How do people with psychosis use online health information, and do they tell their clinicians?

The accessibility of the internet is changing the way people learn about their illness, with “Dr Google” (as some health professionals may derogatorily call it) only a few search terms away. The online health information people find could potentially influence the decisions they make about how they manage their health and the kinds of treatment they want to receive. The authors suggest this may particularly be the case for people with stigmatised conditions.

There is a growing body of research into the experience of specific interventions delivered over the internet, such as computerised therapy, but this study wanted to explore how people with psychosis use the internet to learn about their condition and the implications of this.

Years ago I mentioned fish oils to a locum psychiatrist to be told quite sternly that I shouldn’t pay attention to fringe sites on the internet. I think it was the same pdoc that wrote in my notes that I knew a lot about my illness but had little insight.

I also would try and give them a record of how I was doing,feeling and thinking but gave up after they were less than enthusiastic/supportive of me doing so.

Nowadays I seldom mention anything I’ve found and when I do it seldom elicits a response.
Collaboration may be the way forward, but the truth is many mental health professionals are not great believers in it and in some cases quite hostile towards it.

Over all, we have to take all the information we get anywhere over time and try and do whats best for ourselves, The internet is not always correct as well as mental health professionals, Plus we may not be right as well. Trail and error I guess

My pdoc I see now, I have shared as much information that is available online regarding myasthenia gravis. (MG). MG is a rare disease, and is triggered by many thing, including the meds my pdoc prescribed. It has taken 3 years to develope this trust with my pdoc, after years of going to the Mayo Clinic, I had to lookup, print off, and add MG information to my local health record.

If one does his/her homework properly, one can earn the respect of one’s doctor/psychiatrist. It’s a matter of reading and comprehension over time and attention to detail. Doctors are not interested in fringe information, but rather scientific facts of which they are already aware. When I share my knowledge of these things with my doctors they are impressed. They know that I’m quite capable of communicating with them concerning my illness, it’s symptoms, and possible remedies. Google is completely insufficient as a source for information about mental illness, and one needs to actually read texts by M.D.'s for a good understanding of these illnesses. Otherwise there’s a lot of junk online and one can easily be deceived.

To think that all of us are incapable of separating the wheat from the chaff when it comes to what is good information, is,quite frankly, ignorant and offensive.
Not all of us are drooling idiots tempted by the lure of crackpot sites peddling reams of misinformation.
As for being able to communicate about my illness; I am more than capable of doing so and have never launched into a spiel about crackpot solutions to mental illness.

As for Google being insufficient given that most research ends up online that’s a spectacularly inaccurate thing to say . It all depends on how well you can use Google and the ability to be discerning.
A site like Google scholar has a veritable treasure trove of good information.

I recently sent the ‘make yourself heart attack proof’ youtube video to my pdoc because he’s had 4 heart bypass operations over the past 10 years. He was clearly offended that I knew more about how to prevent heart attacks than his cardiologist. But I don’t care about whether I cause offense. The truth is the truth and sometimes you just have to ride roughshod over peoples’ beliefs.