Dear Doctor: When you don’t know what to do.
Content warning: lots of medical talk, depression mentions, light reference of suicidal thoughts.
A doctor is a human being, and therefore fallible – as are all humans. However, you wouldn’t think they are by their attitudes – well some of them. Normally, or at least it’s normally in my experience, when a doctor doesn’t know what to do they treat an undiagnosed complicated case like a stain on their career, and quite frankly I’ve had enough. I’m not a stain, or a case file, I’m a human being living with unbearable pain, and a whole host of other odd symptoms.
Maybe I’m being a bit too harsh, but like with all topics we can say ‘not all x, y, and z’. Unfortunately, more often that not I’m treated like a case you can’t wait to get rid of is a hard truth many complex patients like myself face.
Now, I am English, and I am well aware that the NHS is free. Compared to some of my American friends, I’m not in oodles of debt trying to find a diagnosis, but I am in oodles of pain and fighting a medical system that wants me discharged without care.
Don’t get me wrong, I love the NHS and what it stands for, however if you’re even a tiny bit complicated in the care you need the NHS can’t (sometimes won’t) deal with you. Though it’s not their fault (most of the time), it’s the fault of those that have gutted funding for the system, so nowadays it’s no more than a skeleton.
Side note: If you’re a fresh faced new doctor and you’ve stumbled on to this blog somehow, welcome! Stay a minute longer, I promise this gets better, and you might learn something? No promises.
If you stumble upon what seems to be a hopeless case, a case that makes you swallow uncomfortably, or feel out of your depth here’s what I’d like you to do:
Tell the patient that you don’t know, but you’ll help them the best you can.
That’s it. It’s very simple. All I want – when you or a colleague doesn’t know what to do, is to tell the patient that you don’t know, but you’ll help however you can. That first part is the most important part.
I have far more respect for a doctor if they tell me I’ve puzzled them, that it’s something they’ve not seen before, and aren’t sure how to treat. Like many, I’d rather brutal honesty than a letter in three weeks time that subscribes me to a NHS life of attempted sneaky mental health assessments, and endless trial medications with indecipherable names.
Please also understand that what you write in our files matters greatly, unfortunately more than you think. Our files massively dictate our care, and if you’re complicated doctors normally read your file and give that more weight than a physical exam or conversation. Once I had to shove an iPad with pictures in front a doctor’s face because they refused to listen to me, they just kept reading the screen, going through old irrelevant letters. It was only after they saw the pictures that they started to pay attention. Unfortunately, due to NHS procedure if I want pictures in my file they can’t come from me. I would have to make a special appointment with a hospital photographer (yes really), and I do not have the energy.
I will also trust you more if you treat me as a human being, and not like a medical guinea pig. I will be frank with you, and if you acknowledge that I have a working understanding of the human body, and especially my own body, things will progress quicker. I’ll even save you some time explaining routine medical procedures, because when you’ve had over 100 vials of blood taken in a few short months, and years of random medical tests, you start to understand the lingo really well.
If you earn my trust, my anxiety of doctors and hospitals won’t magically disappear, but knowing I’m visiting someone that will take me seriously will ease my worries. If doctors in the past had treated me with respect, I wouldn’t have the gut rumbling fear I have of being ignored in my own medical care. My depression wouldn’t have hit me with such a ferocity that I questioned my own life because no one would listen!
Trust my judgement, and treat me as you would treat a normal human being, but one that’s a bit of a puzzle. That’s all I ask. Well, not all I ask – a diagnosis would be nice, but I’ll settle for a ‘I don’t know’ and your very best effort.
Eve – a patient with a complicated medical history, with more than a handful of diagnosed and undiagnosed symptoms.