One of the truest truisms (if there’s such a thing) is that WebMD isn’t always your friend. One reason is the nocebo effect.
Yes, yes, you’re going to tell me that an informed consumer is a savvy consumer and that we should know as much as possible about our illness, our medications, what ails us.
Maybe. But should we always be told the whole truth?
The nocebo effect is a detrimental effect on health produced by negative expectations of treatment or prognosis.
It happens. It’s been studied by Harvard scientists.
Look. I’m not going to deny it: I did Google my late BFF’s illness to determine survival rates. But so did she. So when she passed the median survival time we both knew it. And she spoke of it and the anxiety that knowledge created.
She blew past that year and went another two, I think. Because the truth is, statistics are not people. Every person is different. There’s always someone who beats the odds and my thought is, why shouldn’t it be you? And as you’re beating the odds, do you want that anxiety hovering over you?
Something similar happens with side effects to meds. Just knowing side effects can create more. “Can.” In some cases.
Social media: not the place for diagnosis
Like me, you probably see social media posts asking others to weigh in on their experience with a drug. That always makes me a little crazy because I don’t think Facebook friends are the best source of that information.
Or for diagnosis. It makes me REALLY crazy when I see friends asking for diagnosis from their social media tribe.
(And of course, any med student will tell you that it’s not uncommon for them to start having symptoms for diseases they study. )
Here’s another truth: Many doctors are not knowledgeable about drug side effects, nor do they look them up so they can discuss with patients. (Except for oncologists, who usually keep their patients informed.)
That’s not good for people like me because our version of an “educated consumer” is to ask our doctor about side effects and also to ask our pharmacist, if it’s an outpatient prescription. If I start having a symptom I didn’t have before taking a drug, I’ll look it up. Until then? No.
For example, when I began taking blood pressure meds I developed a vague and ongoing headache. Since I don’t get headaches, it was notable. So I looked up my drug and saw that headache was a common side effect–at first. They usually disappeared in a few weeks. And they did. Three weeks later I was headache-free and remain that way to this day.
Several times my otologist has put me on quite massive doses of oral steroids for weeks at a time. I know there are ugly side effects to prednisone but I didn’t want specifics. I didn’t even want to know how massive the doses were in the greater scheme. I don’t think it’s a coincidence that I had absolutely no noticeable side effects.
How much info is too much?
But a friend was put on a drug and soon thereafter had horrible stomach pains, so bad she went to Emergency more than once. Her doctor didn’t connect the dots. Her good friend, also a doctor, didn’t connect the dots. But finally, she wondered if it were her meds. She looked up her drug and SHE connected the dots. When she stopped taking the drug the pain stopped and never returned. In her case, being more educated about side effects might have caused less pain. But I fault her doctor for not doing the looking up.
I know I am suggestible and I know that too much information can make me anxious. So for me, it’s a balancing act. I want enough info but not too much. But then, I’m lucky. I have a good doctor. And of course, I can never deny the influence of having been raised by a father who was a physician. And a hypochondriacal mother.
How much info is too much? There’s no clear answer. It’s different for everyone.
The Harvard study concluded that “Truth in clinical medicine, especially for vague, non-specific symptoms, is complex and seldom absolute.” Which is to say the same thing: everyone is different.
Gone are the days when Dr. Marcus Welby types knew their patients inside and out. Dr. Welby would’ve known how much info was too much. And would’ve looked it up. And so would my father, who spent many long hours in medical libraries researching tough patient issues. (Dr. Welby was a kindly, television doctor in the 1970s. Yes, I’m dating myself.)
Those days are gone and so is my father. But Google (and Facebook) are not the best replacements for a caring physician.