Confessions of an English Scot

I have a confession to make to my fellow pro-independence campaigners, for which I am very sorry, and that is this: I often say ‘British’ when I mean ‘English’, and ‘English’ when I mean ‘British’.

I don’t doubt that actually many of you have picked that up – my husband occasionally corrects me on the point – but it’s a habit I’m striving to relearn. But it raises the question ‘why?’

Why do I confuse the two terms?

I know what it comes across as (which is why I’ve been trying to stop it) – it comes across as that proud English chit assuming that ‘England’ is an interchangeable term for any land in the British Empire, and that as a true citizen of that noble country I have the right to build myself a castle anywhere I set my flag!

flag castle

Air conditioning, sea view, private moat… *

I can promise you that, in my case at least, that isn’t the reason**.

I think it comes down to something much more basic and forgivable. I think it comes down to identity.

You see, I’m English for sure, but I’m also British. I was brought up English and British, and I have lived my life English and British. I’m from England, I’m from the UK. My passport is British but it says I’m born in England. Just like so many of the ‘No’ campaign say they don’t want to separate because their identity is British, my identity is British.

I understand that British and English are different things – of course they are. To be English makes you British, but my husband is British too (don’t tell him I said that) and is firmly north of the border, heart and soul. They are clearly not the same, but my identity isn’t different things – it’s not split. I’m me, and that me is both ‘English’ and ‘British’.

Part of the privilege of being English (and I don’t deny that we are privileged, nor that that privilege is unjustly given) is that we don’t have to differentiate those identities, and separate out what they represent. In fact, most of what we are given affirms that the identities are inextricably linked and intertwined. Our media paints a picture of Englishness and Britishness being so close as to be the same, and there’s little to contradict it in South English culture. For me, it was only when faced with people equally British but undeniably un-English that I started to question where the line actually is. I never had to before.

All that to say, when I encounter something ‘British’, I may retrieve ‘English’ (or vice versa) as the correct term. I’m not done renewing my mind yet.

This isn’t an excuse. I believe it’s the duty of the privileged to compromise in order to build up the disadvantaged, and that’s why I’m overhauling my lexicon. But I hope it goes some way to explaining why we English often mix up the terms, and might even make you reconsider the words you use and why.

 


*Photo credit: Sarah Groves. Image cropped. Source: https://www.flickr.com/photos/adnamssouthwold/5637302947/

**Well, not usually

A Moment for Meso

I first heard about Mesothelioma when I was a child- my parents were talking about someone who had died of a cancer caused by asbestos, and how unfair it was. They explained to us that a long time ago it had been used as a building material, but that they had discovered that even a little exposure to the dust could be deadly so they had stopped using it. That was all I ever knew about it, so I was shocked when I learned recently that although they have known it was dangerous since the 1950s, it wasn’t actually banned until 1999 and it’s still the leading cause of work-related deaths in the UK

Mesothelioma is a cancer of the cells which cover organs, usually those of the lungs. It develops slowly and is often not discovered until the sufferer is already struggling to breathe. Although it can be up to 40 years from exposure time to the patient developing the disease, once diagnosed the average life expectancy is a mere 1 year. It’s incredibly painful and debilitating, but the early signs tend to be subtle and so often missed – weight loss, side pain, shortness of breath, fatigue and a persistent cough.

One of the great battles faced by Mesothelioma sufferers, much like those of ME, is the lack of information available for patients and doctors. Although most people are aware that asbestos is dangerous, very few realise that it was still used as a building material in the UK as late as the 90s. Then there’s the large number of professions exposed to it – from those serving in the armed forces to those washing construction crews’ clothing – most of whom never knew there was any danger at all.

The good news is that there are treatments available, and new research is being carried out all the time – the prognosis nowdays is better than it was even 10 years ago! However, many doctors are still unaware of the latest options, and patients often struggle with understanding the illness and what to do about it. That’s why, as ever, the spread of information is key – and that’s something we can all help with.

We can combat poor poor life expectancy simply by knowing what to look for. Usually the illness is diagnosed very late, but the earlier its caught, the better the chances of survival. You can find out more about the symptoms at www.mesothelioma.com/mesothelioma/symptoms. It’s also a good idea to check whether you or a loved one worked in one of the industries which used asbestos – a list can be found here:/www.mesothelioma.com/asbestos-exposure/occupations.

If you’ve been diagnosed then there’s a wealth of medical and legal help available at websites like www.mesothelioma.com (US) and www.mesothelioma.uk.com (UK) where you can find out about the latest treatment and research options. There are also support groups and helplines available. In the UK you can sign up for clinical trials through the NHS at www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx and help researchers improve treatments and quality of life for sufferers everywhere.

