More myths about couples dealing with illness:
Trust your doctor. He/she knows what's best for you.Yes, and no. As Ronald Reagan used to say, "Trust but verify." Do your own research. Your doctor does not have as much time as you have to dedicate to researching your condition. And chances are he/she primarily reads medical journals and attends conferences to keep up on new findings. You can read patient blogs and disease association web sites, in addition to reading medical journals. You may find data or see patterns emerging that have not caught your doctor's attention yet. Bring your findings to your doctor, with respect for his/her expertise. Ask if he/she has heard about what you learned from your research. If his/her response is dismissive and disrespectful to you, maybe it would be wise to find a more open doctor.
Couples can, and often do, share in doing this kind of condition-specific research. I did massive quantities of online research. In addition to finding valuable data, I found specialists from all around the world. Richard cold called them and asked them if they would be willing to talk to us and share their perspectives. Surprisingly, most did.
When a doctor tells you that you have a 10% chance of recovery, start making your end of life plans.A giant-sized "NO!" Doctors deal in aggregate data. They understand that for a given population with a particular condition, X% will live and Y% will die. But each patient is not an aggregate. Each individual patient is a case of one, and aggregate statistics and probabilities are not predictive at the individual level.
Here's a wonderful post by Dave Debronkart, a cancer survivor who was given 24 weeks to live and now, 3 years later, he is a brilliant patient activist:
Advice to a Cancer PatientThe key bit is that no one knows when someone else will die. No one knows when he/she will die. If your life span is shortened by disease, the question is - How do you want to spend your time? In fear of the unknown future, or in appreciation of the present moment?
When I hear a probability or a statistic, I immediately dive into the dark side and see myself in the past tense. Luckily, Richard is a scientist and can pull me out of my dungeon with patient, rational explanations of what probability really means. This is one way partner can balance each other. Use the strengths you have as a team to fight against the gloom of a doctor's prediction.
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