It is my opinion and my direct lived experience that yes, we should all start trying to prevent our little chaotic sacks of bio-molecues from going amok.
I would emphatically suggest starting here: Read scientific papers. Read the academic literature.
Read. Know you can read.
And, please bear with me: Know that your doctors most probably do not read.
It sounds so paranoid or bitter. I haven’t found another way to put it into words.
If only for the fact that doctors are usually very busy people. Many of them are probably overworked.
And even among those doctors that do read, a doctor will not be able to view the literature from the urgent perspective of the individual. We are all specialists in ourselves, know the details of our lives, our family history.
It is possible for a layman to read academic literature. To the point that you can help the doctor help you. Don’t tell anyone you can’t read.
There is a severe disease in my close family. The doctors missed the diagnosis for years. Diagnosis happened through sheer luck, insistent advice from a nurse speaking “out of their place”, and our persistence. At diagnosis, biomarkers were so far out of range that it can be known that death would most probably have occurred within days.
After this, we read academic literature.
After this, we trust the doctor like we trust our parachute.
As proof that a layman can read academic literature to save their life and preserve their health:
After the diagnosis, papers we have read have clearly shown that a course of action ordered by a doctor is wrong, harmful, potentially life-threatening. Multiple times. Harmful prescriptions, or abject denial of severe side-effects known to occur in some people. We have had to step in and intercede. The crucial part: This has then been confirmed by another doctor’s opinion. Multiple times.
Relatedly, I am in a Facebook group for $condition, and I can’t tell you how many times I’ve seen people post that a doctor prescribed them $treatment. Although $treatment is a very common thing to give to healthy people, $treatment is KNOWN to potentially cause death in patients with $condition. The other patients in the group always jump in and alert the original poster to the danger, but I can’t believe it still happens week after week and year after year.
My point is that fully outsourcing your healthcare—even to specialists—is a very bad idea, especially if you might have a rare condition of any sort. No doctor will ever care about you/your family member the way that you do. And they are always so pressed for time that mistakes are to be expected.
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It is my opinion and my direct lived experience that yes, we should all start trying to prevent our little chaotic sacks of bio-molecues from going amok.
I would emphatically suggest starting here: Read scientific papers. Read the academic literature.
Read. Know you can read.
And, please bear with me: Know that your doctors most probably do not read.
It sounds so paranoid or bitter. I haven’t found another way to put it into words.
If only for the fact that doctors are usually very busy people. Many of them are probably overworked.
And even among those doctors that do read, a doctor will not be able to view the literature from the urgent perspective of the individual. We are all specialists in ourselves, know the details of our lives, our family history.
It is possible for a layman to read academic literature. To the point that you can help the doctor help you. Don’t tell anyone you can’t read.
There is a severe disease in my close family. The doctors missed the diagnosis for years. Diagnosis happened through sheer luck, insistent advice from a nurse speaking “out of their place”, and our persistence. At diagnosis, biomarkers were so far out of range that it can be known that death would most probably have occurred within days.
After this, we read academic literature.
After this, we trust the doctor like we trust our parachute.
As proof that a layman can read academic literature to save their life and preserve their health:
After the diagnosis, papers we have read have clearly shown that a course of action ordered by a doctor is wrong, harmful, potentially life-threatening. Multiple times. Harmful prescriptions, or abject denial of severe side-effects known to occur in some people. We have had to step in and intercede. The crucial part: This has then been confirmed by another doctor’s opinion. Multiple times.
I second this advice.
Relatedly, I am in a Facebook group for $condition, and I can’t tell you how many times I’ve seen people post that a doctor prescribed them $treatment. Although $treatment is a very common thing to give to healthy people, $treatment is KNOWN to potentially cause death in patients with $condition. The other patients in the group always jump in and alert the original poster to the danger, but I can’t believe it still happens week after week and year after year.
My point is that fully outsourcing your healthcare—even to specialists—is a very bad idea, especially if you might have a rare condition of any sort. No doctor will ever care about you/your family member the way that you do. And they are always so pressed for time that mistakes are to be expected.
Correction :sweat-smile:
Don’t tell anyone you can’t read.
→ should have been →
Don’t let anyone tell you you can’t read.