I have raised this subject here before - that is the problem of women's bodies being regarded as essentially 'the same' or at least similar enough to male bodies that medical research (and subsequent treatments) has not often enough considered significant differences. This cannot be regarded as a 'minor' matter it is in fact a BIG issue which I mentioned five months ago in a post I wrote here called: 'Women and Heart Attacks Unequal Care Research'. The fact males have been and in many cases still remain the 'default' in contemporary perspectives for our health (and in multifarious other 'areas') is something that must be challenged - and so for those who have not yet seen this Guardian article which has apparently gone 'viral' recently it is well worth the read:
For those who may be interested in this huge subject it is also worth looking at the work of - (or commentaries about) the British journalist and feminist activist Caroline Criado Perez' in her 'new book, Invisible Women: Data Bias in a World Designed for Men, [who] argues that this is part of a larger problem: the “gender data gap.” Basically, the data our society collects is typically about men’s experience, not women’s'
This all makes disturbing reading I know - but it is better we think about these matters because 'discrimination' and 'inequity' are not always things that are blatantly obvious but often exist in the most implicit of ways in areas we would not automatically 'see'. For the future of all women and girls everywhere I hope this begins to change and of course I cannot help wondering how all this has - and continues to influence - our experiences and treatments of PMR/GCA.
Best wishes
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Rimmy
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Thanks for raising this issue on the forum with the new articles.
The differences in the way women experience pain , especially in relation to understanding the warning signs for heart attacks , strokes and in relation to many autoinflammatory and Autoimmune diseases is beginning to be highlighted more .
There is alot of work to be done , and although some of it may seem like scary reading the slowly growing awareness and beginnings of helpful advice is really a positive thing and worth looking at .
Its good to be prepared , like the Girl Guides , we shouldn't worry or get stressed when we read new information like this but consider it in the same way as any female health guidelines we get , a helpful tool that means we can act earlier when we notice things that in the past we may have ignored.
THANK YOU for forwarding this article, and for this tiny moment in time...focusing on the fact that we, WOMEN, are the "other", as compared to the "norm".
I have always wondered if the "rules" , to which we are forced to adhere .....are for us... or for those who have been studied...who may not be us.
I have never seen mammary glands before, and am wildly excited to see what my internal breasts look like... 72 years old, breast fed babies...never knew! I am Angry!
As there is what most of us consider a myth that PMR usually resolves within two years, I wonder if this is based on what seems to be the "easier" journey that most men (not all, I hasten to add) have through PMR, compared with women. Also, cortisol is a hormone and it's bound to affect males and females differently. Has that ever been studied? Plus the effect pred has on muscles, men have greater muscle mass than women so that would be something else to consider when treating women and understanding how pred affects their daily lives.
I was cogitating similar thoughts myself. Do men have textbook bilateral shoulder and pelvic girdle stiffness? Is the pain a female thing? Is the rib, breast, hand, feet...... a female thing? And yes very definitely is the 2 years a (mostly) male thing? How does the Matteson/Mayo 5.9 years split between M&F?
I've been hearing quite a lot about this on our radio lately, perhaps in response to the book. Shockingly there are female police officers who die because their body armour doesn't fit them. And isn't there a problem with availability of the right size space suits for female astronauts?
I cannot tell you how many times I've gone to my husband, or nowadays one of my sons, and got them to deal with an issue for me (recently the condo renos, but here were instances before this) because I knew a woman would not be taken seriously, but a man would.
Thanks I will read this in detail when I am travelling tomorrow to our nearest major city to get my first cataract op. It does however look interesting and it is good to see they state this significant point early on :
'In medical research today, the term gender is often used wrongly as being synonymous with biological sex '
Although both biological sex and gender are important with regard to attitudes, perceptions and education in the health sector and everywhere for that matter - they have a complex and often 'political' relationship which is not often addressed in medical research papers - so good to see it is discussed here. I'll respond further when I have considered this paper more - but my bedtime here in OZ.
Fascinating but maybe not surprising that the authors are all women and from Sweden !!
