Recently, I was approached on Twitter with this message: “We have to talk, I’ve been told you can use some of the info that I have. – Don’t worry, it’s free.”
Does that pitch sound familiar to anyone else? In this case, the person was telling the truth about having been referred to me (by a friend who, long story short, was not really to blame), but the lies had already begun with the other claim. He further discredited himself by saying he had been to my blog and my Facebook page. The former is, of course, open to anyone, but the latter is inaccessible to anyone but my friends.
Why would you want to oil a snake?
When I called him on this bullshit, that was the last I heard of him, except when he registered on this blog. According to his site, he has multiple sclerosis due to Agent Orange exposure in Vietnam, and for $25 — not my idea of “free” — you can buy his book explaining how heavy metal exposure has caused your chronic illness as well.
Now assuming this guy is actually sick, I recognize in him a kind of freakishly outsized version of what many people go through: the feeling that we need to take control of what’s wrong with us by understanding it. And for some, that means coming to subjective conclusions that are not backed up by any reliable scientific literature. Not so forgivable is the attempt to capitalize on these crackpot theories, especially by preying on sick, vulnerable people. Never mind if you are one yourself; we Jews don’t think so kindly of Bernard Madoff. It’s all the worse if you’re “one of us” while using our enemies’ tactics against us. Luckily, this snake-oil salesman was easy to see coming, starting off as he did by lying to me. Many purveyors are far more subtle, however.
What I want is for those of us in chronic pain and fatigue and illness not to be vulnerable. I was very well taught by an online community of Graves’ disease patients how to read my own lab results, learn about medications, dosages, and tests, and get in the habit of questioning my doctor when things don’t add up. My experience in that community and others related to chronic illness, however, is that while self-education on conventional medical matters is encouraged, similarly close inspection of alternative, experimental, and/or complementary therapies is not touted as strongly.
Again, I empathize, to some extent. I went through a period where I believed it couldn’t hurt to throw everything at the problem and see what stuck. Relief from daily pain and illness is so elusive, and for some people the feeling is that it can’t get any worse, so why not? I did eventually swing back to a more critical way of thinking, after continuing to read about skepticism and learning more about the science behind my own illness. Memories of long-past and ultimately useless sessions in acupuncture and hypnosis only sped up the process.
Tim Farley, in the FAQ for his site What’s the Harm?, writes:
What I am against is people engaging in these practices (particularly for philosophical or religious reasons) without carefully considering risks and otherwise doing proper homework. You should always avail yourself of the best information you can before you make any important decision.
This is where I come down on the subject as well. We nerfed people, and especially the newly nerfed, are at best grieving for our old lives, and at worst still in shock at the loss. And like the bereaved who may find themselves the target of unscrupulous funeral practices, we can be open to false promises and might not closely consider costs, financial or otherwise. I am all for it when someone shows a demonstrable improvement due to some therapy or supplement; by no means do I dismiss those treatments solely because they haven’t worked for me. But we need to put our pain aside and think critically about what we are paying for, or putting into our bodies, or letting people do to us, rather than allowing it all for no better reason than it’s just another straw to grasp.
