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."
David, I received your request to connect on LinkedIn. My name is Sheryl McIntire and I am the Community Outreach Manager for Patient Power. I admit it, I went and looked you up (you can't be too careful these days), and found your blog. One of things I do for Patient Power is recruit strong bloggers who can speak to specific cancers (MPN's for example) and have an accessible message and style. You clearly qualify. If you are interested in writing a blog for us, please contact me at sheryl@patientpower.info. Thank you.
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