- Opinion
- 30 Jun 08
If your average physician listened a little more closely to his patient, it might save a little time and a lot of distress further down the line.
I’ve had a horrible time with a recent illness. Along the way, from January to June, I’ve been seen by twelve doctors; it’s been a long and frustrating tale of missed diagnoses, a general lack of awareness, lines of enquiry not following through, doctors not really listening to what I was clearly describing, and systems failing.
The consultant who really knew what he was talking about, when I finally got to see him in May, was not able to diagnose me because of missing blood tests. He ordered more tests, I was told to come back the following week. Those results, too, got lost. All this time, my eyesight was deteriorating daily. The results, which should have established what was wrong with me in three days, only finally came through, third time lucky, after three weeks. By that time, in despair, having lost nearly all the sight in one eye, I had already insisted on being given treatment, in the absence of a diagnosis, trusting the consultant’s best guess, so frightened I was of going blind in both eyes. Dramatically, within 25 minutes of the first injections, the black cloud in my vision began to allow a tiny patch of sky through. I could see a face through it, for the first time in eleven days. It was quite a miraculous experience. Science at its best.
The full bizarre tale still seems fascinating to me, but in a sort of neurotic Woody Allen-esque way. It’s probably only interesting to doctors who like puzzles, or those who relish Hugh Laurie’s tour de force as the insanely brilliant diagnostician House, MD, so I won’t repeat it here. But I put it all into an intense (and obsessively detailed) complaint to the hospital that lost the blood tests, and sent copies of it to most of the doctors and clinics who saw me along the way. What happened to me is rare enough, the consultant only had seen one case of it before in his career. So, it takes the steam out of any righteous indignation I might have. I can’t rail on my soapbox about the dangers that may befall others in the same plight, because the truth is, it might be another ten years before someone else shows up at the hospital with the same thing. I can only hope that they will have sorted out their blood testing system by then.
Hindsight is 20/20 vision, of course. But, using it, it is possible to see clearly that things would have been very different, had I been listened to properly six months ago. I don’t mean that anyone was rude to me – everyone along the way has been very pleasant and hard-working, doing the best they can. Listening is a skill that few doctors have – in fact, most seem to have mastered a technique of looking as if they are actively ignoring you - busying themselves writing notes or peering at screens or fiddling with equipment while you gamely persevere with talking at their shoulders, not sure if one word is sinking in. I suppose it’s a hazard of the profession – they can’t risk the diagnostic checklist being disrupted by irrelevant conversation, they don’t have the time or training to offer counselling, and too many people out there are starved for attention. Open up a channel of communication for a split second, and you might open floodgates that can’t be dammed. And yet, when a patient describes “clusters of translucent slithery things” in his vision, as I did in January, it seems really odd to realise now that I was perfectly right. There were, literally, microbes in my eyes, rampaging around and wrecking everything, but no one tested for them until May. There’s something wrong with a diagnostic process that doesn’t allow for the possibility that a patient might have been right all along, even though he didn’t know he was.
It is far, far easier when a lover jilts you spectacularly, with lies, cruelty and humiliation. That way, anger fuels your drive to recover, to move on, to grab life by the short and curlies. At least that’s how it’s been for me. It’s far more complex when a lover fails you through a sort of chronic distancing neglect; when best intentions aren’t quite enough, when too many little mistakes have been made, too many slights endured, when they just aren’t curious enough about your life to get you.
Lovers and doctors both play vital roles in our lives, and the experience of being let down by them can feel very similar, because we need to trust them. There is no way I could have figured out what was wrong with me by myself, no matter how hard I tried to google for answers. I would have hoped that a really curious doctor might have taken the time to sit down with me and puzzle it out together, but alas, that’s just not the real world.
There is no villain in my story. It’s just a series of cock-ups and mishaps that, on their own, were understandable, but, put all together, nearly blinded me.
If anyone goes through a similar experience, I encourage you to write and complain, putting your own experience in writing. In response to my complaint, I have had four doctors get back to me so far, leaving phone messages or writing to me, saying they’re sorry for what I’ve gone through, they take my point, they’ll bear my experience in mind in the future. Refreshingly free of the paralysing paranoia that affects the health system in the US, where an apology is hardly ever offered because it is seen to be an admission of liability, their apologies mean a lot to me, and I’m very grateful. I’ve been listened to, I’ve been seen. That’ll do me.
It’s not too much to ask for, is it?