THE 'POLITICS' OF ILLNESS AND AI DISEASES

[Rimmy]

Hello Everyone

Watching a recent documentary (available to watch on many platforms) made by a rather brilliant woman called Jennifer Brea and called 'Unrest' I was thinking of the many aspects with which it deals as also relating to those of us with PMR/GCA. The doco is primarily about 'ME' (once known as Chronic Fatigue Syndrome) but also about auto-immune diseases generally. It is an extraordinary piece of film making from a woman who has had ME for several years and we not only see the kind of impact it has on her life but also those of others - and it is both absolutely startling and really very moving.

Of particular interest to people on this forum is her discussion (in this film and an excellent TED Talk which she gave in 2016) about the prevalence of AI diseases in women - as 75-80% greater than in men and also as grossly underfunded, poorly researched and often misunderstood and mis-attributed as 'psychological' rather than physiological in origin. As she says this is not 'new' in the history of medicine with many illnesses once regarded as 'hysterical' in (primarily) women as now better understood for their confirmed biological origins. She does however point out that there remains a kind of residue from these earlier misconceptions and sometimes women are not believed or taken seriously when they present with a malady which is not 'easy' to diagnose (altho yes I agree that men get this treatment sometimes too). While this may not be quite as common with PMR/GCA I'm sure elements of this still inhibit prompt diagnosis when - especially with GCA - terrible and irreversible consequences can 'quickly' occur. Just how this lack of response can be easily researched I do not know - and I wonder if any retrospective studies could ever unearth the 'true' consequences of a complete lack of diagnosis or incorrect and untimely ones. My own mother (1970's) certainly never received a diagnosis of GCA - but in retrospect her symptoms appear to me as classic from the time she was sent home with Valium and fobbed off as neurotic before she subsequently lost much of her eyesight.

Anyway for those who are interested I highly recommend 'Unrest' - it is a moving account of an AI illness which is usually invisible to most of the world and yet devastating in its impacts. It is also a film about great courage, love and hope - get out the hankies - and if you don't have the time at least watch Jennifer Brea's TED Talk - it is also an eye-opener !

Best wishes to all

Rimmy

[Rimmy]

Correction - I quoted the incidence of AI diseases in women as 75-80% 'more' than in men - should read of course as just 75-80% in women cf. men.

[powerwalk]

How scary. This is the horror really isn't it - Doctors not listening - can end up with serious consequences. I have ME and now the PMR. But I'd been going to the GP with bad hip pain and unable to walk proper for ages and being fobbed off until the arms got so bad my husband went down. Only then did she listen - despite my having been in her office actually crying.

[Rimmy in reply to powerwalk]

Hello powerwalk -

I am very sorry to hear that was your experience - but following that film and what I have learned on this and other forums in the last year or so - I cannot any longer say I am 'surprised'.

It really is NOT OK that there are so many doctors who seem either or both poorly educated and insensitive to what patients are TRYING to tell them. And like Jennifer Brea says it also doesn't 'help' if you are a female as we are notoriously 'unreliable' with the 'truth' - even about ourselves. The additional fact that ME is SO poorly understood and what many medicos know about PMR/GCA and appropriate treatments is far from 'encouraging' would not have helped you in any way at all. So I hope things have improved for you as much as they can as I recognise the huge challenges you have had to face.

All the very best

Rimmy

[powerwalk in reply to Rimmy]

oh you made me laugh about us being so "unreliable with the truth"!!!!! Thank you so much.

[PMRpro Ambassador in reply to powerwalk]

Especially when we reach "a certain age". And as for being hysterical...

[Carrollee in reply to powerwalk]

Hi powerwalk. I have ME, pmr and GCA so I can sympathise with you. I thought it was the ME when symptoms of pmr first started but as they progressed i sought help and I was told it was arthritis and i put up with it until so bad that another doc did tests and hey presto it was pmr etc. Glad your hubby helped but annoying that we need a member of the opposite sex to be present to be believed. I once went to see a neurologist about a trapped nerve. When he asked me about any other health issues I mentioned the ME. Well the change in him was unbelievable. To say he sneered would be an understatement. I made the mistake of asking his opinion of ME. He felt that it was interesting that the majority of sufferers where women and years ago women would have done certain jobs and not worried about competing with men. However now adays they want to do all the things that men do but when they get exhausted from doing them they have to turn it into a condition, ME. All the best cc 🤗

[PMRpro Ambassador in reply to Carrollee]

I would have complained about him. And I hope he gets PMR or something similarly unpleasant...

[Rimmy in reply to Carrollee]

What a misogynist - aka as a nasty 'ratbag' - a real shame we can't put together a 'list' of the worst of them - their attitudes are not only discriminatory and nasty but often dangerous - with the potential to amount to serious negligence !!

[Polywotsit PMRGCAuk team member in reply to Carrollee]

Horrible.

[powerwalk in reply to Carrollee]

oh dear god - I am shocked. Well you can't donate blood now if you have ME - so there must be a reason for that!! And NOT all in your head! Shocking.