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