I didn’t originally intend to pick this topic for day one – I actually wrote a short piece on the internet and how wonderful it is for housebound people. I kind of think that “why I write about my health” is a clichéd way to start… but my husband pointed out that it’s actually really important. I am doing this for a reason, not just to pass the time. So – my pro-internet piece has been scrubbed and replaced with this! Much thanks to him for his proof-reading and idea-giving efforts; I am much too exhausted to produce this kind of thing without support right now.
Although at first, I just wanted a place to share my ideas and experiences, it becomes very clear after spending any amount of time in the world of ME that there are serious issues involved. There is a lot of ignorance about ME, both in the general population and amongst healthcare providers. The former is perhaps understandable, the latter utterly unacceptable. A result of this is that even amongst patients and carers, there is much confusion. So, part of why I write is to explain things, from the basic knowledge that the general public should know, to new research or interesting studies.
On the human side of things, I want to share my own experiences to show how it is for someone to live with this disease, so that the appalling suffering behind the closed doors and blacked out windows of thousands of homes in our country, millions across the world, is made plain. On the scientific side, I want to share research and make the difficult and inscrutable, understandable to the everyday person.
In wider issues, disability rights in this country are being taken away by our severe right-wing government. The poor, sick, disabled, old, young or merely unfortunate are demonised and stripped of the little that they have to survive on. Doctors are paid to lie about their patients; those who claim to represent the people, are crushing the people under their feet. I refuse to stand by and let it happen – though it may well happen despite all our efforts.
It is particularly hard for all those with “invisible” illness; the current assumption is that if you can’t see it on the surface, it doesn’t exist. Despite the fact that this is obviously foolish when examined, most people don’t take the time to think about it at all, and happily pass out “scrounger”, “defrauder”, “hypochondriac” and “liar” labels to anyone they like. ME poses it’s own issues here, since the tests which show abnormalities are not routinely available on the NHS.
I want these to change, I want all of it to change, so I tell people about the truth and hope that one day, it overtakes the lies out there already. I realise that the awareness I raise, or the insight I glean, might not make much difference to the world – but I would rather stand up for what is right, despite all my limitations, than stand back and let what is wrong win.
Finally, I write about what doesn’t change with illness – following after Jesus. Physical illness has given me much time to consider what the important things in life really are, and this is one of them – the most important if it has any importance at all. I want to be able to encourage others, and share the musings of my mind. I wish that one day my blog returns to what it originally was, just this topic, and that there will be no need at all for patient advocacy or raising awareness. I write for a better world, but I know, like anyone who has seen even a glimpse of the evil and corruption endemic in our culture, that I will probably never see it. Not in this life.