Medical articles refer to PMR/GCA sufferers as being 'the elderly'. Other categories define themselves, why not PMR/GCA sufferers?

I was just reading through medical articles, written by specialists who treat those who suffer from PMR/GCA and I am shocked at the number of references to 'the elderly'. This blanket term has prejudices in the minds of many people, medical specialists included. I am 61 and not in receipt of my state pension for years yet. I do have genuinely 'elderly' relatives who are dependent on me and I also have bills to pay, such as the mortgage and council tax. I am still able to contribute to the society in which I live and might still be here in 30 or even 40 years time! I resent being labeled 'the elderly' just because I have GCA/PMR and suggest the patient group makes representation to medical specialists to be classified under another, more accurate and discerning heading.

[iforget]

This tag doesn't help in so many ways... in addition to the issues you have raised PMR is considered a late onset disease of older people which leads doctors to dismiss the possibility of its existence in younger patients - even when faced with blindingly obvious symptomology - leading to unnecessary suffering and distress and a longer time before official diagnosis and treatment.

I am in my second year with PMR and I have just reached my mid fifties. I am rather amused to find I now qualify for older persons services in my local area...how odd that they want us to continue to work into our 70's and yet class us as elderly at 55...do they not realise we are the young old? I think I shall just have to toddle off to the day centre for a spot of Bingo and some mischief ...

[MiuMiu]

I entirely agree - the contined blanket term 'the elderly' is ageist and dismissive. Perhaps it accounts for the lack of research into PMR, especially as it affects a lots of women. The more I read posts the more I can see that PMR can affect anyone - and especially women - across an age range of 40 years or more. So less of the age categorisation please and lets stick to the medical condition. We need to become VISIBLE on our own terms!

[Celtic PMRGCAuk volunteer]

Wendy, this illness traditionally appeared in those aged over 70 but it seems that it is now appearing in an increasing number of much younger people. However, according to the BSR Guidelines, it is still 'one of the commonest inflammatory rheumatic diseases' among the older generation.

I can see your point - the Guidelines are in the throes of being updated and it will be interesting to see whether this subject will be addressed.

[Hidden]

I am 57 and recently diagnosed with pmr.Lets hope in near future they update the

information that its not just the elderly who are affected.

[Hidden]

Has PMRGCAUK no power to address issues which affect its supporters? If the updated guidelines refer to 'the elderly', if I was on the committee, I would not just be 'hoping' but insisting the guidelines are redrawn to be inclusive of people who are not elderly (whatever that means!)

[Thomas45]

I consider the word 'elderly' to be insulting. Strictly speaking it means someone of an older age, but to me equates with a degree of fraility of mind. I have a friend who is 75 who because of Motor Nerone Disease is unable to speak, and is frail, but her mind is active, and she can communicate through an iPad. None of her friends would say that she's 'elderly'.

It appears to be a desire of jounalists to put everyone into 'neat' groups, when in reality we are all different. If we're not described as ' elderly' then we will be described as 'pensioners'. I was a pensioner at the age of 52, and although I'm now 69 I'm light years away from being elderly.

PMR took hold of me 3 weeks before my 68th birthday, just over a year ago. Now it's controlled and I'm down to an average of 8.55mg of prednisolone a day. I can do almost everything I could do when I was 30, just a tad slower.

[Hidden]

Well, we must campaign to change references to PMR/GCA sufferers as 'the elderly' because this is a catchment which is easily shelved by the struggling NHS. We could live until we are 100 and must fight for ourselves to get the best treatment possible (no-one else will fight for us). If we are categorised into a catchment that has no value to society, our physical and mental wellbeing will deteriorate. Physically and mentally we need to be supported to be at our optimum so we can make valuable contributions to our families, communities - and to the exchequor.

[piglette]

The UK Home Office specify that if you are over fifty years old you are defined as elderly.

[Hidden]

Dear Piglette, if someone is 50, they might live to be 100 and are therefore 'middle age' or if they are classed as 'elderly' at 50, they could be elderly for 50 years of their life. There are benefits to being elderly, ie a pension, etc. I can find no reference to the content on your last post above. Please provide the link. The UK Home Office no longer refer to antiquated terminology, describing people as 'the', such as 'the elderly'; 'the disabled' etc. They refer to these categories in a 'person centred' way, such as 'older people'; 'people who have disabilities', etc. There are laws against age discrimination.

gov.uk/discrimination-your-...

and this you.gov.uk site is for anyone using terminology in the public domain.

bihr.org.uk/sites/default/f...

gov.uk/design-principles/st...

As this forum is for a particular patient category (those who have PMR and GCA), if PMR GCA are being defined within a particular category which is inaccurate, pressure should be used to remove any stigma which is being created through language. We live in the day of 'people power'!

[Pipistrelle]

I believe this has already been addressed for all these reasons in Dr Dasgupta's treatment profiles for the conditions? It is also mentioned specifically as an issue being more widely campaigned for in Kate's great book. Most websites and doctors continue to list this/view this as an 'elderly' illness. I got it at 51/52. If the Home Office defines elderly as over 50 then this must be a holdover from decades ago, and they are surely way off current standards for life expectancy!! I cannot imagine 50 being considered the starting point of 'elderly'... And the term is condescending whatever one's age.

