Saturday, 1 June 2013

... part two

So, I said I'd come back and give my take on that letter when I was calmer. Discussion of part one last night certainly made for an interesting evening.

Because I don't view the TRB as being about negativity - that isn't what I created it for - I decided I'd challenge myself and try to argue both the good and bad aspects of that letter, as I firmly believe there are plenty of both.

(I'd love to have a debate like this!
Courtesy of

So, the good:

I read the piece again this morning and I think I can understand the main point the doctor wanted to express. Whilst "You scare doctors" understandably immediately sets hackles rising, I don't doubt for a second that it's probably true.

I can appreciate being a doctor is a difficult profession. You don't have all the answers and solutions expected of you, and no doubt do meet your share of patients whose expectations are wildly off kilter from reality. That must be an incredibly frustrating experience.

I can understand the frustration mentioned in relation to chronic illnesses. You can never fix us. We are what we are and we repeatedly come to you to manage the unmanageable, to help relieve the unrelievable. I can even as a patient myself understand on some level that this is a frustrating and probably upsetting experience.

In some ways it is interesting and informative to be given the other side of the doctor-patient relationship, and to be given a possible explanation for the sometimes incredibly negative experience chronically ill patients have with their doctors.

And yes, even as a patient I do understand your flawed humanity. Speaking from personal experience I don't go into a doctors surgery expecting a miracle. I go in expecting to be listened to and understood, and to take it from there. I appreciate it's a very human thing to not wish to be confronted with your own limitations.

Reading to the bottom of the article and the tips listed there, some of them are indeed quite helpful. Keeping our eggs in a few baskets is sensible, Limiting the use of emergency departments and the reasons for why - nothing at all wrong with that. I'm sure most of us have had hair-ripping-out frustrating experiences with A&E or our country's equivalent. And I've said myself earlier in this blog - if one half of your doctor-patient relationship isn't pulling its weight, it needs to be replaced. Finding the right doctor is indeed key to overall health and the management thereof.

I can also understand the basis behind the point on "coming on too strong" - I know myself that my poor past experiences lead me to go into each new appointment already feeling defensive and ready to bite. I've already reached the conclusion due to past doctors disinterest that if I don't advocate for my own health, nobody else will.

The principle lesson is don't tar every doctor with the same brush, and I agree. We shouldn't do it, it isn't fair. But I also know from personal experience it's an incredibly easy trap to fall into, and the more bad experiences one has with different doctors, the more defensive and negative one is likely to become.

I can't fairly sit here as a patient and disagree with the fact that there are things patients do "wrong" which are just as counter-productive as the things their doctors do wrong.

(It's worth remembering this is one doctor's opinion - this one seems to gainsay some of it.
Courtesy of

However, the bad:

Whilst I can understand the idea behind the piece, the execution is for me the largest part of why it is problematic. For me at least the wording has been quite poorly thought out and comes across as negative and condescending.

Mostly it's the three central paragraphs of metaphors concerning what chronic illness patients "are" to doctors which I found most disturbing:

"But chronic unsolveable disease stands square in our way....We want the miraculous, and you deny us that chance."

"You are the rock that proves how easily the ship can be sunk."

As much as the gentleman does go on to say "I'm not saying it's your fault" the use of those phrases and others like them does apportion blame - they imply that patients are actively doing something to get in their doctors way. We're actively causing the problem, and we're deliberately setting out to tear down the doctor-god delusion.

The intention was more than likely good, but the execution for me makes a mockery of the original intent.

My biggest sole problem is that without wishing to appear a martyr, setting up the doctor experience in direct comparison to the patient one and implying comparative ill-fortune was not a constructive road to venture down.

As a doctor the gentleman has picked his profession, hopefully knowing all the pitfalls which accompany the perks.

As a chronic illness patient, we none of us picked our situation. We, unlike our doctors, had no choice. To make a comparison between a freely made decision and a genuinely powerless swipe of ill-luck is on the one hand condescending, and on the other in my opinion extremely foolish.

A good comparison was made by a friend yesterday - if you work in retail, you're expected to be nice to all your customers no matter what and you gripe only behind closed doors. The point is made in this that doctors get frustrated and angry with their patients - surely the same standard of professionalism should be expected and fulfilled? Do your grumbling elsewhere, but treat your client or customer with respect and compassion.

Offering up "we're human and fallible" as an excuse doesn't hold a great deal of water with me either. We're all human and fallible, but we're still in the wrong if we don't treat other people with the respect they are due - your profession, whatever it may be, does not excuse you from this.

I am very strongly against the idea of playing the game of "if you have a black cat, mine is blacker", and it frustrates me immensely when I see people playing that sort of game with the topic of illness. Having said that it's my belief that the doctor and patient experiences just aren't comparable and to try to do so isn't helpful and offers nothing constructive. However, that's just my view.

(As black cats go, this takes some beating. Photograph by Sarah Plove)

In summary

I'm sure it's clear I don't like the article very much. Whilst I can applaud the intention behind the piece, I have real problems with the execution and wording of said original intention. Whilst (I think) trying to offer an insight into the other side of the coin, the gentleman has ended up in my view embroiled in one-up-manship between doctor and patient and this results in condescension and a seeming lack of a grasp of perspective.

What do others think?


  1. I honestly didn't see it that way. It didn't raise any hackles with me, probably because I haven't had time on my chronic illness journey yet to accrue all of the negative experiences that would color one's experience.

    As far as blaming language goes, I didn't pick up on that. "The rock that brings down the ship" is just, well... there. It's not TRYING to break the ship, but it's the job of the vessel to steer around the rock. Chronic illness patients are just kind of "there" as well. We're not trying to break the system, but it seems that the system doesn't quite know how to navigate around us. Our fault? Certainly not. And we can no more stop our sicknesses than a rock can move out of the way of a ship. I agree with you in that, if the ship breaks, well it should have steered around the rock!

    That being said, while there should be awareness on the part of would-be doctors just launching into their training about the potential pitfalls and risks that accompany their chosen profession, there is no way that they can foresee every problem they might run into. I can't imagine that chronic illnesses are given as much of a focus in medical school as the curable ones, except for maybe the really prevalent and well known ones like diabetes, heart disease, cancer, reproductive problems, etc. While a doctor should not and cannot hang the weight of shortcomings completely on the "I'm human, cut me some slack" hook, it IS a valid consideration. We're jaded, they're intimidated/frustrated... doesn't make for the most productive environment. But I think that if both sides will respect one another, very healthy working relationships can be achieved... and I believe that is what the doctor was trying to convey.

    1. Thank you for your reply Cassandra, it gives a lot to think about. :)

      I think you're probably right in that attention is not given to chronic disease in medical training - I myself have encountered doctors who were unsure what Fibromyalgia was. I can understand being a GP is difficult as you are expected to know a little, but not a lot, about a lot of different things.

      There's certainly plenty to be said in regards to mutual respect on both sides of the relationship though, and I think that's a key factor in all healthcare (or it certainly should be!)

      Once again thank you for taking the time to reply as it's given me some food for thought, which is always good. I wish you well with your health :-) xxx