A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.
More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.
Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”
One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”
This hits hard. After dealing with rheumatologists for some time now I’m fairly certain they’re responsible for high levels of conspiratorial thinking among the older people. As you grow older you realise our understanding of medicine as a science is extremely narrow and shallow and therefore certainty with which doctors work is seen as being smug and reckless. God help you if you have a seronegative disease (which ultimately means there’s no known biomarker to test for).
Yep. A lot of professionals are somehow convinced we’ve already discovered basically every disease possible, and that they know of every disease, therefore, it they can’t figure out what’s wrong with you, there must be nothing wrong with you. (Very flawed logic when you zoom out and look at the grand scheme of things, but when you’re an overworked professional on a tight schedule, I guess it’s just kind of how you were taught to do things and you don’t really question it).