Cyberchondria, Health Anxiety, Lengthy Time to Diagnosis, or Disagreement about Need to Treat?

[ITYFIALMCTT]

There's lots of publicity about the latest report allegedly a high degree of health anxiety or cyberchondria amongst people referred for outpatient appointments: dailymail.co.uk/health/arti...

If we put this in context with how long it takes to obtain a diagnosis for some chronic conditions (e.g., see recent reports about an average 9 years for endometriosis and up to 15 years for Coeliac's Disease at one point) - how many people are in the 'pre-diagnosis' stage rather than in the midst of health anxiety or cyberchondria?

How many people are being dismissed as over-anxious because they're seeking treatment for clinical findings/symptoms that would 'qualify' them for treatment in another country but not according to UK guidelines? Is this more a disagreement about the time of the 'need to treat'? E.g., TSH >3 with symptoms in some countries but up to 10 in the UK?

How many people have undiagnosed rare disorders? Allegedly 1 in 50 of us. Now, they're not always clinically significant enough to cause problems but it can take a lot of diagnosis to identify some for whom their symptoms take a while to manifest and for whom there are problems (particularly those for whom the disorder is systemic so they have unrelated symptoms that are actually part of the underlying systemic condition).

And, as for health anxiety - it's not clear how they're using this term. The people with health anxiety can often have a lot of insight into their condition as it's completely debilitating for them. It's like people equating being very tidy with those who have OCD - who genuinely can't abandon a particular ritual, no matter how damaging, because they *know* it will cause harm to their loved ones or a natural disaster.

We need a lot more nuance around delayed-diagnosis times and disagreements around guidelines if we're supposed to have sensible discussions around these topics.

[ITYFIALMCTT]

The numbers around rare diseases vary enormously - the commonly used figure is 1 in 50 but there are other sources that suggest 1 in 17 but only if you define a rare disease as 5 in 10,000 of the general population rather than other definitions that are near to 1 in 10,000): raredisease.org.uk/what-is-...

I've just checked to see if the time to diagnosis of Coeliac's Disease has improved and it's now 13 years. coeliac.org.uk/coeliac-dise...

[greygoose]

I think you're absolutely right. Doctors are far too fond of dismissing people - and prescribing antidepressants! - rather than actually trying to find out what's wrong with them.

As for 'rare' diseases, anything can be rare if you refuse to test for it!

[ITYFIALMCTT in reply to greygoose]

"As for 'rare' diseases, anything can be rare if you refuse to test for it!"

I have an (allegedly) rare genetic disorder. Now, I think, based on my own experience that it's likely to be rarely diagnosed rather than rare. It couldn't be more obvious that 'something' is awry in the area - it's completely visible, and a glance by a knowledgeable person should prompt its existence as a potential diagnosis. Laypeople have commented on it all my life - much to my annoyance. Take a wild guess as to how many HCPs have noticed it.

Although mine is categorised as a rare genetic disorder, it's been identified for >100 years so it's not as if it requires genetic testing. It affects the appearance and the overall skeleton as well as presenting with several organ anomalies (so, multi systemic as well as being obvious at a glance).

[greygoose in reply to ITYFIALMCTT]

Doesn't surprise me at all. I've even heard Hashi's referred to as 'rare'!

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ITYFIALMCTT I believe the blame lies with the teaching methods in medical colleges who are sponsored by Pharma. Having reached middle-age my view is that too many NHS doctors lack an enquiring mind and too many have a cba'd attitude.

Not liking the term 'health anxiety' as it's trivialising patients' concerns. A 5 week wait for a GP appointment, an 8 month wait for a routine operation. How should a patient feel?

We're badly served, whichever way you look at it.

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I also often think that doctors became doctors because it was supposed to be a highly "respectable" and high-paying job to keep him going till he lands on a cushy NHS pension. How many doctors actually became doctors because they cared? I have seen these but they are often bullied around on NHS and eventually left UK/NHS altogether. To a lot of doctors, dealing with patients is merely a conveyor belt working in an NHS factory. I agree with ITYFIALMCTT.