Honest question.
I’m a POTS patient with a connective tissue disorder who had to seek a lot of help to get back on track. I was exposed to a LOT of gaslighting and abuse by healthcare workers before being formally diagnosed and treated by one of the best research hospitals in the US. Frankly, it traumatized me.
I’ve also witnessed hypochondria first hand and know that it is a real issue. I feel that doctors are responding (perhaps badly) to real concerns about cyberchondria, TikTok illnesses, medication-seeking patients, drug use in patients, etc. As a social scientist, I believe that social media induced delusions are very real. I do think many people claiming to have EDS MCAS and POTS are either lying or are mislead. I’ve also witnessed someone faking an illness to solicit money online. So I’m not denying these are real issues.
But the things I experienced and I hear about gaslighting and abuse in the medical system, particularly from legitimate POTS and connective tissue patients, are sad and traumatic. Real patients are suffering from the bad behavior of other patients’ because doctors can’t tell the difference between CTDs and hypochondria. And because TikTok has made our disease famous whether or not we wanted it to.
Some patients have even died after being misdiagnosed with fictitious disorder when they really had vEDS.
I think this problem will only get worse and I’m concerned for myself and others who truly need medical care.
I know I’m out on a limb asking this but - what is the solution for cyberchondria? I’m very interested in the perspective of people who are not patients as we are obviously biased.
As healthcare workers, what do you think?
If you disbelieve a patient, can you explain why?
Tough Q: Do you really expect a generation of patients that gets everything from sex, to homework, to directions, to communication with their best friend… essentially all of their information… from phones, to not seek out medical information online?
Is there anything patients can do to advocate for better differentiation between hypochondria and legitimate illness?
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