|
I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening. Yet given that, it seems highly risky to me to even be open to the notion that I can second-guess the machine. That is, to find a better treatment, using my own knowledge and that of the Internet, friends, family, etc. The risks are well known: endless 'alternative' cures that prey on the most vulnerable, taking their money and time, and leaving them to die. It ranges from amateurish nonsense to sociopathic predation. The common thread is patients who don't trust the medical machine, and think they can do better. So when people tell me that I can find a cure, if I look harder, my reaction is "oh piss off!," before I delete their email. That is not my duty, not within my power, not for a disease like cancer. I mean, even looking for a "better" clinic is such a major undertaking that it lives in a different universe than mine. I do trust my doctors. They won't cure me, yet they will look after me, manage my pain, and when it comes to it, they will help me die smoothly and easily. |
I think it's important to do your own research on different treatments and therapies. But the reason we do so is not to get our hopes up but to inquire of our doctors about the treatments. We have two questions. "What about _____?" which is usually followed by "why not?" And once in a while we get the response of "I don't know, let me look into that" and end up trying something that they hadn't considered. It helps us knowing that no stone goes unturned and maybe it'll help the doctor even by learning about (always accepted, not alternative) techniques he/she hadn't really looked into yet.
While we generally trust all of our doctors, in two cases we've found physicians that were barely competent by this method. In both cases, they arrogantly attempted to dismiss concerns or questions but when pressed they made up answers simply to dismiss us. (we say "made up" because we were given responses that directly contradict research and even the monograph put out by the drug company. But fortunately, this is the exception and not the rule.
As for alternative cures, the only way (in my opinion) those can be believed is if you put on your tinfoil hat and believe that the medical establishment is evil, every last man. If alternative cures worked, they wouldn't be alternatives. My son is severely autistic. If only I'd spend more time listening to the Internet I could use these alternative cures and he'd end up being a heart surgeon, I'm sure.
I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?