Lastly, if you’re thinking of carrying out some DIY or home renovations then find out first whether your home was constructed with asbestos, so you don’t accidentally put yourself and your family at risk.

Like ME, this was a disease I had vaguely heard of but never really knew about, but it’s something many people know all too intimately, and those sufferers need support too. I’m glad I took the time to learn a little more and to share that knowledge. Information empowers us – the more we know, the better we fight!

We deserve better

This year’s ME awareness week, I’ve been discussing some encouraging reasons that it’s so important that we raise awareness. Today is my last thought for the week.

Reason 3: Because those suffering deserve better

I’ve looked in reason 1 and 2 at how people act on what they believe – and so the consequences of believing a lie mean acting as though that lie is true. The lies of ME include things like saying sufferers have ‘false illness beliefs’ or that they are fakers or lazy – and the consequences of those lies are evident to every sufferer.

They are things like mistreatment by medical professionals, ranging from not being taken seriously through to being locked in institutions and forced to undertake activities which are severely harmful. Outside of medicine, it can mean being shamed for having a disease, ostracised by a community and treated awfully. Families push people out for refusing to get better; spouses leave because they can’t cope and don’t have the support they need to care for someone who is suddenly severely ill; needed research grants are ignored; jobs unfairly fire people; gossip centres around someone who rarely leaves the house; benefits are cut off unjustly from those who are too ill for basic care – and it goes on.

People with ME do not deserve this treatment. Every sufferer deserves better. Every sufferer deserves rigorous scientific research to find a true treatment, a reliable cure. Every sufferer deserves doctors who have heard of their condition, specialists who truly understand it and real help to manage the disease’s course. Every sufferer deserves those around them to understand them and to come alongside them in their difficulties, not turn away.

I believe the route to this is awareness.

When doctors are truly aware of this illness, they will treat their patients in accordance with that awareness. When friends and family, carers and support providers are truly aware of this illness, they will move to support each other appropriately. When sufferers are truly aware of this illness, they will know how to take care of themselves and how to take charge of their own care where possible.

The lives of those affected by to this horrible disease are vastly improved by awareness, and that is what the sufferers, carers, friends and family deserve. They deserve a future where people truly understand this illness, where it is researched and treated seriously, where patients regain their dignity – they deserve a future with a cure.

My encouragement to every sufferer, carer, friend and family member this week is this: keep fighting, because every little increase in awareness that we make together moves us towards that future. I know so well that sometimes it feels like we are doing nothing. But each little action, each single person you inform and enlighten, moves us one step closer to the future of true understanding. Whether you have a popular public platform reaching thousands, an online-only presence telling your story, or a single conversation at the shops, you are helping spread that truth, and that truth slowly but surely makes a difference.

 

Awareness brings change

This week I’m exploring the needs for awareness, as an encouragement to all those I know who are fighting hard to keep raising awareness. I wrote about how different it looks from the outside, and that lead to the first reason it’s so important to raise awareness – because if we don’t tell people, they don’t know. Today is my second reason:

Reason 2: Because awareness brings change

As I discussed yesterday, when people don’t understand an illness, they make wrong assumptions – and the knowledge and assumptions we have are the basis for our actions.

Currently the assumptions that people have about ME, mostly formed from the negative portrayals in the media and their own preference for assuming the best, lead to a negative treatment and response of those suffering. They hear or assume fakery, false illness beliefs and over-emphasising, so they act as though sufferers aren’t really ill, aren’t as bad as they say they are, or that they would improve if they just thought positively.

It’s even worse when these lies and false assumptions affect the medical profession. Since they aren’t taught about the disease, they have no idea how to treat it – worse, with no accurate foundation, they are susceptible to listening to the serious miscarriages of science in the psychosomatic school of ME ‘research’. Someone with even a basic knowledge could not take such things seriously, but because they haven’t even that much, patients are treated like malingerers. Worse, many are imprisoned in psychiatric institutions, forced to exercise against their will and better judgement, ultimately making them irreperably worse.

But think of the opposite – what happens when doctors are adequately informed of how to treat the disease? Patients improve, they can manage their lifestyles. Or think about other illnesses which have previously been little-known: when enough people know about the difficulties, the much-needed research finally gets funded and there are breakthroughs in treatment. Even in the day-to-day, the way a patient is treated by someone with understanding restores dignity to a horrific situation, instead of degrading them further and adding insult to the grave injury of underserved and unremmiting disease.

Informing people is part of how we make that change. When the balance tips and people’s preconceptions are based on truth, that knowledge will bring change.

They won’t know

I wrote on Monday about how different ME, and many other chronic illnesses, look from the inside and outside. How those who don’t know what is going on simply can’t tell. So, I want to expand on this with just three reasons why raising awareness is so important.

Reason 1: Because if we don’t tell people, they won’t know.