[Hidden]

Another sufferer reminded me last week that many sufferers are very seriously unwell and the illness and its medication both lend themselves to causing anxiety and distress. Many might be carers for others (partners, elderly relatives, etc). Very unwell people do not like to complain or rock the boat. What chance is there to challenge stereotypes or fight for better treatment? Maybe one person could be elected to do this.

[Lawrie]

I was diagnosed at age 50 and have had PMR for 2 years and 8 months now. So I believe the medical industry is off base on many points with this diisease. It is a horrible disease to deal with.

[Thomas45]

Why do we have to be 'middle-aged' or 'elderly' or any other label? If you need to give me a label then 'tall', 'pigeon-chested', '69 year-old' or 'asathmatic' would be accurate. Anything else would not.

[polkadotcom]

I've stated before that PMRGCAuk is doing all it can to redress all these generalities. In comparison with other automimmune conditions and/or chronic conditions it is very early days for both PMR and GCA as these surges in diagnosis in younger patients has only happened during the last two or three years.

I'd like to ask what you think we are doing? Why we have a helpline and why we have this forum? And why don't you all join us in helping these changes through instead of belittling our efforts? The more members we have, the louder we can shout. The more support groups we have, the more people we can help, whatever age they are.

Threads like these really don't help the common aim.

[Hidden]

It would be helpful to define the aims and objective of the forum. I can't see where I placed any blame on this forum or this organisation. PMR/GCA sufferers exist across the world and as a patient group. They need to draw attention to constant references in medical papers which refer to 'the elderly' excludes those who are not in this catchment age range which is often unstated. I think I am at liberty to make this point whether you wish to take it personally or not or whether it has been raised previously or not. If you have a problem with me drawing attention to it, please explain why I am not allowed to hold an opinion on this, especially as I am not 'elderly' and resent being referred to in this way.

[Polywotsit PMRGCAuk team member]

Dear WendyUK

You are absolutely right that the labelling of PMR and GCA sufferers as 'elderly' represents a generalisation which has a number of negative consequences. As polkadotcom has pointed out, we regularly make reference to the fact that we (in PMRGCAuk) are campaigning vigorously for this label to be abandoned. However, it is the case that PMR and GCA do attack people who are in the older age groups. The average age of onset is 72. The average age of membership of PMRGCAuk (at the last check) is 76. It is important that this is recognised as an illness of the older body because it may be linked to the ageing process in some way, and it is important that research should recognise this. Also, we have the situation that the most commonly effective medication for PMR and GCA is prednisolone over the long term. it is very important that people are not put on these drugs unnecessarily. Doctors have to use the age range reflected in epidemiology to help them with diagnosis. This is unfortunate for people who are in the younger age range and who have to wait a long time for diagnosis. Sometimes there are awful consequences such as damage to eyesight. We at PMRGCAuk are working very hard to get doctors to stop referring to 'the elderly'. It is hard work because they are creatures of habit. However, we have succeeded in getting the word removed from the newest versions of the PMR and GCA guidelines. To do more, we need the support of yourself and other members of the forum, especially those in the younger age ranges. We have to face the fact also that the membership of the forum is 'skewed' towards the younger age range because people in their late 70s and 80s are less likely to use the internet. This is changing every year, but still, our older members are less likely to be internet users than the younger ones. There is a 40 year age range between our youngest members and our oldest ones. That is why we chose the phone number '5090' for our helpline.

Forgive us if we seem a bit sensitive but in one of your posts you did seem to be saying it was up to PMRGCAuk to 'insist' that the term elderly is dropped. You must be aware that no charity is in any position to 'insist' on anything in the medical profession. The best we can hope for is a degree of influence, and I believe that over the last four years, since we were launched, we have begun to achieve that.

[Hidden]

Thank you for your reply Kate which supported my post that PMR and GCA are not illnesses exclusive to 'the elderly'. This is not a clearly defined age group anyway. I did not suggest that the charity should 'insist' that medical profession avoid using this misleading term but the charity exists for 3 purposes, support, research and awareness. My post was about awareness. Though the grass roots element of the charity has a forum, a helpline and support groups, we are fairly helpless unless there is awareness amongst the medical profession. This is what motivated my post. I had researched my illness and I told my GP I had GCA, but I had 6 months of anxiety, sleepless nights, pain and discomfort - and a deterioration of my eyesight - before I got a proper diagnosis. Is there a problem with challenging the medical profession about the use of the term 'the elderly'? Other patient groups also campaign for better health care for their particular speciality and the terms by which they are defined is one way of doing this. At the very least, the term 'elderly person' would be an improvement. I had only just turned 61 and won't get my 'old age' pension for a long time yet!

[Hidden]

PS For all the education, training and ability that clinicians have at their disposal, why do they not use a less ageist term (especially as many of them are not far off usual retirement age)?

The term 'the elderly' as an age group needs clarification. It could be seen as a value judgement and therefore an abuse of power. It can be considered a stereotype and those within this unstated age group could be marginalised (especially as many with the illnesses are women (though not all) and women are an oppressed group in practically all societies and organisations. 'The elderly' is an easy group to discriminate against, rather than in favour of, and this is a term which can easily be construed as objectifying a group of people over a certain age, who might not be in work and therefore can be overlooked if they are suffering from aches and pains or disabilities. Such devaluation implies oppression. Self evaluation and self definition are two ways of resisting discrimination. "Participating in self awareness helps to preserve the self esteem of the group that is being oppressed and helps them to avoid dehumanisation." (Collins 1986. p S18) I had to mention it because I, for one, am not prepared to collude with this mentality.