A Message to the Resident Who Didn't Think I Understood My Condition
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 was postural orthostatic tachycardia syndrome (POTS), which causes my heart to race on standing, but recently it’s been racing all the time, even when I’m lying down. No fun.) Only, my lovely understanding doctor wasn’t there. He was on holiday. I got to speak to a resident.
The call got off to a bad start when he began talking down to me. It seemed to him I was just some uneducated fool who was terrified over nothing. This immediately got my back up because 1. Many doctors have told me they are impressed by my knowledge of my conditions and how I keep track of my treatment. Some have even admitted that, as my ailments are rare, I’m better-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 required to stay in bed, I would like to try to improve the situation.
Things further went downhill when I mentioned the readings I’d been getting from my heart monitor. 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 a lecture, and it went a little something like this:
I am not a 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 I know what my “normal” baselines are. I have one so 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. 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. Using the monitor is preferable to injuring myself, again. 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 that I was doing everything I possibly could to help myself, and that I didn’t want to get deconditioned by bed rest, his attitude completely changed. He began saying things like, “Well, clearly you know what you’re doing,” etc.
So my message to the resident, or any other doctor, is this:
Please don’t automatically assume you are the most intelligent person in the room, and definitely don’t assume you know more about the patient’s condition than them. To you we may be just another patient, with another condition you have read about in a textbook. 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 it? How can your textbooks equal years of experience? Yes, some specialists are an amazing fountain of knowledge, for whom we are very grateful. But the rest? Well, many of you have the bare bones of information. Please listen to your patients. Learn from your patients. But mostly, don’t assume we are overly anxious about our health for having tools in our arsenal to help us live.
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The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? Check out our Submit a Story page for more about our submission guidelines.
I am a disabled mother, ostomate, POTS -y person and have a list as long as my arm of other medical conditions. After suffering with severe sepsis in 2020, due to a surgical error, I now also have severe medical PTSD. It took many months of worsening health and invasive procedures, before almost losing my life, for the problem to be found and rectified. Since then I have struggled to write, but I do regularly post on my Instagram and have done a couple of personal blogs. I hope to restart blogging as I find it helps myself and others work through so much. Feeling understood and as though we aren't alone means everything. I am proud to still have my blogs on the Mighty.
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