When Physicians Don’t have an Answer

Physicians are people, falliable, imperfect, emotive people. And yet, they are expected to be perfect, to know everything, to never make an error. How silly! These expectations make physicians worse, not better. The fear of liability permiates, yet anyone who has ever tried to sue a doctor in Canada knows that it’s almost impossible to do, let alone win. I’m sure this is a spillover from our southern cousins, but it’s doubly dangerous- there is no recourse when physicians intentionally do something asinine. Our checks and balances are based on a premise that everybody involved is acting in good faith. If someone is deliberately lying, falsifying documentation, discarding lab reports, etc., in order to hide an error.

Physicians are taught to be confident, or their patient won’t follow their direction. They are taught that admitting that you would do it differently next time indicates that you screwed up, not that you are learning. It’s creating a mess! Physicians are actively discouraged from saying ‘I don’t know’. So they fit the situation into a known paradigm, usually mental health. If I can’t find anything physically wrong, then it must be mental. Just like this incident in the US. I have huge kudos for doctors who admit that this happens- all the time.

The article doesn’t address what happens from there if it isn’t fixed right away. That mental health accusation can stick. I have seen the top MCAS specialist in the world, but somehow an ER doc’s observation that I ‘can’t have reacted to rice’ dismissed it as psychiatric (I’d love to know why she gave me epi then…). And that it take as fact over Dr Afrin’s report. 🤨

A perfect example of how tenacious the accusation is came up in October. I had a specialist (internist) who was investigating my hypertension (it’s hyper POTS, not hypertension…but I’m jumping through hoops for her🙄). She sent me off for a sleep study. He asked about medication allergies, I gave him my info list, he looked confused. The referring doc had written, as the only item listed under ‘Medication Allergies’ that I had a ‘psychogenic reaction to prednisone’ (because of course, you can’t have an allergic reaction to a steroid (not true)). I have no idea where she got that from, but could it be less helpful!?! I have a bonkers illness, on the extremely severe end of the scale. I HAVE to have physicians trust what I say. If they don’t, I get sicker. Yes, I can only use one brand of diphenhydramine. Yes, the slightest scent can cause ana in me, yes, my ana is hypertensive, etc etc. I need referring doctors to say “I know it’s wild, but you can trust her, she knows what she is talking about.” Claiming I don’t have any ‘real’ medication allergies makes my life SO much harder. Down right dangerous, in fact.  I already get weird glances when I tell doctors that they can’t use nitrile gloves with me- it takes forever to explain that I’m also allergic to synthetic latex, and yes, nitrile is synthetic latex, and that yes, it really could sent me into ana if you touch me with them. If I’m already flying a ‘bonkers’ flag above my head, that task is SO much harder. We automatically leave out the details that are the hardest to ‘sell’, which can also come back and bite you. It can create a mess that’s exceedingly hard to clean up.

I know that this is astonishingly common with MCAS. When I have researched ‘munchausen’s’ or ‘factitious disorder’, I haven’t found a SINGLE case of an adult with it who agrees that they have it. People admit they have borderline personality disorder…but I haven’t found a single report or  stories about people who have recovered, or of any successful treatment of someone with factitious disorder. There are no online support groups, no research being done. I’m aware of several cases (in BC and further) where children were removed from their parent’s care because they didn’t look up MCAS. Five minutes on google. But instead, they stick to theincorrect information tenaciously. The worse the situation, the harder they hold on, and the harder it is to backtrack. It’s got to be hard to admit that you made a mistake, or even that something went ‘wrong’ with a treatment. The damage done when you don’t admit that is infinitely worse.

An accusation of ‘factitious disorder’ is impossible to disprove. Primarily because there are no diagnostic criteria established for it, it isn’t in the DSM, and the nature of the accusation itself. I’ve had doctors saythat I was confirming their diagnosis because I had looked it up, and was therefore ‘hypermedicalized’. 🤦🏼‍♀️ It’s a bit like being sent to prison and told to prove your innocence, but the decision makers refuse to read your argument, because if you argue you are therefore ‘non-compliant’, and more likely to have done something else wrong.

This week in 2012 a doctor told me that I ‘couldn’t go to medical school in seven days, it would take seven years. It’s been seven year, and it still annoys me. I have all sorts of fantastic ideas running around in my head, most accompanied with a gleeful rubbing of hands together. But I doubt she’d remember the original incident, it would probably flop.

I’ve been doing my very best to shake this albatross, but it’s right in front of me again, and it stinks even more. It was traumatic, and I haven’t been able to write those stories about June or September, but they ripped the top of my PTSD. The ‘main events’ occurred in the fall of 2015, and I wanted nothing more than to let it fade into the past, but a central figure in this nightmare saw me and made things go sideways incredibly fast. If she’d left well enough alone I would have been happy with that. But she didn’t.

Every time a false allegation is quoted as fact it lends credulity to those before them. It only takes one rolled eye or finger twist at the temple to be put into the ‘bonkers’ bin; false information, bias and assumptions follow suit. After a time, it can’t be fixed. Errors are repeated, and repeated, and repeated… I did NOT go to the ER 12 times three days. I’ve read the false fact in three other reports since then. None of these doctors said ‘that can’t be right’… I don’t get it.

Why don’t they ask the most basic logic questions? For example, is it more that this person has a disorder that isn’t not widely accepted, highly controversial, has no criteria (not even ‘working’ criteria), nor treatment; or is it more likely that she has a disorder which is newly described, and an epidemic is happening, and has diagnostic criteria, has many treatment possibilities, where there is a MASSIVE amount of new research coming down in the area. And moreover, isn’t controversial at all… How do they land on the first one? I don’t get it.

So, I’ll send this out to all physicians. Even ‘queeriying’ a psychiatric diagnosis can do MASSIVE, IRREPRABLE HARM. Saying ‘I don’t know,’ might hurt your pride, but you’ll get over it. (A side note to all of my current doctors- you are the special docs who are fine to say ‘ I don’t know’, I’ll look that up.’, etc. I don’t get far with doctors who claim that I don’t know my own body.) I’m making a concerted effort to allow doctors who have said something ridiculous to ‘change their mind’, to provide gracious face saving ‘outs’. It’s worked a couple of times, but not enough.

Doctors are special and unique people. We put unrealistic expectations on them, but I think the unrealistic expectations they put on thelselves May be even more of an issue. It’s an incredibly difficult thing to have people’s lives in your hands. I cannot imagine how difficult. But. I also know that your patients will do MUCH better if you can say ‘ I don’t know’. The occasional ‘I would do that differently if I had a do-over.’ goes a LONG way, too. Admitting that you’d do it differently next time doesn’t mean you have any liability. It means you’re  good doctor. Acknowledging that there is always something new to learn is how medical science moves forward. And I’m a bit out on a limb here, I would imagine that it would reduce your professional stress levels, too. That ‘growth mindset’ is an essential skill for mental health.

As for how patients can help themselves and avoid being labelled ‘crazy’, I’ve got several ideas. Stay tuned.

To my fellow accusees. If you are here you probably know most of that info already. You aren’t crazy, you have a crazy illness. And always, always trust your own body over what anybody says.

Are you still here? Start a discussion!