Thursday, 11 September 2008

Money is Power - copied from MWAH!

Difficult to survive in this world without money. Even more difficult if you're faced with a mental health issue that makes employers treat you like a beggar. If you're also having to pay for treatment and specialist care then I'm sure there are times when it just feels too much of a struggle; time to stop kicking and let the system take over. If only that were such a comfortable option. There is, however, a way out – and it's free!

Now, most of us will be treated inside our state health system – with extra insurance cover if you're lucky. That state health care depends on a huge bureaucracy supported by taxes and delivered by individuals with a range of abilities and flaws. In the past year I have seen 10 different consultants – including cardiologists, neurologists, epileptologists and neurosurgeons – and as of writing am nowhere near discovering a concrete, definite, unambiguous, iron-clad diagnosis. Not all the doctors were 'bad' as such, but then again, not all of them were all that good. Some seemed to care more than others, some actually took the time to listen and discuss options, some just seemed to enjoy a snap decision as if it was a sign of virtuosity. Many specialists will work for both a state and a private hospital, so that handing over money is still no guarantee of a premium service. However, if you find your specialist unsympathetic; or if the side-effects of your medication are serious; or if a particular line of enquiry is being blocked to you; or if, for whatever reason you feel you really need another opinion, then having that extra money puts power back into your hands.

I know from my own experience that symptoms do not always yield a clear-cut diagnosis. Many neurocardiological conditions can be subtle and complex. The starting points are always those that are statistically the most likely. If you happen to have a fairly rare condition it could well take years to diagnose it. But during that time you could also end up taking medications you don't really need. A misdiagnosis can have very serious consequences. You may be subjected to damaging side-effects that you didn't need to experience; you may end up with social or legal problems due to a condition you don't really have; you may even have restrictions placed on you at work with potential loss of status or income. In short, a misdiagnosis can ruin your life!

This is where a 2nd, or 3rd, or even 4th opinion is worth the money spent... assuming you have it. I understand that any disorder can be doubly crippling in terms of losing both one's quality of life and one's earning potential. I read on many forums about people trying, often desperately, to get back to work. Rarely is it possible to return to one's profession full-time. Often people start looking far and wide, even mundane part-time jobs can feel worthwhile, just to get some human contact and some extra cash. You're not alone – this is a problem that afflicts every country in the world. At a conservative estimate the annual global productivity lost to mental health problems comes in at over $4 trillion! Worse than this is the added fact that the majority of sufferers are not even classified as unemployed – as that assumes the possibility of future employment – but rather as “unable to work”. This seems to draw a line under our careers, a life left to dwindle away under the care and control of others. The internet is a liberating experience in terms social contacts with people across the globe who suffer just like you. Now it is also time to harness that community to bring financial benefits to us all: financial benefits that we need to feel empowered.

I will discuss how you can all create an income stream from the internet. As you are reading this I assume you have internet access. That is all that you need. You do not need to pay a penny to set up your own money-making website. You just need to know how. As we build up this website we will explain everything you need, without even charging anything. All it needs is for the mental health community to realize that it has financial strength and power. The financial strength of a community as a whole will help you build your own financial security and to regain some control over your medical condition.

You will be able to get that 4th opinion if you need it. You will be able to get extra assistance with those side-effects. You will be able to get any psychological support you need rather than feeling isolated. You will be able to insist that a full set of tests be done – or even redone – just to prove beyond a shadow of a doubt that your treatment is optimal.

I am not here to promote the private sector, but if you are becoming frustrated with your current health care it is good to have that option. You may well even be happy with your treatment but wish to investigate alternative therapies to ease some of the side-effects. But taking a global view, there are countries where the national health system is fairly basic; where the costs of going private are very low compared to the first world but are still often prohibitive for a person earning local wages in a developing country. For example, a mere $100 will not get you very much in the UK or USA but is more than enough to get an appointment with a specialist in Thailand, including travel and any medications. I will talk elsewhere about medical tourism, the point here is that a financial shot in the arm is one less thing to worry about. And I also don't know of any charities that are giving out money to individuals. Today, as I write this, I saw on UK TV a blind man who has been refused treatment on the NHS reaching out to fundraise for a private operation. So this option of self-financing is by no means rare and should really be considered if you are having doubts about the quality of your health care. This is where our project comes in – to help individuals help themselves.



MWAH! blog is now closed. Any stray links you may find, ignore them or let me know in a comment and I'll remove them.

MWAH! introduction - copy

The aims of MWAH! are two-fold; one personal, one social. On a personal level we need to make ourselves more noticeable, more conspicuous, and in so doing create a stronger community. Communities are held together by social and cultural bonds, but also by economic ties. Creating a community marketplace to express our potential and regain our financial power aims to improve our quality of life. This added confidence and financial freedom will help us fight the stigmas, misunderstandings and injustices that are still prevalent in every country regarding mental health issues. Our vision is global, our tool is the internet. We cannot wait around for donations, grants or charities to improve our lives. Whether you personally have a disorder or you are a carer, you have something to offer. Everyone has a story and it is shared stories that create communities. We can help you find your internet voice and with it the confidence to be heard loud and clear.

Our initial focus is on epilepsy, but we really do not want to just limit ourselves to this. Epilepsy is a complicated disorder with a whole range of causes and effects. Indeed, it has been estimated that 20% of diagnosed epileptics actually don't have epilepsy! One in five people reading this and taking anti-epilepsy drugs are on the wrong medication! This is really serious; given the often debilitating side-effects of the medications, the legal restrictions and social stigmas, do you really want to be misdiagnosed? There are many other reasons for having what at first may appear to be epilepsy; these may be neurocardiological or even psychological. This is why I do not want to limit ourselves to just epilepsy but to include the whole range of mental health issues. We do not want somebody to suddenly feel excluded just because their condition has a new label. We are more interested in encouraging people to push for a correct diagnosis and appropriate treatment.

One other issue is also coming into focus in my own mind – the pressures of what our mediocre society considers normal. Now this part gets a bit personal, but frankly, if you're not here for personal reasons then what are you doing here? As a child I was precociously intelligent, which may not sound like much of a disease but also has certain social problems attached to it. Edgar Allan Poe put it like this,“From childhood's hour I have not been As others were; I have not seen As others saw; I could not bring My passions from a common spring. [...] And all I loved, I loved alone.” Later, in my twenties, I went through a number of years of deep depression, yet came out the other side not by “pulling myself together” but by going deeper into the abyss and coming out the other side through a mixture of study and meditation, using the wisdom preserved in books when there was little around me. Now I have epilepsy and am supposed to crawl under a rock and hide away because, yet again, am not quite as normal as your average chimp. Well, there's a pattern here. A pattern I don't particularly like but one I can perceive; one that perhaps I can do something about. What is normal, average, mediocre is just the tyranny of those intolerant of anything outside their own experience; things that are sometimes way beyond their experiences. Most of life's most precious experiences never make it into a magazine or television – to do so would undermine the legitimacy of the garbage that does make it into the media. I will no doubt come back to this theme but for now just to say that a community of the mind has to be a community of diversity... and sometimes of extremes.



Some of the info above may be old but the sentiments are still alive. However, the blog structures have changed and will post more on that soon.

Alive and Kicking

I haven't posted on here for a while. My situation has changed and I will update this in the coming days.

Firstly, I am going to copy a couple of posts on the other blog I created, MWAH!, and then close that down.

I would also like to thank those who left comments on Technorati. Was a shame that they didn't leave any comments on this blog, as I thought nobody was really reading it. However, the compliments were much appreciated and although I may not update this blog very often it did make me think it is worthwhile leaving the information online.

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