Good luck for tomorrow Rimmy - sister-in-law very pleased with hers! 🍀
Dont need to stay out if it. In general western medicine and culture is biased towards men which should be no surprise to anyone. But, for example, in terms of mental health care, men can come out worse in terms of some aspects of treatment. I suspect this is partially because masculinity has historically stopped men from reporting ill health and that some social and cultural construct "gender" means its not taken seriously as mental health seen as a woman's illness. There is lots of research out relating to gender, health and illness out there. Far beyond what we can discuss here.
There may be alot less scientific evidence on the difference between the experience of illnesses experienced by both men and women , which we would all say , man or woman , is wrong!
There are definitely frustrating times for some of us , when we are often told you can't have this or that , because it is a Male disease , women are rare ( been there) or it's a condition only experienced by women of a certain age , skin colour , size ( been there too , got the t-shirt , lost the gall bladder , got the GCA/ PMR too!) This is also wrong.
But , what I have noticed over my time on this forum , and while recently looking through Health Unlocked for help on Male Health Matters , men do not come off better at all, even when looking for advice on very common Male Health issues .
They aren't always classed as the "Norm" for every illness , and they are a lot worse off when he comes to finding help groups or website based health information specific to their needs in which to get peer support or vital advice.
Part of this may be because Men treat Doctors like Mechanics , they will only go near one when something seriously goes wrong because they don't want to appear silly or prefer to avoid a health worry that frightens them.
But , that shouldn't stop Health Organisations and Health Services providing that information anyway. They regularly don't , and GPs seem alot less knowledgeable about local services available to Men than those for Women's Health issues. Why?
Women speak to each other more . Women have been far more proactive about illnesses that regularly affect them over the decades so there is far more awareness of women's health issues and Mental Health experiences than Males.
Because Women are far more proactive in gaining themselves support and advice , and supporting their friends in getting health information , far more of the diet , lifestyle and exercise advice available on the internet for many dual gender conditions is geared towards to Female users not Males. In fact , sometimes the advice available is only suitable for Women and can cause further issues for Men.
Just like lack of internet groups that help men get advice to prevent certain Male Health issues , there is an equal lack of money put into Preventative Medicine and Local Advice Services for Male Health Care , because unlike in the fight for Women's Health Needs the fight for better Male Health Care has not yet found a voice strong enough to be heard.
And who is it that is shouting up for the guys here ? ( I'm ready for the punches too!) Another flipping , loud mouthed woman!
I do wish the Men would start shouting out , and as I have asked many times before
( luckily some Men are starting to speak up on medical things here now , thanks you brave few! )
it would be really helpful if we could see more posts by Men , specifically talking about Men's experience and Male Friendly tips for GCA/ PMR .
Because just like with all diseases , some of those tips could save lives and build knowledge , as none of us " mouthy" women on here may have heard of , and wouldn't have had, certain symptoms only experienced by men with PMR/GCA.
For me , creating equal awareness , and funding research, on the differences of experiences of Women and Men for all diseases , common or rare , should be the ultimate goal in better Health Care , providing information right for each gender but with equal status under that system would not seem like yet another part of the Male/ Female Divide.
But , equally , I would personally love to see a fight for health preventing the Health Service and Politicians from continuing to get away with the "divide and conquer" system of all the different illness and disease groups into subgroups that only fight and lobby for help for themselves .
I wish they all worked together , beginning to fight as one, to get equal care for all ,
Men together with Women , The Visibly Disabled and Invisibly Disabled , Big Issues and Small , The Common and The Rare
That seems to me to be the way to make a real step forward for us all.
Here's to a better System for All , healthy hugs , bee xx
Like i said too bigger discussion for here😂😂😂 i spent over 20yrs years researching, teaching and being an activist and advocate for such change. Time for next lot to take over my stuff now. I am too tired! Greek yoghurt and passion fruit here i come😁
Sounds good , I too , prefer the idea of leaving the protest marches to those whom don't struggle with the wobble for a wee let alone the fight for equality, serve up another bowl for me too! x
Oh don’t stay out of it! Civil communication is the way to go. We learn from each other, and sometimes difficult issues need airing, no offence is intended, but we shouldn’t shrink away in a world gone PC mad.
Another thought... is it any more difficult for a male to get the PMR diagnosis? Do Dr’s hesitate as the majority are female?
