Recently I had to call up the hospital and speak to my doctor about a change in my condition. (One of my conditions, I have many. This one being POTS that causes my heart to race on standing. Only recently it’s racing all the time. Even when I’m laid down. No fun.) Only my, lovely understanding, doctor wasn’t there. He was on holiday. I got to speak to a resident.
Let’s just say the call got off to a bad start when he immediately began by talking down to me. Clearly to him I was just some uneducated fool who was terrified over nothing. This immediately got my back up as 1) I’ve been told by many doctors they are impressed by my knowledge of my conditions and how I keep track of my treatment etc. it has even been admitted that, as my ailments are rare, I’m more well versed in them than a lot of medically trained staff. 2) I was not, and am not terrified. I’m aware I have this condition and that it’s not life threatening. But when it is leaving me pretty much bed bound I would like to try to improve the situation, thank you very much!
Things further went down hill when I mentioned the readings I’d been getting from my heart monitor. Let’s just say I didn’t appreciate him stating “We don’t advocate people having their own heart monitors, it just frightens them.” I think it was at that point I gave him an education, it went a little something like this:
Look, I am not some hypochondriac freaking out over my symptoms. I was diagnosed with POTS around four years ago and had been suffering with it much longer. I know it causes tachycardia. I also know it is not going to kill me. Fear is not why I have a heart rate monitor. I have one so that I know what my ‘normal’ baselines are. I have one so that when I’m out and about and I feel symptomatic I can check my pulse. I can ascertain if I can make it to the car, if I need to sit down or if I need to lie down right there on the floor. Because I’ve tried making that call on how I’m feeling alone. I inevitably push myself too far and end up getting better acquainted with the cold hard ground, at speed. Let me tell you, using the monitor is preferable. Especially as I’m heavily pregnant! Finally it allows me to track my condition, and if there’s significant longstanding change I can contact my doctor to discuss my options.
It was at that point his attitude towards me shifted. After I pointed out I was only calling to check I was doing everything I possibly could to help myself, and that I didn’t want to get deconditioned his attitude completely changed. He began saying things to placate me “Well clearly you know what you’re doing” etc etc.
So my message to the resident, or any other doctor, is this:
Don’t automatically assume that you are by far the most intelligent person in the room, and definitely don’t assume you know more about the patients condition than them. To you we are just another patient, with another condition you have read about in a text book. But this condition is a huge part of our lives. It affects us every day. How can you possibly know better what it’s like to live with? How can your textbooks equal years of experience? Yes, some specialists are an amazing fountain of knowledge, for whom we are very grateful. But most of you? Well, most of you have the bare bones of information. Listen to your patients. Learn from your patients. But mostly, don’t assume we are hypochondriacs for having tools in our arsenal to help us live.