Mad In America and its writers are often dismissed out of hand as “anti-medication.” But we’re not anti-medication, we are pro fully informed choice. It’s just a shame that people in society don’t get anywhere near full information about how well drugs work or what their actual risks are. But a lot of this boils down to people not understanding the difference between aggregate and anecdote. There’s a lot of people out there who don’t want to hear medication critiques because they like their meds. And for people who like their meds (or like their family member on the medications), how do we reach them?
Of course there are many reasons that people don’t have the information to balance harms and benefits. A lot of these reasons are discussed on this site, such as institutional corruption, dominant society paradigms, or medical providers with conflicts of interest. What I wanted to go into today is the people who can’t hear any of this data because they don’t understand the difference between aggregate vs. anecdote.
1. “I like my meds.”
A lot of people say, “Well, my meds work for me, they were a miracle.”
My response is, “This sounds at first blush like a success story. This is why our messaging needs to be careful. The idea is that medication helps some people, but not everyone, and may be increasing the amount of disability in our country.”
This is because in the aggregate (that is, on average) the vast majority of medications are no more effective than placebo in the long run. But aggregate does not mean everyone. Just like any average of data, there are people who do well, or extremely well, or extremely poorly with any kind of treatment.
There is a very good blog post from the late great Mickey Nardo at 1boringoldman.com about how many drugs don’t even beat placebo. The image below is a little more complex. It is actually depicting how drug trials show a higher placebo response rate through time and a lower drug response rate. But notice how similar the placebo chart is to the drug response chart. This is how the aggregate can be visualized. Your success story is one of these dots. In this image, each dot is a whole clinical trial, which could break out into another clump of dots. This site is talking about all the dots. You can’t talk about all the dots until you look at all the data.
The vast majority of the data shows that people who benefit are statistical outliers. You got lucky. We’re glad you got lucky. But your story is not the whole story.
But what about the others, the ones who are hurt by the medication or it doesn’t beat placebo? Is it worth the risk? Public policy decisions shouldn’t be based on “the lucky ones,” they should take into account all aggregate data. And users who are statistical outliers shouldn’t promote their treatment as a solution for everyone. People who tell a story about one dot on that chart but then don’t listen to the story about all the dots. And there are many more dots on that chart that had no benefit or had harm than the ones who got lucky and were helped.
2. “But the drugs don’t hurt me…”
And then there is another version of the story. Have you heard that one yet as an advocate? If you are trying to share info about medical harm and your friendly drug user friend says, “Well, they don’t harm me….”
My response: You just may not know what you are missing. My personal recovery story included a time where medications seemed very helpful, but later the medications started causing a movement disorder and severe sleep disruption, both of which resolved when I came off medications. Also, many medication critics talk about “numbing emotions,” and I never felt numbed on medications. But when when I came off medications, there was an incredible emotional intensity and beauty to my life that I didn’t even know I’d been missing.
People may not know the harm being done.
People can be advised to work on reducing the medications that are causing the most problems with side effects, and work with an extremely slow taper according to good tapering practices found in this list of resources. Most people find a “minimum effective dose.” Once people know the difference between medication withdrawal effects and the return of the “illness,” many people find that the biggest effect of their medication is simply relief of withdrawal symptoms.
Back to anecdote vs. aggregate — you may be in the lower dots and not the lucky dots without even knowing it. And then there is the thing about our communities dying 25 years younger.
3. “What about suicide?”
But then some people say, “But the drugs keep me alive.”
My response: Well, the medications don’t prevent suicide in the aggregate in the long term. They may prevent suicide for you, as one data point, but the rest of the data points show that some of these drugs actually increase suicide.