Do you think that is just because it is more common for women to suffer from it , or that Men are not being diagnosed , possibly because it is being overlooked as the cause of their joint pain and inflammation when they have other illnesses or mild symptoms?
I think it is more common - almost all (possibly all) a/i disorders are found more in women than men. I don't think it is necessarily overlooked - men are notorious for not taking their ailments to the GP! And until quite recently it was assumed to be a natural part of aging - even in young and fairly fit women like me at 51.
It sounds like a complicated process! Its always harder i think when theres a few conditions travelling together.
How long did the whole process take from the first gp visit? I find it interesting when people get automatically referred to a rheumatologist. I presume you were already in the system due to reactive arthritis. I think if i hadnt have flared in first 5months (gp reduction.plan), there was no talk of rheumatologist. I wasnt impressed with him the first couple of meetings but since 10mg he has allowed me to self-manage. 3 years from.dx i am at 6mg plus dmard and staying here for a while. I am.lucky that thus far my esr/crp have gone up and down together with symptoms more or less.
Long ago i recognized the egocentric nature of many research projects. ... As I recall, research projects including women were so cumbersome...what with periods, hormonal fluctuations, and so forth. didn't it make better sense to use the "perfect" specimen (male), which does not have all the abnormalities that come with women bodies??
Sorry for sarcasm...well, not really... but you get it!
So, as this applies to PMRGCA, since senile rheumatic gout probably affects elderly women, more than elderly men(who dont live as many years as women),;who wants to invest time and $$$$$ (emphasis $$$$$), on researching the illness. Prednisone was discovered to help manage inflammation of PMRGCA.... in....., 1982. !!!!!
It was acknowledged that prednisone is not without side-effects, and it does not actually treat the disorder...only manages the inflammation.
.....whatever...Good Enough!! High Five!
Hummmmm, well, I know its time to slide off the page, and let those
And a great '2 cents worth' as well Purplecrow !!! The notion of women being 'derivative' from the 'normal' male is of courses ages old - and very evident when reading into the history of medicine, philosophy and numerous other subjects about humanity. Although we are now in the 21st Century many of these 'ancient' attitudes linger despite a greater awareness of exclusionary and discriminatory ideas and practices. This situation is clearly highlighted by the fact that women (and children) are still - globally at the 'bottom' of almost every socio-economic 'heap'. I therefore find it both disturbing and irritating that there are still those who complain that it is males who have not had a 'fair go' in many areas. Yes - obviously there are specific issues which concern and apply to men for both biological and social reasons - but as the #MeToo movement has found it seems we can't even have '5 minutes' to point out the seriousness of many issues regarding the treatment and perceptions of women without somebody chiming in about the special interests of men ... I will say no more - but really TRULY give us a break !!!
Thanks for this link - this is quite INCREDIBLE - since when have (biological) men had a uterus and breasts I really thought you were JOKING - my partner and I laughed a lot - BUT I see now this was for real - and I also found this discussion here :
Of course other 'racial and ethnic minorities' casually ignored or discarded - as well as women, children and 'the elderly'. This relatively recent kind of idiocy suggests we still have a very long way to go in terms of getting anything like 'equitable' medical treatment - not to mention attitudinal change in almost any other area of our lives.
More if you can take it once you recover from surgery.
Thanks for this link. Its good to note more equity with regard to better gender balance of research subjects.
I wonder how PMRGCA research fares in this comparison. I do suspect a better balance now, vs. past projects.
I have questioned why the only treatment for our disease is so antiquated. ......With the well documented side effects of steroids, it would seem that new options should be on the horizon. However...I am not a medical person, and There may be more out there than I know.
Thanks - I have more or less just had it on the first eye- a breeze as everyone said and I'm looking forward to it improving in the next few days. A 'good' thing I did while in the Eye Hospital is that I 'educated' TWO nurses about PMR and GCA - they had never HEARD of it - another one had - her Dad had PMR for years undiagnosed - so I am very happy about that !!!
I had 2 student drs coming to the house for their course....explained it to them lol. Getting in esrly. It feels good doesn't? Someones sight may be saved because of your discussion and pain may be diagnosed.
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