I have noticed that we have a tendency to not want to believe the worst situation. We want to think that when someone tells us how bad their illness is, that they are over-emphasising it. Why? I suppose that it’s because if they are telling us truth then that situation is too awful to comprehend. I assume that it’s because if we knew how bad something really was, we would also know we would have no choice but to help. But perhaps that’s me not wanting to believe the worst.

It also seems that people want to believe that if someone suffers greatly they suffer because they have brought it on themselves. We may not explicitly believer in ‘karma’, but there is some comfort in the vague idea that if we are bad we get what is bad, and if we are good we get good. When we see something awful happen to someone good, we often rationalise tha they somehow deserved it, or their bad choices lead to it… because if it could happen to them, it could happen to anyone. If it could happen to anyone then it could happen to us.

As I have already mentioned, ME really does look invisible from the outside. When you’re too ill to go out, those outside can’t see the casue, just the result. So when people look on that, just the result, they maybe like to assume that the cause isn’t as bad as it really is. And as long as we let them keep that assumption, they don’t know any better.

If you add to this the tendency in most chronically ill people to hide how ill they really are, people often really cannot see or understand how much an illness effects someone. Actually, when we hide how it really is, we end up obscuring the truth of our situation and making it harder on ourselves.

We need to speak out and say this is how it effects us – the sufferers, the carers, the family & friends – this is how we suffer and survive. If we don’t tell them, they don’t know – but if we do tell them, if we don’t shut up about it, then they have heard the truth.

Observations on ME

Edit: Over 90 posts for the #May12BlogBomb, wow! sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

Observing ME from the inside and from the outside can tell very different stories. As a sufferer or carer you are acutely aware of every limitation, every pain. Many of us take great efforts to lie to ourselves about the true severity, but when it comes down to it you can’t avoid facing the limitations faced on your life. If you’re simply too ill to dress yourself, you can learn to appreciate the loungewear you’ve been in for the last week but you can’t convince yourself you were able to get dressed.

As a friend or acquaintance, you don’t see that side. On the torturous days when the sufferer wonders if they will even make it to the next morning, the outsider can only see their absense. There is no way to tell just from that the severity of the reason for it. On the days when the sufferer is as good as possible – perhaps they make it to work, or they are able to sit up and feed themselves, or able to tolerate a moments touch – the outsider can only see what they are managing in that moment. One who isn’t there all the time doesn’t see what’s going on all the time.

That’s why what’s portrayed in those surface glimpses gives such a wrong impression of what’s really going on. I only know that those around me who are suffering are truly in such bad states because I’ve been there myself. I may only speak to them rarely, and always when they are well enough for that, so I don’t see what they are really going through. I see just that but I can’t deny the reality of how awful their situation is – because I know what it’s truly like, I’ve been there. But for those on the outside, those without that intimate knowledge, what impression do they get? When you think of it like that, it’s easy to see how people jump to wrong conclusions.

They can’t know how much payback will occur from such ‘simple’ actions, how much careful planning has been expended for the possibility of flicking through a magazine. One who hasn’t seen it rarely dares to imagine the true state of a life with ME.

That’s why the job of telling people, of raising awareness is utterly vital – why those who are campaigning the best they can to let people know about this awful disease are doing such an important thing.

May 12 Blog Bomb

This post was written as part of the #May12BlogBomb for ME awareness. In tomorrow’s post I’ll start exploring some of the major reasons why those who are raising awareness are doing such a fantastic thing, but for now why don’t you join in: read about it here: sallyjustme.blogspot.com.au/2014/04/may-12-blog-bomb.html, or write your own post with the hashtag #May12BlogBomb.

ME awareness week 2014

Wow, that time again!

This year I’ll be writing some thoughts for the #May12BlogBomb. You can get involved here: http://sallyjustme.blogspot.com.au/2014/04/may-12-blog-bomb.html Make your own post and share it with the #May12BlogBomb hashtag.

If you live with ME, there’s also a #ThisIsME blogchain with a standard set of questions you can answer, started here: http://www.getupandgoguru.com/m-e-mecfsfibro-awareness-day-2014-blog-chain/ You can just make your own post and share it with the #ThisIsME hashtag.

No blog? You can have your post hosted here: http://www.kealiemardell.co.uk/

This year I highly recommend the blog of my friend Anna, who writes extensively about living with ME: lifeintheslowlanewithme.blogspot.com Today she has been hosting a tea party to raise money for ME awareness – blue Sunday – a popular event which has spawned others to do the same and collect money for charity!

If you want to contribute with her to raising awareness, there are many great charities out there- I suggest checking out Tymes Trust (http://www.tymestrust.org/), Lets Do It for ME! (http://ldifme.org/) and Invest in ME (http://www.investinme.org/)