Playing Label Bingo

This week was not a good week.

So far we have managed, between my two children, to tick the boxes on a fair swathe of far too many major chronic diseases. It’s like we’re holding a bingo contest in a doctor’s surgery as they cry out various diagnoses terms, and I’m sitting there with a  blank look and a pencil marking them off against some sort of ineffable list. I call it playing label bingo.

It’s times like this that I find myself retreating into my mind. Before kids, I would sit in a darkened room and stare at the walls while I listened to Gavin Bryars’ A Man in A Room, Gambling. If you have never listened to it, it’s worth finding. Gavin Bryars has a rather wicked sense of humour that appeals – most of his work is virtually instrumental, orchestral, and quite beautiful. But he also has the capacity to find the beauty of the mundane. In A Man … he augments the peaceful music by having a narrator, with a thick accent tonelessly speak through techniques to cheat in a card game. I find the absurdity immensely soothing.

These days, I do not have the time. But I go back there in my mind – perhaps it’s a type of meditation. I know it gives me the strength to pick up the threads that have been cast across my path and not just keep on surviving, but come out kicking and screaming, dancing and singing. Life is short. And I have no need to feel sorry for where I am, and the burdens that experts keep wanting to place on me.

But I suppose, it has been a very long time since I have taken a medical assessment at face value. Don’t get me wrong – I am and I hope always will be respectful of their expertise and learning. If I wasn’t I wouldn’t keep hauling my kids to see so darn many of them. But I have no expectation that they will be able to understand my family. Hell, even I have trouble some days! And sadly, I have gotten very used to handling condescension. I would like to say that it doesn’t happen, that a medical professional would be able to talk to a patient and their family without assuming that they were clueless and in need of gentle pats on the head. But it is a rarity. Of the hundreds of doctors I have visited, it has only happened three times.

One was a psychologist who assessed C – and took the time to talk to me as well (and understood what I was saying). When I did my (ingrained) usual biting of tongue and treating her diagnosis as if it came as a surprise – she called me on it, said stop BSing (in a wonderfully lady-like way). And then we got on with it. She earned my respect that day.

The other was a Dr who was doing experimental trial-treatments for disease-detection. When we walked in to the doctor’s surgery, he started the usual spiel that tried to explain the intricacies of the human immune system to people with only a distant memory of high-school science. I gently pointed out that I had done lab experiments on the neuro-response of capillaries to noradrenaline among other things. (Cutting up rats and threading pieces of them onto pipettes is an experience that is not forgotten easily, trust me). It was amusing to see the relief in his eyes – and he dropped the ‘splaining tone and talked to me as a scientist.

The last is our GP – who is amazing, funny and treats not just myself, but my kids with respect. He has never talked down to us, or sugar-coated anything. He is a gem. And no, I won’t be giving you his name. He’s all ours.

I think, in many ways, my response to condescension is a defense mechanism – a way of putting a distance between doctors’ expectations and my acceptance of them. I am, and probably always will be, a DIY kind of gal. If doctors give me the results of a genetic test with their explanation of what it means, you bet I’m going to take a crash-course, self-driven learning binge on disease detection using genetic analysis. It took me a week to learn enough background information to be able to read our DNA sequencing results and learn where they link into research on chronic and genetic diseases – with all the wavy-hands we’re-still-in-the-dark research-paper reading that is out there. And yes, I am the kind of mum who will email top researchers to request copies of their papers (if they don’t appear on arxiv.org or any of the other free-repositories for papers).

I don’t think, at this stage in my life, I could change. It’s what I do. And I’m sure there are many, many parents out there that do the same.

Playing label bingo isn’t fun. It’s even less fun when you are treated as less than a partner on the journey, where your experiences are dismissed as of lesser importance because you have no letters after your name. And quite frankly, if you are a doctor who engages in this practice, it’s a recipe for having your hard-earned expertise ignored. Which is a shame.

I am not going to dismiss what our doctors have said simply because I have had an emotional response to their bedside manner. But I’m not necessarily going to accept blindly that they are right, and that they know best. I do, as I have done for a long while, treated their words and labels as I feel they should be treated. They are tools, no more, no less. They open doors to new ideas and possibilities and it is our job as a family to decide if we are going to walk through those doors.