Can We Take the Shame Out of Health Care?

I’ve been in a bit of a theme recently with the worry posts, and I promise I’ll get back to that.  Today’s post is completely off that track.  It’s a reaction to things that I am hearing from my own clients and things that I am hearing from patient advocates online.  I am hearing a lot about experiences of people feeling shamed and silenced in their healthcare experiences.  This feels like a huge problem to me.

Some of our health is about our decisions.  We can choose to eat healthy food, exercise regularly, participate in preventive care, manage our own diagnoses if we have them.

But not all of our health is about our decisions.

How many stories have you heard about folks who ate right, exercised, practiced prevention–and got cancer anyway? Or got rheumatoid arthritis anyway?  Or experienced sudden coronary artery disease (SCAD) anyway?  Because I’ve heard a lot of those stories.

The truth is, we still don’t understand all that much about how our bodies work.  Yes, we understand so much more than we did fifty years ago. Or twenty years ago. Or ten years ago.  But really, we are just scratching the surface of understanding what is going on in these complex systems we inhabit.  We don’t know how much of health is genetic, or environmental, or decision based–not really.

We live in a culture that likes to have answers.  We’re surrounded by promises that if we just use this product, or take that fitness class, we will be healthy and happy (oh, and probably thin, because we’re told that’s the only way to be healthy or happy).

Not only do we like answers, we like to have a sense of control.  It is really frightening to think that you can make healthy choices, and still face serious illness.  That’s not a reality that most people are comfortable with.  It’s a little easier to blame serious health challenges on personal decisions.  Truly, I’ve worked with folks who were told that their Type I diabetes (diagnosed before age six) was due to their dietary choices.

But not all of our health is about our decisions.

So, for a change this week, can we explore the idea that maybe health is more complicated than a single dimension?  And can we look at the possibility that it is nearly impossible to shame someone into making good choices?

Can we offer compassion, connection and the kind of communication that really works toward change?  Because that’s what I want in health care!  How about you?

Comments

  1. says

    Great post & so true. The emphasis on preventative health and risk reduction seems to inevitably lead the shaming of those who do fall ill. As a type 1 diabetic I see this all the time, firstly with the shaming of type 2s for having a “lifestyle” disease but it’s also just as, if not more pernicious with type 1 in which long term complications are seen as your own fault because your control mustn’t have been good enough-despite having the disease for decades.

    I started to think about this stigmatising attitude from a different perspective as well. What if health beliefs influence behaviour? The error rate for diabetes medications i hospitals is terrible and a UK audit found 7% of type 1s developed DKA whilst in hospital-is some of this woeful lack of care due to HCP enacting their beliefs-diabetics are unworthy of care because their disease is self-inflicted. I know it sounds outrageous but is it any more outrageous than the fact that we put a 52% error rate down to incompetency and we just accept that rate of mistakes?

    Sorry for the long comment but this shame & stigma is front of my mind at the moment.

    • says

      Mel,

      The long reply is thoughtful and welcome. I think that we can’t ignore the impact that health beliefs have on our behavior. If you expect to be shamed/blamed for your health struggles no matter what, it can be tough to put in a consistent effort–particularly on the tough days.

      Thank you,
      Ann

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