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.

Research & Controversies

This post is part of the ME Awareness Week Synchroblog. Want to take part? Here’s how:

1. Produce your own post on the topic “Research and Controversies”, as narrow or broad as you like. It could be a blog post, video log, story, poem, picture, or even just a comment on the blog… it’s your take on the topic and what you want to say.
2. Post a link to what you’ve produced in the comments section. You might want to provide a short description, too.
3. Check out some of the other links; leave comments if you can, and share what you like!
4. Tell people about it – this is about raising awareness, after all.

Today’s subject is Research and Controversies in ME (or CFS, CFIDS, ME/CFS… and there’s a controversy right there!) But – why are these two subjects thrown together? We’re not talking about some rare and recently discovered mild illness – we’re talking about a widespread disease, something that by some estimates has more sufferers than breast cancer, HIV/AIDS and lung cancer combined; a disease which has had known outbreaks since the 1930s; a disease which causes one in four sufferers to be so disabled that they can’t take care of themselves.

Yet somewhere along the way, it did become controversial. What started out being widely acknowledged (due to the overwhelming medical evidence) as a neurological disease, which severely afflicted previously healthy-subjects and was often lifelong, got slandered as “all in the mind”, something put on by the bored and overworked to get a holiday or a free ride on benefits.

The overwhelming evidence still points towards it being entirely biological. It still says it’s a disease of the nervous system, and also the immune system, the hormone system and goodness knows what else. But somehow the public and the majority of healthcare workers (at least in the UK) have been spoon-fed the lie that it’s at best a mental disorder, needed to be treated by convincing the pretender that they are healthy, and forcing them to do increasingly large amounts of exercise and activity – the very things almost guaranteed to make the ill person worse. And other diseases have been bundled in too, further complicating valid diagnosis and useful treatment.

In the UK, the vast majority of research that purports to be into ME is a sham, based on false theories already a hundred times disproved before they were even voiced (had anyone cared to check). What little biological research there is is underfunded, ignored, and ultimately undermined by those who insist that this devastating, life-threatening disease is nothing more than imagination.

Samuel has a name for this: Misopathy*. (Mis: wrong, pathy: disease).

Of course, a lot of sufferers know exactly how this happened, and who is behind its continuation. But knowing how it happened is only important in so far as it helps stopping it happening to other diseases***, and turns the tide against suffering, giving ME the recognition it requires. Justice would be nice too, but in this life I’ll settle for freedom.

There is hope, though. There’s real biological research happening all the time, and it’s been increasing in the recent past. Just recently we have had the release of Newton’s muscle studies, confirming what we already knew about the abnormalities in muscle cells of ME patients, as well as one of the most exciting developments – the Rituximab trial, a potential treatment which is looking extremely successful in early studies.

So – what’s your take on it? What’s the biggest controversy, or the one which hits closest to home? What’s the most exciting development or most misunderstood part of the illness? Leave a comment here or on my Twitter!

ME Awareness Synchroblog

* Mis = wrongly/incorrectly, patho = disease
** And yes, it will happen to other diseases. ME wasn’t the first disease to be treated in this despicable way (MS? Parkinsons? AIDS?), and presumably won’t be the last.

Edited for clarity on 12/5/13

Tymes Trust

Head over to http://www.youtube.com/user/Bazmufc8491/feed?filter=2 later today to check out a summary of “Living with ME” as part of the ME Awareness Week synchroblog, or join in the discussion on yesterday’s video: http://www.youtube.com/watch?v=scaATvr_50o

My last charity for the week is Tymes Trust (http://www.tymestrust.org/), providing some of the hardest and most necessary advocacy, for those with ME who are not able to advocate for themselves. It’s estimated that around 10% of ME sufferers are children, and they face some of the most difficult circumstances as a result of the disease. They are often forced to attend school to the detriment of their health, and can be removed from their families if they fail to show improvement.

Tymes Trust work hard for children and young people with ME, advocating for them and giving advice to families, as well as generally raising awareness. A variety of informational resources are available on their website, and they also provide an advice line for sufferers and parents.

A great part of the problems faced when dealing with institutions is that they are unaware of what ME really is, and so Tymes Trust provide reliable professional advice which can avert disaster borne of misunderstanding. They give much needed help in difficult situations such as schools refusing to provide appropriate education for ill students, or doctors insisting on treating the disease as a mental health disorder.

 

Tymes Trust

Living with ME

This post is part of the ME Awareness Week Synchroblog, hosted today by Barry at http://www.youtube.com/watch?v=scaATvr_50o with the topic “Living with ME”. Youtube doesn’t accept links in the comments, so if you have a post to share please link it here, via twitter or break the address up.

I feel like the best explanation of Living with ME, from my point of view, is the series I ran last year for ME Awareness Week. Ironically, It was never finished because writing it caused me to relapse for a long time. I still intend to go back and complete it… but then, maybe its incomplete status is a more poignant reminder of the realities of living with ME?

Sunday: https://apaththroughthevalley.wordpress.com/2012/05/06/sunday/

Monday: https://apaththroughthevalley.wordpress.com/2012/05/07/monday/

Tuesday: https://apaththroughthevalley.wordpress.com/2012/05/08/tuesday/

Wednesday: https://apaththroughthevalley.wordpress.com/2012/05/09/wednesday/

Thursday: https://apaththroughthevalley.wordpress.com/2012/05/10/thursday/

Friday: https://apaththroughthevalley.wordpress.com/2012/05/11/friday/

ME Awareness Synchroblog