Why can’t we all be happy little patients?

Like I said at the end of my last blog post, the letter to the ward was received with complete indifference by the head nurse. If you haven’t read my previous post, here it is: https://healthyhenning.wordpress.com/2013/05/08/letter-to-my-dialysis-ward/

What I hadn’t anticipated was the way I as a person would be received by the rest of staff after I wrote it. I guess it’s reasonable to expect a measure of animosity after having told virtually everybody off without mentioning any names. But what I hadn’t expected was the outright shunning that was shown towards me. Now I am simply treated as if I have developed the plague. Nobody looks me in the eye, nobody interacts with me and I have been moved away from the new patients so they don’t contract the plague of dissatisfaction with their treatment.

Most of the people I like and respect at the ward are actively avoiding my presence. They are all afraid I was talking about them when I mentioned how they didn’t have their heart in the work they did. Only one person has come up and confronted me about it, and she continues to do so. Kudos to her. She told me how she thought I was out of line. And she might be right, I was very harsh in my criticism and I could have moderated my words slightly.

What I find completely mind-blowing is this:

Like all other human beings nurses have a right to have a bad day. When that happens we patients have to endure. I don’t blame them for not feeling a bubble of joy all the time, I am certain there is a lot of stress in a ward like theirs. Problem is that we patients are the ones on the receiving end of it. We are the ones getting sub-standard treatment, medically, socially and humanly.

And the great disconnect is this… we patients are not allowed to have a bad day and completely lose the plot. When I finally break down and say my piece – albeit in a slightly confrontational way – I am being treated either as non-existent or as plague ridden (not that the difference between the two is that different). There is a complete lack of caring.

We have to act the role of good and well-behaved children. There is no consideration for the fact that we are adults. And not only adults but adults who have a life-threatening disorder that requires that we show up three times a week to get what is considered minimal treatment. The underlying discourse here is: “Sit down, shut up and be grateful that we are treating you at all.”

Ok. I’ll throw them a bone here. We are allowed to have a bad day in some measure. We can sit in the chair and sulk and feel sorry for ourselves without too much difficulty, we might even be met with a kind word and some compassion – after all, we are all critically ill. However when the shit hits the fan and I pipe up and let out all of my frustrations then I am stonewalled. Patients are not allowed to have an opinion about their treatment. They are to act like their moniker and be just that… patient (adjective).

What that sort of attitude makes me think is: We all have to die, so why not sit back and let it happen while we all play a little game of despondency?

I am terribly sorry. I just can’t  play that game.

So what do we do? I don’t have an answer. All I know is that when I do what I feel is right and point out some of the flaws in the present practices I am met with an amazing degree of indifference. At the same time I need extremely thick skin, thicker than most people have – and especially people who are critically ill and therefore in a very vulnerable situation.

What I do know is that things are not going to change until those in charge are changing. To me it is quite obviously a cultural thing when habits and attitudes are so systemic as it is seen here. So unless the leaders are willing (forget about able; where there’s a will, there’s a way) to actually act in a respectful manner towards their patients and actually do what the patients want – and not like they think the patients want (don’t get me started on that, there is a whole new series of posts on that particular subjects), nothing is going to change.

Progress only starts with those who are aware of their own flaws. And I am seriously afraid the people in power at this ward are in love with their own greatness.

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