Content warning: lots of medical chat, depression mentions, and light reference to suicidality.
A doctor is a human being and, therefore, fallible, as are all humans. However, you wouldn’t think doctors are by even the least bit fallible 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 string of numbers; I’m a human being living with unbearable pain, and a whole host of other odd symptoms to boot.
Maybe I’m being a bit too harsh, but as with all topics, we can say ‘not all x, y, and z’. Unfortunately, more often than not, I’m treated like a case file they can’t wait to get rid of, and this is the hard truth many complex patients like myself face. When a doctor doesn’t automatically try to ship me off to another consultant, it’s a goddamn miracle.
Now, I am English, and I am well aware that the NHS is free (for now). 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 a sensible care plan or follow-up appointments. It’s even become a habit of mine to ask if a specialist doctor is discharging me after every appointment because that’s how often it happens.
Don’t get me wrong, I love the NHS and what it stands for. However, if your care is even a tiny bit complicated, the NHS can’t, and 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 (I’m looking at you, Conservatives – particularly after the Health and Social bill you just ‘passed’), so nowadays it’s no more than a skeleton NHS.
Side note: If you’re a fresh-faced new doctor and you’ve stumbled on to this post somehow, welcome! Stay a minute longer, I promise this gets better, and you might learn something. Though, no promises.
If you stumble upon what seems to be a hopeless case, a case that makes you swallow uncomfortably, start to sweat or you feel out of your depth, here’s what I’d like you to do:
Tell the patient you don’t know what’s going on, but that you’ll help them the best you can and refer them elsewhere if possible.
That’s it. It’s very simple. All I want — when you or your colleagues don’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 will 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 an NHS life of attempted mental health assessments and endless 3-month trials of medications with indecipherable names all whilst telling me opioids are terrible and pain medications are something I’ll have to live without because of ‘new guidelines’.
Please also understand that what you write in our files matters a lot. 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 a 5-minute face to face conversation. I once had to shove an iPad displaying pictures of my medical ailment in front of a doctor’s face because they refused to listen to me; they just kept reading the screen and going through old irrelevant letters that contained a myriad of wrong diagnoses. It was only after they saw the pictures that they started to pay attention to the person in the room, not the caricature in the notes.
I will also trust you more if you treat me as a human being, and not like a medical guinea pig. I promise to 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 pretty well. You’ll also get bonus points if you forget the part where you tell me I shouldn’t ‘Google my symptoms’. Nearly every doctor I see nowadays has to Google my systems and diagnosis right in front of me. It’s a Hippocratic oath, not a hypocrite oath.
If you earn my trust, my anxiety about doctors and medical trauma 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 and left a bystander 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 even when I was in tears and at my wits’ end due to pain.
Trust my judgment and treat me as you would treat a normal human being, granted, one that’s a bit of a puzzle. That’s all I ask. Well, not all I ask — a diagnosis and treatment plan would be nice, but I’ll settle for an ‘I don’t know’ and your very best effort.
Ruby, a patient with a complicated medical history, and more than a handful of both diagnosed and undiagnosed symptoms.