This is a tough topic for me, and I’ve opined on it before.
I spent far too many years of my life engaged in two totally separate, years-long medical odysseys – the first: ophthalmologic, the second: cardiac.
In both odysseys, I was invalidated, dismissed, and gaslighted*, often by the top physicians in their field.
But I persisted, did no end of research, pushed for additional testing, and – through dint of effort that no patient should ever be required to expend – figured out what actually was wrong with my eyes (which was quickly adjudged to be disabling) and my heart (which is terminal).
How much of a unicorn am I, really? I have no idea. How would we know?
As medicine evolves, the pressures on providers seem only to increase. The time pressures on them can be enormous, and I was not their only patient.
But I was definitely my only patient. I had the time.
I spent countless hours learning foundational stuff about both ophthalmology and cardiology – enough to put test data into context; enough to understand how much weight to give each salient piece of test data that my pleading with physicians eventually elicited.
I’m fortunate that ‘medicine’ is a language I can learn to speak.
I’ve mentioned that my wife is a Nurse Practitioner who works at a Medical Residency Program, where new doctors gain hands-on experience, under faculty supervision, in primary care.
Because of my story, my wife has taken to never telling a patient that there’s “nothing wrong with them,” or – far, FAR worse – gaslighting them.
Instead, she’ll say, “I don’t know what’s wrong with you at this point,” or “all of your tests are negative,” or “… but we can only test for what we can test for, and the majority of those tests only give a snapshot of a point-in time.”
My wife also shares that approach with the faculty and residents.
My eye issues were confirmed (after I repeatedly suggested that X might be my diagnosis) with a week-long course of eyedrops. That’s it. That’s what it took. The confirmation was absolute – all of the objective findings resolved with the drops.
My heart issues were confirmed with repeated endomyocardial biopsies. The confirmation there, too, was absolute.
In my case, I was the only one who accurately weighted the evidence before us, understanding how sensitive and specific each test was – which test results mattered and which really didn’t.
I was also the only one who believed that there was actually anything wrong with me, and that it might be serious.
*A couple that still stand out to me, years and years later:
- (By one of the paragons of ophthalmology, written in my chart) “I told the patient to stop worrying about himself, which is obviously his basic problem.” It wasn’t;
- (By another renowned ophthalmologist who authored several ophth. textbooks – in my chart) “The patient exhibits zero accommodative amplitudes – highly unusual at his age.” This was it. This was huge. Had he bothered to consider why this might be the case, I may have saved several years and much unneeded heartache;
- (By a renowned cardiologist at a famous teaching hospital, also in my chart) “The patient claimed to have interpreted past echocardiogram data in a particular way, presenting it to me as a potential diagnosis and asking me what it all amounted to. I told the patient that the data he described didn’t accurately reflect his test results, and that – even if it did – it didn’t describe a particular diagnosis. I also told the patient that – because his ejection fraction was normal – he did not have heart failure.” He really couldn’t have been more wrong.
