosis? Have I been healed since then? Was I not telling the truth four years ago? They don't usually ask these questions directly... but they are there as a subtext.
No problem - I'm happy to explain. But for most people their eyes glaze over a few sentences into the explanation and they are are at the limit of their interest. They are ready for me to stop talking and leave them alone. I believe they are thinking - "OK - Dave has some serious disease - but it obviously isn't very serious right now and he might live a long time with it. We don't need to be too concerned with that right now."
So my strategy is to give people a shorter version of the answer. "Yes, I still have this disease, but for right now it is chronic and not acute. Thanks for asking."
