Wednesday, July 9, 2014

"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014

Monday, July 7, 2014

All the King's Horses & All the King's Men

One thing I wish people understood about me is that when I freak out about something, it's not some phantom that my mind has created, some imaginary boogieman, no... If I'm freaking out it's because this is something I've experienced before, some major trauma, where I can see where I'm headed and I'm desperately trying to avoid that fate. I've come by my pessimism and cynicism honestly: that is, I'm not cynical about doctors because it's cool to be cynical about doctors. No, I'm cynical about doctors because I have been let down, betrayed, and permanently injured by doctors. I had youthful optimism once. Now, I am no longer a youth, I am a middle-aged woman and I've been around the block enough times to know that optimism is rarely well-founded.

So what's a girl to do? I could let my cynicism and pessimism turn to bitterness and bile, choosing to see myself as a victim... Or, I can look at things from "the other side of the chessboard." What this means is abandoning my point of view, and looking at my situation from my opponent's point-of-view. In chess it's a way to practice by oneself by literally turning the chessboard around, and playing the game from your opponent's side. In this way, you can see what they're seeing, and get some insight into not only their moves, but how they perceive your moves.

For example, I have a neighbor who is openly hostile towards me for some unknown reason. He's rude, a bully, and is spiteful in so many ways. Now, I could either choose to see myself as his victim, as his attacks are squarely aimed at me... Or, I could view things from his point of view, and that is, all I have to do is show up and his day is ruined. He gets so upset just by my presence, that the one with the power in this equation is actually ME! He's given me power over him to an enormous degree. He's not attacking because he believes he's stronger than me. He's attacking me because he feels weaker than me! I'm not the victim here at all. He is, and he's doing it all to himself. I don't need to do a thing...

So even though no matter what I do I will hurt, and even though I cannot live where I want with the type of people I love... Even though I'm not strong enough to take care of myself, and there are ways in which I cannot be helped at all... Even though I have to accept less from my body, that doesn't mean I have to accept less for my life!! I can learn to live happily at this new pace. I can find new things to enjoy and bring joy into my life. I can make new friends, of quality, who also share my newfound quality of life.

Because I didn't always know what brought me happiness. That was something I had to discover over time. When I was a teenager and was under a period of profound transformation, I had to find new ways of coping, because what I did as a child to cope no longer sufficed. And I had to find new coping mechanisms in college, because my teenaged ways not longer met muster. This happened again after college, and again after 27... I was working diligently towards an entire new set when my life was disrupted by illness. So if I'm completely honest with myself, this type of discontent with my coping mechanisms is not something caused by my illness, it is a regular, normal process throughout my life as I grow and change. The illness limits my choices, to be sure... But my choices would also be limited (in different ways) if I had children. The facts are different, but the feelings are the same. Knowing what makes me happy is an ongoing process, and if I just relax, eventually I'll discover something that will fill me with joy & help me cope.

Yes, the illness changed me in ways I don't like. But life changes everyone in ways they don't like. Everyone experiences pain, despair, heartache, and profound loss. No one is immune. No. One. There is no special reason why I should feel sorry for myself. This isn't a competition for who's got it worst, nor is there any reward for being the most pitiful. I can hang on to my anger, blaming my illness for all my misfortune (which is an easy case to make), or I can realize that everyone deals with misfortune and traumatic loss. This just happened to be mine.

If I'm able to realize that holding on to mediocre I am denying myself the opportunity to find better, then it makes letting go of what doesn't work in my life, and finding the patience to wait for what does... Then the losses aren just losses, but welcomed relief as they are replaced with something better.

Tuesday, July 1, 2014

My Most Fortunate Mistakes

I have done some doozies in my time, let me tell you!! But some of the things I have kicked myself for, repeatedly, have turned out to be exactly the right thing to do, and have saved my @$$ in the long run... I thought that losing Seattle was a mistake, that I was leaving my home... And I was. But that move allowed me the key piece of information that I needed to take better care of myself: that dry air does me better. That allowed me a larger window in which to function, and ultimately got me to the better place I am today.

I have "chronic foot-in-mouth disease," but that opened the doorway to a whole set of new friends I never knew I could have. I though once I had lost the love of my life, and it turned out I dodged a bullet! I mean, there are some crazy twist and turns in life that I never thought could happen, good and bad, but I'll tell you something that has always helped me was a healthy sense of how lucky I am.

Oh sure, I've wine the health lottery in all the wrong ways, but I still have a mind. I still have enough good in my life to build success. I am super high maintenance, but in the most low maintenance way. Really, it is stupidly easy to make me happy. If I could be self-sufficient, the world would be right in so many ways. It's important that I keep the faith until it works out.

Funny thing is, about giving up.... That doesn't mean that you can't start again. All of us get knocked in the dirt a while. It's not about that. It's about making the right decisions, and sticking by the beliefs that make you, you... Not matter what darkness in your life may fall. Be responsible, and the world will reward you. Hang in there, keep trying, and even the mistakes we make can end up being a blessing in disguise.

If we just though about it for ten seconds, we'd realize that the problems we had ten years ago are not the same as the problems we have today. Some have gotten worse, but some have gotten better, and there is something to be thankful for if we think about it long enough.

We are constantly evolving creatures. Heavy weights that used to hang on my heart have been lifted. Not because of any sort of spiritual experience, but just because I got new information that changed my perspective on everything. What I once though was a terrifying experience, I later learned was an act of bravery. Little things, where I though I had failed, but I hadn't. Things aren't always how I see them to be. And that can have terrible consequences, or wonderful ones. And what we think is terrible turns into wonderful and vice versa.

Things change. We change. My concerns at 30 we're not the same as they are at 40, and certainly not the worries I had when I was 20! I *am* getting better and wiser with each stride, even the missteps... Especially the missteps. Because it is only when we are in free-fall, sure that our ass is about to kiss the pavement any second now and we have two choices. The correct choice is NOT "brace for impact." That will leave you stiff, and bones will break. The trick is: RELAX.

Yes, I know unintended free-fall is terrifying. I know you want to reach out in desperation to catch yourself, but that can cause more damage than just a fall would, if what we grab for is sharp, hard, or unfit to support our weight. It's terrifying to realize the pain of impact is coming. We want to save ourselves from that fate. We want to cling to something that can save us, and can pull down our lives around our ears as a result. (Or worse, other people...) But as long as we try to resist the situation, we're concentrating on denial, instead of learning acceptance.

First, if I relax, I have less chance of injuring myself or others. Second, if I relax, instead of trying to say "this isn't happening!!!" I can instead say, "this is happening, what's my best option?" And sometimes in these terrifying moments, if we can relax, we can see that key insight we need to save our butt from the fire. A lot of times, I can tap into my dancing muscle memory and use my momentum to collapse on the couch instead of the counter, and I count my lucky stars. Other times, I just need to relax through the landing, and hope I don't hurt myself too bad. Still other times, I can think it's free-fall, but it's an illusion, and I'm really on solid ground, not falling at all.

-- Relax. When you know you're going to be reunited with the Laws of Physics in a harsh way, relax.
-- Look on the bright side. When everything is at it's darkest, that's when a candle shines as bright as the sun.
-- Realize that time changes things, and our biggest worries can turn around in an instant with just a piece of information we didn't have before.
-- Forgive yourself your mistakes, and realize that not all mistakes turn out like we think. Life is full of so many surprises, and we could be completely incorrect about what we though we did wrong.
-- Be true to people. This world is hard, and fairness something rarely seen. We should be good for the sake of goodness, because there's not enough in the world.

I'm so grateful for these mistakes... Sometimes it is wonderful to be wrong.